tag:blogger.com,1999:blog-6493028102646552342024-02-21T01:00:38.940-05:00The 29 Year Old Tin ManBryan's Journey with a New Heart!Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-649302810264655234.post-3306067638914530222014-05-12T15:41:00.000-04:002014-05-12T15:41:59.330-04:00Three Years Out & Change of Venue<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Courier New, Courier, monospace;"><b>3 Years</b></span><br />
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<span style="font-family: Courier New, Courier, monospace;">This past Sunday, Mother's Day, marked 3 years since my heart transplant. I can't believe it's been that long already! I can remember the events leading up to that day like they were yesterday. This year was particularly bittersweet since it fell on Mother's Day. It's a rough holiday to begin with but mixed with all the emotions involved with my Heart Day, it was extra difficult. Although my mom wasn't there physically for my transplant, I know she was watching and probably had one of the best seats in the operating room.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Columbia University Medical Center: My new <br />home for post transplant care!</td></tr>
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<span style="font-family: Courier New, Courier, monospace;"><b>Goodbye HUP</b></span></div>
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<span style="font-family: Courier New, Courier, monospace;">With it being my three year anniversary I have decided to make </span><span style="font-family: 'Courier New', Courier, monospace;">a rather big change in my post transplant care. I have decided to leave The Hospital of the University of Pennsylvania and transfer my care to Columbia University Medical Center in NYC. This change has nothing to do to reflect the type of care I received at Penn. They have been absolutely wonderful. This is merely a convenience issue. I have blessed enough to go three years without any rejection or other complications and feel a transplant center closer to home is simply more practical for both myself, and Tony, who takes off to be with me for all my appointments.</span></div>
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<span style="font-family: Courier New, Courier, monospace;">This is not a decision I came to lightly. I interviewed several transplant centers in New York City to see which one would be the best fit for me. One thing I learned was that every transplant center has entirely different protocols for how they treat patients post transplant. This also played into my decision of Columbia. Although they typically continue with biopsies for 5 years post transplant, after reviewing my chart and seeing that HUP discontinues after 2 years (a rule they put into affect after my 2 1/2 year biopsy), my new doctor, Dr. Restaino, decided to amend the protocol for me and I could continue with no biopsies. This doesn't mean my third annual will be routine. Since I will be having it at Columbia on May, 28th, it will consist of the usual blood work, echo, and X-ray but 2 new tests will be in the mix. Along with the blood work, they will be doing an <a href="http://en.wikipedia.org/wiki/AlloMap_molecular_expression_testing" target="_blank"><b><span style="color: #990000;">AlloMap</span></b></a> test, which is a blood sample taken to test for rejection. The second new test (for me) will be an <a href="http://www.webmd.com/heart-disease/angiogram" target="_blank"><b><span style="color: #990000;">angiogram</span></b></a>. I will post after my annual and let you all know how the results go and my first experience at Columbia goes.</span><br />
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<span style="font-family: Courier New, Courier, monospace;"><b>Thank you</b></span><br />
<span style="font-family: Courier New, Courier, monospace;">I would like to take this time to thank you all for your continued support. Not just my friends and family, but also every surgeon, doctor, nurse, social worker, nurse's aid, </span><span style="font-family: Courier New, Courier, monospace;">secretary, phlebotomist and lab technician at Penn. You have been an intricate part of my journey both prior and post transplant. There is a place in my heart for each and every one of you in my heart and I will never forget you. I look forward to this editing new journey with Columbia and hope you continue to support me along the way.</span><br />
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<span style="font-family: Courier New, Courier, monospace;">-Bryan</span><br />
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<br />Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-26810847401233673232013-05-11T09:44:00.000-04:002013-05-11T09:44:02.732-04:00Two Years<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Courier New, Courier, monospace;">I can't believe that it's been two years already. I remember it like it was yesterday but I suppose something that monumental is hard to forget. Everyday I still feel stronger and am amazed at how well I am feeling.</span><br />
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<span style="font-family: Courier New, Courier, monospace;">This past year has been quite a whirlwind. I fell in love, traveled to Italy, Colorado and fulfilled my life long dream of going to the Olympics in London. This year I plan on slowing down and getting a bit more grounded. I'm hoping to find a job soon and I'm looking forward to beginning the next chapter of my life.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">The 2013 Hrt4Bryan Team</td></tr>
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<b><span style="font-family: Courier New, Courier, monospace;">18 Annual Donor Dash</span></b><br />
<span style="font-family: Courier New, Courier, monospace;">A few weeks ago, I participated in the Annual Donor Dash in Philadelphia with so many of my friends. I successfully completed my first 5k and I'm not going to lie, it was really hard. I'm so proud to have accomplished it and I cannot wait to do it again next year. Team Hrt4Bryan had 16 members this year and we raised over $6500! Even Reagan participated in the fun and did the 3k walk. A huge thank you to everyone who donated to me, my team, and my teammates. The money goes to such a great cause, The Gift of Life Donor Program. In total, the event raised more than $415,000.</span><br />
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<span style="font-family: Courier New, Courier, monospace;">I want to thank everyone who has supported me from the start of this, more than two and a half years ago (nine if you count my first bypass in 2004) and I look forward to your continued support in the future. I would not have made it through with out you.</span><br />
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<span style="font-family: Courier New, Courier, monospace;">Thanks again,</span><br />
<span style="font-family: Courier New, Courier, monospace;">Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-68074912106396064832012-12-10T10:00:00.000-05:002012-12-20T17:32:48.176-05:00Worst. Biopsy. Ever!<span style="font-family: Courier New, Courier, monospace;">A couple of weeks ago (November 29th) I went for my year and a half biopsy and although all results came back fine, the procedure itself was horrible. Before I go into that, let me recap a little but that's happened since my last post.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Standing in front of the Tower Bridge with the Olympic<br />
Rings hanging from the upper walkways.</td></tr>
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<span style="font-family: Courier New, Courier, monospace;"><b>London 2012 Olympics</b></span><br />
<span style="font-family: Courier New, Courier, monospace;">As many of you know, in July I traveled to London for the Olympics. This was my first trip to London and it was absolutely amazing! Although I was only there for the first ten days of competition I still saw as much as possible. Event wise I saw beach volleyball, basketball and I went the the rowing finals. I didn't get to see any of Team USA until the rowing finals (we won bronze) but I still enjoyed every second of it. As for sights around London, I saw pretty much everything there was to see. From a tour of Buckingham Palace to the Tower Bridge. There wasn't a spot that I didn't try to see. I absolutely loved London and being there during the Olympics added extra excitement around the city. I recommend everyone go to the Olympics in their lifetime.</span><br />
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<span style="font-family: Courier New, Courier, monospace;"><b>Summer and Fall</b></span><br />
<span style="font-family: Courier New, Courier, monospace;">I spent the rest of the summer relaxing and amping up my job search (which has still been unsuccessful). I spent Labor Day in Cape May with Tony and went to a couple of concerts.</span><br />
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<span style="font-family: Courier New, Courier, monospace;"><b>Thanksgiving Weekend</b></span><br />
<span style="font-family: Courier New, Courier, monospace;">Tony and I spent Thanksgiving in Richmond with his college Roommate James, his wife Kathy and their 2 daughters. James works for UNOS. The following Monday, I went to visit the UNOS headquarters and saw the National Donor Memorial. I also got to meet Walter Graham, the CEO of UNOS as well as Andre, the gentleman who HUP talked to about making me status 1A-E (which eventually got me my heart). Everyone who works there seemed very happy to meet a transplant recipient, especially a heart recipient. It was such a great experience going there and meeting so many people who help change peoples lives every day. I also go some serious UNOS swag!</span><br />
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<span style="font-family: Courier New, Courier, monospace;"><b>18 Month Biopsy</b></span><br />
<span style="font-family: Courier New, Courier, monospace;">Back to "the incident."During the entire biopsy I felt as if the woman doing the procedure was unsure of what she was doing. And being that I was laying on my back, head tilted to my left and able to see to monitors, my worst feelings were being confirmed. When they take the actual piece of my heart, they us a fluoroscope to get a live image of the pinchers in my heart. During a typical procedure the fluro is on for no more than two minutes and they take about this samples. This time however, when the procedure was over the fluro time was 5 minutes and 14 seconds and she took EIGHT samples! immediately following my upper chest/shoulders where in pain, especially when I took a breath in. I told the NP in the clinic when I saw her and was assured it was nothing to worry about but if it wasn't better then call later in the week. The week went on and better it did not get. That Saturday night, the pain was so bad I called down to HUP and the NP on call told me I should go to the local ER. Tony and I decided it would be best if I went to The Valley Hospital since I have a history with them and after transplant, my medical records where still being sent there. The doctors thought that I had a Pulmonary Embolism, which is a blockage in the main artery in my lungs. After a few hours and a CT, it turns out it was not a PE but they think it was just my heart muscle itself was very sore from the biopsy (I'm assuming because it took so long and she didn't know what she was doing). I spoke with my NP down in Philly the following week and told them that, although I understand that HUP is a teaching hospital, I no longer want them teaching on me. I'm glad to say that I am now feeling much better and all the pain is gone.</span><br />
<span style="font-family: Courier New, Courier, monospace;">There's still one other lingering medical issue that I'm currently going through but I will save that for another post. It should hopefully be cleared up in a week or two (fingers crossed!).</span><br />
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<span style="font-family: Courier New, Courier, monospace;">As the holidays approach and everyone is picking out gifts for their loved ones, take a moment and think of giving a stranger the gift of life and becoming an organ donor. You can do so by clicking <b><a href="http://www.donors1.org/register/" target="_blank">here!</a></b></span><br />
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<span style="font-family: Courier New, Courier, monospace;">Thank you all for your continued support and I wish all of you a Happy Holiday Season and a very blessed New Year!</span><br />
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<span style="font-family: Courier New, Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-1528047034142642932012-07-11T15:00:00.000-04:002012-07-11T15:00:03.610-04:0014 Months. 15 Days.<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Wow, I cannot believe it's been 14 months since my heat transplant. It feels like just yesterday I received my new heart. I know it's been a while since my last post but every since I made it to the one year mark, I've been pretty busy. All of my annual test came back perfect. GEtting the tests done were the hard part. They were unable to access my vein during my biopsy and couldn't get a clear picture of my heart during my echo. Also, there seemed to be something with my lungs when they got my x-ray back because I needed to do another breathing test, which came back fine. Once all my tests were finally completed my doctors said that all my numbers were so good that if they hadn't known I had a heart transplant, they wouldn't' be able to tell!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-family: inherit;">A view of Venice</span></td></tr>
