So Grateful

I can't help but thinking that somewhere in the Central Valley there will be a Thanksgiving table set that is missing a place. That place belonged to the donor of my liver. Somebody's daughter, sister, wife, friend.....
I am so incredibly grateful for this gift of a better life that has been given to me by a stranger. How wonderfully kind and generous and compassionate.
I wonder if the decision was made long before or if it was made the morning I got the call to come to the hospital.
I think by now I would be on dialysis and the amyloid would be silently at work destroying other organs. Instead I cheer my weekly blood tests hoping my kidneys will be a little bit better. No more amyloid is being produced, so my other organs are now safe.
I am so grateful to this unknown young woman and her family. I am so grateful I can be with my family a little longer. Donating an organ truly is a gift of life.

Prednisone!!

So my official diagnosis was "mild to moderate rejection." It is treated by massive doses of prednisone. In the hospital I had 1500 mg. IV prednisone the first day and 1200 mg. IV the next day. I went home with a taper schedule beginning at 200 mg. (oral). I have heard that I should be able to fly around the room or at least have some spurts of crazy energy. The exact opposite seems to be occurring. I feel quite mellow and am sleeping no worse than before, actually maybe a little more. I find myself having to "force" myself to get anything done. It's really frustrating--it takes me forever to get the simplest stuff done.
I'm back to bruised arms--blood tests are back to twice a week. My lab results are improving--thank goodness for that!
It's tough learning patience the hard way, but I've decided that I am stronger than all this stuff going on!

Back to the hospital

Monday I had my regular labs. They were terrible. Early Tuesday we got the call to come to UCSF to be admitted and have a liver biopsy. We got here about noon and waited until about four for our room. As soon as we got here, they took me to ultrasound to mark the spot for the biopsy. It was quite a long ultrasound, They looked at all of the plumbing and tried to find a good spot for the needle biopsy. They finally decided on my right side between two ribs. They could go 2 cm to 6 cm deep. Yuck! they used a sharpie to mark an "X". But then the technician thought the mark would disappear, so he extended it to make a giant X. I may never get it off.

They were going to do it in my room. I had to be awake to cooperate (that's an oxymoron). I talked them into giving me some ativan before they numbed up the biopsy site. Then they got busy and got the sample. I looked at it. I thought it looked like a dinky piece of hamburger. The doctor thought it looked like a worm. Maybe we shouldn't be looking at this stuff. I then had to lay on that side for an hour, then my back for two hours. Then they took a blood sample to make sure I wasn't gushing blood into my gut. Then they had to wait for results. Since I had no food since dinner. only my nasty meds, I was a tad bit concerned. No breakfast, no lunch, and no one caring about dinner. Was I on Survivor or Candid Camera or something?

The squeaky wheel got some grease--but not much. I got a tray with chicken noodle soup that had been in a blender, a tiny carton of cranberry juice, and herbal tea.

I wanted to ask if my chewing abilities were impaired or even if I had teeth left. Finally the nurse got a hold of the doctor to give him a little tutorial on ordering meals and I finally got a real meal about 6.

Now the nitty gritty part--I took three tries from two nursrs to start an IV. It is on my wrist at a weird angle, but it works. The most painful part of the biopsy was the ativan going into my IV before the biopsy. It really burned! I truly didn't feel the needle getting the biopsy.

I get to come home late tomorrow. I am so grateful. There really is no place like home.

A good tip

I was recently talking to Brian about taking pills. Of all the different types of pills I've taken the sodium bicarbonate has been the one of the hardest to take. Some background--it is basically baking soda. Lon went to the pharmacy to pick it up and was told it is available over the counter. Easy. Not. It took him eight trips to four different drugstores to get it. It was way affordable too. Only about $8.00 for a hundred tablets. They are bigger than an aspirin and I think I took two in the morning and two in the evening. So what was the trouble? They were not coated or compressed or something like other pills, so every time I took one they started dissolving and making my mouth nasty and gaggy. It was bad.
Back to Brian. He told me that sodium bicarbonate tablets go down easy with some vinegar. Since I am a veteran of many a Cub Scout den meeting and many science fairs, I knew immediately that when sodium bicarbonate and vinegar are mixed there is an immediate and exciting reaction--lots of foaming and bubbling and sputtering. I called him on it right away and we were both laughing over it. Can you imagine a foaming mouth full of pills? Then he got a second good idea. He thought I should do it in front of Dad and scare him. I told him I had scared Dad enough and he didn't need any more scaring.
Incidentally, I have lots of leftover sodium bicarbonate tablets. If you'd like a few....

Boring...?

Well, it was three months and one week since the big day. My liver is (I hope) happily living in Salinas. I am finally starting to feel much better. My bad reaction to one of the immunosuppressants really knocked me back. I was sick for five weeks or so and I think I am a month behind in recovery. I was so weak when I got out of the hospital, but am getting so much stronger every day.
I don't have to go back to UCSF for three months! Yee haw! And I only need blood tests every other week. My kidney function inched up a little more, and I am so grateful for that--I can really notice how much better I feel.
I think my scar is appalling--Lon says it is a badge of honor! I get "jiggle belly" when I'm up too long or go on a long car ride and "swelly belly" most every evening , probably to remind me of this miracle. I have 23 prescriptions that I take on a regular basis and a few more as needed. I take about 16 pills every morning and 9 every night. I think I'm real tough because I can chug them all in about five minutes. It's good to develop new talents.
I an so thankful this is becoming boring. It sure beats exciting!

More good news

Three weeks ago I went to the kidney transplant evaluation. I passed with flying colors! I was trustworthy enough to afford meds and I would take them on time. I had someone to daycare me after the surgery and take me to follow up appointments, etc. etc.
Well today they called and I got kicked off the list! My kidneys are working too well (barely!) to get a transplant! I am feeling so much better than even two or three weeks ago. I would say it's a miracle!

Something interesting happened...

It's about time for some good news. I have a blood test weekly now (instead of twice a week). My arm is enjoying the break.
Last Tuesday we went to UCSF for a kidney transplant evaluation. We were there from 11:45 until after 6. My kidney function had fallen to about 11%. Dialysis starts at probably 10%. It was very discouraging. The good news is that Lon is willing to be a living donor; he has lost 25 pounds to qualify. I was accepted to be put on the list.
All week I've been feeling pretty well. In fact I think I'd be back to normal if I hadn't lost so much muscle the month I was sick. I've been walking more, but my strength stinks! Well yesterday I went for my lab work and this morning we saw the results. My kidney function has jumped to 19%. It is an absolute miracle! We are able to graph my kidney function and it only changes one or two per cent at a time. I have no idea what caused such a huge jump in the function, but I am very grateful for that, as well as feeling better. Thanks for all the prayers!