Monday, November 16, 2009

Good news...I think

I received a notice from Kaiser that their transplant team has approved me for a liver transplant. It will be done at UCSF. They have a better than average success rate for liver transplants, so that is reassuring. I am scared, but I think I'm running out of options. My kidney function is decreasing and will only get worse. I am one of the very few, very fortunate amyloidosis patients. My type has "cure" and "excellent outlook" after it. I should be counting my blessings and exercising faith right now. I have had so many prayers answered. Thanks to everyone. I appreciate the support.

Thursday, November 12, 2009

Lab results

I just got back the results from the tests I had on Wednesday. The good news is that my GFR improved to 29 and my serum creatnine improved to 1.80. My serum potassium, calcium, phosphorus, and albumin were all within normal limits. Unfortunately my hemoglobin and hematocrit were lower than they should be. That means I am slightly anemic and will need to rely on more blusher. (Some problems are so easy to solve.)

Kidney Awareness Class

We've been scheduled to go to this for awhile. It is a two hour class at Kaiser to encourage people that are at risk for kidney disease to help themselves a little. Since my kidney disease is so much beyond my control, the doctor said I could have a pass on this, but Lon wanted to go (wouldn't a real date have been a little better?). We went. There were about 20 people there and we received a half inch stack of information. After the visit with the dietician I was skeptical of its value, but it was actually pretty good. We learned some anatomy stuff and some eating ideas. It seemed very practical. She also passed out copies of our lab values. Mine were the worst (not exactly a good time to be at the head of the class); she wondered why I wasn't in the "Choices" class (to decide what kind of dialysis or transplant). After class I explained what I had and I guess it made a little more sense. I was the only one in there where a liver transplant would fix my kidney disease. Doesn't really make much sense, does it?

Robert comes to visit

This past weekend Robert came to visit his sick Mom. Marie was a champ--she had all five of their children while he was here. I appreciated his visit and her sacrifice so much. It was so nice to see him. I made his favorite raviolis and chocolate chip cookies the day he came. It seemed like old times to see him draped in front of the fridge door. He found the ravs right away. They didn't even last 24 hours.
He wanted to wash cars and pull weeds (probably not quite as much as we wanted him to wash cars and pull weeds), but it rained the whole time he was here. He did give Lon a break from dish duty. We were so impressed with his skills. Lon called me to the kitchen to admire the neatly stacked dishes that were drying.
Alan and Ellen came to dinner on Sunday and Robert helped me make maca before church. When the boys get together it seems like they can just pick up from the last time they were together. On Friday while we were at the temple Alan took Robert to Costco and they got the movie "Driving Miss Daisy." They knew it was the last picture that was rated PG to garner Best Picture at the Academy Awards. How do they know all that random stuff????? If I ever need a lifeline for a game show.........

Off to the doctor...again

I had an appointment with the kidney doctor yesterday. I had jotted some questions on the back of a pizza coupon and he thought the coupon was for him. He should know that I'm the only wise guy in the room.
We had a discussion about liver transplant vs. kidney/liver transplant. Conventional wisdom doesn't exist at all because there is so little experience with this fibrinogen amyloidosis. My kidney function is pretty shaky--I think I'm around 25%. The experts that I spoke with are sticking with a liver only transplant though. They think my kidneys will shape up. That's the way Lon and I are leaning too. There are less rejection issues with liver transplant, too.
We also talked about my blood pressure meds. We're trying to get the most effective combo with the fewest side effects. It's not that easy. He changed one and my hands don't have the shakes/tremors.
I also asked him about the foods I should be eating. I told him I didn't think I could handle all those TV dinners. He agreed. I'm trying for healthy, fresh, and moderation. I could be glowing!!
I asked him if he had ever seen the documentary film, "Super-Size Me." It's the true story of a guy who ate at McDonald's three meals a day for a month (I think). He kept meticulous records and was under the supervision of a doctor. He got very sick with the McShakes and the McBarfs and all sorts of McProblems. It's a very good movie, but you won't be real eager to eat at McDonalds for a while.

Tuesday, November 10, 2009

The Dietician

We just got back from the dietitian. I am still processing (or reeling from) what she said. My dietary needs include low protein, low sodium, low fat, and the latest, low potassium. It was an interesting visit. According to her I am doing OK with the salt, potassium, and fat. Protein has become an issue. Low protein means almost no meat, since many other foods contain protein. For example, bread, pasta, rice, and most things that fill you up have some protein, so if you factor in that, it doesn't leave any room for salmon, chicken, and especially beef. She recommended the "Healthy Choice" kinds of TV dinners. With the nutritional labeling and portion controlled sizes, it made sense, but they have so much other added junk that the idea of eating them several times a week creeps me out. I kind of like fresh food. The big challenge will be getting enough calories to make sure I don't just waste away (seriously).

I was also concerned with traveling. She had a handy book with nutrition information, but everything just seemed really past the amounts I should be eating. I also asked about eating at other people's houses (this is you, kids). I told her I didn't want anyone making a fuss, but she assured me people really wanted to accommodate my needs. She had a personal anecdote to add to that. She has company coming from India. They don't eat any root vegetables like potatoes or carrots because they might contribute to the death of insects that may be clinging to them. She told us she is happy to adjust her cooking to their needs. Everything that she said after that was kind of a blur. All I could picture were buggy potatoes and carrots.

Thursday, November 5, 2009

And today...