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">A few days after celebrating my anniversary, I spent 2 weeks in Italy with Tony and his parents. It was truly an amazing trip! We spent time with his family there as well as visiting the usual Italian cities such as Verona, Florence, Venice and even spent a day in Switzerland! I got to see some of the greatest works of art by some of the most famous artist and I have never seen such beautiful churches!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-family: inherit;">Tony & I on Pike's Peak</span></td></tr>
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">A week after returning from Italy, Tony and I flew out to Colorado for a long weekend for his friends wedding. This was my first trip to the rocky mountains and they are truly awe inspiring! While taking a cog train up to the top of Pike's Peak (14,110 ft), I couldn't believe how clearly you could see how the mountains were carved by glaciers millions of years ago. It was also great to meat some of Tony's friends from college and see where he went to college. The weather on both trips was gorgeous! We were in Italy for 2 weeks and had one day of rain and it was in the 90s while in Colorado. One theme that seemed to have followed us along our journeys were natural disasters. In Italy there were some big earthquakes (luckily we didn't feel them and where we were there was no damage) and in Colorado wildfires broke out.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-family: inherit;">USA! USA! USA!</span></td></tr>
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Also while in Colorado, we drove down the US Olympic Training Center, which for anyone who knows me, I was ecstatic about! I saw Olympic medals and torches from the 1984 LA, 1996 Atlanta and 2002 Salt Lake City Games! We saw where athletes like Michael Phelps train and he was actually on the campus while we were there! It was between training so he was most likely resting or eating some his daily 16000 calories he eats while he trains. We also saw the shooting center, weight room, wrestling area as we'll as the Dream Team's basketball court and the men's gymnastics training area. 15 days from today I will embarking on my next trip which will be to London to cheer on Team USA in person! I'm so excited I can't even describe it! I have tickets to Beach Volleyball, Basketball and I will venturing outside London for the Rowing Finals so I will see a medal ceremony! I'm still trying to secure tickets to the Opening Ceremonies, the most elusive tickets to find, but I'm confident I will find a way into the stadium!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I could go on for hours about all my trips but I don't want to bore you all to death. I will update again once I return from London. Thank you again for all of your support throughout the last 2 years and I look forward to continuing to heal and live my life to the fullest!</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-51904256957199490022012-05-11T06:00:00.000-04:002012-05-11T10:34:51.734-04:00"How Do You Measure A Year In The Life?"<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I know it's been a while since I've posted but this is such a great reason to get back to it! Today marks one year since I received my new heart! I can't believe it has been a year already. It feels like it was just yesterday they came in and told me I would be getting a new heart. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeVZbc8q8ffQ1KuukZkT4dyj-BjqgLFdYdFxiG1Fv_HOt0jGS6ekGa2S03jFjiUQh3dzp0XB8XUubryAyReeomceT5_CHWQ_hW5BB_7x7By-b8t86kP0f5ref7ccYZFB7yRBDjbbys-QXH/s1600/458955_369442709765461_173165579393176_1020407_1186042731_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeVZbc8q8ffQ1KuukZkT4dyj-BjqgLFdYdFxiG1Fv_HOt0jGS6ekGa2S03jFjiUQh3dzp0XB8XUubryAyReeomceT5_CHWQ_hW5BB_7x7By-b8t86kP0f5ref7ccYZFB7yRBDjbbys-QXH/s200/458955_369442709765461_173165579393176_1020407_1186042731_o.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team hrt4bryan at The Dash</td></tr>
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Besides my one year anniversary, I've been up to quite a lot the past month. In April, I participated in the 17th Annual Dash for Donor & Tissue Awareness and it was truly inspiring event. They said it was their biggest success yet with over 6,000 people participating! My team, hrt4bryan, managed to raise over $1,500 even though there was only six of us! I mention the number of team members because next year I want the team to be even bigger and better! I also plan on taking part in the 5k run and not just the walk! I would like to get as many people as I can to join the team and participate with us in either the 10k run, 5k run or 3k walk and if you can't participate I ask that you donate towards the team! I'm brining this up now because I plan on the team having great shirts to help with better performance and make sure we all have a great time! If you're interested in Joining the team send an email to <b><a href="mailto:hrt4bryan@gmail.com">hrt4bryan@gmail.com</a></b> and I'll keep you posted as to when you can sign up and all the other information!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I also went down to Philly earlier this for my "annual" appointment. Unfortunately, it didn't go as planned. Once again, my vein collapsed and the biopsy and right heart cath were not able to be preformed. Although I was bummed they assured me that it was not my fault and despite my efforts to keep hydrated, my heart is working too well and is allowing my body to process liquids better than expected. They also said that the combination of my naturally small veins, scar tissue from privies biopsies and the lidocaine used to numb the area is a factor into why it collapsed. I will going down to Philly again on Tuesday for a Dobutamine Stress Test but they will not be able to do a biopsy the same day. The biopsy is rescheduled for May 30th, after I return from my trip to Italy. They are not too worried about the results since I have never showed any signs of rejection in the past year.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsFnDjq6AnjaLHil9NcHsnrRNfzuH91Mz6JrD0Q-13t6DPZricrkXipIngAWJj31Xknup11_CZV__KAp_OCesrG2GGpCLO0VlUlTUIfRUVnprn6FlXpa0ngN5zlUer9NUf6XVO_fK48ffA/s1600/463274_10150806427294869_572289868_9197697_1958142035_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsFnDjq6AnjaLHil9NcHsnrRNfzuH91Mz6JrD0Q-13t6DPZricrkXipIngAWJj31Xknup11_CZV__KAp_OCesrG2GGpCLO0VlUlTUIfRUVnprn6FlXpa0ngN5zlUer9NUf6XVO_fK48ffA/s320/463274_10150806427294869_572289868_9197697_1958142035_o.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A photo of me last weekend, a little<br />
less than my 1 year anniversary</td></tr>
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Although I celebrate my new lease on life today, I can't help but feel for my donors family as they are mourning the anniversary of the loss of their family member, something I know all too well. Especially with this weekend being Mother's Day. This last year has truly been so amazing and I have learned to live each day to it's fullest and take nothing for granted. So to answer the question I asked in the title of this post, you measure it in love. I learned that saying in High School when I saw the Broadway musical Rent, from which the quote is from, but these words have never meant so much to me. Without all the love and support that everyone has showed over the past year I would have never been able to get through it. I can't thank you all enough and I look forward to continue my very long journey down the yellow brick road!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Bryan</span><br />
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<br />Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-85740626738913313402012-03-28T19:06:00.001-04:002012-03-28T19:07:05.652-04:00Tin Man Turns 27!<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Today is my 27th birthday. This may not seem like a big deal, but given my condition about a year ago, it's a birthday tab I might not have made it to with out receiving my new heart. My Facebook page has been blowing up with birthday wishes and you may also notice the blog has been changed to reflect my new age. I guess this means that I've officially entered my late 20's. I'm celebrating with friends and family this weekend in what I'm hoping will be one of my best birthdays yet!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">In Philly news, I won't have to back down for a biopsy until May 8th which will be my annual checkup! Don't forget though, I will be down in two and a half weeks for <a href="http://dash2012.kintera.org/faf/donorReg/donorPledge.asp?ievent=1008527&lis=1&kntae1008527=9090441D6E664FAF894508EF772108F8&supId=350022952" target="_blank">Dash for Organ and Tissue Donation</a> and there is still time to support me!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Thank you for all of your support the past year and I link forward to all the great things to come with my new age! I couldn't have gotten here with out you!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-50756890565405224922012-02-16T14:41:00.001-05:002012-02-16T14:43:36.834-05:00Bitter Sweet Weeks<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRncCzvCo0lY_JXhOewptGVlL8ZCgEcVAPTZGQCuaURhL_TLNCTBH19rh46FXYvvEpcBc1bjc-GnTpLhwLga-IrEo79Z6R77v04o-Py4RjVfFZoQw52XeWQgeCe5tRKV7Ni-_8tlrPKPSc/s1600/DSCN0973.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRncCzvCo0lY_JXhOewptGVlL8ZCgEcVAPTZGQCuaURhL_TLNCTBH19rh46FXYvvEpcBc1bjc-GnTpLhwLga-IrEo79Z6R77v04o-Py4RjVfFZoQw52XeWQgeCe5tRKV7Ni-_8tlrPKPSc/s200/DSCN0973.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An old picture of me and two of my<br />
coworkers, Lauren & Debbie</td></tr>
</tbody></table><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The past few weeks have been just that. They've been full of ups and downs. Happy and sad. It started a few weeks ago when I went out for Happy Hour with my coworkers from Smiths Detection. It was so great to see everyone and it was supposed to be our last big hurrah before everyone got their warn letters with the date of when we would be getting laid off. Unfortunately, they started giving out some letters early so that put a slight damper on things. The next day I had to drive down to Philly for my follow up appointment with my Neurologist about my headaches. As I was driving down, I got a call from the HR department informing that my letter was being emailed to me. She explained that my last day of "work" would be March 30th. That was also the one year anniversary of the last time I worked in the office. That meant that, according to the company's practice, I would be taken off of insurance and have to go on COBRA. Thankfully since I would be getting let go in the end of March anyway, they made and exception and are allowing me to keep my benefits until then. I got good news from the Neurologist and he didn't make any changes to my medication for my headaches. The appointment literally took five minutes. So I drove two hours down and two hours back for a five minute appointment. I took some extra time to go visit my nurses on Founders 10, the unit I was in for the weeks before I got my new heart. It just so happened that two of my favorite nurses were working. I was so happy to see them! They made my time there so much more bearable. Not just those two, but the entire staff was amazing!</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIfoUKIz8NJiK2fdUXlccH6bxbb3Kpe3QXwXNtdLStSe40Eb4K_5wOMW_sqRUHOuQI3Waj9Vio7NOqSyvv0R5SYe3Y8aT8N_78GqGsvh6J31h19KByMW8xKveZ3NIeWCUrQ6fls6NZuLwm/s1600/blankpage.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><img border="0" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIfoUKIz8NJiK2fdUXlccH6bxbb3Kpe3QXwXNtdLStSe40Eb4K_5wOMW_sqRUHOuQI3Waj9Vio7NOqSyvv0R5SYe3Y8aT8N_78GqGsvh6J31h19KByMW8xKveZ3NIeWCUrQ6fls6NZuLwm/s200/blankpage.jpg" width="200" /></span></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">A week and a half later, I was back down to Philly for my nine month biopsy. As has been the case since being off prednisone, I continue to show no signs of rejection and all of my "levels" are right where my doctors want them to be. While I'm very excited that I continue to get healthy and haven't had any issues since my transplant, it makes me sad that after all this effort to get healthy I will not have a job to return to. I know that this, as well as most things that have happened to me in the past year and a half, are beyond my control. I just feel like every time I get back up from one thing, I get kicked down by another. I'm looking at 2012 as a year of new beginnings and finally ending so many chapters of my life. The scariest part is that as these chapters end, there is so far nothing to write in the upcoming ones. That being said, I have found out that even though I am still on long term disability I can still get a part time job to acclimate myself back into the working world until I am cleared to return to work on a full time basis. My next biopsy is scheduled for March 7th. After that, biopsies will be less frequent, although I'm confused as to what it will be. I thought it would be two months (for my annual) and then it would be three moths after that but the said six weeks after March. I will clarify this when I go down in March.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyrnuIF3K-He0zyM2ydhfIp5zZ2QGKmoFME5i2ZPOHLSMs4R8jDeC89Lcu0uk5N1Op7b7aVcuv2XZutGyVc2BITzn0JrtYDdB_1EJ2JEFwKbzDKRFwi0uJ3KgsYex6ZB1AmiiHbLNx6HlN/s1600/DonateLifeLogo1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyrnuIF3K-He0zyM2ydhfIp5zZ2QGKmoFME5i2ZPOHLSMs4R8jDeC89Lcu0uk5N1Op7b7aVcuv2XZutGyVc2BITzn0JrtYDdB_1EJ2JEFwKbzDKRFwi0uJ3KgsYex6ZB1AmiiHbLNx6HlN/s200/DonateLifeLogo1.jpg" width="198" /></span></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">On a happier note, I woke up this morning to find out that a girl I went to grade school with got a much needed pancreatic transplant! I was so overjoyed to hear this. She has been through the ringer and if anyone deserves it, she does. She is probably one of the strongest people I know. I would also like to take this time to remind you that in less than two months I will be participating in the <a href="http://dash2012.kintera.org/faf/donorReg/donorPledge.asp?ievent=1008527&lis=1&kntae1008527=60EB259FB66246EF9E1A6910CB799499&supId=350022952" target="_blank"><b>17th Annual Dash for Organ & Tissue Donor Awareness</b></a>. Please <b><a href="http://dash2012.kintera.org/faf/donorReg/donorPledge.asp?ievent=1008527&lis=1&kntae1008527=60EB259FB66246EF9E1A6910CB799499&supId=350022952" target="_blank">support me</a></b> in this incredible event by making a donation towards my 3k walk. Without the generous gifts that donors provide, so many people would not be here today. <span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">One person donating their</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> vital </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">organs</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> and tissue </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">can save</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> the </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">lives</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> of as </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">many</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> as eight other people - and make a difference in the </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">lives</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> of </span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"><em style="color: black; font-style: normal;">many</em></span><span class="Apple-style-span" style="color: #222222; line-height: 16px;"> more.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><span class="Apple-style-span" style="color: #222222; line-height: 16px;">As always, I thank you for your continued support!</span></span><br />
