[MollymooParticipant]

At my Husbands last check up and treatment it was found there had been a sudden change in his heart function and he was transfererd to a cardiology unit for further tests. The Doctor told us that Pathalogical protein was being deposited in his heart and he told me the name of the condition but I couldn’t understand what he said as he is Bulgarian and also couldn’t read the notes.

We have just been to see his GP to let him know that we are returning to the UK in 2 weeks time and I asked him to write the name down in English. I have just come home and googled it and am devestated with the prognosis. I feel that all hope is lost now and that he will die very soon. It is such a shame as he is in vg partial remission and was doing so well.I havn’t mentioned it to him as I don’t want him to lose hope. Has anyone else had this heart condition and if so, how are you doing.

[eveParticipant]

Hi Molly

There are a lot of people in the position as your husband,it does depend on how his heart is affected by it. The Royal Free Hospital in London is the only hospital who deals with it,but they liaison with local hospital,it is rare 600 cases a year.

I cannot pretend it not serious and tell you not to worry!!,but please get in touch with Ellen or Maggie,even if it’s only by E Mail I am sure she can give you some peace of mind,there are people on here who are doing well and some have not,so until the condition of his heart is completely known you are in the dark.

I hope by boosting this post up,people see it and reply,and give you a much needed boost,you could try going into Amyloid Support Site or go into the library on here,plus there are Videos on here to watch. Love Eve

[MollymooParticipant]

Eve we were in Plovdiv on Tuesday for his last dose of chemo here in Bulgaria, I spoke to his Oncologist about my fears and she told me that without a biopsy they couldn’t say 100% that this was Amyloidosis that was causing his heart to thicken. The cardiologist has a very strong suspition and no more. She said that it could be a number of other reasons that could be causing the changes, the swine flu that he had at the time of testing being one of them. She has told me not to worry until we know for sure but assured me that he was doing great with the Myeloma. We will wait until we get back to the UK and let them investigate further. I wish I could take it all in my stride like Eric does instead of being such a drama queen and emotional wreck.
Thanks agian for your help Eve. xxxx

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