Christmas Jollies

Tonight Lon and I went to the Mall. It was pretty crazy. Our strategy is to be super patient, cheerful, kind, etc. A sort of "Kill 'em with kindness" mindset.
Lon was in the cell phone store (boring) and I was in a nearby store and bought a couple of things. He was thoroughly engrossed in the salesman's spiel about this phone and didn't notice me when I walked in. I walked up behind him and stood as closely as I could without quite touching him. He didn't do anything. Then I leaned into him. Still no response. I had the silent giggles so I had to lean back while I gained control, then I leaned again until I was actually moving him forward into the counter. Still nothing. Finally I couldn't stand it and gave him a shove! He noticed me and started laughing. I asked him if he even felt what I was doing. He replied that of course he felt me and thought I was just a really rude person.
It takes so little to amuse us (the clerk thought it was pretty funny, too).

It's official! I'm turning into my Mom.....

I am so fortunate to have fourteen beautiful grandchildren. Four go to school and the rest are preschoolers (we have three that will start kindergarten in the fall and four two year old's this year!). Trying to find toys for each of them has been terrible this year. It's true that anemia fits into the picture (I fade after less than two hours), but still two hours is two hours for a pro like me! The selection is so poor. I was trying to find a baby toy that didn't screech or flash or annoy. I also looked for a car or truck that could go in a sandbox and get hosed off and be sturdy. I couldn't get close. The toys are so over packaged and over priced and look like junk.

What does this have to do with my Mom? She claimed to love grocery shopping and hate shopping for clothes. She would wait until the last minute, then we'd go shopping. She'd reluctantly pick out a couple things to try on. She'd then look in those three-way mirrors and declare that she had to reduce! And that was that and shopping was over.
So she would send me off with explicit instructions what to buy for her (even shoes). The problem was that they hadn't made those styles in ten or twenty years. It was very frustrating. I ended up sewing many of her clothes and her shoes kept going and going.

Now I feel just like she does. I'd like to get some fun, sturdy toys that aren't overpriced, but I fear I'm ten or twenty years too late. I guess I'll just give a heads up to Karen--watch out!

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!

The Wedding!!!!!!

Who'd a thunk we'd even make it? It was wonderful!! The Washington D.C. Temple is just beautiful inside and out. Karen's sister-in-law is an amazing photographer and happened to be there a couple weeks before the wedding and took formal pictures. Aren't they great?

We made it!!!!

Thanks to tons of prayers on our behalf, some romantic nurses and doctors who wouldn't give up, and some Southwest Airline finessing, we made it to the wedding! We were scheduled to leave last Wednesday as I laid in the hospital bed. That was the low point--watching the clock tick past the takeoff time.
Boy could the hospital move fast when it wanted to! While they were busy doing that, Lon was checking out flights and rebooking, etc. We left Friday morning and had to pay only a small amount extra. Things are working!
My pride and strength are both sorely lacking, so I cheerfully used a wheelchatr in the airport. The plane was freezing, and luckily our friend who took us loaned me a warm blanket which I wrapped up in like a mummy. Same comment about pride here!
We flew into Baltimore--about a 40 minute drive to the hotel near the temple. All the kids were staying there. It was fun to see them, but there may have been a tear or two.
It's in the middle of the night (insomnia?)so the wedding details will be tomorrow.

Home!

Yesterday I got home from the hospital. It was a miserable visit. I had been incarcerated since Friday. It felt so good to drive up the driveway and hear the hound yapping. I'm not so dehydrated anymore and my arms are truly a mess. Not only do they look abused, the bruises really hurt.
They decided all of my problems were med related, so they switched most of them around. Lon spends an inordinate amount of time at the pharmacy and manages to keep everything straight. I am so happy he does the med day care.

The Blood Robot

On my way to the elevator in the UCSF hospital I saw an interesting sight. There was a robot cart heading for the elevators, that was announcing that it was getting on the elevator and not to get on with it. Two medical people were chasing it and kept hitting the stop button. When they hit the stop button it would say that it would stop for 30 seconds. While it was stopped they were desperately trying to open it's lock code to get inside. The robot made it all the way to the elevators before they got the access code through a phone call. They pulled out a cooler container and it promptly summoned an empty elevator and went inside.
It brought back thoughts of all the books and movies where man created robots take over the world. For a while it seemed like the robot was winning, but eventually man prevailed!

Strangely quiet

Well, if you've noticed that the blog has been strangely quiet, it is because I have been strangely sick. I can't eat or drink---in the last week I've lost over ten pounds, and I just don't have that much weight to lose. I've been going every other day for a liter of fluids and it really doesn't help. I am so weak--going up or downstairs really require some planning.
This morning I will be readmitted to UCSF and hopefully little lightbulbs will go on and they will fix me right up and I will be bugging Lon like crazy to cook for me.
Please say a prayer for us. Love to all.