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<span class="Apple-style-span" style="color: #222222; font-family: 'Courier New', Courier, monospace;"><span class="Apple-style-span" style="line-height: 16px;">Bryan</span></span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-33098464903025712462012-01-13T16:45:00.000-05:002012-01-13T16:45:11.511-05:008 Month Biopsy Results & the Annual Dash!<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">So i went for my eight month biopsy earlier this week and it was my first biopsy since I've been off prednisone. I'm pleased to announce that every thing came back great and I continue to show no signs of rejection! All my levels came back perfect except for my liver enzymes. They were slightly elevated but aren't sure why. They thought it might have been a side effect from a medication but I am not on that medication. The docs are sending a script for me to have blood work done to see if it has gone down. Besides a biopsy, I also had an echo cardiogram. The results from that were fantastic! My eject fraction rate was at 60% which is perfect! Before transplant I think it was down around 10% so this is a huge improvement! And considering it's a new heart, I guess that's expected.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0NmDBbvuf2wV1v2ZbZYARjr-OwWa_T_bhaeAUioyb_zxM6AQHE8g3pKNJptLLntkzaMGkOvOLCbczbDPmX_UEKhGob0NGlDP99JnBiKi4E-WbEYJ8Xbe2s1XVXKsPRc2KGNok3HSeJzlt/s1600/dash12_logo.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0NmDBbvuf2wV1v2ZbZYARjr-OwWa_T_bhaeAUioyb_zxM6AQHE8g3pKNJptLLntkzaMGkOvOLCbczbDPmX_UEKhGob0NGlDP99JnBiKi4E-WbEYJ8Xbe2s1XVXKsPRc2KGNok3HSeJzlt/s1600/dash12_logo.jpg" /></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">This April, I am pleased to announce that I will be participating the the <b><a href="http://dash2012.kintera.org/faf/search/searchTeamPart.asp?ievent=1008527&lis=1&kntae1008527=60EB259FB66246EF9E1A6910CB799499&supId=0&team=4939769&cj=Y" target="_blank">17th Annual Dash for Organs and Tissue Donor Awareness</a></b>! As many of you may know, last year several of my friends participated in my honor. This year we have created a Hrt4Bryan Team and I am so happy that I will be able to participate. You can make donations to the team or to me specifically by clicking <b><a href="http://dash2012.kintera.org/faf/search/searchTeamPart.asp?ievent=1008527&lis=1&kntae1008527=60EB259FB66246EF9E1A6910CB799499&supId=0&team=4939769&cj=Y" target="_blank">here</a></b>. I am hoping to recruit some more friends from up here in North Jersey to participate as well (so if you are one of those people reading this, be prepared!). Any amount you can donate is greatly appreciated. I have set up a personal goal of $500 but I know that with all of your support I will be able to surpass that so please help! I will be taking place in the 3k walk but some of my other friends will be doing the 5k run! This is the ultimate test for me. I feel that if I am able to finish the walk I have made huge strides in my recovery, especially since it will on have been eleven months after my transplant. It is also meaningful because at this time last year, I was unable to walk a single block without getting tired and out of breath.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Thank you again for all of your support the last eight months! There is no way I would have been able to make it through all that has happened with you! Also, for more up-to-date news as it happens, be sure to check out the <a href="https://www.facebook.com/Hrt4Bryan" target="_blank"><b>Hrt4Bryan Facebook</b></a> page and "Like" it if you haven't already!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-92067061227101440312011-12-30T14:27:00.000-05:002011-12-30T14:27:05.828-05:00Bye Bye Prednisone & 2011!<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">So my December biopsy came back great. Still no signs of rejection and I am officially off prednisone! I'm so happy to be off of that drug. Even though I was only on 2.5mg I was still having side affects (but they could still be lingering from when I was sick in November and they increased it). Mostly with the body acne. Hopefully it will clear up within a week or two. Now that I'm off prednisone, I need at least three good biopsies before my doctors will even consider two big things. The first being returning to work. As of right now, they say may but could be as early as April a long as my biopsies show no rejection and I don't keep getting sick. That being said, I was sick last week with a cold. My sinuses were throbbing, nose was stuffed and I was sneezing an coughing like crazy. Luckily I was able nip it in the bud and took robitussen and cleaned out my sinuses with a Nettie Pot. The second thing that would happen is my biopsies would be every three months instead of every four weeks! I'm super excited about not having to make so many trips to Philly. Of course the hitch is that my one year anniversary, and subsequent annual checkup, is in May. So my three months won't really start until after that. I can't believe I'm already talking about my one year anniversary. It feels like yesterday I was in the hospital waiting for the heart. </span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Some other good news is that I joined a new gym so I continue to build up my strength and endurance. Hopefully I'll bulk up a little bit too so people will stop complaining about how skinny I am. I have the same body type as my mom. Not much else I can do about it besides getting fat, which is not an option.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">That's all I really have to share for now. My next biopsy is scheduled for January 10, 2012 and I'm hoping for an even happier and healthier new year. Not just for me, but for all of you as well! My annual "Year in Pictures" video is below. I will get it up on YouTube and provide a link to the hi-res version soon. Happy New Year!</span><br />
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<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwe5K1f0sWWdjOUOks8N5cz5QNFXYAvzjQmPgHUAkkh2Nzah9xwdpSrpiEwW5r0MLhNDk2OBNP3EovuTx117Q' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-73860896938570988552011-12-11T12:42:00.013-05:002011-12-13T00:11:51.262-05:00Yellow Brick Road Gets Bumpy (and Heavily Medicated)<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Ok, so I know I haven't posted in a while. It's been an interesting past few weeks. It started with me getting a small bout of food poisoning the beginning on November. My friend Cait had it as well. She recovered in a day or too while I suffered for a couple of weeks. When I went down to Philly for my November biopsy, I told my docs and they drew extra blood work to see what it was (they also wanted a stool sample but there was no way I was going to do that. Plus, I get very poop shy lol). </span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The biopsy results once again came back great. No signs of rejection and all my medication levels were where they were supposed to be. The blood work for my stomach however came back "inconclusive" but I was feeling better by this time so it was no worry anymore.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The following weekend I began to get a sore throat. I took Tylenol and cepecol drops to try to make it feel better but nothing seemed to help. I went to my general practitioner as soon as it started. The doctor I saw prescribed an antibiotic and did a strep test, which came back negative. After a few days of it continuing to get worse, I went back to my doctor. I explained how everytime I swallowed it felt like I was swallowing razor blades and the pain was shooting up into my ears. He prescribed me a Z-pack and increased my prednisone to 40mg a day. This was the day before I was supposed to go from 5mg to 2.5mg. I called my doctors in Philly to make sure the change was ok. They said it was fine but it would most likely cause my next biopsy to be pushed back because I need to be on the lower dose of prednisone for two weeks before I can have a biopsy. They also said that with me getting sick so frequently, it would probably be best if I didn't return to work yet. They pushed my return to work back to May. They said most transplant patients don't return to work before a year after transplant and that I was being very ambitious with hoping to return by November.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaFGwSpnZfYfdCyE90FPUjIDj5TaAhBNGLyRNCtLNA8g-_eoI9WnMZ5rq_VV8YQ-33UsZ41MiOAqzMOOy1fHY4qqm1QYPEC7RqWIEacB6WTLhIwUqEdAlvIRJwiFk-8Y53ob_MlpaHOQDx/s1600/prednisone-02.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaFGwSpnZfYfdCyE90FPUjIDj5TaAhBNGLyRNCtLNA8g-_eoI9WnMZ5rq_VV8YQ-33UsZ41MiOAqzMOOy1fHY4qqm1QYPEC7RqWIEacB6WTLhIwUqEdAlvIRJwiFk-8Y53ob_MlpaHOQDx/s320/prednisone-02.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Prednisone: A nasty drug!</td></tr>
</tbody></table><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I felt the side affects from the increased prednisone immediately. It was a big jump to go from 5mg daily to 40mg. I text my friend Nicole "The bitch is back" and her response was "I didn't know it left." This is what i have to deal with lol. Vicky noticed it first hand and unfortunately, my Dad took to brunt force of my moodiness but he was oblivious to it mostly so it was all good. I also noticed the side affects of the Z-pack with my stomach but that resolved itself once I stopped it so the whole stomach issue finally seems to be cleared up.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">After about a week with the increased medication I finally began to feel better and m</span><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">y next Biopsy is this Wednesday morning (pushed back one week). I have a couple meetings with the social worker and the insurance coordinator to help figure out what will happen once I get layer off from work, whenever that may be. They are trying to be advocates for me in trying to collect as much information as they can for me so things aren't so stressful for me. My doctors want me to avoid high stress situations. Easier said than done when your future is uncertain and people are being less than cooperative with them. But I'm trying to take things one day at a time and not worry about anything other than my health. There is also a Transplant Holiday Party Wednesday night but unfortunately I won't be able to attend. With having to be up so early to get to the hospital I would be completely exhausted and then would have to still drive home after. If someone was coming with me I would feel more comfortable with going. Hopefully next year I can attend.</span><br />
<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">That's all the news for now. Hopefully my health continues to get better and I don't get sick again. I feel like this will be extremely difficult with it being cold and flu season but hand sanitizer and I have become even closer the past few weeks. I will post the results of my biopsy soon. I would like to say by the end of the week but that's being ambitious lol. Thank you everyone for all of your continued support.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-79010224899267005962011-11-10T14:57:00.000-05:002011-11-10T14:57:37.484-05:005 Month Biopsy Results (4 Weeks Late) and a Bunch of Other News<b>5 Month Biopsy (October)</b><br />
My biopsy last month went very smoothly. I was hydrated and Dr. Goldberg was done before I even knew he started. The biopsy showed that I continue to show no signs of rejection. My blood work however, was a little different. It showed that my Tacrolimus levels were very low and if they didn't increase, they would not be able to lower my prednisone from 7.5mg to 5mg. They increased my daily dose of Tacrolimus and sent me a script to get blood work done the following week to ensure that, if my levels were at an acceptable level, I could decrease my Prednisone two weeks before my next Biopsy. I had the blood work done and my levels were in the acceptable range (between 8 & 15) and they were able to decrease my prednisone to 5mg the following week!<br />
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<b>Dentist Appointments</b><br />
