Let's rock and roll.....

After dozens of blood tests and other tests, doctor appointments, consultations, etc., etc., the decision as to what treatment was pretty much left to me. Pertinent facts: I need a liver for sure. It is making the crud gumming up my kidneys. My liver can be successfully transplanted into someone else. It has been done at least five times, and the recipient didn't get amyloidosis. Because of that I can get a high number for the transplant list and get a new liver in the next two or three months. If I want a kidney too I will have a longer wait--probably at least a year--and I will probably end up on dialysis. The doctors are unsure what my kidneys will do after the liver transplant. The doctor from Mayo Clinic told me he has only seen patients like me in kidney failure. I am close, but not there yet. He thinks my kidneys will improve. The transplant doctor thinks the immunosuppressants would nudge my kidney to failure. We don't know what damage the amyloid could be doing to my other organs.

We have decided to go for the liver only transplant as soon as possible. If my kidneys fail and I need to go on dialysis, Lon will get tested to see if we are compatible. If not, he will donate a kidney to the next person on the list and I will be able to take that person's place. I will probably be able to get it sooner than if I wait for kidney/liver. The big negative for me is two major surgeries, but the positive is that I may not need a kidney. Another positive is that if someone else gets this amyloidosis, we will have a better idea of what works.

The kids are also willing to donate a kidney. I feel so honored and blessed that they would even consider it. I hope I don't have to take them up on it.

This decision has been made with much fasting and prayer. Lon and I both feel very good and at peace about it. This is nothing we could even see coming, but already it has taught us both so much. We have seen miracles. We have no idea where this will go, but we know we're not alone in fighting this battle.

Thank you all for your prayers. That is really what's made a difference.

On the way to a decision

Lon and I met 39 years ago. We were both students at San Jose State and met in the Institute parking lot. We loved being together from the moment we met. On a sunny but cold February day (much like today) we decided to take a ride to Mt. Hamilton. It's a very long drive on a windy road. Back in 1971 when we took the drive it was on his Honda 90 motorcycle. We were both much lighter then, but the motorcycle still had trouble climbing up the road. As we got higher in elevation it got colder. At the top of the mountain there were piles of snow and patches of ice. Of course being young and in love didn't mean that we were smart. The weather might have been fine in San Jose, but it was COLD on the top of the mountain. We went into the restrooms and washed our hands--with warm water, then hurried right back down the hill.
We took that drive today. We stopped at Peter's bakery (a favorite for years and years) and I had the most divine eclair (I know--I can't have any fat for the rest of the week) and Lon had a snail. We had a chance to talk through all the stuff we'd been learning and praying about and came to a decision that we both feel good about. We didn't make it to the top. At Grant Ranch a University of California policeman was there and told us the rest of the road was closed. It was closed because of snow and ice. He did say it would open in two hours, but by then it would be dark, and we had our decision--the real purpose of the drive.

Decisions, decisions, decisions

I have recently spoken to the UCSF doctor, the Indiana U doctor, and the Mayo Clinic doctor. Come to find out I have been operating with some fuzzy science. As Lon often reminds me, I am one per cent of a rare disease nobody has heard about--amyloidosis. The test that Mayo did on my biopsy was very new, in fact the paper describing it has just been published. If my amyloid had been discovered just a couple years ago I would have probably been treated for primary amyloidosis--something that would have been useless and potentially dangerous.
I am in a tough spot as far as to what I need to do. There has never been a precedent of only getting a liver transplant. In fact one doctor who is actually treating someone with my disease said that all of his patients have come in on dialysis. He is encouraging me to go with liver only. The other doctors are throwing the ball back in my court and letting me decide. So my choices are basically to get on the liver transplant list and get a liver quite soon, possibly 2 or 3 months (short wait because they will be able to use my liver for someone else) or to get on the kidney/liver list and wait around a year to get both organs (longer wait because I will actually be taking an organ). One of my big fears is waking up from the anesthesia and being in kidney failure. Another drawback to liver only is the risk of kidney failure and needing major surgery again. But if my own kidneys shape up I will need less immunosuppresents.
Alan came over yesterday for a while and we looked up live donor kidney transplants. It is actually a pretty slick procedure. The donor kidney is removed laprascopically and the donor only stays 2 or 3 days in the hospital and can be back to work in 2 or 3 weeks. So if Lon and I were to match, it wouldn't be terribly hard on him. And if we don't match, he could donate his kidney to someone on the list and I could take that person's place on the list.
I would be one of the first to ever get a liver only transplant--that's super scary. Lon thinks I would be a pioneer, but I get mad when he says that. Pioneers are brave, but I'm scared. There are so many unknowns.
Tomorrow I have an appointment with my kidney doctor. What I think I want to avoid most of all is dialysis, so I can ask him how close I am to kidney failure.
I am grateful for prayer and feel like that's where my answer will come from.

