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!
Bryan's Journey with a New Heart!
Friday, December 30, 2011
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.
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.
-Bryan
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! |
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.
-Bryan
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