A couple days before my October biopsy, I had my first dentist appointment since my transplant. Once again, I have no cavities (never had one in my life!). My dentist wanted me to look into getting my wisdom teeth removed. He has been asking me to get them out for a couple of years but with everything going on with my heart, it has been put on the back burner. I spoke with my doctors in Philly, and although they preferred that I wait a year after transplant before having a surgery, they agreed to sign off to allow for me to have them taken out when I told them I would like to return to work without any surgeries in my future. I met with the Oral Surgeon this week, Dr. Alberto who is the head of oral surgery at UMDNJ, and after she looked at a more recent panoramic X-ray of my mouth, she determined that the risk of taking the the impacted teeth out way the benefits. My lower wisdom teeth, are very close to the main nerve in my jaw and there is a possibility that I may not get feeling back in my jaw. The upper wisdom teeth are very close to my sinuses and they may have to do some reconstruction to make sure they are not affected. Since I am immunosuppressed, it may take longer to heal and I am at a higher risk of infection. Now, there is also the issue of my "Baby Tooth." As some of you may know, I still have a baby tooth in my mouth that never fell out and the Adult Tooth is now impacted in my bone. She would also take this out and again, reconstruction would be necessary so as of right now, all dental work (on my wisdom teeth anyway) is on hold until they start to cause a problem, which so far, they haven't.<br />
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<b>Returning to Work</b><br />
I was scheduled to return to work on Monday November 21st, depending on what the oral surgeon said. Since the wisdom teeth will not removed I was planning on returning on this date. However, last week my boss Lauren called me and informed me that Smiths Detection's Morristown office will be closing and all employees will be getting laid off by the end of the fiscal year (July 30th, 2012). I spoke with HR and they said that if I was to return to work on the 21st, they would not be able to guarantee that I would be working for the six months needed to be eligible for state unemployment. Since I am already on Federal Social Security Disability, I may be exempt from the six month work period but I have been unable to get in touch with a state disability representative to get a definitive answer. If I am unable to collect state unemployment, my doctors will keep me out on Long term disability so I still have some form of income. If I stay on Long Term Disability, my benefits with Smiths Detection will run out the end of January, 2012 as that will be the twelve month period that the company keeps employees on their benefits. At that time I would either have to get individual insurance or go on COBRA.<br />
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I hope to get answers as to where I stand for unemployment soon. Until then, I am once again asking for your help. If you know of any one who is looking for a graphic designer or a company that is hiring one, please email <a href="mailto:hrt4bryan@gmail.com" target="_blank"><b>hrt4bryan@gmail.com</b></a> with the information and I will apply or reply with my resume. I thank you all in advance for your help with this and for all of your support throughout the past year.<br />
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I had my six month biopsy yesterday and I will update the blog with my results as soon as I get them. Thank you again for everything!<br />
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-BryanHrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-10457413903210632442011-09-27T12:39:00.001-04:002011-09-27T12:42:11.985-04:00September Biopsy Results<font face="Courier New">Sorry it took me so long to post the results from my biopsy two weeks ago but things have been a little crazy since I got back from Philly. So here we go, quick and to the point.<br /><br /><b>Dermatologist</b><br />The dermatologist took one look at my back and chest and asked if I was on steroids. I said yes and he said that was the cause. He gave me a wash to use twice a day in the shower and then an ointment to put on the affected area after (I might have posted about this already but I'm not sure). He said as I get weened off the prednisone it should get better.<br /><br /><b>Biopsy</b><br />My biopsy results came in and as usual, no rejection! They increased my pm dose of tachrolimus and starting tomorrow (the 28th) my prednisone will be down to 7.5mg! Also, my doctors filled out paperwork for me to return to work. I'm hoping they put a date down but since they faxed the paperwork to the office and mailed the original back to me I haven't seen it yet.<br /><br />My next biopsy is scheduled for October 12th. So I'm officially on a four week schedule!<br /><br />I'm still here in Grand Rapids at my Aunt Karen's house and I've been taking in ArtPrize as much as I can. I'll talk more about my trip in my next post once I get back home and settled.<br /><br />Thanks again to everyone for your continued support and I will keep you posted if anything changes.<br /><br />-Bryan<br /><br /><br />- Posted using BlogPress from my iPad</font><br /><br />Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-22163029744008167842011-09-12T16:40:00.000-04:002011-09-12T16:40:18.922-04:00"Wake Me Up When September Ends"<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I feel as if those lyrics from the Green Day song of the same title perfectly describe how I feel about this month. I've mentioned before how the past twelve months have Ben the most difficult of my life and out of all of them, September was probably the worst. I apologize in advance for this post being so long but there's just a lot going through my head that I need to get out. There's an update on my recovery and this weeks upcoming appointments at the end.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">A picture I took of myself while I was admitted in<br />
the hospital in Philly last September.</td></tr>
</tbody></table><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I started last September in the hospital for my first of many admissions at HUP. I missed so much in that week I was in the hospital as well. I spent my first holiday, Labor Day, in the hospital. I missed the birth of my family friend's twin boys, Peter and Andrew. I also missed my best friend Vicky's birthday. That week was also when they placed my PICC line which confirmed my status as a 1B and also my inability to drive until I received my new heart. I was not happy considering my car was barely two weeks old. Not to mention that my job had moved to a new office in Morristown which more than doubled my commute. The plan was already worked out though. My Mom would take me to work since she didn't have to be in her office until 9am and my dad would pick me up at 5 since he got out of work at 3:30. Little did I know that I was sitting in Philly, my Mom's condition was worsening at home. It was only a week earlier she and I we in the same city for my pre transplant evaluation. Sure she had to stop the one day we walked to the hospital but so did I so what the hell did I know?</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">To be honest, I didn't think this month would bring back so many memories last year. Last September was when the cracks that were to tear my life as I knew it apart really began spread. As I look back, the only light in that dark month turned out to be nothing but a huge waste of time and a burden that would, despite my best efforts over the next year, be too much for someone else to handle.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As I sit at home on disability this September just as I was doing last year, I can't help but laugh at how there are so many parallels as well as so many differences. Last year, I was unable to drive and all I wanted to was to go to the hospital to spend time with my Mom. This year, I am able to drive and feel as if I have now where to go. I would give anything to drive anywhere to spend time with my Mom again.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As I continued to recover and get ready to return to work at the end of the month, my Mom was going in the opposite direction. Looking back, I feel like she was sending all her strength to me knowing that I would need it more in the upcoming months than she would. I've never felt so helpless. I was sitting at home not able to drive while my Mom was sitting in a hospital bed. My Dad did his best to take me to the hospital when he got out of work and so did my Aunts. My aunt Judy had dropped everything at home to come to Jersey to take care of her baby sister and many times my Aunt Bonnie drove me home (in the opposite direction) from the hospital if my Dad just dropped me off. And then there was Kris who would drive up from Philly to see me as well as take me to spend time with my Mom.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">There a few days in September that I will remember like they were yesterday. I always thought the only day would be September 11th, but little did I know that I would feel the same pain that so many families felt on that day. The week before I was to return to work, I was told by my Aunts that my Mom would be going home by the end of the week with a "home nurse" service to visit and help my Aunt Judy take care of my Mom at home. The following day, Kris and I went to the hospital. Both of my Aunts were there and the tiny room became more crowded when two more women walked in the room. They introduced themselves as being from the home Hospice service. I lost my breath. This was the first time I had heard that my Mom would be going home in the care of Hospice. It took every once of my being not to break down right then and there. I kept my head down and all the talking in the room sounded like that of the teacher talking to Charlie Brown. I finally looked up to see my Mom looking directly at me with tears in her eyes. I knew she was upset that this was the way I had to find out about her going on Hospice. She had known. My Aunts had known. And I knew that she had told my Aunts not to tell me. I had to leave the room. I walked down the hall. I had no particular destination in mind, I just needed to get out of there. I could here Kris following me down the hall saying something about me walking fast (something that I didn't do too often since I was in heart failure). I found the pantry and got a bottle of water. I didn't want to hear whatever lies and BS he wanted to feed me. The truth was the my Mom was going home to die.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Later that afternoon my coworkers came to visit me. I hadn't seen them in three weeks and they had a surprise for me. They presented me with all the donations that my coworkers had given towards my medical and travel expenses to and from Philly. I was so overwhelmed by the support of my coworkers from around the world, most of which I had never met or even talked to.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My Mom came home the following day and the weekend was filled with family and friends going to visit with her. Her apartment seemed to always be full of people. I went on Tuesday to see her. I had to go to Philly for a check-up on Wednesday and I was returning to work (with my Brother now driving me to work) on Thursday.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I went back to work on Thursday, September 30th. It so good to everyone in the office. I spent most of the morning going through my emails and visiting everyone in the office. It wasn't too rough of a day but by time I got home I was exhausted and decided to take a nap instead of visiting my Mom. My Dad and I had just finished dinner when his cell phone rang. It was my Aunt Judy. Since he was doing dishes he told me to answer the call. As soon as I picked up I could tell by my Aunt's voice that something was wrong. She was thrown off by me answering my Dad's phone and asked to talk to my Dad. I heard him say we would be there in twenty minutes. He hung up the phone and said my Mom was being taken to the hospital and we would meet them there. My brother was also on his way to the hospital as well. I knew it was serious. Vicky and her boyfriend Chris were supposed to come over and visit when they got to of work. I called her and told her of the change in plans and she said she would meet me at the hospital. We got to the hospital after what felt like the longest drive of my life. The security guard sent us into the ER and told us to speak with a nurse at the nurse's station and they would tell me where to go. The nurse told us to follow a security guard to a room down the hall to meet with my family and the doctor would be in shortly. We found my family and a few minutes later the doctor came in to tell us the news were were dreading. My mom was "dead." That was the word that the doctor used. It felt so impersonal to say that way. Like she was a cell phone battery. I was in shock. In one month, my life went from cracking to being completely shattered.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The next week felt like a blur. I remember everything but I don't need to go into the details. It was probably the darkest days of my life. It was even worse than waiting for my new heart in the hospital. That's pretty much all I want to go into right now. Well, it's pretty much all i can go into with getting too choked up. Sorry for venting but it's just things running through my head which is leading to me not sleeping very well. </span><br />
<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">(More after the video)</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><b>Medical Update</b></span><br />
