THE appointment--long version

Finally. The cover letter said we needed to be there at seven a.m. It said it in bold, in caps, in regular type, and very seriously. If we couldn't be there they would have to reschedule, so we left very early. I also had to come fasting, which in perfect conditions I'm not too hot with, and with all these meds I'm really lousy.There have been some pretty crazy storms and we were afraid of traffic delays, accidents, aliens, civil unrest, whatever. We got there an hour early and parking in this garage was a cinch.

We went into the dark building and followed the nurse up to the eighth floor. We really didn't know many details about what exactly would happen. I thought I would be the only appointment, but there were three other candidates and their caretakers there. The day was divided up into real appointments. The first appointment was a group appointment with, as the kids so delicately described, my competition. Only about forty per cent of people get their needed transplant, so I guess in a way they were my competition. The nurse gave a power point presentation about liver transplants. We did learn one thing. If you have a positive TB test you will probably need to be on antibiotics for four to six months. Just what I need--more delays. Since about 16% of people do test positive, but don't have TB it would have been nice to know weeks ago. It would be nice if the liver doctor or transplant committee or transplant coordinator has asked about that. If you can't hear the frustration in my voice, ask me in person. You will hear it.



After that they took my vitals. I am such a giving person--and I went the extra mile. I set off two alarms. My blood pressure was 201 over 100 and my pulse was under 50. And I didn't even feel jazzed yet. My temp was normal though.

Next I saw a liver doctor. The transplant coordinator said that they would know about my amyloidosis and what I needed and all that stuff. We went in the room and he said, "So you have primary amyloidosis and you need a liver why?" To my credit I didn't cry or scream. If I hadn't been reassured by the coordinator that they would be on top of things, I could have been prepared. Instead I sputtered, "No, no. I have familial amyloidosis. I can be CURED!" He wasn't ready to get on that particular bandwagon. Luckily I brought my biopsy report with me and was able to whip it out and point out that it had been "refined" three times. Kaiser had sent an inch stack of my records, but no summary or introduction. He wasn't ready to take our word on anything, but I told him the right experts to contact. He examined my stomach and was surprised my liver labs were normal. He also said I needed a kidney liver transplant and I said that is what I'm (desperately) trying to avoid. I also said they would be able to use my liver for someone else. And amyloidosis can take "cuts" in the liver list, so on Wednesday he would be the one to state my case.

The next appointment was with the social worker. She decides if I (and my caretaker) are responsible enough to take all of the meds after. She was surprised we didn't smoke or drink or do drugs or have tattoos (actually all the doctors seemed a little hesitant to go there). Lon thought I should have been more firm about that, but it is such a way of life that anything else would be totally weird. She was surprised we had five kids and that we lived alone. She encouraged Lon to take care of himself and let others help. After all, when I get home, I will need to go to Kaiser Hayward for blood tests twice a week. Any takers? She sure doesn't know about the army of help from the Church behind us!

Next we went to the adjacent building to the financial counselor. A transplant is pretty spendy--actually very spendy. The first year costs range from half a million to a million dollars. Yikes!! Thank goodness for insurance. He told us our deductible (affordable). For the first month, I could be taking 50-60 pills a DAY. There are high doses of immunosuppresents and antibiotics, antivirals, anti other stuff . There are also drugs to prevent the other drugs from burning a hole in my stomach. Then if I have any adverse reactions to these drugs, I take more drugs. Bottom line--it would probably be wise to avoid me for the first three months! He had a nice chart that I had to take to the pharmacy to see how much they would cost, then I had to sign it and fax it back. The first month will be about $7500. Again, thank goodness for insurance (we're at affordable again).

I'm getting pretty pooped out by now, and hungry, and weak (OK the weak part is drama). I see the transplant surgeon next. He has absolutely no clue about my weird disease. It is really tough and we feel like there is just no communication going on. I'm feeling desperate--these are the guys that make the decision. Just as we're ready to leave, I say that he has a very unusual last name. He tells me it is German. I tell him my grandfather was born in Czechoslovakia. He lights up. "I was born in Czechoslovakia. " He draws a Czech map and shows me where he was born. I show him where my grandfather was born. We had a connection. As we left he taught me how to say goodbye in Czech. We felt much better after making that connection!