It’s been some time since my last update and I’m pleased to say I’m making progress with the pacemaker. Regarding the anaemia, I asked the nurse about the possible cause – she ruled out X-rays, saying the amount given in radiation is so tiny it wouldn’t make any difference even though I had three within a short space of time. My blood count is rising back to normal but I couldn’t find out what other reason there might be for the onset of anaemia, receiving just a vague ‘it sometimes happens, and if it doesn’t correct itself then we need to do more tests’ in reply. Since it is correcting itself obviously I’m not having more tests. My GP said it wasn’t necessary to test for it more often than every three months so it will be October before I find out if the blood count has returned to normal and it’s a question of watching for a return of symptoms instead.
How do I feel about that? If I start looking pale again and feel more exhausted than normal, I’ll be back to my GP. I’m surprised that it isn’t taken more seriously and a better check kept since there is no reason given for it arising in the first place, but there’s nothing I can do apart from being vigilant. There are other things to watch for and I have more appointments lined up with the pacemaker team and the heart assessment team in September, so I might find out more answers as I go on.
I have more energy to be more active than before, which is great. I’m still very limited in being able to live normally – for example, I can’t go on a regular shop to a supermarket. I can’t go on public transport and I tire easily when standing or walking, needing to sit quite quickly, so I make sure the places I go to have seats within easy distance, eg within a few metres of the shop entrance. Time is limited to maybe ten minutes maximum and that’s a struggle. BUT I am more mobile! It’s a great relief as I can get out of the house more often, when I have an opportunity.
As far as the research saying that people with dilated cardiomyopathy have such a short lifespan is concerned, the often-repeated quote of a 50% survival rate at three-five years and 25% at ten years is out of date due to advances in medical interventions, I have been informed. Obviously there is no blanket survival rate for everybody because of individual differences, but the chances of surviving beyond that three-five year rate are higher. There have been advances in pacemaker design and in the medications used since that report was published and new research is taking place. One research study is being done by the surgeon who implanted my pacemaker, although these things are slow, taking years to complete, so it will be some time before new research replaces the older studies. So if there is anybody reading this who has also come across the three-five year survival rate quote, don’t be discouraged. As one of the heart assessment team nurses said, ‘don’t read stuff on the internet, it’s out of date. We know much more than that now. If you want to know anything, ask us.’ So there you go.
As for Neema the cat she has a new cat door set in the double glazing and she’s one happy moggy as she can scour the area for other cats before getting out into the garden. She still loves chasing ribbons over an assault course of easy chairs, going mad and biting the cushions. She makes me laugh every day. Just now I tried her on some new food, not vastly different to what she normally eats. She took one bite and stood looking at it as if appalled then gazed up at me reproachfully as though I’d put poison down. Cats.
Until the next time…..