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 hrt4bryan@gmail.com. Thanks again and I will let you know how things work out with cardiac rehab.
-Bryan
Bryan's Journey with a New Heart!
Wednesday, July 13, 2011
Wednesday, July 6, 2011
8 Weeks (at least that date is correct)
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!
-Bryan
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.
-Bryan
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.
-Bryan
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