Speaking of blood types.....

Lon and I are both O+ blood type. Our children must all be O+, except.....

When Brian was in high school he donated blood for the first time. The Red Cross sent him a nice letter thanking him and telling him his blood type for future reference. It was AB. Of course Brian being Brian couldn't just call them up and ask them to double check it. Armed with high school science know-how he approached us and asked us why we didn't tell him.....

"You could have told me, I'm old enough."

"Told you what?"

"That I'm adopted."

Of course with me being me....

"You're kidding right? Do you think any adoption agency would let us have a kid? We're such bad parents. Get real."

"I should really call you Mrs. Tidwell and not Mom any more."

And so on and on.

Just another example of why I am so old.

(eventually the Red Cross sent a letter to correct the error)

Liver transplants and lab results

Currently there are many more people that need livers than livers that are available. At least half of the people who need livers have livers that have been abused by drugs and alcohol and disease because of that abuse. At the liver transplant evaluation that aspect of my lifestyle was especially scrutinized. It made me feel very uncomfortable actually. I'm used to people believing what I say, but I guess they have to treat everyone equally. So I had my first drug tests. I thought those eight vials of blood were for medical type stuff mostly. Was I ever wrong! I was tested for amphetamines, marijuana, cocaine, opiates, barbituates, methadone, oxycodone, benzodiazepines, and alcohol, as well as HIV and hepatis C. The good news, I'm clean. It still makes me feel weird though even getting tested.
They also tested my blood type, twice, once from each arm, by separate technicians. They were both the same. My GFR (glomuler filtration rate-measures how well my kidneys are working, should be greater than 60) is 26, up slightly from a couple weeks ago. My creatnine is 1.97, that should be less than 1.1. The kidneys get more gummed up all the time.

Insomnia

This is something that I have no experience with. As a Mom of five kids, insomnia was the last thing I could even think about. Now I wake up regularly, usually at 2:00 AM. It's not just being awake--it's feeling more alert than I do during the day. So what's to do at 2 when the house is chilly and quiet? Lie in bed and wait to go back to sleep--sounds like a good idea, but at that time all of the things to worry about take on added importance and significance. TV is a possibility. We have closed captioning on, so I really don't need the sound to watch it. The sincere people selling stuff are pretty hilarious for a couple of minutes. The two TV shopping channels put stuff on in the middle of the night that no one would even begin to consider buying during the day. Last night they were selling a lint brush--OK and useful--but the demo was amazing. They had a dark suit jacket that someone had painstakingly applied lint to--it was a real work of art! Reading is OK. I've been able to keep up with my Sunday School reading, but what usually happens is that I go back to reread something and I don't remember a thing about it. Talk about going through the motions.
When I got the first diagnosis of amyloidosis and read that it was fatal four to eight months after diagnosis, I almost had a panic attack or meltdown or something. The oncologist gave me some ativan and xanax. Previous to my visit to UCSF I would take a half or quarter tablet of one or the other after I had been up for a while. At UCSF that was considered a big no no. They said to take benadryl. That sort of works, but leaves me fuzzy.
The end result is that I feel like a zombie most mornings. I'm sure it's a combination of lots of things and hopefully temporary. Until then, I just need to deal with it.

