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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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!

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?

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!

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.

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.

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.

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.