Cardiac Amyloidosis

Posted by jeannepasquinucci @jeannepasquinucci, Mar 9 1:03pm

My husband has been diagnosed with Cardiac Amyloidosis. I would like to connect with others that may have the same condition and also discuss what medications they are taking. I found the recent podcast very helpful.

@jeannepasquinucci Hi and welcome, I'm didn't have this disease prior to Heart Transplant and I myself looked it up to see for myself. I can relate to the wanting to share with others as we all here on Connect have become a virtual support community. I am familiar with the symptoms I found for this condition and in some ways had a similar condition of a thickening of the Heart with episodes of Fatigue and shortness of breath. I see that one procedure your Husband may have or already has had is something I had a few of during my transplant journey which is a Heart Biopsy. So as you learn more im available for possible help with some aspects he may go thru.
Have a Blessed Day
Dana

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@danab

@jeannepasquinucci Hi and welcome, I'm didn't have this disease prior to Heart Transplant and I myself looked it up to see for myself. I can relate to the wanting to share with others as we all here on Connect have become a virtual support community. I am familiar with the symptoms I found for this condition and in some ways had a similar condition of a thickening of the Heart with episodes of Fatigue and shortness of breath. I see that one procedure your Husband may have or already has had is something I had a few of during my transplant journey which is a Heart Biopsy. So as you learn more im available for possible help with some aspects he may go thru.
Have a Blessed Day
Dana

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Thank you Dana for answering my post. My husband is seeing the cardiologist tomorrow. They will be discussing the heart biopsy. He has a wireless pacemaker and because of that when they did the MRI they didn’t possibly get a true reading. He is on a medication called Vyndamax. It’s fairly new on the market. Pfizer has no side effects listed as it’s so new. My husband complains of terrible leg pains. He thinks maybe arthritis has developed. He never had these leg pains before taking the medication. Have you ever heard of this medication?

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@jeannepasquinucci No sorry I haven't been on that one. My main issues were Heart rhythm in nature. I had a condition called Ventricular Tachacardia which was brought on by a thickening of the heart. I would have episodes of a really fast heart rate more like a flutter where blood flow would in essence stop hence the reason for shortness of breath. I too had a pacemaker which would try and treat the heart rate by pacing it to slow it down. And if that didn't work it was able to produce a shock with a built in defibrillator. So the meds I was on we're to regulate the heart rate or anti-arrhythmia meds and beta-blockers. My enlarged heart thickening was not treatable which untimely led to a transplant.

So for your husband it's sounds promising that they do have a treatment for the condition. Now for the leg pains, I still get those on occasions due to what I think is a statin im on. Maybe it's similar in that mine will be like a cramp in my. lower leg muscle mostly early morning while im sleeping. It can be very intense and im glad it never lasts long. I find as soon as I put weight on it subsides within a few seconds. I thank God it works because I couldn't take that kind of pain very long. Does it seem to be at certain times. that the pain is noticed?

That's great about the visit to the Doctor tomorrow, I'll suggest one thing. on the biopsy is mine was done to check the transplanted Heart for rejection and we're done the first 6 months post-transplant so I was having them often. It's done 2 ways either thru the neck which is preferred as the recovery is quicker or thru the groin which requires 3-6 hours or recovery lying flat on his back. It's a clotting issue to ensure there's no bleeding after the procedure.
The procedure itself lasts only. about 15 minutes depending. on the number of samples. I was awake during the procedure and I always found the worst part was the initial lanicane injection to numb the area. So I was given a cream to apply beforehand to my neck which I found helped. I would apply it about an hour before the time of the procedure to allow for the numbing to take effect and last until the lanicane is applied. Then the other strange sensation was when they were inside my heart my heart would kinda jump a little like hey I didn't like you guys in there 😆. It wasn't painful or anything just noticeable. They would always tell me when they were im there and I usually responded I know my Heart is not happy about it. All in fun tho. It's an interesting experience to be awake while the staff is doing there thing. Being I was being treated at a Mayo Clinic they use a team approach and so I had a team of 5 Cardiologist that took turned seeing me and what was awesome is they got together often to talk about all the patients and statigies in treatments. Anyway there was a friendly competition between them on who were the favoried ones for biopsy. Some were better than others at least for me on the initial lanicane numbing. Nothing again serious just slight differences. Of the 5 I had I had 2 I preferred based on the lanicane injection, but it was always a friendly experience. Hopefully your situation will only require once.
Well lots to think about please let us know how it goes and im here for more questions.
Dana

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