Still waiting....

Living in limbo is tough. UCSF does 150 liver transplants a year--about three a week. Every time the phone rings I feel like throwing up, and to make matters worse, I can't decide if I'm glad it's not them or if I'm disappointed it's not them.
In the meantime the Mayo Clinic in Florida has all of my info and they should decide soon if they want to accept me as a patient. Hurry, hurry, hurry. Wait, wait, wait.

A quick post

We just got a call from UCSF and I am back on the top or near the top of the liver only transplant list with a score of 32. This means I could be called at any time for a liver only transplant. They have also chosen the recipient for my liver. Scary times.
We are praying that when the liver no longer produces the bummer fibrinogen that the kidneys will get rid of a bunch of amyloid and I will live happily ever after.

Friday, March 9 Graphic post, you've been warned

The transplant stuff is discouraging. I should blog (rant, scream, curse, ????) about it later. I had an interesting experience this weekend. On Thursday I got a bunch of blood tests--I think they were all the same old stuff. Friday morning a strange kidney doctor called (my regular doctor is on vacation) and told me my serum potassium level was high--6.0. She said at 6.1 you are called and told to go get treated in the ER. I could treat this in the comfort of my own home! It is dangerous because potassium level affects your heart rhythm. She told me I had to take a "brown liquid." Perhaps at this point I should have suggested chocolate milk or root beer or diet Coke. She also told me to discontinue one of my blood pressure meds and substitute another. So off to the pharmacy we went. The brown liquid came in a huge bottle (and cost $99.00!). The directions were four tablespoons tonight and four tablespoons tomorrow. GROSS! The blood pressure meds were 5 mg. capsules The directions said to start with 1 mg. because it could cause dizziness and fainting. Are you seeing a theme here? So I'm supposed to discontinue one very high dose med and start two crazy new meds--one at five times the recommended starting dose--and on a Friday night!
Well, Alan came to the temple Friday night and he brought me home a little early so I could take the brown liquid (actually the name is Kionex, but the doctor kept it way simple for me and called it a brown liquid. I will continue keeping it simple.) The directions said I needed to stay upright for at least an hour after I took it. Alan is a good son for many reasons. Friday night he was a good son because #1 he felt very sorry for me, and #2 he offered to taste it for me. I was very appreciative of that and let him taste it. He described it as cooked down and liquefied Peeps, slightly burned with cream and gritty salt added. I got out a measuring cup (I'll spare the details of how to measure that were included, but they were thorough) and poured my portion in a glass. I went out side in the cold, fresh air and thought I could just chug this stuff and stop being a whiny drama queen!
Wrong, wrong, wrong! Oh my gosh! It is a thick resin and totally unchuggable. I could only get down tiny swallows after gagging violently. I managed maybe three tablespoons. Yuck! I was up all night with stomach issues and all day Saturday I had a miserable stomach. Finally Saturday night I started feeling better.
I also made a few executive decisions. The doctors have not been doing a very good job and my confidence in the medical profession has been shaken.
My blood pressure improved after I discontinued the original meds. I have been monitoring it often and it is staying down. Yee haw! I didn't take the new blood pressure meds that were five times the recommended dose. I also didn't take the second dose of the brown liquid. Monday I went and got a blood test for potassium and it was well within the normal range. Lon thinks I had been eating too many potassium rich foods. I thought it was a false positive (I have had one before). I think the doctor should have ordered a second test before she ordered the brown liquid.
And to think this adventure went better than the transplant stuff.........