<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I still have the rash on my back and chest. I will be going to see a dermatologist tomorrow afternoon. The culture came back and said that it was caused by a type of bacteria that can't be cured by most antibiotics so the dermatologist should be able to clear up the problem. Then wednesday I will be going to Philly for another biopsy on Thursday. It's been three weeks since my last one and it felt weird not going down last week. After this one, my appointments will officially be every four weeks. I'm excited that my prednisone continues to get lowered. I'm currently at 10mg and two weeks before my next biopsy it should get lowered to 7.5mg. I am still doing well with cardiac rehab. I have to check how many sessions I have left but I should be done sometime in November which is perfect since that is also when I should be going back to work. I won't be able to go back until I've completed rehab. I will get the total number of sessions i have to go when I go on Friday.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Next week, my Dad and I are driving out to Michigan to see my Aunt, Uncle and cousins who live out there. It's going to be nice to get away from everything for a little bit. I also think we're going to a football game at the University of Illinois where my cousin is currently getting his masters degree (he got his bachelors degree there as well). We'll be back at the end of the month.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I will let you all know how everything goes with my appointments at the end of this week. Thanks for all of your support and to everyone who has been there for me the past year. I'm so blessed to have you in my life. It's really taught me who I can rely on in a time of need. Thanks again.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com2tag:blogger.com,1999:blog-649302810264655234.post-72308354997060345192011-08-30T09:15:00.000-04:002011-08-29T23:16:28.616-04:00Fishing, Biopsy & Mean Irene<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Sorry it's been so long since my last post. I've been quite busy with cardiac rehab and such. Let me start by letting you know how my appointment went with my GP about the rash on my back and chest. He did some research and found that it's not uncommon for someone after heart transplant to get a fungal form of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001826/"><b>folliculitis</b></a>. He took two cultures (on to check if it's bacterial and one to test if it's fungal) and prescribed an anti fungal cream to use at night before I go to bed and said to put Selsun Blue on 5-10 mins before I shower in the morning. I'm glad to report that it seems to be working! Now if I can only get rid of this damn acne caused by the prednisone! I've switched face washes and that seems to be helping but it's still something I'm self-conscious about. Also, I still have the hand tremors when I do simple things like write, try to eat and sometimes even drinking causes them. I continue to tell my doctors about it but they don't seem concerned with it. Hopefully as my medications come down they will get better.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Now onto some fun stuff. A couple weeks ago my Dad's friend took us fishing for fluke out in the ocean. We used to go every summer when I was a kid and I had forgotten how much fun it was! I turned my cell phone off and left my iPad at home. It was so nice to be disconnected from everything for the day. We caught a total of forty-seven fluke but only five were big enough to keep but we were busy having fun reeling in the fish so the day seemed to fly by! I hadn't seen my Dad's friends in years and it was great to see them and catch up. Hopefully we'll get to do it again next summer.</span><br />
<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As for my Biopsy last week, it went flawlessly! I began hydrating myself a few days before to make sure I didn't have the same problem as last time. As per usual, the biopsy came back with no signs of rejection! They also lowered my tachrolimus, took me off one of my sleeping pills and I will lower my prednisone to 10mg on September 1, which is two weeks before my next biopsy. That's right, I no longer have to go to Philly every two weeks, it's now every four weeks! But since there is a transplant conference on what would be my fourth week, I will be going a week early. So I went from every to weeks, to tree weeks and then I will be every four weeks. I'm very excited about that.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I briefly mentioned cardiac rehab before so let me go a little more into that. It's going really well and most of the time they need to tell me to slow it down because my heart rate is a little too high, but in a good way, not a bad way like it was pre-transplant. Going three times a week is a lot of work but I'm up for the challenge! I've also been wanting to start hiking just to keep busy on days I don't have rehab or on weekends. I also want to start getting into photography a little more so I'm trying to find a camera that would work better than the point and shoot I have now.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Last week I had lunch with my coworkers at Smiths Detection. It was so good to see them and walk around the office and say hello to everyone and let everyone know that I'm doing well in person. I'm looking forward to return to work in November, even though an exact date has not been set.</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimwm2bZOLgh5U1sysckYqh8g5j9jBblJUMdd3qf_sz4KqG0HKferDOSs7Evmv3sESJsG-xS8n1_bcx8u6rpieMjizVVVU_Lo3ueInsvo5vSqzhhr-7X_rxZX_5yXhty3kFLJbk70WiDjuY/s1600/irene.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="287" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimwm2bZOLgh5U1sysckYqh8g5j9jBblJUMdd3qf_sz4KqG0HKferDOSs7Evmv3sESJsG-xS8n1_bcx8u6rpieMjizVVVU_Lo3ueInsvo5vSqzhhr-7X_rxZX_5yXhty3kFLJbk70WiDjuY/s320/irene.jpg" width="320" /></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">And on top of everything else, I survive Mean Irene this past weekend! It wasn't bad by me, thank God. We had a bunch of branches down in the yard and the brook behind my house got pretty high, but nowhere near as high as it was during Floyd a few years ago. Other than that we we good. We didn't lose power, no water in the basement and by time I woke up on Sunday everything had past. I know I am fortunate because a lot of towns and even people a few blocks away were not as lucky as I was.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">That's pretty much all that's been going on with my recovery. I will let you know if anything changes and what the results of cultures are once they come back into my doctor's office.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As always, thank you all for your support through all of this.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">- Bryan</span><br />
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Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-8232947112531326802011-08-11T13:41:00.002-04:002011-08-11T14:29:51.073-04:00Aborted Biopsy, An Echocardiogram But All Is Still Good<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">So this weeks biopsy was somewhat of a disaster. I got to The Perelman Center bright and early. In fact, I was the first person there. I was excited because that meant I would have gotten out relatively quickly. I went in for my biopsy around 8:30 due a "scheduling problem" with the biopsy suite. Already behind schedule. As they used the ultrasound machine, they told me I was dehydrated and my access vein was a little small. They attempted to go in but had some difficulty. The doctor told me vein was as thick as a penny when it should be that of a quarter. He said he would make one more attempt and then I would have to settle for an echocardiogram. As he said that, the lidocaine, that he used to numb the area of my neck he would be going in, caused the vein to completely collapse. That meant a second attempt was Impossible. I became really upset because I was afraid my prednisone wouldn't have been decreased since they couldn't get a proper biopsy to check for rejection. I went back up to the clinic, got my blood drawn and waited to see the NP for my check-up while they scheduled my echocardiogram. I saw the NP and she said according to what she saw, everything looked good. I mentioned my side effects from the prednisone (the Acne on my face and the rash on my chest and back) and she took a closer look. After months of me complaining about the rash and saying the topical cream they prescribed wasn't working, she thought it was not a rash caused by the prednisone after all and that is should see my GP back home and if he can't help then I should see a dermatologist. She suggested one in dermatology at HUP but I said that, although it is easier for them to have me stay within the Penn Medicine Health System, I can't continue to drive down to Philly for doctors that I can see back home. The neurologist was one thing (I'll get into how that appointment last week went in a minute) but a dermatologist, who would want to see me again in the next week or so would be impossible. I have an appointment with my GP on Friday and will hopefully get an appointment with a dermatologist next week if necessary.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The NP called me yesterday afternoon with my results and said my echo looked good and blood work came back good as well. They lowered my tachrolimus AND my prednisone down to 12.5mg daily. That means that after my next biopsy on the 23rd, they should lower it to 10mg which means my biopsies will be every 4 weeks instead of every 2 weeks. Yay!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As for my neurologist appointment last week everything went well. The doctor said that my "headaches" are actually less severe migraines and prescribed a daily medication to help prevent them and if I do get one, take an Excedrin to get rid of it. He also prescribed a more heavy duty medication for when I begin to see symptoms of a more severe migraine. That medication should "abort" the migraine before it gets too bad. I don't have to see him again for 6 months so I have an appointment for late January.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I also began cardiac rehab last week and I didn't realize just how important it is. I thought I was doing good but when I think about it, I was just taking short, slow walks around my neighborhood. Now at rehab, things are getting amped up and they are really kicking my but. I do mostly cardio equipment to strengthen my heart and eventually will move on to bigger and better things to build some more muscle mass and then hopefully people will stop telling me how I need to gain weight.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Other than that, I have nothing really else to report. I will let you know how things go with my GP on Friday. Oh, and today marks 3 months since my transplant! Everyday I feel better bunt cardiac rehab showed me that I still have a long way to go. Thanks again to all of you for your continued support.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-18615580367971603512011-07-13T14:27:00.000-04:002011-07-13T14:27:56.132-04:002 Month Biopsy & Check-up<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Monday was the 2 month anniversary of my transplant and I was down in Philly to celebrate by getting a biopsy and a check-up with the transplant team. Since I had to be there at 7am, I went down the night before and as I arrived in the city Fireworks were going off on the Delaware River right next to the Ben Franklin Bridge. It was like they were celebrating my arrival! Not really but I like to dream lol.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I arrived at the Perelman Center at about 6:45am and was the 2nd on there which meant I would get to go right down to the Biopsy Suite and have my labs drawn there instead of after my check-up. The biopsy went much more smoothly than the last one. I mentioned to the Doctor that I had more discomfort after my last one and I think he took a little extra time to make sure he didn't cause any more discomfort than was necessary (which I greatly appreciate).</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">After the biopsy I headed back up to the clinic to meet with the Nurse Practitioner and go over my progress. She said everything was good and just moved around the times I take some medicines to try to help with my headaches. Speaking of the headaches, they have become a lot less frequent (only 2 or 3 times a week) and much less intense. They still want me to see a specialist about them so they can figure out what is causing them and prescribe the proper medication to treat them when I do get them. That appointment is scheduled for August 1st. I was also told that the 2 medications I have been taking at night to help me sleep should not be taken together (something about ending up like Heath Ledger). I was a little surprised by this only because I have been taking them together for the past 2 months and have still been having trouble sleeping. Instead I should try to take one or the other with a Benedryl to see if that helps but if it doesn't help, I can go back to taking the original 2 I was taking. Talk about confusing. She was worried that the over the counter Benedryl may not be strong enough since I have been taking the 2 prescriptions for so long but it seems to be working. They also want me to begin my Cardiac Rehab as soon as possible. I have been trying to get this started for the past few weeks. My cardiologist up here said his office would coordinate it so I can go to rehab at Mountainside Hospital. They said they faxed the information to the Rehab Center on June 27th but when I called the Rehab Center they said they never received anything from my Cardiologist's office but would contact him. I called back today and they have yet to receive anything from my Cardiologist which is very frustrating because my doctors in Philly are anxious to get me started in rehab. The sooner I begin rehab, the sooner I can return to work and start to get my life back into some sort of order.