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
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.
-Bryan