Some Good, Some Not So Good

Monday's tests are back! Kidney function has improved some and we hope last week was a low spot. Anemia is a little worse and she feels weak and tired. She does so hope that the doctors clear her next week for out trip back for Randy's wedding.

Also pains are going away!

Bad Week

It is a bad week when you go to the doctors more days than you don't! Kidney function is not picking up like we hoped. Kidney function has dropped to near dangerous levels. Cathy has a continuous sick stomach and has become dehydrated. She eats and drinks very little. I feel like I am feeding a bird. After an IV of fluids she was feeling better, but now has another purple wrist. I am anxiously looking forward to Monday's lab results. Monday or Tuesday medications are to be adjusted again to give the kidneys a break.

Back to the Doctor

I go to UCSF on Tuesdays. On Mondays and Thursdays I go to Kaiser for lab work (and my Monday shot). Going so often blurs the week. On Monday when I went Lon, gave them the UCSF lab sheet. It has orders to test 18 different things. The receptionist said that my kidney doctor wanted a urine test too. OK. They called me in and she had all the bar coded tags ready and started taking blood. And more blood. She said they were small tubes. I was a little concerned because my anemia is so bad and I work like crazy to get my numbers up. Well, I start getting the lab results on line. It seems the receptionist went crazy. In addition to the UCSF labs, she included labs from both my liver doctor and my kidney doctor. So there were duplicates. Seriously, can't they read the same labs? One interesting note is that my two different creatnine tests had two different results. Weird.
Yesterday the trip to UCSF was one that I was really, really dreading. Staple removal. Sixty-four staples, 128 little, sad holes in my abdomen. I planned my pain pills very carefully to make sure I would have the most relief at the best possible time. I counted on Lon being lucid to adjust the meds and all that stuff. The doctor came in first and tweaked the meds. I complained about being tired. He said I was doing better than 90% of their transplants and I had just had a huge surgery and I needed to be patient. Sure. When have I ever heard that before? I wish I learned faster.
Then the nurse came in to remove these mean staples. I had to sit in a chair kind of like a dentist's chair. She brought it up high and leaned the seat back. The staples on the side are the most tender. Did you hear me scream? That's because I didn't. There were a few ow's and a few wiggles, and she got them all out. She then put steri-strips on them. I'm not sure what they will do other than adding to the adhesive build-up.
I am so happy the staples are out. They hurt a little more the rest of the night, but this morning I can tell I'm a little closer to getting back to my old self!
I got to keep all of the staples. Let's just say , "Kids, there might be a little something extra in your stockings this Christmas."

The goats are back! Grandpa and the goats!

We live on a small hill. On the back side of the hill is the neighborhood park. Since the hillside is so steep, the parks department contracts with a goat herder (and his dog) to bring goats to the hillside to eat all of the weeds and wild grasses. He sets up temporary fences and just moves them along the hillside until the goats eat all the weeds. It's pretty cool.

Well, two years ago when I was off visiting the kids, Lon wanted to see what the goats did. Seriously. Even I can't make up something like this. Maybe he was expecting hieroglyphics or crop circles or who knows what? So off he goes after dinner. That's our house at the top.

There is a gate up there and he went out it and started climbing down the hill. He only got about a hundred feet and slipped. For the longest time I envisioned a Homer Simpson type fall--lots of bouncing and head over hills and all that. He explains it as pretty much standing on an unstable dirt clod and turning his ankle.
He was all alone. We (the kids and I) have teased him unmercifully about making a crutch (Boy Scout style) and limping to the street awaiting some kind soul. There was also discussion about him crawling out. Luckily he had his cell phone. He called the fire station that is across the street. "I heard them start their engine. They were here in 3 minutes." The fireman had to holler down the hill to find him. A couple of fireman took their first aid kit down. He was offered morphine, but bravely refused it. Ask him why.
They took a litter and strapped him in and winched him up the hill to the awaiting ambulance. In the ambulance he called me. I flew home from Salt Lake City before he got a room in the ER. Luckily Alan came and tried to keep things moving.
Two surgeries, thirteen screws, one plate, 25 staples, one walker, and two crutches later all he has to show for his pain and suffering is cankles. Oh well.
And if you want to know what goats do on a hillside--not much!

A long, long day

Yesterday was my first trip back to UCSF. I saw the surgeon, and he is delighted with my progress. The appointment was for 8:30 A.M., so we had to get up early and drive in a bunch of traffic. I walked from the parking garage to the clinic. He adjusted my meds and I got more pain pills. I asked him about a pulling feeling that I have in a place far away from the incision. He said that if I knew what he did in that area, I would know why it is so sore. I have cut down on the pain meds and notice all sorts of sore spots throughout my abdomen. The bottoms of my ribs are also very sore due to the retractors.
We decided to go home through Half Moon Bay along the Coast. It was very pretty and we got some peas (Karen, they were even more delicious than the ones we got). We had to stop at Kaiser to pick up the prescriptions and I had to do some labs. Finally we got home, only to go back after dinner to get more meds and another lab test. I was tired!
Tomorrow I have to go back for my regular labs. This is hard work!

and...and....and

The range of guesses for the total length of the incision was a low of 13 inches (thank you Brian!) to a high of 32 inches (what were you thinking Randy?). Dad measured and the total is 16 and 3/4 inches. Congratulations Christine! The staples were a bit trickier. Dad had to start over because he lost count. The range of guesses was a low of 26 to a high of 75. Sadly (for me) the high of 75 was closest to the actual count of 64. Congratulations Karen! They get removed next Tuesday--I think that will be the last big owie for awhile.

