in a bit of a dark tunnel

hey, im nicola, age 20, medical student been on here before after getting pacemaker one on the 12th august.
unfortunately im in a pretty bad time at the minute, looking for pacemaker three.
i really dont know if any of you guys can relate, but this is my story.
Pacemaker 1 on the 12th august was for 4 years of collapsing with vt, bradycardia and neurocardiogenic syncope. longer operation than expected and was in lots of pain, more so than anyone else id spoken to. it was the new medtronic mri scan safe pacemakers. my pain didnt ease for weeks after the op and became pretty severe as i was working (co-incidently as a nurse in cardiology) and was sent down to a&e.
as im quite thin, the pacemaker was not being held well and had caused quite serious nerve damage and extreme pain. so on 21st october friday week ago i got pacemaker number 2! much smaller which wouldnt last as long but fingers crossed no pain. the operation was terrible, so much so my cardiologist vowed never to operate on me unless i was under general again.
less than a week later on saturday passed my stitched burst and i was taken into a&e with severe infection in my new pacemaker. monday i saw my cardiologist and my wound was still leaking, and today after severe pain i was taken back into a&e.
one solution apparently, new pacemaker number 3. im waiting for emergency surgery and waiting for an anethetist to be available at the same time as my cardiologist to put me under general.
i feel iv been drawn all the wrong straws and just wondered if anyone could share similar experiences. one good point in all this. 12 weeks of not collapsing, the longest i have gone in 4 years. but the past 3 months have been a nightmare and iv lost all movement in my right shoulder from the severe pain which will require intense physiotherapy.
hospital is my second home i guess. i remember after pacemaker one coming on here and the support really lifted my spirits. your all a great team out there of people who can understand what has gone on in each of our lives.
im just hoping i can get a normal life back.
thanks for reading,
nicola

7 Comments

Ridiculous

by ElectricFrank - 2011-11-03 02:11:13

Your experience is an example of pure incompetence. Were they using you to practice on or what?

hope things are resolved.

frank

Hang In There!

by livinlife - 2011-11-03 04:11:55

Poor you Nicola!
It sounds like you have been through an awful time, but you need to stay positive...things will get better, it just seems hard to think so at the moment.
I too had a very traumatic experience having my pacemaker inserted, as I am relatively young, fit & slim.
The pocket that the cardiologist had to make in my chest muscle wall was the worst bit & I told him, I definitely want to be 'out' next time.
I too seemed to be alone in this experience & sometimes you start to wonder if they think you are 'crazy' & a whinger. You aren't.
It takes months to come to terms with what has happened, mentally. You also have the challenge of mending physically too.
Please hang in there. You have friends here that you can talk to anytime.
Keep in touch xx

Stay strong

by jane32 - 2011-11-03 07:11:05

That is probably hard at the moment when you are having such a rough time. I thought it was bad enough getting one pm implanted, couldn't imagine having to have a third one. Once you recover from the next surgery you will start to feel the benefits of having pm, and I am sure you will find it worth it in the long run. It does seem so unfair that you have had so much trouble, I hope they take much better care of you this time. Keep in touch.

Regards Jane

You will get through it

by Lottie - 2011-11-03 07:11:44

Hey Nicola,
I certainly haven't had as bad an experience as you but have definitely had to deal with similar emotions..
I had my original pacemaker implanted 10 years ago for Neurocardiogenic Syncope. I was only 15 at the time, and therefore was never really given much information about the entire situation. It was mostly discussed with my parents and I simply went along with whatever was recommended to them.. I never had any issues, and I think being quite young I was a lot more resilient (or simply more ignorant). I was quite naive to the whole situation and therefore just got on with life.

I recently however discovered that things don't always go to plan, and had a few complications I wasn't even aware were a possibility.. Again I think this is due to the fact I never truly came to terms with my situation. I am actually a nurse, but never made the effort to get to know the details of my own medical issues. I imagine that was because I wasn't prepared to deal with them.

Just before christmas last year it was found that my ventricular lead was no longer functioning and therefore I needed it replaced. I knew I was coming up to needing a battery replacement, but that was the only surgery I ever envisioned i'd need to undergo with the PM. I was never told that I could face problems with lead malfunctions/dislodgment's etc
I went in the week before Xmas to have a new lead inserted and a new PM also. The unexpected halt in life was something I really struggled with.
I (quite stupidly) went back to work on Christmas day (what was I thinking?? The only time I would ever get christmas off and I wanted to go to work? They must have damaged some brain cells during the surgery) but was obviously quite restricted in what I could do. Thankfully I work with teeny tiny babies and they aren't a problem to lift!

