Upgrade to ICD and Amyloidosis

I was upgraded from my Boston Scientific Dual Chamber Pacemaker to a Boston Scientific ICD on 9/12.  In July, I had a 54 second episode of sustained ventricular tachycardia.  I wore the Zoll LifeVest while they were figuring out what to do with me. That was not the most exciting time of my life, LOL!  Ultimately they did the surgery and, after trying for several hours, they were unable to do an ablation as they could not reproduce the issue so I woke up with the ICD.  

While I am thankful for this, I have some anxiety.  This thing is huge compared to my old pacemaker. And instead of pushing the pocket lower, my surgeon stuffed it in the original pocket and it pokes out on top.  I can feel the outline.  To make matters worse, he nicked the atrial lead when pulling out the pacemaker ventricular lead before placing my ICD ventricular lead. Instead of replacing the atrial lead, he did a repair.  So now I have a repaired lead inside my heart.  I am concerned that this patch will work itself free and get lodged somewhere.

He also noted that the left ventricular wall was a little thick and ordered a triple bone scan to check for amyloidosis.  Results showed "Visually, the heart does not demonstrate uptake greater than rib uptake. Semiquantitative visual grading of 99mTc PYP is grade 1. Grade 1 equals uptake less than rib uptake."  He was not concerned and his response was "I wanted to let you know the results of your test were okay." Unfortunately after reading online and speaking with a teladoc, I am very concerned because grade 1 isn't grade 0 and grade 2 and 3 are serious.  Like potential heart transplant serious.  The teladoc told me I need to fire my current doc and get the amyloidosis under control before it goes to grade 2 or 3.  No cure for it but they can at least do things to slow it down.

Oddly enough, I don't have anxiety that this thing could just thump me at any time.  I am on meds now so I feel as though the meds are my first line of defense.  I am sure I will get zapped one day but I'll cross that bridge when I get there.

I have an appointment tomorrow with a new EP to get her take on this whole thing.  I also have an appointment with an Amyloidosis specialist tomorrow as well.

Is there anyone else out there with any similar experiences?   Like repaired lead?  Amyloidosis?

 

2 Comments

I cannot help much, but......

by Good Dog - 2024-11-14 07:54:34

I'll begin by apologizing for not being able to offer the experience with your specific issues. I have had my PM for 38 years and have my own, but different issues to deal with and worry about. I just want you to know that we all worry and stress much more in the beginning when we discover problems that we do not fully understand and/or have good solid solutions to give us a little comfort. Though, you seem to be handling this very well. I am sure you will get some good feedback here from someone that has had a similar experience as yours. Please be patient. I commend you for getting out there and doing your research in an effort to help yourself. I am a big believer that we have to be our own strongest advocates for the care that we desire. If I were you I'd take the advice of that Teledoc and fire your Doc. It would be a good idea to do the research to find the best hospital and Doc that has positive experience with your specific problems. It is likely that you will get some good leads here. I think that even if you have to travel and have the means, there are some great hospital systems (i.e. Cleveland Clinic, Mayo Clinic, etc.) and Docs out there. You may have one in your backyard. You are still young (I have 20 years on you) and are addressing these issues very early-on. So you are in a good place to get the care you need to go on and live a long life. Let's see what others have to offer here.

I wish you the very best!

Sincerely,

Dave 

Thank you for the support Good Dog

by Emmitt - 2024-11-14 22:55:54

I appreciate your response.  Yes, you definitely have to advocate for yourself.  

I followed that advice.  Fired my doc today and transferred my care to UCHealth Colorado.  They've also got a good amyloidosis department.  Come to find out, my previous care facility failed to test me correctly for sarcoidosis and amyloidosis and I have to redo those tests.  Ugh... More nuclear medicine.  Makes me so darn mad because of the time invested, more money, more chemicals in my body, grrrrrr.....  And the new EP may want to go in and try another ablation.  I'm tempted to recommend they do that and take a sample from my heart for a biopsy instead of more chemicals and scans.

The good news is that I found out the repair on my atrial lead is not inside my heart or the artery.  It is in the pocket near the generator.  That makes a heck of a lot more sense to me.  So at least some good news today!  I'll take it!

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