Contest Anouncement!

The kids have decided to guess on how many staples and the length of Cathy's incision, horizontal plus vertical. Results to be announced tomorrow!

Lab results and a little more

UCSF called this morning. They tweaked one of my meds (less!!!) and the lab values are good. Creatnine (kidney function) was higher, but that was due to to one of the meds. I am still anemic and very weak; I didn't need a lab test to figure that out. I spend most of the time on the couch or in bed. The surgery part feels OK and if I had any energy I'd at least be walking all over and maybe sorting and folding clothes.

Amyloidosis

Amyloidosis is a strange disease. I've seen probably about 50 with familial and 20 with primary. I also belong to a nationwide online support group with many members. The common thing between all of these people is that the amyloidosis affects each of them very differently. The protien fibrils basically destroy organs and tissues--personalized. The only way to diagnosis it is with a tissue sample--there are no blood tests or x-rays or anything. For those reasons it usually takes awhile to diagnose it after symptoms have appeared.
Tonight at 10:00 pm (9 central?) on ABC there is a TV program about a guy with amyloidosis. I've also heard there are a couple of "House" episodes that feature amy and one "Mystery Diagnosis". I'm looking forward to watching it. Might be interesting....

Win-Win

Today I got to get out of the house. I was actually looking forward to it, but car rides still jostle too much to be fun. I looked at the lab slip. I go every Monday and Thursday for I don't know how long. The lab order was for 100 visits and expires in a year. I'm tested for eighteen different things. Luckily it only needs four vials of blood. I'll be able to get my results online. When I gave her the choice of arms, she kind of gasped. They look awful!
I'm wondering how anemic I am. I have a chair at the top of the stairs as a "pit stop" when I go to bed. I took a couple of short walks to the door last night and am beginning to walk like a human being--good foot positioning and good posture.
The house cleaner comes this afternoon. It's shaping up to be a better day!

Help

I need about an hour's worth of housework today or tomorrow. If someone can help and email me I would sure appreciate it. Thank you so much.

Buttermilk pancakes

I just finished eating almost a whole buttermilk pancake, a strip of low sodium bacon, and a glass of grape juice at the table. It sure makes getting up something to look forward to! Lon makes them from scratch and makes them often enough that we can use up a half a gallon of buttermilk before it spoils. Thanks honey!

Pain

I think the surgical pain (envision a piece of barbed wire wrapped around your stomach and being cinched) is getting under control. I have had a horrible stomach ache from all of the meds I have to take. I take the next batch around 10, so I'll see if I need to call the doctor.
I'm really walking and sitting well. I climbed a flight of stairs at the hospital yesterday because the physical therapist and Lon got all buggy on me. When I went to bed at 11 I climbed right up the stairs. I sat to brush my teeth though.
We didn't get home until seven last night. It was a long drive home in traffic and we had to get a few more meds at the pharmacy first.
Today the order of business is to get a few groceries. After being gone for a week we need to get a few things. Whatever will Lon do without me? He has been at my side the entire time--he'll never know how much that has meant to me. Looking forward to feeling a little better today.

And things are looking up???

Just when I'm getting ready to make a gushy post to the heroes in my family, they offer more help. Brian wants to come and read to me Eclipse. Robert wants to find a copy. Alan wanted to get a bucket of silverware and shake it ouside my door every half hour so I wouldn't miss the 4 am blood tests, the 1 am weighing, the vitals, etc. etc. Obviously that post will wait.

HOME!!!

Holy Smoley!!!

I guess I'm going home today. Everybody thinks I will do much better in my own home with my own pain meds.
The holy smoley is my kidney function. It has recovered to where it was in January! The med. team was in the room and told me and I threw up both arms to a rousing, "Yee Haw!" They laughed with me. What a great blessing!

Lillys Freshen The Day

Alan brought by these beautiful Lily flowers. The hospital room now smells like a flower shop. I think we get extra people coming into the room so they can smell the flowers. Almost everyone that comes in comments on them.

We are still working on getting a pain meds schedule. Other than her high blood pressure all her numbers look good.

Lon

Sunday afternoon

I love watching the fog outside my room in the morning. This morning was no different. My Dad used to tell me that it's a good day for a nap. It was an excellent one because we each had at least a couple!
My kidney function improved overnight as did my hematocrit. Very grateful for that.
I was disappointed in myself this morning--I didn't feel well at all after breakfast. I don't know what it was--it could have been oral steroids, or low oxygen saturation, or anemia or plain old laziness. This afternoon I did take a short jaunt to the nurses' station. That will have to do.
The plan is to go home tomorrow. I'm OK with that.
Thank you for all of the well wishes and prayers.