Exactly 2 weeks to the day since the first lead replacement (was SO excited to be able to drive!) I ended up in Emergency at work due to chest pain.. I had felt slightly off since the surgery, having odd feelings like someone was flicking the inside of my heart every time I rolled onto my left side. But being the good nurse I am, chose to ignore every symptom I knew was not normal. Somehow the replacement lead was also not working, and had not been working since 1-2 days following the surgery. (Needless to say I was not interested in going back to that surgeon)..
I therefore went back in for another lead replacement the following day. They were able to take out the dodgey lead as it had only been in for 2 weeks (most bizarre/awful feeling of someone tugging your insides out) but left in the original ventricular lead from 2001.

Although I was under local this time, and I recovered 10 times better from this anaesthetic, the recovery process thereafter was torture. Emotionally, I had never dealt with the original PM implantation, and I literally felt like I was having to accept my condition for the first time.
Unable to work, drive, and simply feel like my normal active self was extremely difficult to deal with. I was in far more pain than the previous surgeries. My scar had now been accessed twice in a 2 week period.
I also am not a large person, and therefore the lack of available space for the PM has always proved to be an issue. It is VERY obvious, and the entire outline of the PM is highly visible.
You can actually now see one of the leads tracking away from the PM under my skin.. We however can't tell if this is a functioning lead, or the capped dodgey lead.

It took me a long time to feel like I was making any progress at all with my recovery. My movement in my right arm (I am also right handed, thanks you bastard for putting it on my dominant side) is a lot more restricted, and i've found that because I wasn't able to lift my arm for that extended period, the muscles have tightened. The position this PM was put in has been far more inconvenient. I had always had issues with clothing, especially bras, but now so more than ever.
It has been almost 12 months, and only in the last couple of months have I found myself starting to have moments when I forget it is there. I used to have this in reverse, where there were only a few moments I remembered I even had a PM.

Physically I am feeling 100% better. Emotionally I am still struggling at times. I have never spoken to anyone before. I would have to say this post is the most information anyone has ever gotten out of me about the entire experience.

I will tell you however, as of September, I have had my PM for 10 years, and not one sycnope episode since its implantation!
I do get symptoms occasionally, but the fact I have been able to lead an almost completely normal life is almost worth all the bullsh*t that we all have to deal with in the process..!

Without it, I wouldn't be able to lead the life I now have.. I wouldn't have been able to drive, and I would never have made it into Nursing.. It has been a godsend to me, and as much as there are times you may feel the world is crumbling on top of you, the long term benefits far outweigh these intermittant struggles.

I am so grateful I've had the chance to have treatment.. My NCS went undiagnosed for about 7+ years, and it was always a constant worry as to when and where my next episode would occur.

Try and focus more on that feeling that is so evident when you talk about your 12 weeks syncope free, and just think that when all these issues finally get resolved, you too may be looking at 10 years without an episode.

I really hope everything works out for you. I hope you are able to get back to your studies soon, and become one of the medical professionals that really makes a difference..

Feel your pain

by wheelea - 2011-11-04 01:11:45

Nicola:

I can relate to your struggles. Although I am only on PM number 2, I am relatively young (28) and also in the medical field. I graduated medical school in 2009 and then went on to neurosurgery residency which was rudely interrupted by sick sinus syndrome. I had my first pacemaker removed due to infection. Had a wound vac and picc line for 4 weeks. The wound vac was terribly painful.

All I can say is I have had to fight tooth and nail for my health. I am thankful that I am in the medical profession because I have had several cardiologist who gave me very poor recommendations which could have greatly harmed me. I know what it feels like for the hospital to be your second home. In the last 10 months I have spent approx 40 days in the hospital.

I just scheduled PM number 2 today which was a huge step towards recovery for me. I too strive for a normal life. I want to drive, work, feel good enough to want to leave the house. So don't give up on your normal life, and I won't either.

keeping my fingers crossed for us both,
Anne-Marie

many thanks

by ncrawford - 2011-11-04 02:11:54

thank you all so much for your comments and support.
it makes such a difference to have people in the same boat as me and can sympathise. it is only places like this were people can meet together and share our experiences and i feel like it is a life saver.
Lottie, thank you so much for your story. It really made me sympathise with you but also laugh and the way you've put it. Its great to see how well you've come through everything.
Everybody always says to me how amazed they are at how well i take everything, how i seem to cope so well and always look on the bright side. i know that is the best way to be but at the same time there is still a pressure to always have a smile on my face and seem as though none of this is getting me down. by having a reputation of coping well it rele needs to be maintained.
sometimes its good to come onto sites like this and have my own personal rant. i dont like to complain at my cardiologist and call it incompetent because id like to hope as i become a doctor similarly there would be no decision made unless it was in the best interest of the patient.
thanks for all your support and comments. it really does give a lift to my day :)

Update

by Lottie - 2011-11-08 11:11:22

Just wondering how things are going Nicola?

Has PM # 3 been a success?

You know you're wired when...

You prefer rechargeable batteries.

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