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.