Friday, December 30, 2011

Bye Bye Prednisone & 2011!

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.

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.

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!

Sunday, December 11, 2011

Yellow Brick Road Gets Bumpy (and Heavily Medicated)

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).

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.

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.

Prednisone: A nasty drug!
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.

After about a week with the increased medication I finally began to feel better and my 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.
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.


Thursday, November 10, 2011

5 Month Biopsy Results (4 Weeks Late) and a Bunch of Other News

5 Month Biopsy (October)
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!

Dentist Appointments
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.

Returning to Work
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.

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 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.

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!


Tuesday, September 27, 2011

September Biopsy Results

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.

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.

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.

My next biopsy is scheduled for October 12th. So I'm officially on a four week schedule!

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.

Thanks again to everyone for your continued support and I will keep you posted if anything changes.


- Posted using BlogPress from my iPad

Monday, September 12, 2011

"Wake Me Up When September Ends"

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.

A picture I took of myself while I was admitted in
the hospital in Philly last September.
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?

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.

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.

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.

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.

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.

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.

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.

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. 
(More after the video)

Medical Update
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.

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.

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.


Tuesday, August 30, 2011

Fishing, Biopsy & Mean Irene

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 folliculitis. 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.

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.
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.

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.

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.

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.

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.

As always, thank you all for your support through all of this.

- Bryan

Thursday, August 11, 2011

Aborted Biopsy, An Echocardiogram But All Is Still Good

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.

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!

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.

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.

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.


Wednesday, July 13, 2011

2 Month Biopsy & Check-up

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.

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).

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.

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.

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.

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 Thanks again and I will let you know how things work out with cardiac rehab.


Wednesday, July 6, 2011

8 Weeks (at least that date is correct)

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.

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!


Friday, July 1, 2011

Surgical Check-up

Yesterday I drove myself down to Philly for my post op check-up with Dr. 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.

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. 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. 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.

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.

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.

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.


Thursday, June 23, 2011

Some Highs, Some Lows & Biopsy Results

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.

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.

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.

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).

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.

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 Hrt4Bryan 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.


Wednesday, June 8, 2011

Biopsy Results & Four Weeks Since Transplant

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.

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.

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, Toast, in Montclair. For those of you in the area, if you haven't been you must try it! The food is so good!

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.


Wednesday, June 1, 2011

First Checkup and 3 Weeks since Transplant!

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, Tacrolimus. 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?

When I spoke with the transplant team today they also said my echo looked good. My Ejection fraction 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.

All the pills I have to take. I think its understandable
why I am a little confused.
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. 

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.


Monday, May 30, 2011

There's No Place Like Home

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.

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.

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.

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.
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.


Tuesday, May 24, 2011

Leaving the Emerald City!

I got word this morning that I will be getting discharged TODAY! 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.

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.

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.

Love you all so much!

My City of Oz. I'm going to miss it but I know I will be back and look
forward to spending time here as a tourist and not just a patient.

Wednesday, May 18, 2011

Bumpy Yellow Brick Road

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.

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.

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.

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?

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.

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 Hrt4Bryan Facebook Page. 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.


Tuesday, May 10, 2011

Tin Man Gets His Heart!

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 Hrt4Bryan 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!

Giving Due Recognition and Status 1A-E Update

I just want to say how wonderful the staff here at The Hospital of the University of Pennsylvania are. From the doctors to the nurses to the CNA's, everyone is truly amazing. They always have a smile on their faces and are really great at making me feel at home here and understand how difficult this situation is for me being so far away from my family and friends. I've been in many hospitals and dealt with many different nurses and doctors over the years and the ones here truly take the cake. They have become like family and I know I will be sad to leave them once I get my new heart. You can tell that they really care about their patients and want to do everything they can to help them feel better, even if it means running down to Potbelly's to get me a milkshake or taking me to get my haircut. They even know to come into my room quietly in the morning so as to not wake me up and let me sleep in. I can't say enough how great they all are.

Now onto the serious stuff. Today is the day that my 1A-E time expires. I talked to my nurse practitioner Nicole yesterday and she said all that has to be done to extend my time is a simple conference call. That being said, the conference cll hasn't even been set up yet so I will continue on as Status 1A-E until the conference call and they are told otherwise by UNOS. I also spoke with my doctor this morning and he said I am the perfect candidate to be status 1A-E and he doesn't see my extension being denied. He also said that if it were to be denied, they would "go in with guns blazing" to get me back up to status 1A-E. It helps to know the doctors are really pushing and doing everything they can to get me a heart as soon as possible. So it looks like I will remain at HUP for the time being, although a definite length of time won't be determined until they have that conference call. I will update you all on when the conference call will take place. If not here on my blog, then definitely on the Hrt4Bryan Facebook page.

