7 Year Anniversary

Just wanted to make a quick post celebrating Cathy's 7 years with her liver transplant. We are so thankful to the family that allowed her to benefit from their daughter's tragedy.

The last I heard, the lady that received Cathy's liver as part of a domino transplant was doing well.

We recently traveled to Lake Almanor where Cathy talked a fellow camper out of this fish.

She is doing very well and proved that she still can sleep in a tent!

Changes Galore

Remember me? What a crazy summer, even for me.
First things first. The amyloidosis is technically cured. Because I had a liver transplant, my liver is no longer producing amyloid--the good news. Because I had a liver transplant, I have to take a ton of drugs--the bad news. Recently, I have had some of my immunosuppressants reduced. I am being "weaned" off of prednisone. I have gone from 5 mg. a day to 4 mg. a day. Actually going from 1 5 mg. pill a day to 4 1 mg. pills a day. My total number of pills a day is between 25 and 27. Throw in a shot every other week and a blood test once or twice a month and you've got my schedule!
I do feel very grateful that I'm doing that well. My kidneys are hanging in there, and that's worth a lot.
The big change this summer has been moving to Oregon. We haven't found a house to buy yet, but we are trying! We both love the small town atmosphere. Any place in town takes 10 minutes or less to get there. I don't get lost that much.

We've had lots of company this summer and my camera is full of pictures. I will be blogging more. It is far better to blog about our cute grandkids and our adventures and not about being sick!

Anteaters-in-Training

Last Sunday Alan and Ellen and the kids came to dinner. We had some pretty tasty beef fajitas, but the highlight of the evening was making cookies after dinner.
We got a very large package of bendy straws at Ikea. Grandpa put them in a very accessible spot and they are a popular item at our house. The kids like to try out several colors.
After dinner we got out the cookie dough that had been chilling in the fridge and the cookie cutters. I usually have three bowls for sprinkles. That way only a finite amount can be spilled or eaten straight and the tops don't get put in the cookies or the frosting or the mouth. It's not a perfect way, but it's OK. We were getting ready to roll out the dough, and Alice gave a bowl of sprinkles a good "blow" through a straw. Sprinkles flew. (I told you it wasn't a perfect system). She was pretty surprised, but I wasn't too concerned, since the whole kitchen usually gets decorated. Usually they lick their fingers so not one tasty sprinkle goes to waste. But this time was different. They each had their straws and were sucking up sprinkles. They had a great time. And they looked like a couple of little anteaters. In fact next time they want to make cookies with sprinkles, we could probably just pour sprinkles on the countertop and hand out straws. Little anteaters in training!

Rocket Grandma

A couple of weeks ago I got to go to Virginia to visit Karen and Randy and their families. I had a wonderful time visiting. I had some good Virginia BBQ and got to watch a mini triathlon. The best part was all the visiting, of course.
I left from the Charlottesville airport, and on the way Karen stopped at the brand new Kohl's. Four year old Jake and two year old Tyler were with us.
Some background information. I have a stroller. It is the very bottom of the line stroller (when we were at Disneyland with hordes of strollers there wasn't a single one that approached this stroller). It is also old. I think Marie bought it when James was born and he is 12 now. The shade part is smushed and pathetically hangs there. It also has odd stains. It is a much loved stroller though, especially with Grandma at the wheel. It goes to fun places. And even when it goes to non-fun places (think Baby Gap) it is fun. I run into mirrors and we make faces. If the occupant is "tired" I lean it back and set the handles on the floor. I find interesting things to look at. The things the kids love the best is when I do rocket stroller. I yell,"Rocket Stroller!" and start running, sometimes with only two wheels on the ground. Of course my stamina is only good for a few steps, but it is an exciting ride!
Back to Kohl's. Karen was a Mother on a mission. Jake, Tyler, and I were holding hands and pretty much lollygagging. Every once in awhile I would say "Rocket Feet" and we would kind of, sort of run to catch up with Karen. I was very careful to look ahead and make sure we had a clear path to run. It was great fun! Well, it was great fun until we got our feet tangled up and all three of us went flying. I fell hard on my hands and knees. Jake got up rubbing his elbow giving me the stink eye. Tyler sort of started crying, but I think even he knew my falling trumped his falling. I popped right up--I was so embarrassed! What was I thinking doing rocket feet in a store. Karen said it looked like I was on a slip and slide. My whole body felt jarred and it felt like it would be sore for a few days. I felt the fall the whole way home. There were no broken bones thankfully. The only injuries were very colorful knees and hands. Something I like to call Rocket Knees. Time to act my age.

