Support for teenager

I posted this 5 years ago:

"Our 11 year old daughter has double inlet left ventricle with the Fontan repair and complete heart block. She got her first pacemaker at age 5, and had surgery in '08 (atrial lead + new pacemaker); '09 (ventricular lead replacement) and again just on 8/9/10 to implant her third pacemaker and another new ventricular lead. Post-op visit indicated that her threshold was 4, and they can't double that to set the preferred safety margin of 8 -- pacemaker only goes to 7.5. Battery life will be severely reduced since the threshold must be set so high. Dr. says probably because of scar tissue. Probably looking at another surgery way sooner than we care to think about...

Anybody out there with a similar experience with their child? This being the third surgery in three years, only to hear that it was not the best outcome the doctors had hoped for.... well, we're at a point where we're feeling a little alone in all of this. Do not know any other child with a pacemaker , let alone one who has needed so many revisions. Just this time around, we also entered some unchartered waters in that the social emotional piece of a serious heart defect/pacemaker is impacting our daughter more. At times, I feel so helpless because I know I can no longer take away the reality of this situation for her."

Fast forward to 2016: We went on to have yet another pacer revision right away in 2011, and now at age 16 she is experiencing some more complications. She has been having episodes of A-fib for a couple of years. In Oct 2015, she had an episode involving left arm numbness that was diagnosed as "being in the realm of a mini stroke", and in Jan. she had a sudden onset of dizziness and tinnitus that also resulted in a sudden high frequency sensorineural loss in her L ear. Most recent symptoms are of an unknown etiology. Medical team does not know if this is inner ear related, tumor, or mini stroke activity. Just wondering any other parents have had a similar journey. Since she has had 13 surgeries in 16 years - her life has been overshadowed by all of this. So much of what a typical girl gets to enjoy in life seems like it is constantly interrupted or somehow different for her.

Thanks in advance for any input.

Robin Kaye

4 Comments

Fontan/pacemakers

by Pacemum - 2016-02-13 08:02:58

That's a lot of surgeries. I have no experience of Fontan circulation which is complex. If you are on Facebook I would point you in the direction of a UK support group patches which has quite a few members with Fontan circulation. As few of which have pacemakers. I have not heard of anyone needing so many pacemaker operations but there may be someone.

Thank you

by Robin Kaye - 2016-02-13 10:02:27

Grateful for the suggestion.

also on FB

by Tracey_E - 2016-02-13 11:02:22

There is a page called Young Pacemaker Patients. There are a lot of teens there paced since birth, and their parents.

Hello

by curtm - 2016-03-18 06:03:36

Hello Robin,

I am very sorry to learn of your daughter's situation. I am 24 years old and was diagnosed at birth with 3rd-degree congenital heart-block. I have had 5 pacemaker-related surgeries. I was implanted with my first pacemaker at 8 days old, in 1992. I had replacements in 1994 (age 2 -- full replacement [torn lead]) 2001 (age 9 -- 3rd grade -- full replacement), 2007 (age 14 -- 9th grade -- generator replacement) and most recently in January of this year (2016 -- post-university -- generator replacement). I have been very fortunate to have not had many complications or issues regarding my pacemaker or these surgeries.

I do not remember my first two surgeries and recoveries (infant/toddler) but I have been assured by my parents that it was extremely unpleasant for all involved. Someone told my parents that I was the youngest (at the time) at 8 days to have a pacemaker implanted, but I’ve never been able to verify that claim and I doubt it’s true. I think I was in the hospital for 3 months before I came home for the first time. The toddler surgery apparently wasn’t as bad but I was able to express my pain and fear verbally and that was upsetting to my mother especially.

In 3rd grade I got taken out of school one afternoon and told by my mother and the principal that I was going to be needing pacemaker surgery immediately. I started crying, left school, and went straight to the hospital for pre-op tests. The surgery was 2 days later and I was in the hospital for 1 week. I was in the pediatric ICU and I remember it vividly, it was a very difficult experience not only because of my own pain but because I was probably the most medically stable individual in my room at the time and several of the patients had passed during my stay. Many of the residents were infants with terrified and deeply saddened parents. My classmates at school (only 50 children in each year – small school) all were aware I was in the hospital, and made me “Get Well Soon” cards; that made it easier. After I was released, it took about 6-8 weeks for me to fully recover (no soreness), with some general issues regarding pacing settings for the first month. I never had the same range of motion with my shoulder after, and it was my most difficult surgery that I can recall, without doubt.

My experience in 9th grade was mostly easier. When my pacemaker settings changed automatically to “power-saver mode” (do not know correct terminology here) I felt very ill. I was extremely lethargic, nauseous, and could not sleep. I remembered something similar had happened with my 3rd grade experience (although much less severe), so I did jumping jacks, took my pulse, and when it never changed from 60bpm, then I knew. I had the surgery 3 days later, spent about 20 hours in the hospital, and was back at school within 3 days, albeit still on prescribed opiate pain killers.

My most recent surgery (Jan. 2016) was the first I was a legal adult and the first I handled the surgical consult and pre-op procedures without my parents (they were involved and supportive but not making decisions). I was due for a generator replacement and was also informed by the surgeon that one of my leads is only “partially functional” (70% efficacy). He explained that a lead replacement, especially for me (I have dead leads left inside from my surgeries as an infant/toddler) would be somewhat risky, with around a 1:200 mortality rate. He also explained that the lead, while only “partially functional”, was still working well enough and that a replacement was not completely necessary at this point. We opted to only replace the generator and leave the lead, choosing to deal with the lead if/when it fails to a critical degree. He explained that the pacemaker technology is vastly improving (something I can attest to personally after having experienced the procedures/devices/check-ups in 3 different decades) and that there is a new “bullet” pacemaker in development that requires a minimally invasive endoscopic procedure (through the groin) and is leadless (the “bullet” is placed directly on the heart muscle via endoscope). Basically, he was confident that the technology to bypass the dangerous lead replacement procedure would come before my partially functional lead critically failed.

The surgery was over in less than 2 hours and I left the hospital 2 hours after that. I was very sore for 3 days and now (2 months later) am feeling great. No issues at all so far, even with the partially functional lead.

I do not habitually follow the specific technological developments in pacemaker technology because I’d rather not really think about having a pacemaker too often. It is a fully integrated part of my life and of myself and for me it is good enough to think about it only occasionally or when I am forced to. But when I do think about it, especially in regards to my future, I am hopeful and encouraged by the possible technology that is being developed. My most recent surgeon said that my next pacemaker might be the last one that I’ll ever have to get. I don’t know if it’s true, but it might be, and it made me happy to think about that.

There are a few things that I can’t do because of my pacemaker and there are some times, especially when I’ve been in poor health, that I’ve felt my life was defined by it. But, I’m here, I’m alive, and to me that is what is most important. I am fully dependent on my device and have been for my entire life; it has afforded me a quality of life that would not have been possible for without it. For that, I am grateful.

My experience has been objectively easier, but at least to some degree I can understand. I felt like making an account and a comment because I wanted you to be aware of at least one other young person who has dealt with pacemakers during their childhood and adolescence. I am certain she will get through this all and move on to a happy and healthy life, because I did, and she is obviously much stronger than me. Having a supportive and loving family, as she does, helps make things a bit easier I’d imagine. Someday, soon, you’ll all be able to look back on this time in full health, and you’ll all be better, stronger people for it. I’m sure you already are. I wish you, your daughter, and your family all the best.

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