Ok...USC visit

So, as a few days have gone by and my brain has rested I guess the USC visit wasn't too bad. I met with the director of surgery. I think that was his title. Anyway, he went over how they do the surgery, where they cut, how long it takes, where they attach the new lungs. All things I already know. But then he started telling me that with all my extra veins and arteries that keep growing, the surgery would be harder (for the surgeon) as they would have to take a lot of time either cauterizing those veins or doing something so that they wouldn't bleed. It sounded like it will make things harder. He also talked about having to put me on a heart lung bypass for 3 or 4 hours of the surgery. I think that is so that they can get all the veins taken care of. I thought he implied that it would be something they needed to do in my case, that they didn't do that for every one's surgery, but since I've been thinking about it after talking to my aunt, I think maybe they do do that with everyone. I'm going to have to find out about that. But it still freaks me out. He talked about time in the hospital, like 3 weeks. And we talked about my score. He said that he felt I would be placed in the low to mid 20's range. He didn't know my calculated score. Now remember the scoring is 0-100 and the higher the number, the higher on the list you are. So low 20's sounded good to me. But also remember that people get transplanted in the 30's and 40's, it just depends on the situation. He let me know that the average wait at USC is 96 days. That almost made me faint. 96 days? I don't think I'll be ready in 96 days. I thought maybe next year or so. But he did let me know that one person was called in 12 days and another has been waiting something like 272 days. He doesn't know that I know Mr. 272 days. He is anxiously waiting and I hope his lungs come in time.

Anyhow, further adding to the having no idea when it can happen is the fact of my blood type. I'm 0+ and can only accept blood or organs from other 0 people. But if I were an A or B...I could accept an organ from the type I was (A or B) and from the 0 people and I think there's other combinations. So my availability of donors is smaller and when an 0 does come up, everyone can use that organ, not just other 0's. So that can make it take longer. I told him I was ok with that!

So I came home with my head reeling...thinking of 96 days. And of course I had to have a couple bleeds that day to make sure I was even more confused. After I got home I wrote to the transplant coordinator to ask a couple of questions. He let me know that my score had been calculated and that I was actually higher than average. Higher??? What is the average? I forgot to ask. He also said my bleeding played no part in my score, that it was based on all the tests I took, not anything else. I thought that the bleeding was what put me higher. How can I feel so ok and be told that I really truly do need a transplant and that if I had no bleeds (which are our major concern) that I would still be scored higher than average and be told I need a transplant?So they tested my heart pressure which is a little high as shown by my right heart catheter, my ability to walk as far as I could in 6 minutes ( I thought I did so good), my PFT's, did anecho and ekg...what else did I do? My kidney test, at least they are fine... my psyc eval should have knocked me out of the running I'm such a mess :) I can't remember what else.

So to make a long story even longer, I have absolutely no idea what is going to happen or when. I'm going to start making my lists. Lists of who to call for what, who can do what when, who will just want to know, my advanced directive, my will, my power of attorney, my phone list....

So that is that. This weekend I'm not doing anything. I talked to my Aunt Sharyn for about 2 hours Thursday night. She really helped me by just letting me talk. I think I repeated myself over and over and she's heard it all before when she was here. But she also gave me a lot to think about helped me to just absorb it all. She also talked to me about a friend in her life that just died, and as morbid as it is, it helped me to just think about someone else for a change. It was a really sad thing that happened, but it was an elderly gentleman and I guess it was his time. I wish my aunt lived closer, but she's always available if I need her.

So that's it for me, transplant and panic. Hopefully it will get easier over time and I'll feel comfortable with whatever decision I make. Oh, my bleeding has finally seemed to stop. I bled about 2 or 3 times a day until Thursday. Nothing Friday or today so keep your fingers crossed. I'm feeling pretty congested though and I don't know if it's infection or just left over crud from bleeding but I started IV's even though I swore I wasn't going to do them this year!

Stay tuned to hear about other events that are annoying in the next blog!