Wow!

I got to spend some time with Mom today. She is making great progress and will probably come home on Monday.

Saturday Morning

At least that's what the clock says. The clock in my room tells the day of the week along with the time. Normally I would consider this extra information, but things get skewonky around here.
I've had breakfast and a walk around the floor up here. I've had morning meds, blood work, vitals, sugar levels, insulin, and probably a few more things done. Safe to say that I've been busy, but haven't accomplished much.
Lon is fantasizing about a shower and change of clothes, so maybe Alan will spot him for a couple of hours.
I'm a little more anemic, but that's hardly new.
We are lucky today. My little section of hallway is getting waxed! It's noisy and I'm blockaded in. Must be patient.
Thanks again to all of the well wishers and prayers said in our behalf. They are certainly appreciated.

Settled In

Cathy is doing very well. We just did a lap of the hospital floor with the physical therapist. Cathy was up and down mock stairs as well. The big news is that her kidney function has improved slightly. Her doctors don't think that she will need dialysis while she is here at the hospital and the shunt in her neck can come out today. She is happy and up beat and tapering off the pain meds some.

Lon

A Good Night

This is Karen. I talked to Mom this morning and she said she had a good night last night. She had a really nice nurse and she got out of beds several times to use the bathroom or to walk. She even took some laps around the nurses' station. While I was talking to her her breakfast tray arrived. Apparently the hospital food is pretty bad when they have you on a renal/diabetes diet.

Here are some before and after pictures of an IV in her arm. It made quite a nasty bruise. (Mom has always been capable of pretty impressive bruises though.) It's always a good sign when they start getting rid of IV's!

Mom mentioned that they're planning on removing the PICC line in her neck. They were keeping it in case she needed dialysis. The transplant and medications can take a serious toll on her already damaged kidneys. That was one of the major concerns doctors had about doing a liver only transplant. They were worried she might come out of surgery already on dialysis. Her kidney function has improved enough today that they don't think she'll be needing dialysis during this hospitalization. What a blessing! Thank you for all your prayers on her behalf!

Visiting Cathy's Liver

On Cathy's afternoon stroll we visited the room next door, where Cathy's domino recipient is. She was happy to meet us. She also had a rare disease. Her disease doesn't allow her to eat many foods and causes her constant itching. She has been suffering for 3 years. She is doing well also. (I did run this post past her to see if it was OK to share this information.)

Hi Ya'all

Here I am at about 39 % mental, which is an improvment. I have appreciated all of the prayers and comments.

Up and Walking

This is Karen. I just talked to Dad and they have Mom up and walking. You go girl!

Every time I have tried to call today they have been busy with nurses or doctors or some other thing. I guess they're on a pretty tight schedule over there. I hope they give Mom a break and let her rest.

Keep up the good work Mom!

Main Floor

Cathy passed to the next level (Main Floor)! She has a private room and there is a unusual chair that folds out into a sleeping slab. I was a bit unsure once I unfolded it, what kind of night was ahead of me, any rolling at all would end me up on the floor. There is only about a 1/2 inch thick mattress and it is about 18" wide and about 5 feet long. It did beat my first night curled up on a chair in the waiting room.
We have had a lot of visitors this morning. They had Cathy up and brushing her teeth at the sink and Physical Therapy was here to help her walk down to the end of the hall. They tuckered her out. She is to walk three times a day.

Getting Ready to Move out of the ICU

This is Karen. I just talked to Mom. It was so good to hear her voice! She sounded pretty tired. We talked about how cool it is that she gets to meet the woman who got her liver. She also told me that there's a nephrologist who is now seeing her who is totally interested in her disease. Finally! He's been researching it and trying to find out how he can protect her kidney function. That is such great news!

They are getting ready to move her to a regular floor. They're going to give her a PCA (patient controlled anesthesia) pump to help control her pain when she's there since she won't have a one on one nurse to give her IV meds regularly. She'll be able to push a button and get almost instant pain relief. That will be good because she mentioned that she's had her pain get away from her a couple of times since they started switching her over to the oral meds and making the other ones PRN (as needed).

She has loved all of the comments she has received on here. Please send her your love and if you don't want to comment publicly you can email her at cathytidwell@gmail.com.

Love,

Karen

Progress

She is slowly recovering. It was really hard for her to get rest last night because the nurses came in so frequently. When she is moved out of the ICU the sleep interruptions should be less frequent; however, there is a tradeoff: The tube from which they are taking blood samples every four hours will have to be removed, meaning that every new blood test will require another needle poke.

Also, Mom has been given insulin to counteract some temporary diabetes caused by another drug she has to take.

