Three Weeks Out

Howdy Folks! I imagine that you are on the verge of being upset that I or my father have not been posting recently, or you are already upset and have been for a while. It is hard for both Keith and I to remember to blog when we return home from a Seattle medical adventure, because for us things return to normal, and it doesn't seem like anything is happening that is worth blogging about. But I know that our normal is nothing like what most people would consider normal, so we should do periodic updates about how my recovery is going, and if this family is still retaining it's sanity. ;) 

So with that said, we are going to try and remember to blog on a more regular basis and not let the blog die like last time. But please forgive us, and be patient with us. I am still on lots of morphine and can't remember anything. (I feel like I am 80 years old and have dementia. About ten times a day I walk into a room and cannot remember what I was doing or why I was there. I forget to hang out with my own friends, when they call me it's like "oh yeah, duh, I have all these wonderful friends, I just can't seem to remember to call them. Sometimes I have to re-read a chapter of a book 3 or 4 times because I can't remember what happened in that chapter, even though I know I have already read it).  And poor Keith has been under so much stress for the last 7 months that his ability to remember things is greatly challenged too. Same with poor Peg as well. There are little post-it notes everywhere in the kitchen and dining room because the three of us have to write everything down as a back up because we know we will probably forget it.

It will be three weeks tomorrow since my last surgery (and tomorrow is also my birthday). I woke up today feeling the best I have felt since the last operation. I am almost afraid to say this because I don't want to jinx anything, but so far it feels like the surgery has worked! The pain I was having before the surgery is gone, and even though I am still having normal pain from the surgery, I am no where near the amount of pain I was in before. The hole in my diaphragm was the size of a silver dollar, which allowed a good sized chunk of liver to pop through. After months of the the edges of the hole rubbing against that piece liver, all those tissues were very inflamed and irritated on a deep visceral level causing the extreme pain I was in. (Every time I took a breath the piece of liver would rub in and out of the hole. Think about how many times a day you take a breath and think about all the friction that would be created by the tissue of the diaphragm rubbing and rubbing against the tissue of the liver as your breath goes in and out. It doesn't feel to good, trust me.)

So besides having the physical relief of having the pain gone, I am also feeling validated in my decision to have this surgery, and from having to push to get it. (I have not read all of Keith's post's so I don't know what all he has said, so forgive me if I am repeating him.) I had to fight really hard to get this surgery. I had a really, really difficult time getting anyone to believe how much pain I was in. Finally, on one of our trips to Seattle for regular clinic, Peg and I said we are not leaving Seattle until I see a Pain Specialist, my surgeon, and a Dermatologist. (I also have a mystery rash that no one was addressing so that is why I was demanding to see someone in Derm.). I also completely lost it and broke down in tears because I was at the end of my physical and emotional rope from enduring that pain for months. Males do not do well with floods of unstoppable tears. One of the Post-Tx Clinic nurses is this wonderful guy named Jo, and even though he has been a nurse for like 20 years and has seen it all, he still has not built up much of a defence for buckets of tears.

Finally I seemed to have gotten someone to understand, and Jo was instrumental in getting all of those appointments scheduled quickly for me. Both the pain Dr. and the surgeon (the same one that did my transplant) couldn't believe that this had been going on for so long and that I should have surgery to fix things as soon as possible. Hearing that took a lot of weight off my shoulders. I had been starting to think that I was being a wimp and nothing was really wrong, and that I was becoming hypochondriac and an annoying and needy patient. So hearing these two prominent specialists confirm that there was something wrong was a huge relief.

From there things moved fast. Surgery was scheduled for the next week, so we had about five days at home, and then back up to Seattle. From there Keith has you caught up with the actual operation and hospital stay.

This post is a lot longer than I thought it was going to be. I guess once I start typing, I really get going and it is hard to stop. Also the morphine makes me kind of ramble.

Love to you all, thank you, thank you for all the love and support.