As for today I am feeling pretty good. I am jumping through the doctor hoops--it seems they always want one more test, so I am feeling pretty tough, especially after that bone marrow biopsy. I am trying to eat healthy and am working on building up my strength for what's ahead. I have told the doctors that I am going to make them look good--a promise I intend to keep. My energy level is usually pretty good--once in a while I have a bad day, but that's OK. I am walking at least four days a week and feeling good about it. I haven't quite figured out why I should be having this particular trial, but that's OK, too. The more important part is how I will handle it. I am so appreciative of all I have--a husband who is at my side constantly and ready to help, kids and grandkids who are ever solicitous, friends who are ready and willing to step in and help. I am so grateful for prayer, fasting, and Priesthood blessings. I would be a total wreck without them.

Genetics

Lon went to the conference for the genetics, but I listened too!
Familial amyloidosis means just that--it's a family thing! The bummer gene was with me at birth, therefore I had to get it from either my Mom or my Dad. In turn they had to be a carrier and get it from their Mon or Dad. So where is the smoking gun? I have spent hours considering this and still don't know--it's really not necessary to know, but it's so frustrating not knowing. We know it's passed at a rate of 50%, so half of my kids may have the gene. My Mom was one of six and my Dad one of seven, so the odds would be that someone had the actual disease, but I can't think of anyone who might have had it. It is more common in certain kindreds, and based on that I could probably rule out my Czech paternal grandfather. My Dad's Mom was born in Sweden and that could be a possibility. She also died relatively young--48--in the flu epidemic in 1918. So if she had the disease she died before it appeared. The other possibility could be my Mom's Dad. He was born in Scotland, but he lived to be 73--too old I think. Her Mom is Danish and that isn't a kindred that is usually affected.
What does all this mean? It's actually a good thing-- a very good thing. It means that the penetrance, the rate that people actually get the disease, is very low, and that the age of penetrance is relatively late in life--kind of like me! So it means the kids could get tested to know for sure, or just make sure that when they get around 50 to get tested every year for any signs of kidney disease--something that should show up in even the most minimal of a physical.
Do I still feel awful that I probably passed this on--of course! But it is manageable now and in the future it will be even more manageable. Hopefully no one will ever get to the point of kidney failure that I am at right now.

First ever familial amyloidosis conference

What an unusual course Lon and I have been on these last six or seven months. It seems that at every turn there has been someone "plop" right in our way to help us along. Two weeks after my diagnosis was this first ever conference. We are so glad we went.
There are three doctors in the US who are experts in this field and they were all there--including the doctor who identified my variation of familial amyloidosis. That's an indication of how new all of this is.
There are two major types of familial amyloidosis--TTR or transthyretin and non-TTR. The TTR is by far the more common of this rare disease. It has many mutations that affect about every organ and system. Although it is extremely rare there were four drugs being investigated to treat it. They involve altering or turning off the specific gene that causes it. It was pretty exciting sitting there listening to some truly cutting edge technology.
I was the only one there with my variation of the non-TTR type--fibrinogen alpha chain. I was also the only one there who had no clue whatsoever who I inherited it from. My amyloid is made exclusively in my liver and only messes up my kidney. Unlike the TTR type that can be "neutralized" because there are other avenues in the body to get the transrethin, my body needs the fibrinogen because that clots my blood. The absolutely great news is that my variation is the only type of amyloidosis that has "cure" and "excellent outlook" after it. Unfortunately it comes with a high price tag--a liver transplant. If I get a liver transplant amyloid will no longer be produced and hopefully my kidney will be able to recover enough to do its job. At this point my fate is in the hands of the Kaiser transplant committee. If they agree that a transplant would be beneficial, then it's on to the UCSF transplant committee. Am I scared? Nope, I'm terrified. Lon thinks that now would be a good time to be a good example--brave and stuff. I've always told the kids that when something is hard they need to reach all the way down to their toes and gather courage--I guess I'll have to put that to the test.

I got to meet the doctor that recomended the transplant. I wanted to make sure she knew I was a real live, kicking and screaming person. I also had some good one on one time with both the other doctors that were experts. It was good to get confirmation that this is probably the course of action I should be taking.

I also met others who had had liver transplants. Of course they were the ones who were doing well. They were happy that they had had the transplant. They had the TTR type and a liver transplant isn't a cure, but more of a bandaid--a good bandaid though. They have amyloid that is produced elsewhere in the body, but the liver is still the major production point and it slows down the production quite a bit. They said the hospital stay is about five days. And yes, my bikini days will be over.

We found the Fountain of Youth!!

Yes, we did! All of the shops in Nauvoo are manned (and womaned?) by Senior missionaries. There are bread bakers, weavers, candle dippers, coopers, blacksmiths, wainwrights, brick makers, rope makers--all kinds of period occupations. In front of each shop there are usually two cars--with license plates from Utah, Arizona, Texas, Colorado--that belong to these missionaries. They spend all day demonstrating and teaching about their particular craft. The kicker is that every night at 7 pm and 8:15 pm these missionaries gather together at the Cultural Hall to present a show, "Rendezvous in Old Nauvoo!" It is an hour of energetic singing and acting with a little bit of almost dancing thrown in. These septuagenarians weren't in rocking chairs watching reruns waiting for visits from there kids--they were so active and happy. We were so impressed with them. When I grow up I think I'd like to be a missionary too!

Nauvoo

Nauvoo is indeed a special place. The season was changing and the majority of tourists gone. The Church has rebuilt many of the shops and houses, but there were plenty of empty lots and open spaces. It gave it a lonely and sad feeling, especially since we were bundled up to stay warm. How hard it must have been to head West in the middle of winter to an unknown destination.
We were privileged to attend a session at the Temple and do sealings afterwards.

Wednesday, November 4, 2009

Some things speak for themselves
















Good eats

This would be the happiest hot dog I have ever seen. The relish is really that day-glo green, and now that I look at it again, the hot dog is an unusually bright shade of red. This might even be a Christmas dog due to the festive colors. I have kind of, sort of been following my diet, but I admit that I did have a couple of bites.