Also, for those of you dying to know about the iPad. It arrived at the Apple Service Center in California yesterday morning and I got word last night that it is unrepairable. The good news is they will replace it for free and it has already been shipped and is scheduled for delivery TODAY! It's crazy that this all was resolved in about 4 days. That's all the news I have to report for now. I'll let you know if anything else comes up.


Friday, May 6, 2011

Happy Hour Success but then Things Crashed

My Dad happy with to see all the support shown at
the Hrt4Bryan Happy Hour. Photo credit: Jeff Stiefbold

Let me start by thanking everyone who came out and support me last night at the Hrt4Bryan Happy Hour last night. From my High School teachers and fellow VHS Alumni to my neighbors, family, friends and even people that I didn't even know. All of the support and well wishes mean so much to me and words can not begin to describe how grateful I am to live in a community where so many people are willing to rally behind someone in need. I also want to thank Chuck MolinaroPaul McDevittLen Waterman and George Zehnder for helping with organizing the benefit. Without them, there is no way it would have been such a huge success. I also want to than O'Neil's for opening their doors to allow this to happen. All in all, over $12,000 was raised to help pay for my medical and travel expenses. I never, in a million years, expected the event to be so successful. Thinking about it brings me to tears and leaves me speechless. More pictures of the event can be found here.

Last night is when things started to go downhill. I went for my usual walk around the unit like I always do. Down the hall, turn right at the nurses station, down to the service elevator bank and look out the window to see the skyline of the city I've spent the last mont in but have been unable to explore. As I was walking back to my room I could feel my heart race. My chest was getting tight and I was getting short of breath. As I entered my room I heard the alarms sound and looked at the monitor and saw my heart rate was up to 146. Seconds later, the nurses were in my room getting an EKG and taking my vitals. I was sweating and my left arm was weak and I had pain in my chest. They called the resident on call. My heart rate wasn't slowing lowering like it normally does. After about ten minutes (but it felt much longer) my heart rate was still in the 130's. The doctor ordered some meds to help bring my heart rate down and my symptoms slowly began to subside. I rested in bed the rest of the night and then went to bed.

The shattered iPad.
This morning I felt much better and figured today would be a good day. I showered (which has finally become a daily occurrence once again). After I got dressed and was getting ready to eat my lunch, I knocked my iPad off my table. Although the cover was closed when it began to fall, it had opened by time it landed face down on the wheel of my IV pole. I could tell by the shards of broken glass on the floor that the outcome was not going to be good. You can tell by the picture that my intuition was correct. I called Apple and they told me that "accidents" were not covered under my warranty and it would cost over $300 to replace the screen. I explained my situation of being in the Hospital and being unable to get to a retail store and asked what my other options were. She said her manager was out and had me email pictures of the iPad to her and she would speak with him about how to handle my situation. Hopefully they figure something out considering this isn't the type of situation they see everyday. We will see.

Then, as I ate my lunch and housekeeping was cleaning up the broken glass from my iPad, my heart rate dropped into the 30's. I didn't even know anything had happened until I saw the alarm go off and a nurse (followed closely by more nurses) came running in my room to check on me. It only lasted a few seconds and by time I had even looked up at the monitor my heart rate was back into the 50's, which is where it normally is. So after last night's rise and today's fall in my heart rate I have been put on bed rest until the electrophysiologist can come and interrogate my ICD and determine why it let my heart rate drop so suddenly.

So needless to say , the last 24 hours have been quite the emotional roller coaster for me. I will keep you updated as to what the doctors say and if any else changes. My two weeks of 1A-E time expires on Tuesday but but I have a feeling these last two incidents (my heart, not the iPad lol) will allow for me to get an extension. Thank you again to everyone who came out yesterday and hopefully things start to look up from here.


UPDATE: I just got a call back from Apple and they will repair my iPad free of charge given my "unusual circumstance"! I just have drop the broken iPad off at any UPS Store and they will package it, send it to Apple and Apple will repair or replace my iPad at no cost to me!

I Also spoke with my doctors and the electrophysiologist and they said my everything seems to be "normal." Meaning, my elevated heart rate is the reason and I'm here and my pacemaker didn't go off when my heart rate dropped because it has a special feature, or fail-safe, that makes it wait a certain amount of time before shocking my heart back into it's normal rhythm. I have also been taken off bed rest and am now free to roam around again! Things have begun to get better quicker than I had anticipated!