UCSF is a teaching hospital, so there are medical students everywhere. Five minutes ago, there were four doctors and a nurse in the room, with about 15 med students gathered out in the central ICU area just outside the door.

Dr. Stock (the one who lead the transplant surgery), came by about 15 minutes ago. He had some great news! The woman who received Mom's liver is "ecstatic" and wants to meet Mom ASAP. She is currently three floors up, but in a day or two they will be on the same floor and able to visit each other's rooms. It's really miraculous.

Dr. Fix was just in the room now asking Mom about how she feels. It is really good to see that Dad doesn't have to speak for her. She is totally lucid and apparently out of her anesthesia haze She is sharp. I think she is joking with the doctors just a little more than they would like.

Anyway, when the doctor was talking to Mom I glanced over and unintentionally caught a glimpse of the very top part of the incision. It does not look as scary as I expected. (Mom wants me to report these types of details.)

Sitting in a chair

Mom is sitting in a chair. She had a lick of a popsicle but they took it away.

Recovery will be slow but so far so good.

ICU Update

Cathy is fairly comfortable unless she moves. We have moved her around in her bed twice. The first time she was, I think surprised by her surgery pain, but the second time she made the move with no problems. They even changed her sheets while she was in bed. I don't think it is a technique that I will be using on our beds at home. Cathy has a one-on-one nurse. She handles any issues or requests quickly. Even though Cathy is pretty doped up and doesn't start any conversations, she still has a quick wit with her responces to questions!

ICU--Doing as well as can be expected

We just visited Mom in the ICU. She is conscious but still very tired and groggy. Her nurse is named Miriam.

The nurse asked Mom which hospital she was in and what day it was, and Mother answered correctly. The nurse said that at this point many patients can't remember.

Blood pressure and breathing rate are normal. She is being eased her off the oxygen. They are taking frequent blood samples to monitor liver and kidney function. She is receiving Dilaudid for pain.

Miriam said that Mom may be able to get up and sit in a chair today. It will hurt, but apparently it is much easier to get moving sooner. Mother is agreeable to the idea. At this point, she seems to have a great attitude about everything. Could leave the ICU within the next two days.

Surgeon came down in his scrubs to talk to us

The head transplant surgeon, Dr. Stock, just came down and spoke with us. We will possibly be able to see Mom in about half an hour. The breathing tube is out and she is coming back to consciousness.

Surgery went well. The new liver seems to be functioning fine. Mother lost 400 cc of blood, which is very good. Her own blood is being returned to her.

The doctor said he "heparinized" her. Not sure what that means, but I guess is to help with coagulation of blood. Apparently, it comes with a slight risk of bleeding, which means they will monitor her closely for the next 24 hours.

Going forward, the antirejection drugs may really impact the remaining kidney function she still has, but Dr. Stock said that it will be days, weeks and months before they "see if we can nurse her kidneys back."

The domino operation is a couple of hours behind. It is really touchy to ask about the recipient of the liver because the hospital enforces strict privacy rules, but the doctor disclosed that the recipient was a 62-year-old female. That operation is going very well. It is a separate surgical team.

We will update the blog when we see her.

A new dawn. . .

The sun is rising in San Francisco. Dad and I slept about four hours in the waiting room. We got a voicemail about an hour ago saying that things were going well. We anticipate she will be in the ICU within an hour or so. It's likely she will be very groggy and possible that she will not even remember being admitted last night. I will post another report when we have more information.

Cathy is currently in surgery.

This is Alan. I arrived about 45 minutes ago. I went upstairs and Mother was in the rolling bed in her gown talking to Dad. We reminisced about the time Dad was in the hospital with his shattered ankle. We met the anesthesiologist, Dr. John Taylor. He seems really nice.

At 11:05 Pacific Daylight Time, they wheeled mother into the operating room. Dad and I came downstairs. We were told this operation could take five to ten hours.

Normally the surgeons just throw the recipient's liver away, but in this case, Mom's liver is being donated to someone else, so extra care is required in removing her liver.

We learned about the donor: From Central Valley, female, 35 years old, died of head trauma. What a tragedy! A daughter and granddaughter and a sister and very possibly someone's wife. Someone's mother. Surely that family needs our prayers right now. We are grateful for their decision to go forward with the donation. We think the organ network will allow us to reach out to the family to convey our gratitude.

Will post more when we have new information. Could be a long wait.

Order One of These Please

Mom's telling the doctors she wants her scar/stomach to look like this one when they're done. Hopefully they can deliver. That would be a definite win-win.

I love that even on her way to the hospital for this major surgery she still has the sense of humor to joke about this picture with me. Love you Mom.

Karen

Go!

UCSF called and we're on our way. Yes, we are both terrified. Just this week I made a decision that this disease would NOT be my identity. I will get better, and this will be a blip in the road. I hope to be home within the week ready to rock n' roll. Prayers for our family, the family of the donor, and the family of the person who will receive my liver.
Alan and the kids will keep the blog updated.

