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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (772)

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@becky1024

Colleen, thanks for the link. I did a lot of reading and realized one sad fact. Like my oncologist already mentioned to me, my birth heart defect is the key to my death. It’s an enigma, it can’t be repaired without being mapped out by the special $25,000 implanted loop heart recorder. Without that information, the procedure to destroy the short circuit causing my heart attacks cannot be performed. With my Amyloidosis hanging in the balance, if they deliberately trigger Pulseless Ventricular Tachycardia to map out the short circuit, that could trigger a major fatal heart attack killing me. So I’m once again between a rock and a hard place. Unfortunately, I’ve been in that spot more than a few times. So thanks for giving me a resource to continue to read. I hope there are more posts closer than 2016 to check out.

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Replies to "Colleen, thanks for the link. I did a lot of reading and realized one sad fact...."

Hi Becky, if you go to this site again that @colleenyoung posted, you’ll see a box under the discussion which says, Oldest to Newest. Click on there and you’ll have the option to reverse that to the newest discussions there are some current conversations regarding amyloidosis. The oldest postings were from 2016.

Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what

I still think it was a good idea that you contacted your oncologist. At least you know she has been considering your case and your options for treatment and you gained some more insight as to her concerns for you.
We really never know what curveball life is going to toss our way. I guess it’s our job to either duck, jump, bunt or hit that sucker head on, eh?