Three Years Out & Change of Venue

3 Years

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.

Columbia University Medical Center: My new
home for post transplant care!

Goodbye HUP

With it being my three year anniversary I have decided to make 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.

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 AlloMap test, which is a blood sample taken to test for rejection. The second new test (for me) will be an angiogram. I will post after my annual and let you all know how the results go and my first experience at Columbia goes.

Thank you
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, 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.

-Bryan

Two Years

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.

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.

The 2013 Hrt4Bryan Team

18 Annual Donor Dash
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.

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.

Thanks again,
Bryan

Worst. Biopsy. Ever!

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.

Standing in front of the Tower Bridge with the Olympic
Rings hanging from the upper walkways.

London 2012 Olympics
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.

Summer and Fall
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.

Thanksgiving Weekend
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!

18 Month Biopsy
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.
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!).

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 here!

Thank you all for your continued support and I wish all of you a Happy Holiday Season and a very blessed New Year!

-Bryan

14 Months. 15 Days.

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!

A view of Venice

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!

Tony & I on Pike's Peak

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.

USA! USA! USA!

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!


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!

"How Do You Measure A Year In The Life?"

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. 

Team hrt4bryan at The Dash

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 hrt4bryan@gmail.com and I'll keep you posted as to when you can sign up and all the other information!


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.

A photo of me last weekend, a little
less than my 1 year anniversary

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!


Bryan

Tin Man Turns 27!

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!


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 Dash for Organ and Tissue Donation and there is still time to support me!


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!


Bryan

Bitter Sweet Weeks

An old picture of me and two of my
coworkers, Lauren & Debbie

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!

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.

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 17th Annual Dash for Organ & Tissue Donor Awareness. Please support me 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. One person donating their vital organs and tissue can save the lives of as many as eight other people - and make a difference in the lives of many more.


As always, I thank you for your continued support!


Bryan