Awaiting first pacemaker op

• by Anxious Newby
• 2013-06-03 10:06:01
• General Posting
• 1365 views
• 5 comments

Dear all,
I am writing to seek some advice as I am a 27 year old who is due to have a pacemaker fitted possibly this week.
Here's my story:
I have always known that I had a slow pulse rate but never thought anything of it. At the age of 23 I fainted twice before work in the space of a month. I had never fainted before in my life so I went to the doctor about it and was subsequently sent for a resting ECG, 24 hour monitor, Echocardiogram and tilt test. I fainted on the tilt test and this, combined with the ECG's lead to a diagnosis of 1st degree heart block. Nothing to worry about I thought.

Nearly 5 years later I became ill with a chest infection and when at the doctors they discovered that my pulse was around 43bpm. I had a follow up ECG on the 17th May with the intention of fitting me with a 24 hour monitor but I didn't get that far. Even though I had driven myself to the hospital and felt quite normal my resting heart rate was 33 and I was in total heart block. The nurses decided to blue-light me to the nearest cardiac hospital where I was fitted to a monitor and not allowed to leave the bed. The doctors were concerned to establish why I was now in heart block so I had a series of blood tests. The surprising thing was that one of them came back with a positive read on the initial screen... Lyme disease, (This is usually caught from a tick bite.... I do not remember ever being bitten). I am currently awaiting the results of the complete Lymes disease test (IgM and IgG separation) and being treated for Lymes as a precaution just in case there is a chance they can reverse the heart block (they have managed to do this in the past). However, there is a strong chance that the initial screening was a false positive result. I was on the cardiac care unit for 8 days then stepped down to the low dependency ward for 5 days before being allowed home on total bed rest. I am due to go in tomorrow to collect my results and for the Cardiologist and Electrophysiologist to decide whether to put a pacemaker in or not. Everyone thinks this is highly likely and I am incredibly nervous.

I've read so many stories about pacemakers hindering people's lives, being able to feel it and hear it working, the leads detaching, the device stopping people exercising and doing what they used to do, the pacemaker being out of rhythm etc and I would really like to get some clarity. I enjoy going to the gym, going to gigs, running, cycling, swimming and on holidays I ski and sail, I am also a scuba diver up to rescue diving standard. I will be fitted with a MRI safe dual lead pacemaker and I suppose my questions are as follows:
- Will I still be able to do all of the above sports? I have heard that I will no longer be able to dive below 18m.
- Will the leads dislodge if I do backstroke or front crawl when swimming (after the initial 6 week period of not exercising)?
- Will I still be able to go to gigs and clubs even though they have loud speakers?
- Will I be able to jump into water off a ledge?
- Is the recovery period the same when you have it replaced?
- Do people feel that the pacemaker rates increase enough when they exercise?
- Do people feel like the pacemaker has generally benefited them and improved their lives?
- Can you feel it or hear it working? Mine will be on all the time for total heart block.
- Has anyone had one fitted under the breast tissue or under the pec muscle? Does this make a difference to how it looks or how you feel about it?
- After you have been recovering for a while does it bother you?

Thank-you so much for any help and advice you may be able to give!
I don't think I'm going to have much of a choice about this but I'm trying to be as informed as possible so I can prepare myself and stay positive.

When one door closes, another opens.

Much love goes out to everyone living with a pacemaker. May they only ever enhance your lives.