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devineone
@devineone

Posts: 24
Joined: Aug 22, 2018

Kidney failure and AL amyloidos

Posted by @devineone, Sat, Aug 25 6:57am

Is anyone in dialysis also dealing with cardiac amyloidosis. And if so how are you being treated for fluid retention?
My husband has been on dialysis for 3 years and the ALAmy has really been rough.
Hs breathing and energy and fluid retention are really bad. Thank you

REPLY

Hi, @devineone – sorry to hear your husband's breathing, energy and fluid retention are really bad.

I'd like to tag some of the members who've talked about kidney failure/dialysis to see if they may also have dealt with cardiac amyloidosis or known of this in others, like @gingerw @judyth @jolinda @susanjc. Hoping they may have some input on treatment for fluid retention.

How is he doing today, @devineone?

I would like to tag a member who has also discussed problem with breathing and fluid retention. @ginal, How are you getting along? What information do you have to share with@devineone ?

@rosemarya

I would like to tag a member who has also discussed problem with breathing and fluid retention. @ginal, How are you getting along? What information do you have to share with@devineone ?

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My breathing is a little better, I feel it's because the doctor lowered my blood pressure pills. Now I'm on PD and get more dehydrated so that can also cause shortness of breath..

@lisalucier

Hi, @devineone – sorry to hear your husband's breathing, energy and fluid retention are really bad.

I'd like to tag some of the members who've talked about kidney failure/dialysis to see if they may also have dealt with cardiac amyloidosis or known of this in others, like @gingerw @judyth @jolinda @susanjc. Hoping they may have some input on treatment for fluid retention.

How is he doing today, @devineone?

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Thank you so much. He is very tired and now constipated, probably due to the chemo drugs and of course cannot drink a lot of liquid due to the dialysis…we are trying BeneFiber today as you do not have to have 8oz of liquid, you can dissolve in 4oz, and you can mix in applesauce or grits as it has no taste and dissolves pretty quickly and not lumpy. As far as fluid tomorrow at dialysis he will ask if they can lengthen the time. Fingers crossed..

@lisalucier Fluid retention can be caused by food intake, or interaction from medications, or dehydration [believe it or not!]. I often get bouts of it, myself, and often can trace it back to one of those causes. It may not show up right away, either. I hope that @devineone is able to get some answers from the Drs. Personally, I have been cleared to take low dose furosemide for a two day regimen as I see fit, but I monitor real close.

Anyone with IgA? I was diagnosed 7 years ago! Does anyone with IgA suffer from neuropathy of feet and hands? Currently having a “flare up”, extreme exhaustion and flank pain! Anyone else out there feel similar symptoms? When your creatinine goes up, do you feel nauseous?? That is what it does to me!

@eileen14, I want to welcome you to Connect. I would like to share a discussion where some members are talking IGA. I think that it would be a good place to post your question: Kidney & BladderIGA Nephropathy
https://connect.mayoclinic.org/discussion/iga-nephropathy-2556ef/?orderby=ASC#chv4-comment-stream-header

Here is a link to Mayo's patient education – IgA nephropathy (Berger's disease)
https://www.mayoclinic.org/diseases-conditions/iga-nephropathy/symptoms-causes/syc-20352268

Has your doctor had anything to say about this?

Thank you Rosemary. I went to Mayo Clinic in Jacksonville for a second option when I was diagnosed 7 years ago. Loved the vibe, but, could not do the 5 hour drive and hotel stays every week. I have a great nephrologist here in Venice, FL. Only problem is, her 65 year old Mom also has IgA. She only has minimal complications from her illness. My IgA is the advanced one which will lead to kidney failure someday. So, sometimes, my multiple ailments seem to baffle my doctor. Wish I only had the easy IgA. But, life dealt me the “bad hand”! I will stay in contact!

You do sound like a complicated case. But you are ahead of the curve by having good doctor(s) and you sound very well informed and proactive about your ailments.
There are some members who are hovering at varying levels of CKD in Kidney/Bladder Discussion Group and in the Transplant Discussion Group. I can help you to locate them if you are interested now or any time in the future.
Hugs.

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