I haven’t put another blog on for quite a while, mainly because there were no new developments, but in the last fortnight I’ve heard from a hospital and also had two appointments with a nurse from the heart failure team based at Bristol.
First, the cardiac pacing. Since seeing the cardiologist at Bristol in February I had been waiting for an appointment with the pacing team at Bristol. By early April I hadn’t heard anything so I rang Bristol Heart Institute to find out where I was on the list. They told me they had sent a message to my previous pacing team but hadn’t received any notes and so they couldn’t send me an appointment. The pacing team are set to be my main contact with Bristol, since the cardiologist (electrophysiologist) at Bristol has decided not to review me again. I thought the signals from my remote monitoring device weren’t being monitored at all, so this rang some alarm bells.
I wrote to Telford to ask them to send the notes to Bristol. I had a phone call back from a member of the pacing team to say they hadn’t received a request from Bristol, but contrary to what I thought, they were still receiving signals from my remote monitoring device and would have got in touch with someone in Somerset if there had been a problem. That was reassuring, that they don’t stop monitoring just because someone has moved address – though if anything had gone wrong it would have been difficult for them to get hold of people who could have done anything about it since they had no phone number for me or for my GP. Apparently the remote monitoring by one health authority doesn’t end until there is a handover to another health authority. I don’t know if that is a nation-wide policy but if it is, it does mean that patients are covered when they move house even if something goes wrong with the exchange of medical notes. I now have an appointment for June, which will be six months after my previous assessment.
I’ve had two meetings with the heart nurse, a lovely lady who did a very thorough check on blood pressure, exercise tolerance and whether I had any PND (paroxysmal nocturnal dyspnoea – waking up suddenly short of breath/panicky). My BP is in the normal range, exercise tolerance is fair – which is second stage, ie I can’t walk as far as a mile – and I don’t get PND. She went on to ask how many pillows I use at night. I have a bed wedge, a triangular foam pad that sits at the top of the bed and props me up so I don’t need more than one pillow. If anyone has problems with PND, as I did a while ago, the bed wedge is a great piece of equipment. I got mine via the occupational therapy department of the Shropshire authority and have used it ever since. It stops me rolling off pillows at night and ending up in a heap in the middle of the bed.
We also covered the subject of ankle oedema, an important diagnostic indicator of how a person’s heart health is progressing. What I’ve found is that oedema (fluid retention causing swelling of tissues) gathers on my abdomen first before it reaches my lower legs and ankles, so if I were to ignore the abdominal fluid retention (known as ascites) then by the time my ankles start swelling I’m already getting PND and increasingly short of breath. I’m not the only person who experiences this. I know, from social media like Facebook groups, that many other people have had this experience as well.
The last subject was fatigue. I understand that fatigue plays an important part in heart failure. It is thought to be partly a product of the drugs taken to counteract other effects of heart failure, drugs such as beta-blockers. In my case, during my second appointment with the heart failure nurse last week, I found out that I have low ferritin (iron) levels as well, which might explain the increase in fatigue recently to the point of constant exhaustion. Apparently low iron levels are now recognised as an effect of heart failure. The nurse was talking about a referral to a different cardiologist to see if I need an iron infusion, ie iron infused into the body via a vein. That could take months so in the meantime I’m doing what I can by taking liquid iron supplements – but the problem lies in the non-absorption of iron rather than how much I take.
Lastly, she gave me a booklet produced by the charity The British Heart Foundation, titled ‘An everyday guide to living with heart failure.’ It’s excellent. If people haven’t seen it, I would strongly recommend getting it. There is a great deal of useful information. One item I found very helpful was a simple guide to reducing salt and how much is too much and how much is low. I’ve always been baffled by labels that have either salt or sodium listed and haven’t known what low salt means in terms of grams. Well, here it is: what to look for on a label is less than 0.3 grams of salt or 0.1 grams of sodium PER 100 GRAMS of food. Anything above that should be used with caution or avoided, except for the rare indulgence. I hope that helps someone else, too.