Meeting with transplant surgeon

Apr 15, 2014

Ok, I'll try not to make it too long or confusing of an email, it's been a long day. So, I actually met both transplant surgeons, met the one guy I didn't know and he started going through the world's longest history (shaking his head during certain portions, of course we know which parts those were), he talked, asked questions, and did a physical exam. He was still talking when Dr. Kareem came in the room, so Dr. Kareem didn't want to interrupt his partner so (in a NON creepy way) he held my one hand and put his other hand on my head (like a blessing), and gave me a hug. It really gave me a warm, caring feeling. They both were horrified at what I had been through. So, there are some tests I definitely need to have re-done/done, and I'm going to get those done while I'm here to minimize the ping pong from home to here. They explained that depending on my anatomy now, they might start with a reconstruction of what I have, and some people never need the transplant after that, but even in people who still need the transplant that first stage operation can vastly improve quality of life while waiting for organs to become available. Sadly, as much as I appreciate all of your offers for bits of intestine, my donor items will have to come from someone who had passed on. I am a huge believer in organ donation, I've always been an organ donor (even pay extra for the Walter Payton Life Goes On IL Organ Donor license plate), but it did make me a bit sad that someone will have given their life in order to make my life better and healthier. 
Again, based on pre-op testing and looking at my anatomy on films, they will have a definite plan, but if I need the transplant either in addition to or instead of the reconstruction, they were both estimating that I would end up getting a stomach, intestines, and possibly a pancreas (I said spleen in my earlier email, I can only blame that on low blood sugar lol). They said most of their transplants end up being multi-organ transplants. Dr. Kareem is THE foremost expert in these types of transplants, and an innovator in the field (I did some objective research). Of course there are always risks (I have an entire book to read), but they both are very confident, no hesitation, that this will make me well again...I told them that halfway normal would be a win.  In addition to the anti-rejection meds that I would be on for life, I will have to live in Cleveland for the first 3-4 months after the surgery, and once that hurdle is cleared, they said I will always have an umbilical cord attachment to the clinic for lifetime check ups.  I am staying over a few days longer, need some extra labs drawn tomorrow, especially vitamin A (could be why I wear glasses now and can't see for shit while night driving on highway), if vitamin A is low that could be corrected. I also need to meet up with nutrition, and basically every other department here that can help get my body in the optimal shape for a transplant. I extended my hotel room to Tuesday, we can adjust as we go along, and this is a prime reason why I always buy trip insurance. I'll have to call United tomorrow and home health, Coram will have to get more TPN to me.  I'm sure there's stuff I forgot, more questions I will have, but I have no less than 6 business cards that were included in the giant book. 

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