Husband diagnosed with smothering myeloma and AI amyloidosis

Hi @beaudog - I'm so sorry to hear about these health struggles your husband is dealing with. Do you feel like you and your husband have support while you navigate this?

No, no really. Still awaiting tests before they definitely diagnose problems while my husband continues his weakness and out of breath times

Hi @beaudog, waiting for a diagnosis and treatment is always such a challenging time. I’m sure you’re both overwhelmed with stress of not knowing for sure what condition he has and what the treatments might be after the diagnosis.

I’m so glad you found Mayo Connect. You’ll find you’re never alone here. There are members who share your husband’s condition and I’ve found some discussions in our forum you might be interested in reading.

First, however, this is what Mayo Clinic shares about Cardiac Amyloidosis:
https://www.mayoclinic.org/departments-centers/cardiac-amyloidosis-clinic/overview/ovc-20508423
Below are 2 links to discussions in the Connect forum. The first link is regarding Cardiac Amyloidosis with other members such as @oldkarl who has several replies on the condition. If you read through all of the replies, you’ll find resources with more information.
https://connect.mayoclinic.org/discussion/amyloidosis-2/
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This discussion takes you to the blood cancer group where there are several conversations regarding Multiple Myeloma. It’s generally a slowly developing blood cancer and that’s why it’s called smoldering…it can take a long time to progress into ‘a fire’ that needs stamping out.
https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/
Because knowledge is power, there’s one more link you might find of helpful: Mayo Clinic’s informational page on Multiple Myeloma. https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

I know from experience how upsetting getting news like this can be. The best thing you can do is learn what you can about the conditions and then follow through with treatment. But once you find out the diagnosis for certain, you’ll have a lot more questions. Don’t hesitate to reach out because we’re always here to help out and offer encouragement.
How soon does your husband have his next tests?

@loribmt Lori, that was a terrific response you made to @beardog. As you know, we all learn from each other. We can pick up so much from others who share our multiple ailments and go through the same confusions each of us has. My education here started with my older sister who died of some form of myeloma years ago. I said 'Oh, I am so glad I don't have any of that stuff. ' WOW! Was I ever wrong! I now realize that I have spent most of my life tugging on the triggers (chemicals environmental contacts, extreme fatigue, extreme hot and cold, X-rays,) which now enliven all these ailments and threaten my health and sanity on a daily basis. Myelomas, diabetes, other cancers, cardiac, etc. Oh, well, life is too boring, anyway. oldkarl

Well, @oldkarl, you’ve literally written the book on the subject(s) so you’re kind of our resident guru for genetics, myelomas, cardiac issues, diabetes, health tips, etc. So, thank you for the complement, it really means a great deal coming from you. ☺️

If you’re like me, we didn’t start out planing on being an inspiration or ‘survival’ guide to others facing what we’ve gone through. But sometimes life leads us down paths we never imagined. If we can help someone over the bumps in their journey, enlighten them or even show there is life on the other side of a frightening diagnosis, then we’ve accomplished something precious…giving hope.

I don’t believe for one minute that your life is boring! 😃