Amyloidosis/liver/birthday update

My meds have changed from name brand Prograf (immunosuppressant) to generic tacrolimus. With the change came more frequent blood tests. I had gone three weeks between tests, and my veins noticed the rest.
Well, Karen had a Southwest voucher lying around and thought it would be great if I came to Virginia to celebrate our birthdays. She hurriedly put together a trip and I hurried and packed. (I now call her the master manipulator, but that's another post!) I was leery about being in a closed plane full of germ soup for 6 plus hours. I was also worried about edema. Although my kidney function stinks, I don't retain fluid, except when I flew to Virginia for Randy's wedding. I really didn't want a repeat of that. But visiting the Virginia gang trumped any of that other stuff.
Back to the lab visit. My prograf level was down and my liver numbers up, so I couldn't go. I am back to weekly labs for awhile. My prograf was increased a little and we need to keep an eye on my labs so I don't do anything exciting.
This is disappointing. I think this might be the first birthday that we don't spend with each other, so we definitely have some make up to do. Any ideas? I'm thinking of a crate of peas to share this summer.

Catch up

Slacking! That's what I've been doing. Birthday season is in full swing. Happy birthday to my sweet husband. He's taken such good care of me, and with such a good attitude. He has been an example to all of us. We celebrated at home with a plethora of pizzas!
Happy birthday to dear, sweet Claire. She is one. Her brothers just love her so much--it's always exciting at her house.
Happy birthday to dear, sweet Alice. She is five and loves all things sparkly and princess! She is my helper when I make anything that could possibly have sprinkles.
Happy birthday to dear, sweet Jill. Our oldest granddaughter is eight. She is getting baptized at the end of the month. I miss her so much--they live in Texas and I don't get to see her very often. She is a good helper with her little brother and sister.
The next birthday is Karen's. Lots of birthdays!

Family Home Evening

Brian and Christine are ready to welcome a new baby boy very soon. On Monday night they held family home evening with four year old Lincoln and two year old Natalie. The subject of the evening was very important--swaddling. Lincoln really, really loved to be swaddled.
So out came the baby dolls and stuffed animals. All were swaddled and reswaddled. Then Lincoln and Natalie got swaddled. Brian and Christine reported that big kids don't really swaddle all that well. Brian would pick them up and sing to them to soothe them. It didn't work any more.
My favorite quote was from Lincoln. "Hey, I can't move my arms!"
To finish off the evening Brian got swaddled. It sounded more like a self-made burrito to me. Lincoln and Natalie tried to lift him up. It sounds like one of those nights that I would have liked to have been a bug on the wall to observe.
Of course the very best thing for this Grandma is that I know the new little brother will certainly be loved and well taken care of!

Happy Birthday Robert!

