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!
Saturday, October 8, 2011
Sunday, June 5, 2011
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!
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!
Thursday, May 5, 2011
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.
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.
Wednesday, March 9, 2011
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.
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!
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!
Sunday, February 20, 2011
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!
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!
Thursday, February 10, 2011
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!
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!
Wednesday, February 9, 2011
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.
Thursday, January 13, 2011
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!
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!
Thursday, January 6, 2011
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!
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!
Wednesday, January 5, 2011
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.
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