In a condition that has a lot of ups and downs, I’ve had a down recently. That’s why there has been a gap between blog posts, because I didn’t want to write about it in case people who are newly diagnosed apply it to themselves and get worried. This blog is very personal and it’s my story, and I want it to be honest. It wouldn’t be honest if I wrote only about good times and glossed over the rest.
So here’s what has been happening: during May things started going wrong. I was less able to do normal activities including the limited exercise I have been attempting to do daily. Instead of managing to get to the gate at the end of the lane, I had to stop halfway and it was more of a struggle to get back, a distance of less than 300 yards. I wasn’t breathless as such, no more than normal, it was the incredible weakness in my muscles that prevented me from doing more. The weakness seemed to be increasing rather than decreasing and exercise was making it worse, not better. It took longer to recover from the effort.
At the same time my kidney function, which hasn’t been great anyway, was declining. It had a knock-on effect. I had to change from using two pillows at night to using three in order to sleep, because of a heavy feeling in my chest that had definitely increased. Weight was going on around my stomach again, a gathering of fluid which always affects my midriff first before it reaches my lower legs and ankles – and it was going on there, too. My hands in the cooler weather looked like those of a corpse, with dark blue under all the nails (cyanosis) and white fingers where they weren’t blue as well. They would have passed very well for the hands of a zombie!
So when I saw the heart nurse on 24th May I was in pretty bad shape. She took my blood pressure as usual with the old-fashioned fabric sleeve and stethoscope, which some medics prefer to the electronic machines, and couldn’t find my pulse. When she did eventually find the BP it was 80/60 when the norm should be in the region of 120/80. She said, ‘I can’t let you leave the clinic with a blood pressure that low, you’ll keel over. Let’s look at your tablets.’ She decided to decrease the dose of Bisoprolol beta-blocker, which was at 5mg per day, to 3.75mg per day. She reckoned that most of my symptoms were due to the beta-blocker lowering BP too much.
She also said again that according to the latest research on iron levels in heart failure patients, what appears to be a normal iron level in people without heart failure is abnormal in people who have heart failure, and using that scale I am anaemic. It’s something to do with iron transference levels, the amount of iron actually getting into the cells. That would account for the extreme exhaustion and decrease in ability to walk or use muscles effectively, when put together with the beta-blocker lowering my blood pressure too much. She has written to the new consultant recommending that I should have an iron infusion, though that hasn’t happened.
Since the changes, I noticed a difference within two days once the beta-blocker was reduced. My blood pressure increased to normal levels and I felt I had more energy, though not as much as before May. I wasn’t so cold. I no longer had days where I couldn’t get warm no matter how much clothing I put on, it was back to normal levels. Walking has improved slightly but again, not back to pre-May levels.
The dose of diuretic (Furosemide/Lasix) has been increased, reluctantly on the part of all of us since it’s not desirable to increase it, but it has improved the swelling and also the ease of breathing at night. The range of GFR, Glomerular Filtration Rate, for a normal person, is in the 60s. Mine is at 31. The doctor would rather not see it drop any lower than that. However, I have been told that paradoxically increasing the diuretic can actually help the kidneys because it reduces fluid around the heart, allowing the heart to work more effectively. That allows the kidneys to function better. As I said in other blogs, it’s all a juggling act between medications.
Finally, I have seen both the pacing department team at Bristol, and the new consultant. The pacing team were brilliant. Apparently one of my leads was working at just 70% efficiency and they spent over an hour tweaking the device leads to balance them out and get that last lead working at near 100%. It has meant that sometimes the lead in question wasn’t getting enough energy through it to pace the heart effectively, it was only pacing it some of the time and not the rest. So gradually I should see some improvement there as well.
The consultant said she didn’t think I needed an iron infusion as the level wasn’t low enough, so that was disappointing because I felt it would make a difference to my energy levels as well, but we’ll have to wait and see. It’s very much wait and see for all of it, because she said she didn’t want to make any changes to drugs or treatment until I have an assessment of heart function as it is now, which is something I’ve wanted for a long time – so I’m pleased about that, because I’ll be getting an appointment for an echocardiogram and that will show what is going on. I’ll update this blog after that. As for anyone else with heart failure who may be looking in, best wishes to you, keep your hopes up and take care of your body!