Our second son Robert is 36 today. He is married and he and his wife have five really cute kids.
Lon and I were reminiscing (and laughing way too much) about what was going on 36 years ago..
First of all Lon was working swing shift at Boise Cascade. I had pre-eclampsia and had been in the hospital for three or four days. The nurses were yelling at me to eat more. I weigh more right now than I did then. They said he would weigh three or four pounds. I was getting (and eating) double portions of everything. They treated the pre-eclampsia with phenobarbital. It turned me into a loopy cream puff.
Alan was under Grandma's care. She had broken her middle finger. I don't remember exactly how, but it involved Ripper (their Great Dane) and the back porch. True to form, she didn't go to the doctor, but went to Walgreen's and bought a splint. She was pretty mortified because she looked like she was flipping everyone off, but she wore it,
I was released from the hospital just before lunch, and being starving, we stopped at our favorite Chinese restaurant. We were thoroughly enjoying our Shopper's Special, and by golly, labor began.
My Mom was younger than I am today. I know she was looking for a break, but instead she got the phone call that we were going back to the hospital. Alan was a very big and active 21 month old, and it was very difficult to change to his diapers with a splint. I was using cloth diapers, but Grandma was done with them. The disposable diapers didn't have tapes--you had to use pins, and it was so hard to stick those pins through those thick diapers! I felt so bad, but Robert was not patient at all!
We got to the hospital and we waited and waited, Just before midnight the took me to the delivery room. The big conversation was whether the tenth or eleventh would be his birthday. At five minutes to midnight we got our sweet little boy. He did turn out to be our smallest baby at seven pounds and six ounces.
We were so happy to get this sweet active little guy. He was the one who made us old and kept us young at the same time! Happy Birthday!

Lab results

I got a week off from having blood drawn. Even a week break made a difference in my poor old veins (no bruise, either). The results were stable or very slightly creeping to normal values. The next step is to start begging the doctors to go every third week! So grateful for everything.

Anniversary!

Today marks the six month anniversary of my liver transplant for my familial amyloidosis. (if you want details of the transplant, click on the July, 2009 post in the right column) In many respects it has been a lot tougher than I expected, specifically the two hospitalizations for complications. There have also been many "surprises." I am a big wimp and have always been afraid of pain. Surprisingly enough, the pain associated with the transplant has been very well managed. My veins are really in bad shape. The last time I was in the hospital it was so hard to get I.V.'s started, and routine blood tests have become quite tricky.
I am so grateful (I wish there was a "stronger" word) that my kidneys are still working. More than anything I have wanted to avoid dialysis and with the bummer liver out of my body and not producing amyloid, my kidneys have improved a little bit.
The meds are hard to take with lots of side effects, but I am managing.
I'm thankful that my husband has been such a huge help. I have not heard one complaint from him. He has been a wonderful example to me and our children, I have tried to be patient and more patient, but it's hard when you are used to being the one who helps and runs things. It 's hard to be on the accepting end of pretty much everything. He's always been a good cook, but he has really stretched his wings to include laundry, cleaning the kitchen, mopping, etc., etc.
The kids and kids in law have also been champs. They have had a housecleaner over and have been ready to do anything. I have had flowers and cards and visits and many beautiful pictures from grandkids.
I'm grateful to friends for get well cards. Any time I would be feeling down, it seems like I would have a card or note in the mail. More than once Lon would catch me with tears in my eyes reading cards.
Now the big question. How will I celebrate this milestone? I've been thinking about this all week, and think I have the perfect answer. I'm going to vacuum! Yep. I've missed (?) vacuuming. It's looking good to be normal again!

Back to the Doctor

On Tuesday I went back to UCSF for a routine doctor appointment. It was great to be there and walk right past the hospital (the last two times I was there I was admitted). My blood pressure set off the alarm, but we're working on that. The big thing was adjustments to my meds. I was taking cyclosporine. It is a large capsule (actually huge), but the awful part is that it smells like skunk! Seriously. Each capsule is packaged individually in triple layer foil/plastic. They are very tricky to open. We fondly refer to it as roadkill. The replacement meds is Prograf. They are tiny capsules. I am so happy with that change.
I will have to continue weekly blood tests for three weeks and if all goes well I get to go to every other week for blood work. My veins are really beat up and sure could use the break. I don't have to go back to UCSF for four months. Works for me!

Merry Christmas

It seems like I am always a step or two behind these days. We have had a truly delightful holiday this year. We are so grateful fo family, friends, music, lights, too many goodies, but mostly for the birth of our Savior.

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!