Saturday, February 26, 2011

Amyloidosis support group, Feb 20. Conversation

Esther demonstrating stress reduction technique
she learned at her support group.  See bottom
for pictures of Esther doing other exercises.

There were a lot of people at the support group yesterday [Saturday, Feb. 19], maybe 40.  Dr. Kevin spoke, he's a Kaiser doctor who's had a heart transplant because he had amyloidosis. (Last name?)  I don't even know that, everybody just calls him Kevin.  He's in his late 40s, early 50s, and he still puts in 8 hour days at Kaiser.  But he no longer heads his department.  (What department?) He never said.

Kevin told us that amyloidosis causes the body to accumulate too much protein.  Usually, pieces of protein in your body come together in a curved shape, and your body is able to eliminate them. But with amyloidosis, they come together in a flat shape, so your body can't eliminate them, and they attach to one organ or another of your body.  And that means amyloidosis isn't just one disease, it affects different parts of the body differently.
With him it was the heart, but he's not going to go through another transplant, if this one doesn't work, that's it.  Kevin and his wife went to Paris recently. but he really isn't well.  But his approach is that he's going to everything he can, while he can.

With me they knew right away I had amyloidosis after I had that problem with my knee.  But most people say the doctors took a long time to diagnose them with amyloidosis, maybe a year, going from one doctor to another.  One man was there for his wife, who has amyloidosis in her throat, so it was hard for her to swallow food.  She went for a year and a half before they knew what was the matter with her, and they could settle on a treatment.

Some people are treated by chemo, like me, and some get stem cells.  Kevin said he had bad reaction from his chemo, so he stopped, it just took too much out of him.  But I'm not eligible for stem cells, that's why I'm on chemo. (Prognosis?)  My doctor says he doesn't know right now.

They asked if I was still planning on going to Israel, and I said the wedding had been postponed until May, and it might be postponed again until August.  Now that I'm back on the injections, August might be better for me.  Whether it's May or August, I'll need to have somebody on the plane with me.
(Injections?) My hemoglobin went down to 9, it was 10 before, and everything else was higher or lower than it should be.  When they gave you your results, they show you the normal range, so you can see if your scores are OK.  Maybe I'll be better now since just finished my chemo week.

In the end, a woman gave a talk on relaxation, and taught us a technique She was so good that almost everybody fell asleep. Some people have trouble falling asleep at night, but not me.  My hands wake me up sometimes when they hurt, but I never have trouble falling asleep in my chair.

(The technique?)  If you're stressed, rub the tips of your thumb and index finger together until you feel like you're calming down.  While I do that, I try to withdraw from what it is that's bothering me.  [Helpful?] For me, yes.  Another helpful thing is to prepare carefully for what I need to do.  Like when I go to bed at night, I check that everything is like it should be, because it's hard for me to get up again.  It's better to prepare than to repair.

Pictures of Esther doing other hand/arm exercises, to which she attributes diminished pain in her hands.

No comments:

Post a Comment