We only had one free day to eat in Chicago, (food was part of the conference) but I would like a few days to try this menu! So many dogs; so little time and the plane leaves in 2 hours. Really if you visit Chicago, you need to visit "Hot Doug's".
Quote of the day " There are no two finer words in the English language than 'encased meats', my friend." --Secret Robbie

Interesting tidbits

We saw some interesting things on our trip. Here are some of them.


We stayed in Hotel Nauvoo. It was a cute, little place. This sign was on the wall in our room. It worked like a charm because we did have sweet dreams.



Randy loaned us his GPS. It took us on a very round about way to Nauvoo. We got there about 9 p.m. It took us down this one lane gravel road for about two miles. We laughed and laughed about it even though we felt like we were totally lost in the dark, in some random cornfield. We had to go back during the day to get this picture and figure out how in the world we ended up there. Technology is good but we sure wished we had a good old-fashioned map to tell us where we were.


We found this fungus on a tree. We thought it was alien.


This is in Chicago. If we spent enough time driving around I think we could have found hot dog places named for every one of our grandkids. This one's for you Teddy.
I'd never seen such a good-looking and functional clock. On the clock face it says, "It's time for hardware." I don't think I'll ever think of hardware in the same way forever.


What a serendipitous day this was. We were driving around Chicago (yes, Chicago and not Pisa) when we happened upon this leaning tower. It is in the parking lot of a YMCA--really. That's me at the bottom. It was built to honor Galileo and it stores water.

Thank you

Thanks to all who have posted comments. It's nice to see that someone is reading it.

Sunday, November 1, 2009

Cautiously optimistic

There has been so much going on since we got here. I will be adding more blogs when we get back Tuesday night,but I must make a couple of comments.
There are about fifty people here who have familial amyloidosis. I am the only one who has my type--one of the doctor's commented that "only a handful" has it. The doctors are amazing--with this disease they have to be both researchers and doctors. I have been told that there are a couple of options and will be talking (and teaching) my doctors. These doctors are very generous with their time and resources. I have phone numbers and will probably stay in contact until we make some kind of decision.
It's Fast Sunday and we are both really feeling the power of prayers said in our behalf. How grateful we are for friends and family!
We love and appreciate you all so much.

Tuesday, October 27, 2009

What a good idea!

Sunday was Stake Conference. My mind must have wandered (although there was a good talk about promptings and such) and I was thumbing through my scriptures. I guess I have to admit I was in the back around the pictures and maps, and I noticed Nauvoo really isn't that far from Chicago (where we're going to the conference). What if we stay a couple days and drive to Nauvoo? We look at the schedule for flights and can change our flight home to a later time and only pay a small difference in airfare (thank you Southwest Airlines), but then we look at the Temple schedule only to find out that it is closed for its two week maintenance break. What a bummer! Then Lon looks at the other end--what if we leave a day or two sooner? It actually is happening!!!!! We leave super early tomorrow morning and will drive to Nauvoo and get to do the whole tourist thing and then get to do a session. We are both so excited about this. Will probably have more to report later!!

And yet another doctor......

Today I had a 45 minute consultation with a liver doctor. And no, she has never seen an amyloidosis patient. And she had probably never seen such a quality liver in a while since I have never smoked, drank, done drugs, or have any kind of lifestyle that was unkind to my liver. Unfortunately, my liver is producing the fibrinogen which is gumming up my kidneys, which makes everything else a moot point. She took a couple of lifestyle notes and forwards this information to the Kaiser Transplant team (any guesses on how many amyloid patients?) who in turn will forward it to the UCSF Transplant team. She did say that I would be far, far down on the list unless some kind of exception was made. Right now I'm good with that.
There was also a bit of good news. She thought I had had all the tests that were required to this point. So hopefully when we get home I won't have any tests waiting for me.

Thursday, October 22, 2009

Help

Even on high gear my brain can be foggy! At this convention we're going to there seems to be ample time for questions for these doctors. If you --anybody!!!--can think of any, please email me. I want to have my questions ready, to the point and succinct. Lon and I want as much information possible before we make any decisions down the road. Please help us out.

Test results

I'm down to only one vial of blood every two or three weeks. I just got the results of yesterday's test and am very disappointed. My GFR has dropped to 25 and my serum creatnine is 2.04. This stuff stinks.

Wednesday, October 21, 2009

Referrals..

I got an email from the oncologist today. Neither he nor the kidney doctor are able to refer me directly to the UCSF transplant team. I have to be referred by the GI department. That will be odd, because I don't have a classic need--my liver function is great--except for that pesky protein. It will be interesting.

Genetics

The Oakland Kaiser department of genetics called today. There are six subtypes of what I have--very small subtypes. The treatment is basically the same, but I would like the genetic testing to see exactly what kind I have--mainly for the kids. She had done some homework and it is a blood test, but there isn't even a lab in the US that will do it. It has to be sent to Canada. She took down information about my family and she couldn't see where it had come from or if it would even ever appear again. They have a pow-wow every week and she was going to talk to the experts, so we'll see what comes of that.

Monday, October 19, 2009

And a word from Mom

This blog is turning into the puppy that everyone wanted and promised to take care of, yet Mom ends up doing it. In case you haven't noticed, the kids started this and even did the first few posts. How about it kids? Do we need a job chart on the fridge?

What????? What are the odds???????

