Getting my 15th pacemaker

Hi all, I am new to this group and am so thankful I found it. Mine is a long story (I won't bore you with the whole thing) but it comes down to this: I am getting my 15th nsinc biventricular PM on Wednesday. I have been thru ablation therapy 3 times, on the transplant list for nearly 2 years, went blind from taking Coreg (retina specialist offered to get me a "dog"). I have 4 leads (each chamber). My last pacer lasted 7 months, the most I have ever gotten out of a pm is 12 months. I have super ventricular tach and restrictive cardiomyopathy. I am wondering if anyone is going thru pacers this fast. My voltage (upper) is at 7.5 and lower chambers are at 5. I am getting concerned my only choice is going to go back not the transplant list. I have a Medtronic PM. Thanks for taking the time to read, just wanting to know if there is anyone else in my boat? I am so thankful for your response.

4 Comments

Nine months to see again

by Shortcake - 2012-04-02 11:04:00

Thanks for the reply, it actually took me overnight to go blind and nine months to get back some eye sight. I still own 20 pairs of glasses. I take 8 different blood pressure mess and if I take a lot of labetalol the sight gets bad. The specialist said the Coreg caused damage to the optic nerve. It has been a crazy ride. Once they left a sponge in the pacer and had to replace it a month later when I had ecoli growing in my chest wall. I can't really complain though when I started this I was in a wheel chair on oxygen with an EF of 25-30, in the hospital waiting on a transplant, the biventricular truly saved me but I am getting worried now because the pacer are lasting less and less time. I would like to know if anyone is going thru this too. Thanks again for reading and answering. Seems like a great site.

Gosh, what a history

by janetinak - 2012-04-02 11:04:25

I am so sorry you have to go thru this & continue to have too.I have nothing to offer except my thoughts & good vibes. I'm sure you'll get a lot of good advice here. Are you still blind from the medication or did that get better when you stopped?


Thinking of you,


Janet

sure glad your sight got better

by janetinak - 2012-04-03 01:04:56

& wish I could offer some advice but except for my 1st PM which lasted 2.5 yrs (lead problem I think) I have had a pretty simple situation. Do you know about the "Search" button on top of this page? You can put topics in there & pull up responses from past while you wait for some to your post.

Janet

New leads?

by golden_snitch - 2012-04-03 02:04:47

Hi!

Has there been any talk about getting new leads placed? There seems to be lots of scar tissue where the leads are attached to your heart muscle which is the reason why the voltage needs to be that high; and with such a high voltage there is no pacer that will last long. A friend of mine, also CHD-survivor (had Fontan surgery), had epicardial pacer leads, and the same thing happened to him: he ended up needing a voltage around 7-8, and the battery was drained quickly. He had a new set of leads put in. Everything's been fine since then.
If there is no more room for new leads in your veins, you could get epicardial leads. It is a bigger surgery than "normal" leads, but if the alternative is having pacer surgery every couple of months, I'd rather take the epicardial leads.

Best wishes
Inga

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