A good daughter

Waiting for this transplant is the pits. Karen visited me a few weeks ago, then went to Utah for her sisters-in law double wedding (how fun!). She wanted to leave her boys with her mother in law and bring baby Claire and come and help me. She waited and waited and waited and it was time to think about going back to Virginia. Then she had a great idea! Rent a car and drive with the four kids and come to visit. She left bright and early. Lon and Alan met her in Reno and helped her drive the rest of the way. We had so much fun together.

It's hard to do anything together because we have to take two cars to do anything together. We are lucky that Grandpa is such a willing babysitter. He watched the boys while Karen and I and baby Claire went to Half Moon Bay. Why Half Moon Bay? Fresh peas!! There is nothing better to sit and eat than fresh peas. We got to the pea stand and tried a couple. They were divine! I asked the guy if he had any crates of peas for sale. He did. I asked when they were picked (yes, I am turning into my mother), and he said just that morning. Karen and I looked at each other and said we'll take a crate. A crate weighs about 28 pounds. He opened the lid and crammed more in. I guess he recognized desperation and adoration in our eyes. He put it in the trunk for us. We got two grocery sacks and stuffed one with peas (we used the other one for the pods) and drove back home. We finished the bag before we got home. The remainder of the week we carefully monitored each other's pea consumption. Heaven forbid one of us gets a few peas more than the other one. She became very solicitous of my potassium consumption. I couldn't find any definitive information, other than dried peas were high in potassium. Since raisins are high in potassium and grapes are low, I thought the same must be true with dried peas and fresh peas. She fired back that eighteen or so servings of anything has to be bad. It was an uneasy truce.

On Friday we got home from the Temple and she was eating peas and putting the empty pods behind her. She claimed that the boys were helping her blah blah blah. I found it highly suspect. Lon called it the "Wall of Shame." I got a lot of good mileage teasing her about it. Soon all the peas were gone. Mother and daughter remained friends.

She also made cinnamon rolls. She can make some good cinnamon rolls. The only bad thing is that they never last 24 hours.

We also went shopping to the outlets, and made several trips to In 'N Out Burger. We had a couple picnics with the family and picked a ton of wild blackberries. It wasn't quite a repeat of the pea adventure, but close. While we were shopping Grandpa and the boys caught a lizard. It wasn't Gizzard (the lizard they caught last time). I don't think this lizard was very sociable--he bit Cameron when he let him go the day they left.

Sadly it soon became time to go home. Her husband has an internship back east and has to work a ton of hours this summer so she was pretty much on her own with Mrs. Right Hand and Mrs. Left Hand for helpers. She left from SFO with the four kids, three giant suitcases, three backpacks, two carseats, a stroller, and had to change planes in Minneapolis then fly to Virginia. After she got to Virginia it was about an hour and a half drive to her home. She bribed the big boys (five and three years old) with any toy from Toys R Us. Four month old Claire is a good baby, but still needs a lot of care. Two year old Tyler was the wild card. He has a mind of his own and could melt down for just about anything. They were all smiles when they left. They got home lately and word on the street says they won't be needing to go to Toys R Us. She wasn't ready to talk about it yet. I think all five of them should go to Toys R Us and get whatever they want. Thanks for coming, Karen. I sure love my little girl!

New meds again

At my last appointment with the kidney doctor I was having a bad day--just felt crummier than I usually did. My anemia was worse. The kidneys produce a hormone that regulates the utilization of iron in your blood. He prescribed an artificial substitution for it. The bad news is that it must be injected every week. We picked up the prescription and went to the injection clinic so Lon could learn how to do it. Right. My squeamish husband is going to keep his eyes open long enough to give me a shot. I will admit I was in a bitter and perhaps less than cooperative mood when we went. I sort of wanted to be in the other room, but since I was getting the injection, I had to be there. The nurse taught Lon how to do it. He was very attentive, bless his heart. We both wanted her to give it to me--you know, for complete instructions. She went ahead and did it. The anticipation was much worse, and I think Lon kept his eyes open. Sadly, I got quite an impressive bruise. When it was time for the next shot, we again went to the injection clinic. Lon said he didn't want to hurt me (thank you) and wanted a nurse to give it to me to see if I bruised again. I didn't. Time comes for the third injection. Karen was visiting and she was hot to trot to give me my shot. I remember visiting her when she learned how to give shots in the BYU nursing program. We got there and she had a syringe and was squirting saline all over the place and in general was pretty maniacal about the whole new skill thing. She had the same maniacal glee when she gave me my shot. She did a great job and I didn't bruise.

I don't know who will give me my shot next week. She went home. The absolutely great news is that I do have more energy. It is great to have a little sass back!

A bizarre solution to a bizarre problem

Just thinking.....Since I've been at the top of the liver transplant list for ten weeks and I haven't even been offered a sub-standard liver....What if Lon and I just traded livers? And I could get one of his kidneys at the same time. Talk about a win-win! And it would be soooo romantic. It would take fifty years for the amyloid to give him problems and we could convalesce together.

