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
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.
-Bryan
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.
-Bryan
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.
-Bryan
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.
-Bryan
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.
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.
-Bryan
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. |
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.
-Bryan
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.
-Bryan
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.
-Bryan
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