This morning I got a call from a lady in Chicago. She is arranging the first ever familial amyloidosis convention in the US--probably anywhere. It is in Chicago on Halloween weekend. The doctor that recommended the transplant as well as a doctor from Indiana University will be there to speak very specifically on the fibrogen non TTR amyloidosis type that I have.
So what are the odds of finding about this two weeks after I am diagnosed?
Brian had a Southwest voucher that he generously offered to us. The plan was for Lon to go and pick their brains for the genetic aspect. Then I saw the name of the doctor that suggested the transplant, so our new strategy is to divide and conquer. We will both be going for different purposes. This is really a last minute trip. We'll only be gone for a few days, but hope to be much more educated.

Off to the doctor

Today I had an appointment with the oncologist. Just a week ago the treatment I needed was chemo and a stem cell transplant. Having the new diagnosis changes all that. This doctor called a doctor at Boston University who said that the optimal treatment for my condition is a liver/kidney transplant. The protein that is gumming up my kidneys is produced in the liver. My liver is working just great, except producing some of this abnormal protein. So I don't need an oncologist any more. In fact I'm pretty clueless about what kind of doctor I need. I have lots of questions, but darn few answers.

Sunday, October 18, 2009

Sunday

Despite having a busy night Friday night and having a very full and sad Saturday, I made it to Church on Sunday. It was the Primary program and the kids were so cute. They knew the songs so well and their spirits were so sweet and tender. I conducted in RS and even stayed for Ward Council. I'm not sure how much I contributed, but even a warm body is OK sometimes. I am so happy that I am off the loopy blood pressure meds and can drive somewhat safely again.
When I got home I put on my PJ's. Alan and Teddy came over and we had chicken soup and brownies. It was a very nice Sunday.

Saturday, October 17, 2009

Northern CA Amyloidosis Support Group

Today we went to this support group. There were 26 people there and 13 had amyloidosis. All except me and two others were the primary type. There was one man who had had it for ten years, and the rest had it from very recently diagnosed (me) to maybe five years. There were at least three heart transplants and a few other transplants. They threw around jargon that almost seemed like a foreign language. They all knew the doctors in the US who treat amyloidosis. Despite all of the bad news and problems, it was a very upbeat and positive meeting. Everyone was so suppotive of one another, with positive attitudes.
I feel so sorry for the suffering and sadness that these people are going through. I think with the kind I have, I will avoid most of these complications. I hope I can keep things in perspective.

Friday, October 16, 2009

Time for a happy dance

Tonight I am going to work at the Temple. Physically I feel pretty good and it just feels right. I have missed serving so much. Lon and I have gone to do sessions, but I haven't worked for about six weeks--the longest I've been away since starting to work there.
We were all ready to leave and the phone rang. It was the kidney doctor. He had done some homework! He had found a study from the UK that focused on the type of amyloiosis that I have. He had made calls to Boston University and the Mayo Clinic and found some information. I thanked him, then added, "Do you know how many people are praying for you and me? You need to get with the program!" He is kind of young, but I don't think any of his patients had ever spoken to him like that. I think he knows I have some high expectations.
The temple was awesome. It was so nice seeing the other wonderful workers. Their prayers have made such a difference. I am so honored to be working with these people.

Appointment with the kidney doctor

Lon and I have been reading up on amyloidosis like crazy; remember my doctors have no experience with it. We went to this appointment thinking we were kind of on the same page as the doctor. We were wrong. We knew much more than he did. I finally asked him if he had done his homework. "No, Mrs. Tidwell." He promised to call.

Thursday, October 15, 2009

Another diagnosis???????

The oncologist called. The Mayo Clinic called and said I had Familial Amyloidosis-fibrinogen Alpha-chain type. What???????? This is an inherited disease and I had to have recieved the bummer gene from my Mom or Dad, but neither one had it (but remember how hard it is to diagnose--it can't be diagnosed with a blood test, it has to be a biopsy). Also there is NO history of kidney failure in my family. I then thought about my grandparents. My mom is one of six kids and my dad is one of seven. Still no clue. Three of my grandparents were born outside of the US and the geneology trail gets cold right away, but still there should be some hint of it if it is passed down to 50% of the children. And now I am totally devastated--What in the world have I done to my children and grandchildren? I am shaking and scared and guilty and crying. This is the worst possibe news. I called my friend Kevin and he thought the news was wonderful--familial amyloidosis like I have usually just involves the kidneys, so I don't have all that gruesome stuff to look forward too. And as far as cursing the kids, he said it is very, very rare that the gene expresses itself.
I am having a hard time a hard time accepting this. This is a very, very rare type of amyloidosis--we estimate that there are maybe fifty people in the US with this. I can't figure out if it gets passed 50% of the time to your offspring, and doesn't manifest until you're in your 50's, why don't more people have it. Lon and the doctors understand it, but I don't.

Amyloidosis

Amyloidosis is a very mean disease. The very first time I googled it, the article said that it was usually fatal four to eight months after diagnosis. I was naturally devatated. Further reading wasn't quite so grim, but there was really nothing encouraging either. The abnormal protein can collect in most every place-- commonly the heart, kidneys, gut, nerves, bones, throat, brain, esophogus, and skin. There are no "cures" at all. Stem cell transplant and chemo, oral chemo, high dose steroids, a couple of things I have no clue about, and finally, best supportive care are the available treatments. It is very underdiagnosed, especially if kidney involvement isn't one of the first symtoms. It is also very individualized--people don't have the same symptoms, nor do they react the same to the treatments. This is something that I don't want any part of, but it is now my reality.

