Might be time...
I have complete congenital heart block, and have yet to receive a pacemaker. I had a CT scan recently of my stomach (for an unrelated issue), but the report came back reading that my liver was enlarged as a result of chronic passive liver congestion most likely caused by right heart failure. Well, the tech reading the report did not know about my heart condition. I was referred to a cardiologist (I recently moved and did not have a cardiologist in my new city) and had an echo performed. The echo showed no right heart failure, so they are thinking the liver enlargement is a result of the heart block. The cardio stated that he did not know for sure, but that is the only thing wrong with my heart and this liver issue is only caused by heart related conditions (usually heart failure). He said that there is no textbook answer for my case as most people do not live in complete heart block for 29 years. He is referring me to an electrophysiologist for a second opinion, but my fear is that I may be up for a pacemaker surgery in the near future. A couple of questions for all of you:
1) Have any of you ever had any liver issues with complete heart block?
2) I have read from some of your posts that some of you do not have any external signs that you have a pacemaker. I have seen it referred to as "behind the breast" or sub-pectoral implants. I have also read that there is a way to put the pacemaker in through the side so the scar is in your armpit. Given that I am not necessarily in an emergency situation, I was wondering what the official medical name is for the "hidden pacemaker implant" as I want to make sure whoever does the implant will work with me in that area.
3) My HR is usally in the mid-40s throughout the day, and I don’t feel like I am unusually tired. Is it likely that I will have more energy as a result of the implant (even though I feel fine now)?
Thanks in advance for your help!
3 Comments
Thanks...
by KJ7 - 2009-06-04 10:06:52
Thanks Tracey for the input. My appointment is on the 11th so will see what the EP has to say.
me too
by Hot Heart - 2009-06-07 03:06:22
Docs think i had congenital heart block diagnosed at 55. Who knows!?!? But ive had my pm now for 7 months and wouldnt like to not have it now knowing what i know.
Take care HH
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Member Quotes
I am just grateful to God that I lived long enough to have my ICD put in. So many people are not as lucky as us; even though we sometimes don't feel lucky.
been there
by Tracey_E - 2009-06-03 07:06:08
Wow, you sound a lot like me! I was 27 when I got my first pm for CCHB, and was told the same thing about being very old to not have the pm yet. I'm 42 and on my 4th device now and I feel terrific. If I'd known how good I would feel and how easy the surgery would be, I would have done it years earlier.
1. I never had liver problems but I had a lot of other small things going on, every time I had bloodwork done something came back irregular. Your hr is 40's but I would be willing to bet your atrial rate is considerably higher than that, mine was always 80's. When your heart wants to go faster but your pulse stays low, your organs are being starved of oxygen. It's hard on your body.
My hr was mid-40's also. I waited until I was symptomatic to get it- that was way too late! Before I knew it, my hr dropped to the 20's and I almost died, ended up in emergency surgery. Definitely not the easy way to go about it! The time to get it is before you need it. They routinely give them to babies born with CCHB now so they don't have any problems related to a low hr, or get into a situation with a dangerously low hr.
2. It's called sub-mammary and it's what I have. LOVE IT!!!! The scar isn't near my armpit, but on my side about where the underwire of my bra hits. There's an itty bitty (less than an inch and very thin) scar on my chest where they put the leads in, it only shows with a really low cut top and even then it blends in enough that I doubt anyone notices it. The pm itself is buried behind the breast, I can barely feel the edges if I poke around looking for it.
Healing time is a bit longer than usual because they have to tunnel in to bury it, and they did it under general anesthesia (usually they do local or conscious sedation). I was sore for a few weeks but I never took anything stronger than tylenol after I got home. You can only see the scar if i wear a string bikini. I don't have a lump, seatbelts never rub, I don't have discomfort lifting weights, and I can easily carry a heavy backpack. I can truly forget I have it.
Most doctors have never done it this way. It's not unheard of so your surgeon should be able to find out about it easily, but a lot of doctors go an entire career without having a patient our age so it just doesn't come up. Some women here have asked their doctor about doing it this way and they expressed concern about long term problems having it more or less in the breast, but I nursed two babies, have had numerous mammograms all with no problems.
Another option is to put it on the chest but just a little lower and a little deeper than usual, so it's more or less behind your bra but not totally buried like mine is. I prefer it buried so it's not in muscle, which can get agitated when you work out.
3. Your definition of "fine" may change :o) My hr stayed in the 80's the first year after I got my pm (it eventually slowed down) so I was getting literally twice the oxygen. My energy level went through the roof! Seriously. I was begging to take a walk when I was still in the recovery room, drove the nurses nuts when they said I had to stay on bedrest the first night. A month later, I was working out twice a day just to burn off some energy. I had stamina for things I'd never been able to consider doing before.