A dear friend of mine, whom I met via the blog many years ago, has been dealing with an unusual and very serious condition for several months. She asked if she could post an appeal on the blog to see if anybody else has had a similar experience or can help her in any way. If you have any information that might be useful to Clare in this very difficult moment, please let me know, or leave a comment on this post. If you want your comment to remain private, I will definitely respect your wish and send it only to Clare.
Thank you very much.
Here is what she wrote:
I’ve had smouldering Myeloma for 13 years without treatment.
Over the past year and a half I have become more and more out of breath. I thought it was just Asthma. I had an echocardiogram last March which looked normal. Suddenly, in July, my legs swelled up, and I felt even more out of breath and tired. My cardiologist is concluding that I must have Protein Amyloid deposits in my heart from the Myeloma. They couldn’t see any on a heart MRI, however, so I have a heart biopsy coming up to be 100% sure.
I just wonder if anyone has AL Myeloma or any experience of Amyloids from Myeloma.
It would be great to hear from you.