How slow is your pacemaker?

This account is written for an aeromodelling website and from an aeromodelling perspective. Other audiences must accept my apologies if some terms are difficult to understand.

Around 30 years ago, I had a severe bout of flu which left me with a painful chest. This led to a diagnosis of high blood pressure (Hypertension) which I had probably had for some time. I was started on a course of treatment for this which involved lots of side-effects and several changes over the years. Occasionally, things would get out of control and another change was needed.

On one ocassion I got fed up with the whole thing and stopped taking the medication. The eventual consequence of this was an astronomical blood pressure (literally too high to measure) and the loss of a part of the retina in my right eye due to a large haemorrhage. I have other eye problems which don't concern us here.

Fairly predictably, I was eventually diagnosed with Type 2 diabetes, which requires further medication and diet.

Some seven years ago I suffered a whole series of what the medical profession call TIA's, better known as 'mini-strokes'. For the best part of a week, I repeatedly lost control of my left hand and/or arm. The strangest part was that I had full feeling yet would lose all control of movement. These attacks lasted from 5 - 30 minutes, always followed by a full recovery.

Being an NHS patient, it took most of a week to get an appointment to see my doctor. The attacks ceased about 10 minutes before walking into his office! This is a well-known effect, accepted by doctors yet totally unexplained. The 'cure' was to put me on aspirin, making a total of 5 different pills per day.

Around 4 years ago, I began to notice feelings of breathlessness, accompanied by an erratic pulse, usually during the night. I mentioned this to my doctor but my pulse was rock solid at that time - of course.

In September 2004 I awoke during the night to feel that I had very little control of my left arm and hand. I assumed that I had been lying on it and went back to sleep. In the morning, I could not raise the arm above my shoulder and had very little real control of my hand. To scratch my left ear I had to use my right hend to move the arm into position. I could then find the left ear, but the fingers didn't have the strength to scratch. By the end of the day, the effects were almost gone but the fingers still had no precision. At the end of the second day the effects had almost worn off, although to this day I still have no lateral control of the third finger. One week after the stroke I attended the Milton Keynes C/L event.

It took some three weeks to get an appointment to see my doctor (in retrospect, I should have gone to the local hospital). My doctor then diagnosed an erratic pulse (atrial fibrilation), confirmed by an ECG. I then had to wait some five and a half months to see a cardiologist. In the meantime, I was put on Digoxin (I've since been told that this actually contributes to the problem and the dose has been reduced) and Warfarin (better known as digitallis).

My first encounter with the cardiologist (February 2005), led to the suggestion that we try electric shock treatment, followed by a very clear attempt to talk me out of the idea! "Well, there's a 50% chance that it won't work. If it does work, there's a 50% chance that it will revert within a year."

This was followed by the suggestion that I should be fitted with a 24 hour heart monitor and then undergo an exercise test to see what happened. The heart monitor apparently showed that my heart stopped for as much as 3.5 seconds during the night. I asked how the monitor knew just when my 'night' was. My doctor agreed that this was a good point and left it at that. Actually, my 'night' on the day in question was from 8pm to 2am.

The 'exercise test' was a total joke. After hooking me up to the machine, I was told that they would not be doing the test today!
"Why?"
"We'll give your doctor a full report."
"Have you discovered something new?"
"We'll give your doctor a full report."
"Am I safe to walk home?"
No answer.
It's a pity because I really feel that a chance was missed to learn something. Maybe my heart stabilises when it needs to.

Neither my doctor nor the cardiologist has heard anything to this day and neither seems interested in finding out.

My next visit to the cardiologist (August 2005) produced the revelation, "We'll fit you up with a pacemaker." Seemed like a good idea. His subsequent letter to my doctor referred to the fact that I had impaired kidney function. My doctor denies this and doesn't know where the reference came from.

In November 2005 I received a letter from a lady at Hemel Hempstead hospital to inform me that she had been trying to 'phone me for some time to arrange an appointment. I then spent 3 weeks trying to ring the lady daily and leaving an answer on her ansaphone. At one point I actually got an answer, but from the wrong lady who told me that I should talk to her coleague and she would get her to ring me when she returned to the office. I spent the rest of the day sitting by the 'phone. When I finally made contact, the lady freely admitted that she had made no attempt to ring me back. She then had to speak to 'a technician' before she could offer an appointment. To my surprise, she rang me later that day and offered December 16th.

Let's get things in perspective here. This was 15 months after my stroke and 10 months after first speaking to the cardiologist. In the meantime, I had twice driven to Cornwall and back (700 miles) and won the Vintage stunt C/L event at the 2005 Nats.

I told the lady (best left nameless) that I needed instructions to get to the hospital as I would be arriving by public transport. I was then informed that I had to have someone take me to the hospital, stay with me, bring me back home and stay with me for the following night. This on about a weeks notice. Well now, all my friends are dead and gone (in the Watford area, antway) and my family dead or emigrated. Furthermore, if there was someone who qualified, there is no way that I would ask them.