Amyloidosis, Oncology and Multiple Myeloma

Why was Cathy scheduled to see an Oncologist?
Amyloidosis is not a cancer. Cancer cells are destructive to the parts of the body that they grow in. Amyloidosis is caused by proteins that are made by otherwise law abiding cells. For some reason these cells get the message to make too much of one kind of protein, or make proteins that are not made correctly. These proteins bind with other normal proteins and form deposits in organs and other parts of the body.
The exception is Multiple Myeloma where cancer cells in the bone marrow are creating the troubling proteins. Primary Amyloidosis is also caused by cells in the bone marrow. Multiple Myeloma and Primary Amyloidosis are treated with chemotherapy drugs that are also used to treat cancer. 85% of Amyloidosis patients are of the primary type, that is why Oncologist most often deal with Amyloidosis patients. Two common treatments for Primary Amyloidosis are Stem Cell Transplantation and Chemotherapy which oncologists are familiar with.

Lon

A recap

So I have had so many tests and procedures up to now. I didn't even know there was that much stuff to test for. I have had a kidney biopsy, full skeletal x-rays, an MRI, an ultrasound, a bone marrow biopsy, an EKG, an echocardiogram, and an alphabet soup full of blood and urine tests (the usual ones plus ones like PT, APTT, Factor 10 activity, kappa lambda light chains, protein electrophoresis, immunoelectrophoresis, beta 2 microglobulin, troponin 1, BNP, ALT serum, AST serum, alkaline phosphatase, bilirubin serum, albumin serum, calcium serum, lactate dehydrogenase, random glucose, serum cortisol, TSH, rheumatoid factor, serum creatnine, serum potassium, phosphorus, cryoglobulin, Westegren ESR, PTH, C3 complement, C4 complement, ANCA vasculitid, Anti GBM, Hep B, Hep C, Anti Hep C, ANA, Anti DNA, Anti Smith, C reactive protein, PT, Blood protein, blood calcium, CK MB Isoenzyme, Uric acid, reticulytes, chloride, carbon dioxide, and I'm tired of typing this in, but you get the idea!) Some of the results have been stellar and normal, some have been borderline, and some are so far out of whack that it's scary! I've also been taking more and more meds all the time.
I have had many diagnoses. In order #1 your kidneys are fine--drink more water
#2 Kidney failure due to repeated bladder infections
#3 Kidney failure due to high blood pressure
#4 Kidney failure due to preeclampsia during pregnancies 27+ years ago
#5 Kidney failure due to fibrilary glomulernephritis
#6 Kidney failure due to Amyloidosis
My kidney biopsy started out and Stanford, then was sent to the Mayo Clinic for further evaluation and clarification.


Wednesday, October 14, 2009

A good husband

Everyone knows that Lon is a really good cook. One of the treatments for amyloidosis is chemo and stem cell transplant, and you're hospitalized for about three awful weeks. Lon lacks good laundry skills, so I thought we would have some quality bonding time together and do some sorting. Much to his credit, he kept the silliness to a minimum and actually listened. He now knows (or pretends to know) how to sort clothes.
We also had a little tutorial on counter wiping. He again listened carefully, but I have not noticed much improvement. I guess I'll just stick to being happy for all the good stuff he makes to eat and let the counters slide. In the grand scheme of things it probably doesn't matter much anyway.

Monday, October 12, 2009

Grandpa day care/Women be shopping...


I just found this cute picture. When we were in Virginia Karen won a free pair of Gap jeans and I had a free $10 gift certificate to JC Penney. We enlisted Grandpa and then we were off to the mall! She found a very cute pair of jeans and I found an OK pair of pants. It was so fun to be shopping together and nice to know that the kids were in Grandpa's capable hands. And yes--when we had our first grandchild, Lon announced that he had changed enough diapers and as a Grandpa he wasn't going to be doing THAT anymore. We still get a good laugh from that one. And I guess changing diapers is like riding a bike--you don't forget.

Sunday, October 11, 2009

Back to the proper order of things


I went to Sacrament Meeting today. It was so nice to take the Sacrament and see our ward family. I only went to one meeting and I handled it pretty well.


When we got home I really wanted to take dinner to Alan and Ellen. It's hard to move in and just plain hard, so I went to the comfort food among comfort food--Grandma's maca. It's easy to make, but takes a ton of time to cook. I was so happy to be able to this for them.

Saturday, October 10, 2009

Congratulations Alan and Ellen

Alan and Ellen have bought a home. It is in Redwood City and today was the big move. He had some of the gente from the Spanish Ward coming to help and had rented a big old truck. Ellen had done an excellent job of packing and off we went to Redwood City.
It is a very cute house--it fits Alan and Ellen perfectly--modernized, but full of cute, vintage-type touches. The very best thing was that Alan's roommate from freshman year at BYU and his wife came especially from Oregon to help (OK--I get to take some literary license here). It was so nice to see them (thanks for lunch!) They and all the others were great help--I was relegated to the one chair in the house-fortunately it was padded! I did a little bit of Grandma daycare, but mostly I was pretty worthless. Ellen is due to have baby number three in January and three year old Alice and one year old Teddy keep her flying. I couldn't believe all the ligting, bending, and unpacking she did. By the time we left, beds were up and I was pretty tired.

Friday, October 9, 2009

Ow,Ow, Ow!!!!!!!

NOBODY warned me about how sore this thing would be. In fact many bone marrow biopsies are done right in the office, and I actually thought about it until Lon spoke up and said, "Why are you even considering it?" (that brought him several steps closer to husband of the year). Thursday night it was so sore that I could barely walk. I asked Lon to come and hold my arm while I gimped to the front door (that was my walk for the day). In the middle of the night I got up to confer with Dr. Google and sure enough, it could be sore for several days. I was seriously in big time wimp mode. I spent the next few days limping around with a very sore bum. Usually I am a pain in the bum, but this time I really had a pain in the bum!

Thursday, October 8, 2009

P.S.

I'm slowing down in my old age. After talking to Brian, he asked me if I had asked the technician (insert excited voice here) Well what is it? What is it? A boy or girl. I can't believe I let that one slip right by me.

