Let's review, my kidneys are failing at a steady and alarming rate. Nothing will help until my liver gets replaced. Oh yes, now I may have to take antibiotics for four to six months before the transplant due to my positive TB test. The immunosuppressents I would need to take after the transplant could cause a full blown case of TB--not good. I have never had TB, but apparently that doesn't make any difference. There's nothing I can write to convey the frustration--nothing! On Monday I went to my Primary care doctor and he said to go ahead and take another TB test, something that is usually not done.
A little background on my positive TB test. Back in the olden days, most kids got all of their immunizations at school. It was the second most dreaded day in school when the teacher passed out those miserable buff colored shot records. Of course everybody's mother always signed them. The most dreaded day was when the cafeteria smelled like alcohol--sort of the day of reckoning. You would sit in class just dreading to hear the teacher tell everyone to line up for that trip to the cafeteria. It was always the most silent walk to the cafeteria--no looking forward to lunch or chatting with friends. Thirty two little kids, sadly, slowly trudging along. I suppose that the health department only sent out one nurse. She was ably assisted by those PTA volunteers. Like all of my classmates, I avoided looking at those cafeteria tables lined with the stuff that terrifies the kids the most. I know they didn't have disposable syringes, and I wonder if they reused the same needles. Anyway as we went along that kid-sized assembly line, we got our arms swabbed, our card read (I hope), and the shot(s). They never even sat us in a chair. The modern way. The futuristic way. (Yes, this sounds dramatic. It was. Lon just told me his brother got his shot, took a couple of steps, and collapsed in someone's arms. Can you imagine letting you little kids get shots this way? Don't you want to be holding and comforting them?)
My TB test was in high school. It was during the Vietnam airlift and there were whispered rumors that someone had TB. Permission slips were sent home and the gym transformed into the efficient TB testing lab. I was a senior thinking about college and my Future. I got the test and it was read two days later. My parents got informed and I was hustled off for a chest x-ray. Thankfully it was negative and I didn't think much about it until I started teaching twenty years later (it took a long time for me to graduate from college). I said I tested positive and from then on I just got chest x-rays. Of course they were always negative.
Back to the present. Monday I had the TB test. There are different categories of positive and negative depending on your health and the size of the wheal (bump). I had absolutely NO REACTION. After I pulled up my sleeve, the nurse said she didn't even have to feel it--she could tell it was negative by just looking at it. I said, "Feel it." It was very negative. I told her I had tested positive many years ago. She said she had never heard of a positive test ever testing negative. A case of a PTA Mom misreading it or a miracle? I know what I think.
Thursday, February 4, 2010
THE appointment....still there
Yes, I did more things on the big appointment day. After meeting with those people it was time for some lab tests. We went to the lab to get blood drawn. The lab was huge, and obviously built in the 80's--lots of individual stations and doors and hallways and confusion. My number got called and I was off. I had a very chatty phlebotomist, and that comment coming from me carries some weight! She had to go check what the coding on my slip meant. It meant eight vials of blood. And ten minutes later one more--by a different phlebotomist. I told her I needed the little needle and she believed me. After she saw my near invisible vein, she got a little gel warming pack to put on my vein so it would pop up a little. In the meantime someone passed out in the little stall next to me and they were yelling for a doctor. Hmm...level of confidence a little shaky, however she got all eight vials with no problems, pain, or bruising. A winner! Now, why did I need another blood test only ten minutes later? It is a requirement of the organ transplant organization that potential candidates be tested for blood type twice by different phlebotomists. All those other tests throughout my life don't count. I am getting so adept at jumping through hoops.
Next was the finale, the abdominal ultrasound with doppler. I have had a couple this year. This one took much more time, and slimy goo. He poked and pressed and scooched and went all over my belly and sides and even my back. It's really amazing that they can tell so much with such a non-invasive procedure. Of course during the test he could hand out no information, but we did get to enjoy shadowy blobs that were my organs. And he did get some lovely pics of my bummer liver and kidneys. And after he was finished I asked him the big question--Is it a boy or a girl? It took him a minute, then he laughed. It takes so little to get my chuckles these days.
Finally we were through. What a day--physically and mentally draining. Of course we couldn't go straight home. We drove to the Great Highway to watch some waves, but before we go there Lon found a Burger King! Yes, my husband doesn't let me down! It would have been nice to get some real food, but nothing was more real than that hamburger right there. It was divine.....
Next was the finale, the abdominal ultrasound with doppler. I have had a couple this year. This one took much more time, and slimy goo. He poked and pressed and scooched and went all over my belly and sides and even my back. It's really amazing that they can tell so much with such a non-invasive procedure. Of course during the test he could hand out no information, but we did get to enjoy shadowy blobs that were my organs. And he did get some lovely pics of my bummer liver and kidneys. And after he was finished I asked him the big question--Is it a boy or a girl? It took him a minute, then he laughed. It takes so little to get my chuckles these days.
Finally we were through. What a day--physically and mentally draining. Of course we couldn't go straight home. We drove to the Great Highway to watch some waves, but before we go there Lon found a Burger King! Yes, my husband doesn't let me down! It would have been nice to get some real food, but nothing was more real than that hamburger right there. It was divine.....
Monday, February 1, 2010
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!
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!
Lab results
I'm getting lab work done monthly now. The kidneys are steadily getting gunked up and failing. Have I mentioned this stinks?
Test run
A week before our appointment, we took a test drive to UCSF. Armed with our new GPS we took off. According to the GPS UCSF was less than 40 minutes away. Right. We took off and after three wrong turns and more than an hour later we got there. The parking is as bad as we heard. The location is at the top of a hill. The 6 or 7 level parking garage is underground as you drive in, but on the back side it is above ground. That's how steep the hill is that it's built on. We were the complete, dorky, gawking country mice, but now we were a little bit smarter.
Of course we couldn't go straight home. We went to Point Reyes and watched the giant, stormy winter waves. I'm glad we have these adventures!
Of course we couldn't go straight home. We went to Point Reyes and watched the giant, stormy winter waves. I'm glad we have these adventures!
What? The phone call?
Sometime in December I got the call that I got the appointment for a Level I liver transplant evaluation. Unfortunately, the appointment wasn't until the end of January. Don't these people know we're in a tight time frame?
The transplant coordinator had a short pre-, pre- evaluation. Yes, I can still wash my face and dress myself, thank you.
The transplant coordinator had a short pre-, pre- evaluation. Yes, I can still wash my face and dress myself, thank you.
Christmas Eve
Alan and Ellen invited us to Christmas Eve dinner. They made a dinner that might be typical in Bethlehem--fish wrapped in parchment, figs, unleavened bread and hummus, and vegetables. The little kids had some Christmas songs to share. Teddy's second birthday is right after Christmas and he isn't much of a talker, but he can sing. For the words he doesn't know, he just substitutes sounds. It's very hard to keep a straight face when he is giving his all to sing Silent Night. He also gets stuck in one part, so it doesn't actually end until you jump in and help "bring it home." You can't teach cute!
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