Missed Post
I was kind of surprised that I didn't get any jaunts or other feedback at all about the test results I got earlier this month. Of course, I don't update my site on a regular basis anymore, so I didn't realize that when I wrote about the results on the 5th, I never posted it, only drafted it. So go and read my old post below. That's okay... I'll wait.
I've been on the ACE inhibitor since June 8th, and it's made the edema a little better. I went 10 days without taking Lasix, which is the best I've done in the last few months. The edema that I do get still puts me outside of my comfort zone, but it's moving in the right direction. Very, verrrrry slooowwly.
There are pictures from this month Pop's Run online. You can find them here.
By the way, check out Beth's latest article. She's got news on the Rochester support group meeting, and even has some pictures of some real amyloid.
posted by Tony @ 8:27 PM |
2 Comments:
Good news about the edema...and welcome back! :-)
Hi Tony,
Just dropped in to say Hi and to read your blog. That was suggested by Beth, with whom I am in contact with.
My husband, a 74 yr old, was diagnosed with AL, in Dec. 2005. His kidney's, heart, and bladder, are involved. We have just recently returned from BUMC, and just today received the report. I noticed that you have a problem with edema. This is what started the whole seek & find with him. His ankles and legs were so swollen that his ankles hung over his shoes at times. I saw that you are having some success with your edema improving. He at this time is on 40mg Lasix, x2, and 25mg Spironolactone, x2 daily. He is just starting to notice that some of the edema is gg down. My question, I guess to you, is, does this cause you excessive fatique? His hopes were dashed when his "water" didn't disappear and he thinks this will go on forever.
He has already taken 560 mg of Melphalan with Predinsone, for 10 cycles, and only saw a slight improvement, with a flucuation, so now they are recommending the Revlimid and Dexamethasone. We are awaiting a call from his Hematologist to get him started on this.
I also noticed something else in one of your postings about the metal dust. Ironically, Ray was a machinist for 37 yrs., and was exposed all that time to such. It almost makes us think that this could be the cause of his "infiltration." We are all looking for answers, right?
Thanks for taking time in reading this, and all the best to you.
Brenda
bjones41@sbcglobal.net
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