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@tml

Did the MM cause your kidney issue? I know that it often does kidney damage before diagnosed. I was and am lucky that so far I do not have that situation but was told I know have T8 damage which is affecting my spine and rib cage. I have 25 mgs of Revlimid so hoping you are right and it is working when fatigued! I have done some 2 and 3 mile walks when it was warmer. I think they are trying to get it down with 40 grams of dexamethasone also and Velcade. I was on it last year through September so hope still working. I guess I need to be more patient!!! I hope that you can have a transplant! My husband’s brother in law was a match for Bernie and all went well there. I see they now seem to do a lot of swaps so that more can receive. I seem to be okay with appetite and no rash yet. Maybe I am tolerating it okay. I am at day 10 so about halfway in my first round. I know being so anxious is bad so I will try to follow your example! The down side is I am always checking my pulse! That is actually how I was diagnosed as thought having a heart issue but MM found. Actually used my DVT to get a CT scan. Last year at this time I was blissfully unaware I had this. Happier days!!! I need to think they will come again!!!

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Replies to "Did the MM cause your kidney issue? I know that it often does kidney damage before..."

@tml No, the kidney issue was diagnosed formally in 2015, MM wasn't until 2018. We double checked it also, to be sure MM wasn't part of the issue. Because of the MM and nature of the rare kidney disease [only 50 people in the world diagnosed with it!] I am not a candidate for transplant. Working on holding on to function as long as I can before needing to start dialysis, which I will be on rest of my life.

Patience is difficult when you are anxious, isn't it? I certainly can relate to that! You need to give the medications your doctor has chosen, a chance to work. Make sure that you are writing down questions you have for the next appointment. My doctor always looks at my notebook and asks me about anything listed there, what questions I have. He takes his time so I don't leave his office feeling like something was missed.

Happier days are ahead of you, definitely. Great way to approach it all, and life in general.
Ginger