Cardiac Amyloidosis

@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

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?

@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

My husband has been suffering of weakness in whole body, edema in legs dizziness, low heart rate, tingling of hands & feet, palpitations since Oct 2022. He was prescribed with diuretics which relieved his edema. After a heart cath on both sides the drs diagnosed him with Right heart failure and stiffness on his Left Ventricle. All lab tests were within normal range. EKG’s showed extra beats. CT Scans & MRI’s showed nothing. Still with no answers to his symptoms we decided to come to Mayo Clinic where he was diagnosed with Cardiac Amyloidosis as the cause of all his symptoms. He had a genetic test which we are waiting for results. Has anyone being diagnosed with Cardiac Amyloidosis?

@naiviv, in this discussion about cardiac amyloidosis you can connect with @danab and @jeannepasquinucci.

Here's another discussion of the same name with some older, yet helpful posts by @jhoffmanj
- Cardiac Amyloidosis https://connect.mayoclinic.org/discussion/amyloidosis-2/

Also see
- Successful treatment of cardiac amyloidosis depends on early diagnosis https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/successful-treatment-of-cardiac-amyloidosis-depends-on-early-diagnosis/

A biopsy of heart tissue said I have amyloidosis but the nuclear imaging test said I don't. Tamafidis seems to be hardly effective.

Welcome to Mayo Connect, @bobbyknik. Amyloidosis occurs when the body produces unusual proteins that bind together to form amyloids. These can collect in various organs of the body, including the heart. This is referred to as Cardiac Amyloidosis and it can be quite serious as it can thicken the heart wall and disrupt heart function. It makes it harder for the heart to fill with blood between heartbeats.

It sounds like you’re getting some conflicted reports with seeing the biopsy vs the imaging? Since the biopsy of your heart was taken directly from the organ involved that would be rather telling that there is amyloid involvement.
What has your doctor discussed with you about your treatment and the testing? What symptoms are you having?

Hello @bobbyknik. I combined your discussion with an existing discussion titled, "Cardiac Amyloidosis" - https://connect.mayoclinic.org/discussion/cardiac-amyloidosis-1/ to meet members like @manning2000, @naiviv, @danab, @soonerfan and @jeannepasquinucci.

@bobbyknik, like @loribmt mentioned, which test did your provider think was more accurate?

After having my aorta fixed at Mass General Hospital., I can now walk up ten flights of stairs without being out of breath. I can walk 2 miles. I'm not really having any fatigue symptoms. They biopsy said I have it. the nuclear test says I don't. It seems the tamafidis is of little value when you consider the cost. take a look at the manufacturers advertisement. I made a joke that they should prescribe the placebo for me.

Hi Bobby, I have not heard of that condition but have learned that when it comes to the heart there are many specialist. I would plan on at my next follow up ask plenty of questions, I know when I was going thru a blood issue the Doctors at Mayo were very patient to explain the issue with me in layman's terms. As they say knowledge is power and at least for me it was a relief to understand a situation that I was confused about.