Still the same day.....




So bone marrow biopsy is off somewhere getting scrutinized, yet here I am still at the hospital. I was finished at 1:30 and the echocardiogram wasn't scheduled until 2:45, They remembered me from last time and they are just a bunch of great health care professionals. They knew I had to hang around and they really wanted to just let me hang out in bed there, but there had been three people brought in by ambulance and they really did need my bed. One nurse took Lon aside and told him when 1:30 came to just take off. They couldn't release me without him, so I thought that sounded like a perfect sneaky dirty, but I really didn't need to be there.

They got me this nifty wheelchair. It reminds me of seating in fast food restaurants--designed to look good and comfy, but in reality uncomfortable and really designed to make you want to get out of there.

For the kidney biopsy I was fine beforehand, but got sick to my stomach after. This time I felt queasy before and great (stomach wise) after, so we went to the hospital cafeteria. It just sounds wrong, doesn't it. Lon got a hamburger and I had a couple bites and before we knew it, we were off to the echocardiogram.


One horrible thing (among many) about amyloidosis is that the amyloid protien can collect in just about every organ, including your heart. The walls of the heart thicken and stiffen up and there's really nothing short of a transplant that will fix it. The echocardiogram was super scary for just that reason. The doctor in Virginia did tell me that the results of two blood tests were as good of prognosis as any of the other tests, and those results did look encouraging, but still.... I don't know which is worse--waiting and not knowing or really knowing. This is really the stuff that nightmares are made of.

So the time of sort of truth had come. The technician was a cool guy from France. Of course they can't tell you a darn thing, but it didn't stop me from trying to shmooze him up to pry out some kind of hints about my heart function. Unfortunately, he was a professional and let me babble on.

Lon took these pictures of my heart. In some ways they are reminiscent of the Grinch's heart--remember when it grew? But in other ways it just doesn't show how much love it is capable of. It's odd to see something that has been working so hard 24/7 for the past 58 years, but really can't show that this is really what makes me and defines me. Pretty philosophical.

Echocardiograms are supposed to take 30 to 45 minutes, but he only took 15. Good news or bad?




















Bone marrow and echocardiogram day




This is my official procedure outfit. I have pull on pants with no zipper (easy to get on when groggy and no metal zipper or snaps), Top with no pesky buttons (could be a challenge when groggy), wool socks to keep the piggies warm in those cold rooms, and birkenstocks (wish they were my cute new sandals) that are easy to slip on and off. Who says I don't plan ahead!



I am holding my 24 hour sample. Seriously TMI, but it wasn't easy! Maybe I should have suspected the day would not be worthy of that smile........






We safely delivered the sample to the lab (OK-I was too embarrassed to carry it, I made Lon do it. I still feel kind of bad, but I'd make him do it again).






We checked into the hospital about 8:30 and it really does take about an hour and a half to get everything ready for me to get shipped off tho the procedure room. I changed and got my IV and went over the drugs I was taking in detail and the breakfast I had not eaten and blah, blah, blah. The same kind doctor who did my kidney biopsy was doing this biopsy, so I felt good about that. They were going to use the same happy combination of drugs--fentanyl (twilght sleep) and versed (forget everything) in the IV line with a generous amount of lidocaine in the biopsy area.





Before I continue, I need to mention my "reactions" to these kinds of drugs--basically not much of a reaction. I am able to produce a quality amount of adrenalin that overrides many anesthetic properties. So when I go to the dentist I need to take xanax to settle down my adrenalin so that it actually numbs my tooth. It's really a pain. The adrenalin rush would be good if a car fell on you and I could just pick it up, or a bear or aliens attacked I could fight back, but in general it's pretty useless and literally a real pain until doctors figure out a way to trick it into settling down a bit.




They shipped me off to the procedure room and started giving me stuff, but unlike the kidney biopsy, I didn't conk out right away. I saw them bring in the big bundle of stuff they used for the procedure, but looked away because I really didn't want to see the tool they use to get the bone and bone marrow. When they do a biopsy, the most common places are the hip or breastbone, but after the doctor looked at my x-rays (remember the 23 I had) and the MRI, he thought my iliac bone would be the primo spot. That is darn close to the tail bone, and they were going to use a fluoroscope to guide the tool. Fortunately, the last thing I remember is them starting to clean the area. I also remember hearing that there will be more pressure and give her some more lidocaine.




The next thing I knew I was back in the real world. They had just finished and I asked to see the bone sample (I know, pretty gross). It was unremarkable--two little hunks that were grey and maybe half the size of a pencil eraser. I then saw the two vials of bone marrow juice. They were kind of watery, bloody, but also pretty unremarkable. The nurse was making up 20 slides with some of that. That was interesting--she'd put a drop or so on the slide, then pull it across with the slide cover. It made quite a nice, smooth layer of stuff. In retrospect, maybe it was so interesting because I was still groggy.




Then it was back to Lon and I had to stay for a couple hours to make sure I didn't do anything exciting. I didn't, however my fairly pain free experience was changing a little bit. The lidocaine started "thawing" out and it kind of hurt. And it only hurt more. I asked for a vicodan and they brought me one and it worked OK, but I could still feel it. Could this be a tiny warning perhaps?