A big surprise!

I have no idea what kind of doctor I need. I am in such an odd place. I need a liver transplant because my kidneys are failing, and other organs are getting gummed up too. I requested to go to a specialist at MAYO, but Kaiser determined that it was not medically necessary. Hmmmm......
In their infinite wisdom they have decided I need to go to the hematologist/oncologist that told me he had nothing else for me last October. So does that mean if I break a leg I should see a dermatologist? We plan on disputing my lack of need. I think I am the only one with this particular disease in the whole Northern CA Kaiser area. It's hard to have a disease that was invented in 1993. I should have played the lottery.

Lab update

I had a bunch of labs done yesterday. My kidney function slightly improved--21% to 23%. I'll take it. The dreaded potassium was in a good normal place--I think I've been doing a good job avoiding high potassium food. Serum albumin was low, but O.K. Anemia was worse. Who would have guessed that? I'm just a couch potato! I'm seeing the kidney doctor tomorrow.

Congratulations!!!!

Congratulations to Randy! On Mother's Day he graduated from the Darden School of Business at the University of Virginia. My sweet Randy has an MBA. He also has tons of really cool stories about all kinds of business adventures. We were very sad to miss the graduation (we're stuck here waiting, of course), but are happy Sevann made his day a little happier. Rumor has it that in addition to that cool cake, she sang "For He's a Jolly Good Fellow." We are very proud of his achievement! And for a happy post script he has a job right in Charlottesville. Sevann has a year or two until she graduates.

If you look in the background of his picture, you can see how beautiful the campus is. When we were there last year, Randy took us to Monticello, Thomas Jefferson's home. His home is quite a distance away, and when he made it, he made sure he could see the University in the distance.

An Unexpected Visitor

It seems that a friend came looking for Thomas the snake. Grandma just picked him up and gave him a welcoming squeeze. She never ceases to amaze me.

Grandpa

Cookies!

I am such a lucky, lucky Grandma! I have so many good helpers. Alice always wants to make rolled cookies, so since I had so many helpers we got out the aprons and the cookie cutters and made a whole bunch of cookies. We made hearts and stars and sharks mostly. After the cookies were all baked, Karen made some yummy frosting and I got out all of my beautiful sprinkles. The kids did such a good job decorating the cookies. We ate lots of cookies and Alice and Teddy took some home to share with their friends. Thanks for being such good helpers, kids. I love you!!!!!!

Sleepover

Aren't these the cutest kids ever? The cousins had a very fun sleepover. And if you look carefully in the back, you can see Lon and Ben doing dishes. It seems like they were always cooking or cleaning. I sure appreciate the men in my life!

Thomas

Karen wanted to come help me after I had surgery. We know how that is going. Instead she came to visit. She told us we needed to bring both cars because she had lots of luggage. So Grandpa and I went to the airport in two cars. We were looking for her and all of a sudden we saw Ben. He started walking to the car and Cameron and Jake popped out from behind him and shouted, "Surprise!!!!" What a great surprise! The whole family was there (along with four suitcases, three carseats, a stroller, and a very full backpack). We were so happy to see them.

One day they took a walk in the park near us and caught this snake! He is a very friendly snake. The boys had a very nice jar for his home. They gave him a snail to eat. They gave him some water. They even took him to their cousin Alice and Teddy's house to visit. The boys were very gentle when they held him.

We were sad when they had to leave. They packed everything up and Grandpa and I took them to the airport. It was sad to kiss everyone good-by.

When we got home Thomas looked very sad. He missed Cameron and Jake visiting him and bringing him food. We put his jar very carefully in the car and drove to where they caught him. Grandpa opened the lid and put the jar on the ground. Thomas looked around and finally left the jar. We think he had some snake brothers that he missed. He crawled away in the grass. Grandpa thought he saw Thomas look back at him and smile. I think Thomas enjoyed his adventures with Cameron and Jake, but was very happy to get back to his family.

Thanks Cameron and Jake for being such good snake catchers.

Living in Limbo

It has now been almost five weeks since I was listed for the liver transplant. This waiting is the pits! I was over due for all five of our children and that was nothing compared to this. Lon thinks it is like sitting on the edge of your chair--and his legs are cramping like crazy! We don't want to do too much grocery shopping because we'll be gone for at least a week. Eating has been like camping and food storage put together. Our bags are packed and ready to go. And here we sit. And sit. And sit.
We are quick to acknowledge that we are on the Lord's timetable, yet it really is hard to wait around. I got my blood work done last week. My kidney function is holding steady and my potassium level was up a little. My kidney doctor tweaked my meds and hopefully the potassium will stay at a good level. And the tweaking didn't include any brown liquid, thank goodness!
The plan is for Lon to stay with me in the hospital. They have a reclino-chair-bed-combo (probably not very comfortable to sleep or sit in) that he will be able to sort of sleep in. The meds they give me after surgery are apt to make me even crazier than normal, and he has promised to stay and comfort and regulate me. I appreciate that so much. When he was in the hospital with his broken leg, I stayed with him all day, but didn't stay at the hospital. With the meds I will be getting, I think it will be prudent to have my best buddy nearby!

