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Heart failure and other things – blog 12, pacemaker weirdness

This is what a person with heart failure looks like. Normal. Therein lies the ambiguity that surrounds people who have heart failure, that they often don’t look ill. I’ve read about how other people with heart conditions have found the same thing; that they are told they look well. Sometimes it’s said as encouragement to keep going, other times it’s a reference to how deceptive outward appearances are compared to what is really going on, and in some cases it’s outright disbelief that there is anything wrong at all. Fortunately that last scenario is rare and mostly confined to people who are ignorant of what the other person is dealing with. It’s rarely malicious.


Anyway, that wasn’t what I wanted to write about. It’s now five weeks since the CRT-D pacemaker was implanted. It’s noticeable as a hard lump sticking out of my upper chest. The soreness has almost gone and I’m starting to feel the benefits of having it. I found out what was wrong during the last month – anaemia, not exhaustion caused by the heart failure, or that the pacemaker wasn’t working in relieving symptoms. I don’t have iron deficiency anaemia or B12 deficiency anaemia, this is something else and I think it must be clearing now because I have more energy and don’t look so pale.


As for what caused it in the first place, there are two possibilities: firstly, I had some bleeding during the procedure and then because I was taken straight back into hospital on June 19th due to a near-faint and being generally unwell (I also had low potassium), I had loads of blood tests on a daily basis. Perhaps it lowered my blood count for a while. The other reason might be due to X-rays because during the procedure the surgeon has to use X-rays to see where the leads are being placed. About three or four hours afterwards it’s normal procedure to have a chest X-ray to confirm the leads are still in place. The next day I had another chest X-ray to see if dislodgement of the leads was the cause of feeling ill. I remember the X-ray department querying whether it was necessary for me to have another chest X-ray so soon.


It could have been one or both reasons, but this week I will have another blood test for full blood count to see if there is any change. If the red cell count is increasing, the GP is not going to worry about anaemia. If it isn’t, it means further investigation to find out the cause. Fingers crossed I won’t need that because I think the count must be increasing.


Apart from that there are one or two weird things occurring. First of all I was back at the Telford hospital last week for a check on the pacemaker regarding strange side-effects. Every alternate night I’m woken at about 1am by the pacemaker apparently switching on and doing something. I told the technician it felt like the pacemaker tests I have when attending the clinic, and she confirmed that sometimes the pacemaker does its own tests – they must have scheduled a test to run while I was asleep. I know it can’t be anything to do with me because of the accurate timing of the sensations. I don’t know if she did anything to relive that but I haven’t felt that so much since then.


She was more concerned about the second sensation of spasms in my chest on the left-hand side, most noticeable when I’m lying down or sitting. It feels like constant thumping in my left side. She told me the reason for that – one of the leads is situated close to the phrenic nerve that supplies the diaphragm so it sets off unwanted signals to the diaphragm and muscles nearby. She spent a long time trying to stop it by ‘changing the vectors’ of the signals being transmitted but she wasn’t successful, as I still get the same sensations every day. It might be a question of living with it.


That’s my update so far. To be continued…..

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