Grandma day care... NOT

Karen is expecting a daughter in March, but is having some serious complications. She spent several days in the hospital and got sent home to be on strict bedrest for the remainder of her pregnancy. She has three very active little boys who like to eat, wear clean clothes, play, and generally take up all of her waking moments. Her husband is in school all day and has team meetings from 6 to 10 most nights. Of course I should be there helping. We are both very frustrated. Her mother-in-law has generously taken the two older boys home to Utah. It is not the most ideal situation since Karen and Ben miss those little guys so much, but it is the best solution. Karen was a nurse in the newborn intensive care unit so she knows the problems these tiny babies have, so she is taking her bedrest very seriously. She has people in her ward lined up to take Tyler and bring her lunch every day. She is so grateful for the help and celebrates each week she continues this pregnancy. Randy has been a big help too. He is getting competant in changing diapers and understanding Tyler. Ben is such a good husband, always looking for little things to help cheer her up and making good dinners. If you want to look at her blog here is the link http://www.chickachickabloombloom.blogspot.com/.

Primary care doctor

On Monday I went to my primary care doctor, mainly to talk about the elephant in the room. I have never been to a doctor to specifically deal with my amyloidosis--only the symtoms. When Lon broke his leg last year can you imagine if he was treated for only the symptoms. "Gee, your leg is swollen. Let's put some ice on it." "You say it hurts, take some tylenol." "It still hurts? Take some advil with that tylenol." "You can't walk? Use a wheelchair." You get the idea. And finally when he sees an orthopedic surgeon who can actually do something, he hears, "So you fell down a hill and can't walk? Well, you're clumsy. You need to go to a clumsy doctor." (If you ever want to hear me do it with voices, let me know.) Unfortunately the nearest doctor is in Indiana. There are also doctors at the Mayo Clinic and Boston University.
I did find out that UCSF deferred my listing. I was so disappointed. They need to know which combo or ala carte I need--liver only, kidney only, or kidney/liver. They requested my kidney biopsy slides--why? I can't even fathom a guess (they are very tiny samples, together they measure less that 7 mm long and their diameter is less than a millimeter). They have been tested for different things multiple times. One of my blood pressure meds was doubled. That was about it.

More frustration...and maybe a miracle

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.

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.....

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!

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!

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.

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!

Christmas PJs

This year we had the privilege of getting thirteen pairs of Christmas PJs! What a blessing! The three older grandkids got one of a kind, but all of the preschoolers got matching PJs. It's not easy at all finding six pairs of matching boy's PJs and four matching girl's PJs. We went into Costco and they had a very fresh shipment of neatly folded PJs. We stood picking them out and figuring out sizes. We got more than one curious look, but I think we did OK with the sizes. The girls got cute pink one with a cupcake on the front. The boys got the always flattering red and brown horizontal stripes. Sadly, this year they were not all together, but we managed several partial group PJ dances.

Disneyland

Speaking of going back.....Karen and I had all kinds of schemes. We got Disney season passes last Spring. We had all kinds of plans, unfortunately that ditty about best laid plans blah blah blah reared its ugly head. She and the kids and Randy flew in from Virginia. We planned one day to go to Disneyland...and it actually happened! Karen and I and the little boys drove in one car and Lon and Randy drove in the other. I guess we were short sighted in giving up the van.
We got into Anaheim and checked into our hotel right across the street from Disneyland. Walking distance. Sure. But if you are going to walk around Disneyland for 12 plus hours the walk to Disneyland was really insignificant.
We got there just as they started setting off fireworks. Since we were on the eighth floor the explosions were really loud. Multiple car alarms went off and we enjoyed the show.
The park opened at nine, so true to form we were there at 8:30. One very fun thing about going with Karen and the little boys is that she (and I) have absolutely no shame or reservations when it comes to getting the kids excited. Yes, once in a while we get and odd look or two, but what's the use of going to the happiest place on earth if you're going to be serious and boring?
We always start off in Fantasyland--Dumbo to be exact. One year old Tyler loved the ride. He had a huge smile and was very reluctant to move to the next line. We moved on to Casey Jr. train ride and of course sang along with great enthusiasm. Lon and Randy didn't join in, and had the good grace not to pretend to know us. Karen couldn't go on the Teacups, but Grandpa and I went with the boys after warning them not to spin up. With big grins they readily agreed and spun us as fast as they could while we screamed away! And so the day went.
We love Disneyland!

