ICD fitted in 1997! & I live a normal life

[LesleyICD]

I write this not to wrong anyone, but to give those people who are struggling with doctors’ diagnoses hope, encouragement, and wonderment. To give another perspective. I know everyone is different, and not one fits all...

It all started in 1997 when I had a cardiac arrest the day after a night out in a bar in Bristol. I was a 20-year-old student. I answered the telephone at 10 am, and then the next thing I knew was, what turned out to be three weeks later when I woke up in the Bristol Royal Infirmary (BRI) with my dad sitting next to me reading the paper. He quickly got up shouting for the nurse to come over. Apparently, I had changed the phrase I was saying for the first time in three weeks. I had a cardiac arrest in my student accommodation and was resuscitated by a boyfriend, the ambulance came and defibrillated me then rushed me to BRI in a record time of 4 minutes. I was lucky to be alive. The next few weeks I spent at the BRI recovering and regaining myself, while the doctors tried to find out what was wrong with me, with various tests and probes all of the time. Everyone that knew me repeatedly said that there was no way I took drugs that night, I wasn’t that kind of girl. The doctors found I had a heart rate the same as an Olympic athlete, so I certainly made them scratch their heads! The doctors decided to believe my friends and I ended up with a defibrillator which weighed about the same as a bag of sugar in my boob! This was decided as being the best location on my body as I am a little skinny in my top half. On my leaving the hospital I had to say a huge thank you to the hospital staff including those in intensive care, ambulance crew, cardiac care, and ward 28 where I became part of the furniture! Apparently, there was only one other person in the country younger than me with a defibrillator at the time. I was told by the consultant that, expect to have your pacemaker turned on in your 40s. I was then discharged to the care of my family who slowly rehabilitated me after it was recognised that my memory still was not great…in fact, I was nicknamed Dory (the blue fish from Nemo) as I was so forgetful... I later found out that was why they kept me in the same bed, so I would eventually learn my way back to my bed after my walkabouts! That's when I learnt memory is like an elastic band...if you allow it to stretch....slowly

I decided to travel the world, which I did in 2002. I decided to take up running. I ran the Race for Life, raising sponsorship for Cancer Research UK, because there were so many people in my family that had cancer. I did that several times in my 20’s and 30s until I got pregnant. Then I stopped and other medical reasons prevented me from continuing.

The times in the hospital were more of a survival episode than a treatment for me in the end. Each time my defibrillator battery needed changing I had to be re-admitted. On one occasion via A&E because the battery life was so low that they deemed me a risk, I ended up spending the weekend on a trolley, because once I was in the hospital (be it the corridor) I was deemed low-risk compared to someone who had had a motorbike accident and needed the surgery place. So, time and time again I was pushed down the order until a family member had a tiny whinge at the nurses because I had been waiting for so long in the hospital I was beginning to lose weight. Each day they wouldn’t let me eat until 5 pm, just in case a slot appeared during the surgeon’s shift that I could use. Not fun. But I’m alive. With one of the battery replacement operations my lungs were punctured, and I had to return to my bed after being discharged to fully rest. At another time I was discharged so quickly I don’t think the yellow antiseptic was washed off me after the operation. Apparently, I was one of the first in the country to give birth with a defibrillator inside me. No one could tell me what was going to happen, so during the birth I was just a bit panicky and so just wanted the baby out of me, ASAP. I think the midwives agreed. Just in case the defibrillator decided to activate, fortunately, it didn’t. So basically, no two hospital admissions have been the same. But I’m alive thanks to the NHS.

As I write this, I’m 46. Still have a defibrillator with pacemaker facilities. Not many people know this because it just sits inside me. I’ve returned to running. Less frequently but I can still do 10 km albeit slower than your average 70-year-old! I do feel that I am certainly making doctors scratch their heads again as I prove their theories wrong, finding it amusing gets me through it. In the last few years once again, doctors question my lifestyle 20 years ago, and I still remain firm that I did not knowingly take drugs that fateful night. I have been told I am now overweight. My BMI is on the high side, although to look at me I’m quite slim compared to some people I see. I suppose it’s down to the consequences of life / having a child and walking ever so slowly / working from home / COVID / and let's be honest I do like my chocolate. However, you can’t pinch an inch on me. I can swim for 40 minutes and run. So I don’t see why I am deemed unhealthy…. Until you understand that doctors use a 1950s chart to grade people’s BMI… body mass index. This is basically a ratio between your own height and your weight. Which initially seems unfair. But lots of things have changed since the 1950s. For example, there’s more technology, more fast food availability, and more reasons to sit still. And probably the biggest one for the younger generation is that there is more food with salt in it. Fast food is now in the supermarkets and has become an everyday staple. I had no idea the impact salt would have…. until you put salt on a common garden slug! Urggh…

All these things contribute to the larger human body. The Heart has not got bigger. How can it? It’s stuck in a rib cage. If you eat fat, the fat lines the arteries. It doesn’t make the heart bigger. It makes the heart pumping more difficult because it still pumps blood around your body via the tubes that are coated with the fat. You can’t make the heart bigger even if your body is getting bigger. It’s probably one of the few muscles on your body you can’t make bigger. How frustrating. Like pecs, or a bum. They can be made bigger and smaller with different activities. But it doesn’t work with the heart. I’m sure a heart consultant will correct me if I’m wrong here, but most people have a heart amount the same size as their own fists. The fist doesn’t get bigger either, in a fully grown adult. The only way you can make your heart bigger is by making it stronger. You do that with exercise. So, I go back to running and trying to stay away from that chocolate. Then I read that even BHF endorse chocolate (in small quantities!). Anyway, being really skinny isn’t healthy for the heart either. You honestly can’t win with this. In my experience, the consultants don’t really explain this, or they haven’t with me. It’s assumed that we are all knowledgeable about the human body. Even a consultant is still learning.

More recently I have been getting really cold feet. Particularly in the evenings. Then it has spread to my nose and hands. My immediate reaction is that my heart not beating hard enough to get the blood to my feet to keep them warm. This theory is based on GCSE Biology so no wonder that theory has been proved incorrect, by some very qualified doctors. Now I have another new diagnosis, but only time will tell if my “crazy ill-informed opinion” is correct or whether I have proved two GPs and several heart consultants wrong with my “self-diagnosis” by ruling out other conditions that cause cold hands and feet! If I am proven correct, I could save the NHS a fortune!!!! The only problem is I am only one person among thousands! Mmmmm CHOCOLATE REQUIRED! And more running is required.

I've seen some comments on the wall. Yes, you can live a normal active life. In fact, it is encouraged. Sitting on the sofa does no one any good. Be brave. Go for it...There are a few things I avoid...lifting the microwave/induction hobs / and security barriers at airports, but other than that go for it. Oh and skydiving isn't recommended (I was told by a consultant, it can break your back!)

I hope this has given you food for thought. Another perspective away from all the medical opinions that are given to you when you have a heart condition or a pacemaker. It is so confusing and no one I don’t think fully explained it in basic terms when I had mine so this chat room is great & hopefully this has helped at least one person…