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I received the results from my Biopsy yesterday and there are no signs of rejection! They also lowered my prednisone to 17.5mg per day. I confirmed that once I get down to 10mg per day then my biopsies will be once a month instead of every 2 weeks like they are now. My next scheduled biopsy is on July 26th. I have already reconfirmed that this is the correct date and checked on the MyPennMedecine App on my iPad that it is in there for that date. I have my reservations for both of my upcoming appointments. I have really lucked out with Hotels. They have been having some great deals this summer so the cost has been pretty minimal for me to stay over the night before. I am so grateful for everyone who has donated to Hrt4Bryan to make the travel/medical expenses minimal for me, especially now that short term disability has run out and I am now going on long term disability for the next 5 months. I am also looking into the Gift of Life's Transplant House which provides housing to transplant recipients as well as their families when they need to travel to the city for appointments.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Now that I can drive I have driven myself to my last 2 appointments and continue to do so in the future. I get a little anxious when there is a lot of traffic on major highways so I will continue to stay away from the Turnpike and Parkway for the time being. Other than that things are going ok. I still have the rash/acne from the steroids I am on and my doctors said that probably won't clear until my dose is down to 5mg which is slightly disappointing because that seems so far away. Luckily it is mostly on my body and very minimal on my face. I have also began Therapy to help me deal with all the emotional stress that I been through the past year and how to cope with everything better than I have been.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Once again, thank you everyone for all of your support this past year. It has been a very difficult time in my life and I could not have done it without each and everyone of you. If you would like to know any more information about anything or just want to say "Hello" you can email me directly at </span><a href="mailto:hrt4bryan@gmail.com"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><b>hrt4bryan@gmail.com</b></span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">. Thanks again and I will let you know how things work out with cardiac rehab.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-48359452545098863312011-07-06T16:02:00.001-04:002011-07-06T16:11:47.606-04:008 Weeks (at least that date is correct)<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg27bbusPye6UXELRGDLOLUAUx18EP71U7CYVCgO0ozT17yndP04G3OSqyQqHDDDR_MFZu3KdG-HXqs8Zy2McJOsCcnZAP8cLXmZu6AxTigjIA5pzWgiuBo4GfeajgcTpS0X8u2zNFVOpvE/s1600/calendar.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg27bbusPye6UXELRGDLOLUAUx18EP71U7CYVCgO0ozT17yndP04G3OSqyQqHDDDR_MFZu3KdG-HXqs8Zy2McJOsCcnZAP8cLXmZu6AxTigjIA5pzWgiuBo4GfeajgcTpS0X8u2zNFVOpvE/s200/calendar.jpg" width="198" /></span></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Today marks 8 weeks since my transplant and I was supposed to spend the afternoon in the city where it all happened and have a biopsy tomorrow but apparently there was mix-up and my biopsy was actually today. Oops. I don't know how that could have happened since the paperwork I got after my last biopsy says "7/7/11" and the automated phone call confirming my appointment said Thursday, July 7th as well. Luckily I was only about halfway to Philly when they called me and told me I had missed my appointment. I told them that I thought my appointment was tomorrow and if there was anyway they could fit me in since I was already on my way down and they said no. So instead of the 8 week anniversary I will be spending my 2 month anniversary in Philly having a biopsy done! They moved the appointment to Monday, July 11th and thankfully I was able to change my hotel reservation to Sunday without any penalty. Now I just have to try to change another appointment I had Monday afternoon. It's always an adventure with me.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Other than that nothing new to report here. I will let you all know how things go on Monday with my check-up and biopsy. Hope you all enjoyed the 4th of July!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-12957351873817071632011-07-01T18:47:00.000-04:002011-07-01T18:47:48.087-04:00Surgical Check-up<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Yesterday I drove myself down to Philly for my post op check-up with Dr. </span><span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Pochettino. It was my first time driving down to Philly by myself since my whole transplant process started nearly a year ago and it was the longest drive I've taken since being allowed to drive again. I took the "back way" down to through Princeton and avoided The Parkway and Turnpike. I don't think I'm quite ready for a long drive on those yet (but then again, is anybody ever really ready to drive on them?). Going that way takes a little longer but my family and I decided it would be better because there were more places for me to pull over and take a break if I needed to. It felt really good driving and I wasn't anxious or nervous during it at all. I guess driving is like riding a bike, you never really forget how to do it.</span></span><br />
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<span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I got down to The Perelman center about 11 a.m. because I needed to get a chest X-ray before my 12:15 appointment. I was done with radiology around 11:45 and then had some paperwork to drop off at the Transplant Clinic which only took a few minutes. I checked in with Dr. Pochettino at about noon and I already could tell it wasn't going to go smoothly. The receptionist kept asking if I was positive my appointment was today and I pulled up the MyPennMedicine App on my iPad and showed her the appointment. She then found my appointment but couldn't "me" in the computer. Apparently radiology never checked me out so I wasn't able to check me in at the doctor's office. I guess she figured it out because a few minutes later she gave me my paperwork and told me to have a seat and wait to be called. I waited about twenty minutes before the Nurse came out called my name, and again asked me if I was sure that my appointment was today and then asked who referred me to Dr. </span></span><span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Pochettino. I told her that he preformed my heart transplant so I guess the Transplant team would be the referrers. She seemed surprised that I was there for a post op visit but I also saw the light go off above her head as to why my name wasn't familiar to her. She called me into the exam room about ten minutes later where she went over my medication list and asked the usual questions. She left the room and I proceeded to wait another half hour for Dr. </span></span><span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Pochettino to come in. He asked how I was feeling, examined my incisions, I asked a few questions and then we were done. He said everything looked good and that everything else would be handled by the Transplant team. All that waiting for an exam that took less than ten minutes.</span></span><br />
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<span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">By this time it was after 1:30 p.m. and I was starving. I went down to the Gia Pronto Cafe to grab something to eat. There, I ran into my social worker and was reminded that I had want to speak with her. I asked if I could stop by to see her after lunch and she said that would be fine. I got a salad from there which was huge! I could barely eat all of it. I could feel myself starting to wind down and was getting concerned about making the drive home the same day. I decided it would be best if I got a hotel room for the night and drove home the next morning fully rested. Plus I was nervous about driving in rush hour as it was nearly 2 p.m. and I didn't know how long I would be with my social worker. And on top of everything else, President Obama was in the city for a fundraising event so traffic was even worse than it normally is. I booked a room at the Sheraton down the street which worked out nicely because they were having a special so the room was pretty inexpensive. I had discussed this option with my Dad before hand and packed an overnight bag just in case I needed it.</span></span><br />
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<span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">After I spoke with my social worker I checked into the hotel and took a little nap. I told my friend Kris that my plans had changed and I would be staying in the city for the night. He stopped by and we went out to dinner and that was my exciting night in Philly. I woke up this morning, showered, packed, and then drove home. I ended up meeting my Friend Cait for lunch because she is leaving for Ireland tonight to finish her masters program in Dublin and I wanted to see her before she left so although I left at about 10 a.m., I didn't actually step foot into my house until about 3 p.m.. Again, there were no problems with the drive except when I was on my way home from lunch. I didn't think about traffic in Bergen County on the Friday before the Fourth of July weekend. I took mostly backroads (to again, avoid the Parkway which I'm sure was a parking lot) but was still a little anxious by time I got home. It was nice to regain some of my independence I find it fitting that it happened right before Independence Day.</span></span><br />
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<span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My next Check-up/Biopsy is scheduled for next Thursday, the 7th. I'm going to talk to my Dad tonight about what the game plan is going to be. I have to be there at 7a.m. again so we're going to have to figure out if if he is going to come down with me and if we should go down the night before so we don't to get up quite so early. The good thing about having the biopsy done at The Perelman Center is they only use a local anesthesia so I could drive myself down the the night before and then home after the biopsy. I don't think I'm ready to do the trip by myself in one day, especially since I would have to leave the house by 5 a.m. which means I would probably get up at 4 a.m.. All logistics that we will figure out. Thanks again to everyone for all of your support and generous donations that make these trips less of a financial burden. I know I've said it probably a million times now, but I feel so blessed and loved to have such wonderful people in my life who are willing to help others in their time of need.</span></span><br />
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<span class="Apple-style-span" style="color: #333366;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span></span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-28121669568671093992011-06-23T16:42:00.000-04:002011-06-23T16:42:36.180-04:00Some Highs, Some Lows & Biopsy Results<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">It's been six weeks since my heart transplant and the past two weeks since my last post have been interesting. At my four week visit they took me off of my blood pressure medication (lisinopril) and after a few days of being off it I began to get sharp, shooting pains in my head. When I would stand up I would get dizzy and a ringing in my ears. Of course it was a Friday night so when I called the Penn Transplant Center I got the answering service. The on-call nurse practitioner called me back and had me take my blood pressure. It was 155/120. She told me to go back on my lisinopril but only half the dose and she would call me back the following day to check on me. The whole next week my pressure would be fine in the morning and then at night it would be slightly elevated but by the following weekend it was back down to normal.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">After venturing out a few times the past couple of weeks I've also noticed that when I in large groups or crowds I get anxiety/panic attacks. I talked to my doctors about it and they said I should just take it easy for a little bit while I get acclimated with social scenarios. Another thing is the rash on my back (caused by the high dose of prednisone I'm on) has spread to my chest and is beginning to show up on my neck and my face. The lotion they gave me doesn't seem to be doing much to curb it either. Plus, when I apply it to my face it makes me break out. I'm damned if I do and damned if I don't.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As for my check-up yesterday, everyone seemed really pleased with my progress. My Aunt Karen is in town visiting me so she took me down and since I had to be there so early we went down Tuesday afternoon and spent some quality time in Philly. I was able to walk from Center City all the way to Independence Hall and walked Independence Hall which was about a mile and an half. I didn't have to stop once! I did, however have to take a cab back to the hotel from there. I was starting to get tired and we wanted to "freshen up" before going to dinner. My appointment in clinic went really well. I had a lot of questions about things so it took a little longer than expected and I was late for my VO2 stress test but they didn't seem to mind. The most important question I had was whether or not I can drive. They seemed apprehensive at first but after hearing about my adventures of walking the day before and how mobile I am at home with stairs getting in and out of chairs, they figured I am ready to drive. I finally get to enjoy my new car! Their only concern is the seatbelt if I stop short so I just have to put some sort of cushion between myself and the seatbelt but it doesn't have to be the giant, obnoxious heart shaped pillow that I've been driven around with for the past four weeks. They also said that they don't expect me to return to work any sooner than six months post-surgery which puts me back in the office in mid-November. I was hoping it would be a little sooner than that but I'm going to be starting cardiac rehab three times a week so it would make it difficult to work around that. Especially since I don't know how long I will be going to rehab for. But I'm looking forward to having somewhat of a more structured schedule. My doctors seem to think that will help with the anxiety when out in public too.