Looking back

It seems like a lifetime ago, but just a year ago in December I was in Texas helping Robert and Marie when they had their fifth child, sweet little John. Everything was "normal" then. I was performing my "proper" duties--playing with grandkids. My biggest gripe was no Christmas tree when I got home. Lon was supposed to get it while I was gone and he totally failed. It's funny how my perspective has drastically changed in only a year. I want to go baaaaccckkkkk!

Thanksgiving

Alan and Ellen were kind enough to invite us to their new house for Thanksgiving . It was kind of tough for us. We have been doing Thanksgiving for a long time and it was probably time for a change. It was great. I don't know how they had that house organized and all moved in and decorated so cute, but they sure did. We had a lovely (and yummy meal). The best part was after--the Thanksgiving Extravaganza. In third grade Alan learned a Thanksgiving poem, "If I Were a Pilgrim Child." It has taken on a life of its own. It is a legend. Sometimes even hilarious--he does it so seriously. He has taught it to his three year old daughter so it has returned to its proper roots. She recited it flawlessly. There was also a reenactment of Indians ,Lincoln and Teddy, showing the little pilgrim girls, Alice and Natalie, where to find cranberries. It was a thespian delight-as only two three year olds and two one year olds can do. What sweet, sweet kids. Thanks kids for such a nice day.

Off to the Dentist in November

Another thing that needs to be addressed before a transplant is making sure all dental work is up to date. I spent the last 50 plus years dreading the dentist. In fact I was a real proponent of crisis dentistry--there's no motivation like a throbbing toothache! But the last few years have been pure magic! I look forward to visiting the dentist and have a great time going there. Why this drastic reversal? While our youngest son was on his mission he decided dentistry would be a great career--and it is. I love going to see him. He is in Oregon and the drive is always beautiful. We start out with the best intentions of driving straight there, but we get into Northern California and the Oregon Coast beckons us. Sure enough we detoured over to the Coast.
The first thing we always look for is a turnoff to visit the elk. Down a gravel road less than a hundred yards from Highway 101 is an elk preserve. Every time we have been there except once the elk have been right there--grazing in a field. This time there were at least two dozen. We loved watching them.
Down the highway were the redwoods. They are so majestic. We stopped for dinner at a seafood restaurant that had a lot of cars in the parking lot--usually a good sign. We love seafood, but are usually reluctant to order it in a restaurant just because fish is so easy to cook and so easy to mess up. This was OK.
We spent the night in Gold Beach. The motel we usually stay in backs up to the ocean. We like to turn the heater up and open the door. I know it's not very environmentally good, but we only do it for a few minutes. It is amazing--the loud surf and the biting sea breeze!
We got to Brian and Christine's the next day. They are absolutely so sweet to us. I appreciate their TLC. I may not be terrified, but I'm still a little leery.
We went to the office the next day. Brian gave us the grand tour, and the receptionist asked if we were the doctor's parents. I don't know if we will ever get used to that. He cleaned my teeth very carefully and even filled a little filling without novacaine. What a good dentist! They treated us to dinner that night and we took off for home the next day.
Of course the best part of the trip was visiting the grandkids. They are growing up so fast and are so smart. Great job guys!