And some new amyloidosis information...

So far there have been two small studies about this type of amyloidosis. They are both from the UK. The first involved 71 patients. It described this amyloidosis as mainly involving the kidneys, with damage to the spleen and liver after a long time. The newer study is also from the UK. It was published in April, 2010. It studies 22 people with this fibrinogen amyloidosis. It seems that this is thought a kidney disease because that is where it is "easier" to diagnose it. Apparently it involves more organs. Only five people had any family history of kidney disease. Twenty of them had significant heart issues. Fifteen had issues with GI autonomic neuropathy. Eight got liver-kidney transplants and during surgery three of those had spontaneous spleen ruptures. It seems that maybe this disease is a little more widespread, and perhaps people die of heart issues before the kidneys have any troubles. No one got only a liver, so I will still be the first to do that.
What does all this mean for me? Short answer, "Beats me!" Of course that is my snappy answer to all of my grandkids hard questions. Seriously, I emailed it to my doctors and have a copy ready to take when I go to surgery. It's tough have a disease that was only identified in 1993, and at this point ANY information is very welcome. Bottom line, of course, keep praying.
I have had that echocardiogram and was told that my heart is grossly normal. And my treadmill stress test apparent didn't merit a second look when the surgeons reviewed it. Seriously--It's time to rock and roll!

Update

Not much going on. No word from UCSF. The Mayo Clinic in Florida called me ten days after they got my records. The had an appointment in eight days. Their evaluation takes two weeks, and possibly part of a third week. I have never been called, "Ma'am" so much, I found out that to get a kidney-liver it would take a year, and I would have to stay in that area the entire time. I didn't make an appointment and continue to wait here. Discouraging.

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.........

Difficult, difficult decisions

Alan here again:
I just spoke with Mom on the phone, who had received a call from one of the doctors at UCSF earlier today.

In short:

1. A liver became available but the surgical team turned it down because it was too fatty.

2. Mom needs to decide soon whether she wants to go with a liver-only transplant or a liver and kidney transplant.

3. It is thought that a liver and kidney transplant would solve her problem with the reduced kidney function brought on by amyloidosis, while a liver only tranplant would stop the production of amyloid proteins in her body but the kidneys might not recover. With a liver only transplant, it is likely she will need a kidney transplant (possibly from a live family donor) sometime after the liver transplant.

4. It may be possible that Mom would retain the same high MELD score (see http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease), which could enable her to get a liver and a kidney in the same time frame it would take to get a liver only. However, this isn't totally clear.

5. Mom is heading to UCSF right now to be matched for a kidney transplant, since a kidney needs to be a closer match than a liver only. The thought is that she could receive a liver and kidney from the same donor.

There is a lot of uncertainty around this situation and Mother is understandably confused as to what she should do. The doctors have not provided lots of information to guide her in this decision, and many unpredictable factors seem to be at work (the priority scoring system for livers and kidneys, the possible difficulties in finding a kidney match, the views of the surgical team, the availability of cadaver donors, etc.).

Although Mom has been feeling bad and getting worse, she isn't feeling deathly ill, so looking forward to a major, major surgery (liver and kidney transplant) followed by difficult months of healing and recovery sounds very unpleasant.

She needs words of encouragement and our prayers.

Ready????

Last night while I was at the temple the UCSF liver doctor phoned. The transplant powers and the doctors had a conference that morning and I was granted an exception score of 32. That means I am very, very close to getting a new liver. There are three transplant centers in this area and at UCSF I am at the top. The doctor said it could be this weekend or a couple of months. I am really scared now! It is a hard recovery--at the meeting they said I would need someone 24/7 for three weeks. Poor Lon.
My kidney function has gotten much worse, so hopefully with the new liver not producing any more wayward fibrinogen they will recover. I will be the first to receive only a liver. I never imagined I would be the first to try out a medical procedure. It's officially time to gather all my courage (and sass and stubbornness and will!)
Prayers are still needed!

Liver transplant patient and family mandatory education class

Alan here:

Today I went to UCSF to attend the orientation meeting for prospective liver transplant recipients and their families. Mom and Dad were there too, of course, along with about two dozen other people.

The meeting was held in a conference room on the liver transplant floor right down the hall from where the transplantees are recovering. Seeing the ICU, nursing staff and the hospital beds being wheeled around made me realize how close (hopefully!) Mom is to receiving a transplant.

A liver transplant is a very big deal. We learned about a bunch of stuff: the priority scoring system (see www.unos.org), getting ready for the surgery, the size of the incision (huge), potential complications, medications (many), family support, thanking the donor family, etc.

The hospital people seem really nice.

I also turned in the completed information packet to be considered as a kidney donor. After the liver transplant, that might be the next step.

Cathy has a birthday on March 19!

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!