Wednesday, October 7, 2009

Doctor stuff

Tuesday I was supposed to have my bone marrow biopsy, but it had to be rescheduled to Thursday. I'm not looking forward to that! I have an echocardiogram after that so it will be a long day. I have had more than 100 blood and urine tests since this stuff started. My record so far is fourteen vials of blood at one sitting.
I thought I had a bunch more yesterday, but it turned out to be only one-- a kidney function test. My serum creatnine is supposed to be less than 1.11 and it was 1.64--a little better than my last test. My GFR is 32. It should be over 60, but 32 is also a slight improvement. I'll sure take that though!
Today I am doing a 24 hour urine collection. No fun at all--enough said.
Monday I meet with the oncologist. Hopefully the mayo Clinic results will be ready. We are also praying that only my kidneys are involved in the amyloidosis process. So far the liver tests look good and the heart blood work looks good so we are praying for that. A few weeks ago I thought the bummer kidneys were the worst thing possible. Now I'm hoping that's all that is involved and am ready to accept that.
He might also discuss treatment options. Thursday I see the kidney doctor. Since my kidneys have started failing my blood pressure has gone hickedy-bonkers so he is trying to find the right combination of drugs that will work well and not have my legs buckle! My cholesterol has also been thrown out of whack and I have medication for that. I have gone from low maintenence to seven plus pills a day.
Most of all though I am thankful for a husband who has been right at my side and kids who call and sometimes cry with me. I appreciate all the cards and notes and emails I get--they always seem to come at just the right time. I am also grateful for Priesthood blessings. So far they work better than any medicine. I'm also thankful for all the prayers and fasting in my behalf. They are working!

You know it's a third child when.....


At the apple farm I think Tyler thought he needed a little snack. Although there were two grandparents and one mom and two big brothers handy, Tyler took it upon himself to forage his own apple. There were a few laying around on the ground and he snagged a good one and contentedly chomped on it until there was nothing left but the core. On the hayride there were a few toddlers who wished they had been as resourceful--they just looked at him and cried for their own apple.
Way to go Tyler!

Mystery box






We had to go on some errand and when we came home there was a box on the front porch. My slippers are pretty beat. They usually last about 18 months and the slipper powers that be think that people only wear (and buy) slippers around Christmas. Knowing that, you think I could figure out that I need to get slippers once a year, but somehow I think my slippers look just grat and they will easily last another year. The end result is that I look like an orphan for about six months. This year is no different. So I thought "Great! The kids really feel sorry for their Mom."







Well, was I ever wrong! Randy's girlfriend sent me these cool sandals. I would have NEVER picked them out for myself, but I absolutely love them! They fit grat and look great. She alsosent a vey sweet message with them--she hoped they made me feel as beautiful on the outside as I am on the inside. What a sweet thing to do. I really wanted to wear them to my bone marrow biopsy tomorrow, but practicality took over.









Thank you so much!






Monday, October 5, 2009

Another tender mercy

I was laying around bed this morning when I recieved a call from Thailand. It was one of the sweet sister missionaries who served in our ward and went home about a year ago. She had been in the temple in the Philippines and had been thinking about me. As you all know
I'm pretty unremarkable so I was shocked to hear from here. She had stayed up late to call me and told me how much the missionaries appreciated my efforts in the ward and other nice stuff.
The Lord sure knows that I needed that little boost! Thank you Sister K.

Saturday, October 3, 2009

Conference

Wasn't conference just amazing? Every message seemed to be directed to our needs at this time. I'm so thankful for a living prophet and to be a member of the Church. I would be lost without that knowledge.

Friday, October 2, 2009

Looking for fall color


Driving to the airport was like being taunted--the fall color was almost there, but everything was still green. Friday night we went to a wedding in Sacramento and Lon found us a good hotel on Priceline. We spent the night and he was determined to find me some fall color.


We bought sandwiches for lunch and we were off in the Sierras! We had to go to 8,000 feet in elevation to finally find some pretty leaves, but he found them. The aspens that were still green were beautiful too. They just shimmered in the breeze.


We had our sandwiches at this gorgeous little lake.


We then drove to Lake Tahoe and got some take out calamari at our favorite seafood place there.


Thanks honey for an adventure.

Thursday, October 1, 2009

Intruders!

We got home after 10 p.m. I think. I don't do well at all with time changes and this trip was no exception. When I got in the house my Nancy Drew detective skills were on high alert. I had left the house pretty clean, but doing the floors really bothers me. Immediately I could tell something was amiss--my feet weren't sticking to the kitchen floor (well, maybe it wasn't quite that bad, but it sure wasn't clean and shiny). Ellen and a friend had come over and cleaned the house! Bathrooms were sparkling (they were waiting for Lon, too!) and floors were vacuumed and mopped. Ellen really knows how to make a girl feel younger and thinner!!
Thank you so much!

Home again or back to reality

We had a crowded flight home, but we finally got to Oakland and Alan and Alice were waiting for us. Alice saw my carry on bag and thought she might be a tiny bit hungry. Good thing I didn't eat my cookie treat on the plane. I'm glad all the kids know that Grandma usually has a little treat! It was good to be home.

Time to come home

Being in Virginia with the kids was just what we needed. It's one of those things that you don't even know that you need, but once you're there you really knew you needed that break and that distance. Our week ended much too soon. It was nice meeting Randy's girlfriend. Randy gave us the grand tour of the business school where he and Ben spend so much time and it really is a good place. Those boys are so lucky to be able to go there.
It was nice seeing where they live--both kids are in good places with good people nearby. Charlottesville is a beautiful community. We got to try some new foods and both kids did a great job with Grandma daycare--they kept me well supplied with lots of bottled water and plenty of snacks.
We rented a car to drive to the airport and on the way the woods were just ready to turn color. Probably in the next couple of weeks the hills will be ablaze with color, but we had to get home to the hound and the doctor appointments.
Thanks guys for a memorable trip! Love you lots.

Wednesday, September 30, 2009

Apple picking


Today we went with the business school wives to a genuine apple and peach farm. We got some "apple education" then got to pick apples! It was a fun time and we came home with bags of yummy apples. We also went on a hayride and had apple cider and apple donuts (of course!).