This information was passed on and the response was that the surgeon would not operate under those circumstances. I informed her that I would discuss things with my doctor and see if a solution could be found, but that it was unlikely. I would inform if it was possible.

I talked things over with my doctor and the practice nurse. There was no solution and I was resigned to the fact that I would have to accept the situation and let nature take it's course. After further discussion with my doctor, I decided to make the trip to Tucson, Arizona in March 2006 to attend the Vintage Stunt Championships, an event I have always wanted to attend. This would, almost certainly, be my last chance.

Things were well advanced when, in late January 2006, I received a letter giving me an appointment to have a pacemaker fitted at Hemel Hempstead on February 7th. This really knocked me sideways. I had accepted the fact that it wasn't going to happen and now everything was starting again. I rang the lady at HH hospital and explained that I still couldn't meet the requirements. "Alright, we'll book you a bed! Get yourself here on February 7th and we'll take it from there."

So, following the instructions in the accompanying letter, I stopped taking the Warfarin and cancelled my plans to attend VSC, which I now bitterly regret.

Unfortunately, things didn't stop there. I found myself in a very agitated state. I normally have around one migraine per year (fortunately, just a visual disturbance with no headache). I now had three in two days! Something had to be done. I didn't have anyone to talk to. I left a message for my doctor regarding the appointment and said I would like a word. Apparently, he tried to ring me without success.

My main concern was that no-one had actually described to me what was to be done and the possible limitations afterwards. It seemed highly likely that I would arrive at the hospital, find out what I needed to know and refuse to sign the consent form, thus wasting everyones time. Meanwhile, I would have gone 5 days without Warfarin.

On 4th February I resumed my Warfarin dosage, thus making the decision for the moment, and turned to the web for information on pacemakers. There, I discovered that the recovery period could be as long as two weeks and that there would be serious limitations on my future activities. Was I willing to commit to that on 2 days notice? NO!

On 6th February I rang the hospital (amazing that I got through first time!) and informed the lady of my problem. "We'll take you off the waiting list then." I had no choice but to agree. Note: no attempt to supply further information that might help.

I've since talked to my doctor who accepts my decision. I have the impression that any future attempt to actually go ahead with a pacemaker fitting may prove difficult. OK, so be it. He suggested that I should cancel my next appointment with the cardiologist. A little strange I thought. I have no intention of doing so until someone is held accountable. I'll say nothing at this point about ladies who like to play God.

Incidentally, before the latest events, above, I received a letter to inform me that my cardiologist had been changed, so I have to start again anyway.

I started a thread on the Stuka Stunt Forum regarding imbedded pacemakers. There was some interesting feedback. The overall response was 'Go ahead and do it' but there were some negative answers. Several peoplle were on their second or third unit after problems. Some had to have the wires 'tinkered' with. One or two had to have the electrodes in the heart muscles adjusted. Hmmm.

At the time of writing, it is 18 months since the stroke and subsequent diagnosis of atrial fibrilation. In that time I have had just two tests, both ECG's. As the stroke and multiple TIA's all affected the same specific part of the body, the engineer in me suspects that the AF is not the primary cause.

So what do I know so far?

They make an incision under the collar bone and insert the pacemaker in a pouch. Wires are fed down veins into the heart. The wires terminate in electrodes which plant themselves in the heart muscle. Changing the unit, or the battery (5 years or so) means digging the unit out. The unit can be checked and reprogrammed by a another unit held over it, outside of the body.

Thus, the unit is designed to be interferred with and any electromagnetic radiation is hazardous. There are specific warnings about cellphones, particularly digital, noisy electric motors, car ignition systems, radio controlled toys, etc. Maybe it would suit an armchair modeller.

Update, ten years later (July 2015)

In May 2010, I had a serious stroke which left me with double vision and my whole right side paralysed. By concentrating hard, I fixed the double vision in a week. Five weeks later, I walked out of the hospital with the aid of a multi-ended stick. Actually, I signed myself out of the hospital because I couldn't stand it any longer. The result of this was that I received no further help, or Physiotherapy. During my stay, I had two CAT scans and one MRI scan, non of which showed any cause for the stroke, although they did show a cause for the previous problem with my left arm (the other side of my body). Since then, I have been taken off the Digoxin and discharged from regular trips to the Cardiologist because my atrial fibrilation is 'stable'.

I have been bothered by roaring and clicking in my left ear, which also happened at the time of the stroke. I underwent testing to see if there was a cause for this. This involved an MRI scan, which now showed damage to the balance centre of the brain and explained my continuing walking difficulties. Considering the cost of MRI machines, they should be more consistent!

Needless to say, I still don't have a pacemaker. Well, with only three strokes in ten years, I obviously don't need one!

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