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My VO2 Stress Test went really well and I was on the treadmill for about 11 minutes. I could have gone longer but my leg muscles are so de-conditioned from sitting in a hospital for seven weeks that they felt like they were on fire. Another reason why cardiac-rehab will be good for me. After that I had my Biopsy. The biopsy itself took about 7 minutes. Probably because I had a different doctor do it and he only gave me one shot of local anesthesia and didn't even give it time to take effect before he stuck the catheter into my neck. And then when he saw me wince in pain and asked if I was all right, ignored the fact that I said it hurt. When I winced a second time, he said there was a lot of scar tissue he had to go through and he would be done in three minutes. Usually, they just give me a little more local anesthesia and I'm fine. Needless to say, my neck is a little sore today. After the biopsy we grabbed lunch and then I went over to see the unit I was in before my transplant so I could hi to my Nurses and introduce my Aunt to them. (On a side note, I had no idea how far the walk was through the Hospital to get to Founders 10. I don't know how all of you who visited more than once did it lol.) After that we headed home because I was tired and starting to not feel well (mostly my neck).</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I got the results from my biopsy today and everything came back good. No rejection, my tach levels were perfect and they lowered my prednisone down another 5mg. One step closer to clearing up the rash! They also stopped my Iron supplement because my levels were perfect. One less pill to take! The results from my stress test haven't come in yet but they don't foresee any problems with it. They just do it to make sure I'm ready to begin rehab.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">That's all the news for now (I think it's more than enough for one post). Sorry I've been MIA from posting on here and the </span><a href="https://www.facebook.com/Hrt4Bryan"><b><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Hrt4Bryan</span></b></a><b><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"> </span></b><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Facebook page. I think after seven weeks of sitting in front of a computer I just needed a break. I'll try not to keep people in the dark with how I'm feeling and what's going on. If anything major comes from the VO2 Stress Test I'll let you know.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com2tag:blogger.com,1999:blog-649302810264655234.post-15644661881031144512011-06-08T16:47:00.000-04:002011-06-08T16:47:54.844-04:00Biopsy Results & Four Weeks Since Transplant<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">As some of you may know, I went for another biopsy yesterday down in Philly and let me start by saying how much easier it is to get a biopsy done at The Perelman Center than it is it get it done at the actual Hospital. It's much more casual and they don't need to put an IV in or give me any kind of sedative. That means that once I'm cleared to drive, I can drive down myself down and don't need anyone to take off work to come with me. That will also allow me some time to finally explore Philadelphia a little more. Something I've been saying that I wanted to do since I got listed back in August of 2010. As for the biopsy, everything came back good. No rejection and my Tac (Tacrolimus) levels were perfect. They also started to taper me off the prednisone by 5mg increments. They lower the dose two weeks before my next biopsy so they get a good idea of how I am doing by that time. They also surprised me by taking out my staples out down there instead of waiting until today. They were starting to bother me and were getting red around the edges so the Nurse Practitioner decided to take them out. My Dad as a little bummed he didn't get to see them come out since my Brother drove me down but Bobby was all about it. He would have recorded it if I (and the NP) had let him.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My next biopsy is scheduled for June 22. I also have another VO2 Stress Test Scheduled for that day so it's going to be a very busy morning. I need to be in the Perelman Center by 7am so I'm planning on spending the night before down in Philly so I don't have the two hour drive to deal with at 5am. I'm also planning on them clearing me to drive on that day! I can't wait to finally be able to drive my car. It still has the new car smell. My Aunt Karen is coming to visit for a couple of weeks starting next Tuesday so I'm hoping she wont mind taking the trip down to Philly with me for two days so my Dad and Brother don't have to take more time off work. I'm sure she's interested in meeting the team that saved her Godson's life. I'm super excited to see her.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Tomorrow I have a cardiologist appointment but I don't see anything major coming out of that. I imagine it going the same way my appointment with my GP went last week. Just letting them know what happened the past two months in Philly so they know incase there is an emergency of some sort. I don't foresee that happening but better to be safe than sorry. A dear family friend Barbara will be taking me to my appointment (so my Dad can save his days off) and then we are going to my new favorite place to eat, </span><a href="http://www.toastmontclair.com/menu.htm"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><b>Toast</b></span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">, in Montclair. For those of you in the area, if you haven't been you must try it! The food is so good!</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Today is also four weeks since my transplant. I can't believe the progress I've made. I still have the back pain and headaches but my wrist is finally starting to feel better. It still hurts occasionally but not nearly as bad as it has in the past. I had the doctor who did my biopsy yesterday (who was also in the OR during my transplant) look at and she said the anesthesiologist "really did a number on me." I wanted to respond with "No s**t, Sherlock!" but she's super nice and I like her. Plus she had just had a wire in my heart so I figure I should be nice lol. I also want to big a huge "Thank You!" to the VEA. I just learned that you hosted a Happy Hour with proceeds benefiting Hrt4Bryan the week I got transplanted. And again, I want to thank everyone who has donated and supported me and my Family through all of this. I know I say it all the time, but it is truly overwhelming. Some of the best advice I've gotten the past couple of weeks since I've been home is to remember to live life to the fullest now because I've been given a second chance for a reason. That's exactly what I plan on doing. I'm not going to take anything or anyone in my life for granted. You have all been so instrumental in helping me get through the last ten months that there is nothing I could ever say or do to show how appreciative I am. Thank you all so much and I will let you know if anything changes.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com3tag:blogger.com,1999:blog-649302810264655234.post-77017828448338896922011-06-01T14:59:00.000-04:002011-06-01T14:59:01.068-04:00First Checkup and 3 Weeks since Transplant!<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Sorry I didn't get a chance to post an update yesterday after my appointments but I just didn't have the time. But at least for todays post I have the results of the tests they ran. I addressed my main concerns with my doctors yesterday which are my headaches, back pain, and the fact that my wrist is still hurting. They said the back and wrist pain are normal from the surgery and should go away in time. The headaches they are a little more concerned about. They said it could be a side effect of one of my anti-rejection medications, </span><a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000103/"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Tacrolimus</span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">. That being said, they said my levels were fine according to my blood work (which doesn't mean that it's not the culprit of the headaches, it just means they aren't going to adjust it). Knock on wood, I haven't had a headache the past couple days. They changed a few other doses of my medication, mainly because my blood pressure is a little lower than they would like but if I'm anything like my Mom, I just have naturally low blood pressure. Although, I'm not sure if the new heart should change that. Maybe my donor had low blood pressure too. Who knows?</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">When I spoke with the transplant team today they also said my echo looked good. My </span><a href="http://www.mayoclinic.com/health/ejection-fraction/AN00360"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Ejection fraction</span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"> was very good. I don't think he gave me an exact number but with my old heart it was around 7 so anything has got to be better than that. He also said my kidney function is good so things are going very well. I am scheduled for another office visit next Tuesday, June 7th, along with another biopsy. That's when they're going to start tapering down my dosage of Prednisone. After that, I will be going down every other week for a checkup and biopsy. (Hopefully the following office visit on June 21st I will get cleared to drive so stay off the roads that week while I learn how to drive again!) They also cleared me to drink alcohol again. I just can't go crazy. One or two drinks is fine. But after not having any alcohol for so long, I'm sure that will be plenty.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjo4ZWFKYwu533tK8ku-oR-c4TgdSPVJUSEGFeNuyAqkVisoYBUIIOVe83tHXqICxQphsz6c-7X4v-4BvK0US_GrSf7GIdy_IcofC8Wl2na4HELsWaDDU6j39Sj4sy47vu5gqFYGbEuXZ/s1600/248963_656543419849_28800533_35212743_1305567_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><b><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjo4ZWFKYwu533tK8ku-oR-c4TgdSPVJUSEGFeNuyAqkVisoYBUIIOVe83tHXqICxQphsz6c-7X4v-4BvK0US_GrSf7GIdy_IcofC8Wl2na4HELsWaDDU6j39Sj4sy47vu5gqFYGbEuXZ/s320/248963_656543419849_28800533_35212743_1305567_n.jpg" width="320" /></b></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">All the pills I have to take. I think its understandable <br />
why I am a little confused.</span></span></td></tr>
</tbody></table><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Today also marks 3 weeks since my transplant and I'm feeling pretty good. My wounds are healing very nicely and the staples are scheduled to come out next week. So far none have fallen out on their own and I'm keeping my fingers crossed that it stays that way. I'm also starting to get more comfortable with my medications. A huge thanks to Vicky who helps me every Tuesday night organize my pills for the next week. (I do it on Tuesdays because that's when I have my appointments and that's when they would change any medications) She has been such a huge help with everything. My head would still be spinning if it wasn't for her. </span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">That's all the news from the past couple of days. Everything seems to going very well which makes me happy. Hopefully the back and wrist pain start the get better. Once that starts to happen I will be an even happier camper! Thank you to everyone for all your continued support, well wishes and get well cards. I will keep you posted on any changes.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com2tag:blogger.com,1999:blog-649302810264655234.post-47606950311833293232011-05-30T12:47:00.000-04:002011-05-30T12:47:20.687-04:00There's No Place Like Home<span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I've been home just about a week now and things are going okay. I guess I just expected them to go a little more smoothly if I was feeling so good when I left the hospital. Now that I'm home, I'm still in a lot of pain and my doctors are trying to wean me off the pain medication as much as they can. Unfortunately that means I'm feeling more pain. Especially in my back, my chest from having my chest opened, and my wrist hurts most of all from where they had the A-line. That's so painful that I am actually dictating this blog post on my iPad so I can just copy and paste it to my blog. The wrist pain is also the most frustrating because I expected it to be mostly healed by now. Especially since it's nearly three week post transplant.</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><br />
</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><br />
</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Another little annoyance is I've been getting headaches a lot more frequently. The first day home I got a really bad migraine and my doctors adjusted my medication. That seemed to help but now it seems about every day around six or seven I get just a headache. Not bad but it's annoying. As for the back pain, I've been using a heating that and that helps alleviate a lot of the pain.</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><br />
