Wednesday, May 18, 2011

Bumpy Yellow Brick Road

The past week has definitely been full of it's ups and downs. I guess that was all to be expected though. I just don't remember my last surgery being so difficult. Maybe being 7 years younger did made that much of a difference. It just seems like for every good day I have, the next one is much worse. When I first woke up from surgery everyone told me how great I was dong and how impressed they were at my recovery. The first big obstacle was being intibated for such a long period of time. My surgery was done around Noon on Wednesday the 11th and the tube was kept in until 2am Thursday morning. It was such a relief to get it taken out. Apparently getting it put it was rougher than they had thought it would be. I kept coughing up blood while intibated which was less than comfortable. They would suction it out but my mouth was so dry that it would actually hurt. They would swab my mouth to keep it from drying out but since I couldn't really swallow, I would just cough up and choke a little bit. I wouldn't wish that on anyone.

Once the breathing tube was removed I was hoping I would be somewhat in the clear. Boy was I wrong. My throat was still really sore and my voice was super raspy. They said this what normal the first day or so but here I am a week later still unable to talk very well and its beginning to get to me. Luckily 3 out of my 4 drainage tubes have been removed but the last remaining one is still causing a lot of pain, especially in my back. My doctors said that the tube is most likely rubbing up against the inside of my ribcage which is why I'm having so much discomfort. The third tube they took out yesterday seemed to come out smoothly but a later X-ray showed that I had air in my chest where the tube was. This meant more pain. To top it all off,  i got a migraine as well as chest pains and broke out into a sweat and was coughing a lot. It's so painful to talk. My doctors ordered a CT to see what was causing the migraine but I had already been too sedated to get it. I was also too sedated to meet with the ENT (Ears, Nose & Throat) doctor about my voice. Apparently he came in to assess me but I was pretty out of it. I don't even remember him coming in. They moved me back to bed and put me on oxygen in an effort to get the air out of my lungs. Luckily that, along with my breathing exercises has seemed to help. As has the morphine which seems to have become my best friend over the past few days.

My dad and I had a "class" this afternoon with one of the transplant team doctor's about what to expect the next 6 months or so. It looks like a biopsy down in here in Philly once a week for the next month or so with them becoming less frequent as time goes on. These are things that we had expected so they weren't really a big surprise. The good news is that the biopsies will be out patient and be done at The Perelman Center so I won't have to step foot into the actual hospital unless it is medically necessary. They doctors had originally said that I could be discharged as early as this Friday but that was before the air in my chest and they were still planning on removing my final drainage tube today so I'm not sure what the time frame is now. I guess it's better not to rush things and make sure everything is ok before they send me home. Being in here 6 weeks is starting to take it;s toll on me though. I want to be able to sleep in my own bed and walk outside and get some fresh air. My doctor also warned me that I'm not going to get home and feel 100% right away. I will still need time when getting up and my even feel light headed for sometime post transplant. These are all normal things and I should not let them get me discouraged.

He also said the time frame for me to return to work is still about 6 months and I wouldn't be able to be cleared for any major travel for 12 months. I guess part of me was hoping that since I bounce back so quickly from my first open heart surgery that this would be no different. They said I should be able to drive again in about 6 weeks post surgery. They just want to make sure my sternum is fully healed before I get behind the wheel. That was also expected and I already have June 22nd in my calendar. But who's counting?

So right now I am just taking things day by day and just working on getting home so I can continue to recover from there. I know the long ahead of me is still a long one but getting home is a least a baby step in the right direction. Luckily, the staff here has been amazing and I wouldn't trade going to another hospital for anything in the world. I feel like they are part of my family now and definitely plan on coming down to visit even once I am healed.

I also want to to thank al my family and friends (again) for being here for me whenever they can to help support me. I know you all have been calling and I haven't been answering but it's not because I don't want to talk to you, it's that with my voice, I can't. I'm sure many of you have been waiting for the day when I can't talk so take advantage of it while you can! I will try to update my blog more frequently so the posts aren't so long but it's much easier to just shoot a quick message over the Hrt4Bryan Facebook Page. Also, my brother has access to that so he can keep people updated there as well. Thanks for all your continued support and I will let you all know how thing progress over the next few days.


1 comment:

  1. hang in there and don't worry about "time lines", that will drive you crazy. I am sorry to hear that your throat is still hurting.
    I know I felt alot better once all of the drain tubes were out. Every transplant patient that I have met have had very different responses with all of the meds and "stuff".
    After my transplant I still had to remain near the our transplant hospital. It was the most difficult part for me. After 4 months I was able to go home (3 hours from the hospital). I had biopsies ever week for the first month. When I went home I still had clinic visits and biopsies every 2 weeks. I have to be honest I really do enjoy watching the biopsy. I have had a couple of rejection numbers that landed me back in the hospital, but I believe that is a pretty normal thing.
    Again, all of us are differnt and so will be our transplants and recovery time. Please do not get discouraged and know that you are in many prayers, even from us that you have never met.
    Hang in there.
    Post Transplant 1 year....