Tuesday, September 29, 2009

What are the odds.............

Sunday after dinner Randy's honey sat with us and went through my pile of test results. She is smart! She made things kind of, sort of understandable for me (no small task!) and showed us what different results meant. I really appreciated that.

It's official. I now have a primary care doctor, a kidney doctor, and an oncologist who have never had a patient with amyloidosis. It's been kind of scary. Well.....Randy called and

He happened to have a girlfriend who is a medical student, and
She happens to have a small group mentor, and
Who happens to take care of the amyloidosis patients at University of Virginia, and
Who happens to have a half hour to meet with us!

What an amazing tender mercy. He spent three minutes short of an hour with us. There are between 1,500 and 3,000 cases of amyloidosis diagnosed in the U.S. (at this point I'm thinking I should have played the lottery with those odds). He gave us tons of hope. He explained my kidney biopsy and it wasn't quite as grim as we thought. He told us that I was being treated the right way. Correct tests have been ordered and answers should be coming. (side note--the kidney biopsy was sent to Stanford for analysis. They found the amyloid bad stuff, but it wasn't behaving as is should have, so they sent it off to the Mayo Clinic).
It was such a relief to talk to someone with actual clinical experience. He also told us what kind of treatment to expect. Amyloidosis is so uncommon that there isn't even a standard therapy. All therapies are considered clinical trials. Yuck!
Still it was so good to talk to him and so generous of him to give us his time and expertise.

Monday, September 28, 2009

Monticello


Randy took us to Monticello today. Living and growing up in California doesn't give one much sense of history. They recently redid the visitor's center at Monticello and it was beautiful. We got to tour that house that Jefferson designed and built. The grounds were landscaped to perfection and it was a wonderful afternoon. Thanks, Randy

Saturday, September 26, 2009

Off to Virginia

Last night Alan took me to the airport to fly to Virginia. It was my first experience on a red-eye flight. I now know why they call it that.
I flew Jetblue and was excited to have a personal babysitter (TV). Unfortunately it was tuned to some odd time zone because all I got were infomercials and a rerun of some random college football game on ESPN.
I packed a large bottle of water and by sun-up the water was gone and I was done!
Randy got up at 4 a.m. to drive to the airport to get me at 6. He brought a pillow and blanket for me. We went to a Lowe's parking lot and slept for a couple of hours. We also used the Lowe's tidy facilities to brush our teeth. We got breakfast at a grocery store and wondered how to spend the rest of the day. Lon was coming from Connecticut on the train and wouldn't get there till later that evening.
Luckily Karen got ants in her pants and as soon as they all woke up, they came to get me and left Randy to do Grandpa day care.
When they got there we went to this really cool air museum by the airport. They had the Enola Gay on display as well as a stealth bomber, Concorde jet, and space shuttle. Then it was off to Charlottesville with Karen and Ben.
Thanks guys for such a cool adventure!

Mom

Thursday, September 24, 2009

Heart Attack

A mystery visitor came and decorated Mom's door. It made her cry.


Karen
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Good News

GOOD NEWS! The doctor sent a short email this morning saying that the bones looked good. They were looking for multiple myeloma. Also the latest results from the blood tests: The kidney function is still lousy, my blood cratnine improved slightly from 1.85 to 1.77. All the other tests were normal! Keep praying.

All my love,
Cathy

Wednesday, September 23, 2009

X-ray Day

Dad left for the Connecticut today and Mom drove herself to Kaiser for x-rays. They took x-rays of her whole body, even her hands and feet. She must have felt like a top model! On Friday Mom flies to D.C. to visit the VA gang and Dad will meet up with her here. We're looking forward to some fun!

Karen

Thanks for Dinner

The kidney doctor put me on a rather restrictive diet--low sodium, low fat, and low protein. It doesn't leave much. Lon and I fondly refer to it as my "shredded newspaper" diet because that's about all it leaves. Last Saturday a mysterious bag appeared on the front porch stuffed with good things from Whole Foods. There was salt free tomato sauce, an onion, red pepper, fresh basil, blueberries, raspberries, smoothie drink, pasta, yummy bread, and a really cute bag. We were so touched that someone would go to all that trouble for us. Of course the pasta was absolutely delicious because of all the TLC it took to get to us. Thank you so much--it really made my day!!!

Cathy

Tuesday, September 22, 2009

Preliminary resluts of 9/22 consultation with hematologist

Just spoke with Mom. The appointment lasted almost three hours. In the coming weeks she will need a bone biopsy, a full body x-ray and many other tests. They took 14 additional tubes of blood today.

It seems the Stanford lab was not able to make a precise determination based on the kidney biopsy, so a sample will be sent to the Mayo Clinic.

Fortunately, she is still planning on flying to Virginia on Friday!

Please call her.

Alan


Just the Beginning

I created this blog to keep everyone informed about Mom's Amyloidosis progress. She was just diagnosed last week and she is currently meeting with an oncologist/hematologist at Kaiser. Hopefully she will have more information today. Our prayer's were answered on Sunday when Mom received a call from Dr. Kevin Anderson, an LDS Kaiser physician who was also diagnosed with Amyloidosis. He is an amazing man and just talking to him gave Mom and Dad hope and strength to fight this battle. He is well connected with the Amyloidosis specialists at Kaiser, Stanford, and the Mayo Clinic. He has an amazing story, and is my inspiration for starting this blog. You can check out his blog at www.kevinandbarbie.com. Dr. Anderson believes Mom will need an full diagnostic workup involving blood tests, bone marrow samples, x-rays, endoscopy, colonoscopy, etc. It certainly won't be easy, but I have one tough Momma! Keep praying for her!