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</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My nurse says that my staples and incision look really good. The staples are coming out on June 8. All 51 of them! She also said that there's a good chance that some of them may even fall out on their own, which kind of freaks me out a little bit because I'm afraid I'm going to wake up and find staples in my bed. The staples freak me out alone and knowing that they could fall at any moment only adds to the anxiety of having them in.</span></span><br />
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<span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"></span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I'm also starting to get more comfortable with my medications. I'm nervous about having to refill my pill box this week, only because when I did it for the first time last week, I had filled out one day's worth with the doctor down in Philly as a "cheat sheet." Vicky helped me with the rest of the week. Maybe if I'm extra nice she can help me again this week. Also, the few times I've been out and about in town, the support and congratulations I've been getting from people has been really wonderful. I feel so blessed to live in a community that pulls together to help another resident in a time of need.</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><br />
</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Well I just wanted to give you a quick update about how the last week has been. I will post again tomorrow because I have an appointment down in Philly as well as an appointment with my general practitioner here in Verona just to check me out. I will let you all know how things go with that and again thank you for all your support and prayers and love you and well wishes. I do not know how I would've gotten through all of this without all of you. I hope you all enjoy the rest of your Memorial Day Weekend and I will talk to you all soon.</span></span><br />
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<span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span></span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com0tag:blogger.com,1999:blog-649302810264655234.post-30897732600870227012011-05-24T13:15:00.001-04:002011-05-24T14:34:11.528-04:00Leaving the Emerald City!<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I got word this morning that I will be getting discharged <b>TODAY!</b> The results of my second biopsy came back great and they're kicking me out. Well not really kicking me out but I'm ready to go home. I miss my bed lol. I would be lying if I didn't feel bittersweet about leaving. I've been here seven weeks and it's going to be an adjustment going home and working towards recovery. Not to mention that the entire staff here has been terrific and feel like family. Plus, I'm a little nervous. I think it's natural to feel nervous. It's going to be a lot more responsibility to take over all the medications on my own. I've been trying to familiarize myself with them and when I take what but there's a lot. The transplant doctors will be in this afternoon to go over the final doses and times with me as well as address the questions I have. They will also be removing the last IV from my neck and the stitches in my stomach from my drainage tubes.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I found out my staples will have to stay in for at least another two weeks. Since it is my second time having my chest opened they like to give it a little more time to heal plus with the immunosuppressants it takes a little longer for my skin to bond back together. The good news is that I can shower normal with the staples and don't really have any special instructions for them except to not submerge them in water (so no baths or pools for the time being). The staples gross me out so knowing that I can just ignore them helps. I will have a home nurse visiting once or twice a week to look at the I also need to find out my biopsy and office visit schedule. I don't think I have a biopsy next week (they give you the third week off for some reason) but I still have to come down for an office visit. There's so many things that I feel like I still need to learn before I go home. I think I'm just over analyzing things a little bit. The thing I'm most nervous about are the medications. I was so regimented with my schedule pre-transplant and now I feel like I don't know what to take when. But the team is really good and I know I will be put at ease once they come in and go over the final doses.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Right now I'm being inundated with people coming in giving me paperwork for this and that. It's a lot to handle. I will continue to keep you all posted on how the discharge process goes and everything else going on. Thank you all for all your continued support through all of this. I can't wait to begin this next chapter of my life and share it all with you in person and not just through my blog and Facebook page.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Love you all so much!</span><br />
<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhJ63tMIir9u5-zZ2BfsgK8xD5yESYUKA7UB70J-8VOqvHsgYERMpoU8r1de2eajGbtduI_lMXhbR1wbukl11mDHIjCrUsYFH8UlY4KAEbtqcg46kkh2o7Ob13bVpQUNvgN5RVK4DlZBGc/s1600/philly-skyline.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhJ63tMIir9u5-zZ2BfsgK8xD5yESYUKA7UB70J-8VOqvHsgYERMpoU8r1de2eajGbtduI_lMXhbR1wbukl11mDHIjCrUsYFH8UlY4KAEbtqcg46kkh2o7Ob13bVpQUNvgN5RVK4DlZBGc/s400/philly-skyline.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My City of Oz. I'm going to miss it but I know I will be back and look<br />
forward to spending time here as a tourist and not just a patient.</td></tr>
</tbody></table>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-29347586792380021652011-05-18T21:51:00.000-04:002011-05-18T21:51:29.662-04:00Bumpy Yellow Brick Road<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTOlAe2DVyt6PmveQuJ2pwoLzN8T9ejshDpEo-F6L5x7sjbazqqPd_7VDFtU8B2M8vhoXnUqsAnTzNbmxFFDtoKQpLj-BnhGob2UPTnM3gFVCIPioxza3ZKy1tLIMuvMrOn-gzeaZGRPaO/s1600/the_wizard_of_oz_yellow_brick_road-11606.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTOlAe2DVyt6PmveQuJ2pwoLzN8T9ejshDpEo-F6L5x7sjbazqqPd_7VDFtU8B2M8vhoXnUqsAnTzNbmxFFDtoKQpLj-BnhGob2UPTnM3gFVCIPioxza3ZKy1tLIMuvMrOn-gzeaZGRPaO/s200/the_wizard_of_oz_yellow_brick_road-11606.jpg" width="200" /></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">The past week has definitely been full of it's ups and downs. I guess that was all to be expected though. I just don't remember my last surgery being so difficult. Maybe being 7 years younger did made that much of a difference. It just seems like for every good day I have, the next one is much worse. When I first woke up from surgery everyone told me how great I was dong and how impressed they were at my recovery. The first big obstacle was being intibated for such a long period of time. My surgery was done around Noon on Wednesday the 11th and the tube was kept in until 2am Thursday morning. It was such a relief to get it taken out. Apparently getting it put it was rougher than they had thought it would be. I kept coughing up blood while intibated which was less than comfortable. They would suction it out but my mouth was so dry that it would actually hurt. They would swab my mouth to keep it from drying out but since I couldn't really swallow, I would just cough up and choke a little bit. I wouldn't wish that on anyone.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">Once the breathing tube was removed I was hoping I would be somewhat in the clear. Boy was I wrong. My throat was still really sore and my voice was super raspy. They said this what normal the first day or so but here I am a week later still unable to talk very well and its beginning to get to me. Luckily 3 out of my 4 drainage tubes have been removed but the last remaining one is still causing a lot of pain, especially in my back. My doctors said that the tube is most likely rubbing up against the inside of my ribcage which is why I'm having so much discomfort. The third tube they took out yesterday seemed to come out smoothly but a later X-ray showed that I had air in my chest where the tube was. This meant more pain. To top it all off, i got a migraine as well as chest pains and broke out into a sweat and was coughing a lot. It's so painful to talk. My doctors ordered a CT to see what was causing the migraine but I had already been too sedated to get it. I was also too sedated to meet with the ENT (Ears, Nose & Throat) doctor about my voice. Apparently he came in to assess me but I was pretty out of it. I don't even remember him coming in. They moved me back to bed and put me on oxygen in an effort to get the air out of my lungs. Luckily that, along with my breathing exercises has seemed to help. As has the morphine which seems to have become my best friend over the past few days.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">My dad and I had a "class" this afternoon with one of the transplant team doctor's about what to expect the next 6 months or so. It looks like a biopsy down in here in Philly once a week for the next month or so with them becoming less frequent as time goes on. These are things that we had expected so they weren't really a big surprise. The good news is that the biopsies will be out patient and be done at The Perelman Center so I won't have to step foot into the actual hospital unless it is medically necessary. They doctors had originally said that I could be discharged as early as this Friday but that was before the air in my chest and they were still planning on removing my final drainage tube today so I'm not sure what the time frame is now. I guess it's better not to rush things and make sure everything is ok before they send me home. Being in here 6 weeks is starting to take it;s toll on me though. I want to be able to sleep in my own bed and walk outside and get some fresh air. My doctor also warned me that I'm not going to get home and feel 100% right away. I will still need time when getting up and my even feel light headed for sometime post transplant. These are all normal things and I should not let them get me discouraged.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">He also said the time frame for me to return to work is still about 6 months and I wouldn't be able to be cleared for any major travel for 12 months. I guess part of me was hoping that since I bounce back so quickly from my first open heart surgery that this would be no different. They said I should be able to drive again in about 6 weeks post surgery. They just want to make sure my sternum is fully healed before I get behind the wheel. That was also expected and I already have June 22nd in my calendar. But who's counting?</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">So right now I am just taking things day by day and just working on getting home so I can continue to recover from there. I know the long ahead of me is still a long one but getting home is a least a baby step in the right direction. Luckily, the staff here has been amazing and I wouldn't trade going to another hospital for anything in the world. I feel like they are part of my family now and definitely plan on coming down to visit even once I am healed.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I also want to to thank al my family and friends (again) for being here for me whenever they can to help support me. I know you all have been calling and I haven't been answering but it's not because I don't want to talk to you, it's that with my voice, I can't. I'm sure many of you have been waiting for the day when I can't talk so take advantage of it while you can! I will try to update my blog more frequently so the posts aren't so long but it's much easier to just shoot a quick message over the </span><a href="https://www.facebook.com/Hrt4Bryan"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><b>Hrt4Bryan Facebook Page</b></span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">. Also, my brother has access to that so he can keep people updated there as well. Thanks for all your continued support and I will let you all know how thing progress over the next few days.</span><br />
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<span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">-Bryan</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1tag:blogger.com,1999:blog-649302810264655234.post-83685023409367123532011-05-10T18:03:00.000-04:002011-05-10T18:03:36.957-04:00Tin Man Gets His Heart!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji3wo9_tHVb5oBvGiIp1OLp2HN3vwynsjAbcT_S3C2U77BkL0lYJvLD_Gc82-jDb_FginzF82yI_wJW-EpyCGYUQUjSmF4Mk_XP6U6R8htTNU7ZfSoLb0vR4WoXCQ_GJmV896tcMtfFekg/s1600/tinman3.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="262" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji3wo9_tHVb5oBvGiIp1OLp2HN3vwynsjAbcT_S3C2U77BkL0lYJvLD_Gc82-jDb_FginzF82yI_wJW-EpyCGYUQUjSmF4Mk_XP6U6R8htTNU7ZfSoLb0vR4WoXCQ_GJmV896tcMtfFekg/s320/tinman3.gif" width="320" /></a></div><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">I just found out that a heart has become available for me! I don't know how long I will be out of commission and unable to update my blog but my brother will be updating the </span><a href="https://www.facebook.com/Hrt4Bryan"><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"><b>Hrt4Bryan</b></span></a><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"> Facebook page so check there for the most up to date information and latest news on my immediate recovery! Thank you everyone for all your love and support through all of this! I look forward to continue sharing my journey down the Yellow Brick Road with you!</span>Hrt4Bryanhttp://www.blogger.com/profile/07070052030432667631noreply@blogger.com1