A little pill for my legs but that didn't ache

What a year this is turning out to be. It started with so many big plans.  Great North Run, Ride London, various 10Ks, hitting the 50 Park Run target, Snowdon, Yorkshire Three Peaks and all to celebrate my 50th birthday.  Well, obviously COVID-19 put paid to pretty much all of it.  To cap it all off I then injured my back then not long after that recovered my Achilles tendon started playing up.  The main thing though is that those close to me are safe and well.  The Achilles will heal, I've done a 55mile virtual Ride London in the roads north of Leeds and I'll get the half marathon in once I'm fully mobile again so shouldn't really complain.  My experience of living with heart failure has been far less difficult than most people's and for that, I'm extremely grateful.  We've lost some good people to the condition this year and there is a real risk that the after-effects of COVID-19 will see more people have to adjust to living with damaged hearts due to way it's been compromised when ill. 

Part of learning to live with a long term condition like heart failure is understanding how the various medications affect your body and how changes in dosage can make you feel very different and make things easier or more difficult.  You become used to small changes in how you feel day to day and soon know when something just isn't right.

I started experiencing this a couple of months ago.  I take a lot of pills every day, and it's important to realise that the drugs I take every day are not going to cure me, they do though enable me to live a life with it.  Part of taking these pills though is that they alongside heart failure itself make you tired. My sleep patterns are pretty rubbish nowadays.  By 9pm I'm pretty much ready for bed but I'm then wide awake again between 4 and 5am.  Over the summer, before my Achilles injury, I was leaving the house at 5am to go running as I was wide awake.  Of course, that means that by the afternoon I'm starting to feel tired again.  Quite often I also get waves of fatigue that come over me.  It really does feel like I'm being hit with something.  Needless to say this isn't pleasant so I decided to see if anything could be done about it as it was starting to affect my day to day life.

My first port of call was my GP.  Now, COVID-19 has made this more challenging.  We now have to answer a guided questionnaire online to help make sure our GP has as much relevant information as possible and so the surgery can direct patients to the most relevant person.  In my case that was the practice pharmacist.  These are different to the pharmacists you get your pills from or you see when you want advice on cold remedies.  Both the practice pharmacists and the dispensing pharmacists are really important parts of your multi-disciplinary clinical team and deserve just as much respect as the doctors and nurses, or indeed any of our NHS workers. Anyway, I received a call from my practice pharmacist who went through my symptoms, really listened to my concerns and had obviously made sure she knew about heart failure and my own case.  All of this ended up with a reduction in one of my medications (beta-blocker) and an appointment for a follow-up call in 3 weeks. 

I didn't really notice any difference with the tiredness or how I felt generally so when we had the subsequent call it was reduced further.  That's when I noticed some changes.  The tiredness didn't go away which was obviously not great, and my heart rate went up.  Now, when I was on the full dose my resting heart rate was normal between the high 30s and mid 40s which is pretty low.  A normal heart rate for a 50yr old man is between 60 and 100.  A low heart rate is often associated with being fit and apparently a "well-trained athlete might have a normal resting heart rate closer to 40 beats per minute.".  I know I run etc but I'm pretty sure my HR is more down to the pills tbh.  On the reduced beta-blocker dosage I noticed that my resting heart rate had gone up to around 60bpm which was fine, but when I was running it would peak at 177bpm which is rather high and also not efficient at all.  The highest it's been while running was 202bpm, but this was 3yrs ago.  My usual running heart rate prior to having my dosage changed was around 140bpm.

I also started feeling a fluttering in my chest that also made me feel quite nauseous.  This would come on mainly after exercise and last for hours and I have become more aware of my heartbeat.  Understandably I wasn't particularly keen on this.  So, I was faced with a bit of a dilemma.  Do I go back to the GP, do I contact my heart failure nurses (I used to see one after I came out from hospital but had been discharged with the clear message I could get back in touch if I needed to).  I figured that while I was very happy with how I'd been treated by the practice pharmacist that I'd go back to the HF nurses as they are the specialists, so phoned up and was told someone would call me back.  Unfortunately, I didn't hear anything, but I didn't worry as I knew I had another follow up with the pharmacist anyway.

So, the other day I had the follow-up call and explained how I was feeling.  Again, my pharmacist listened and was great.  She had a clear course of action and suggested referring me back to cardiology at the hospital.  She actually called back a few minutes later after speaking to a colleague and they had decided to get me into the surgery for an ECG and some blood tests and a 24hr tape (which is a portable ECG you wear for a day) alongside a follow up with Cardiology.  The appointment at the GPs was yesterday and I had my ECG which was looked at straight away by my GP and was normal plus the blood tests which I would need to wait for the results for a few days.  No 24hr tape which apparently is because the hospital needed the ECG results first.  When I was leaving the house to go to my appointment I noticed I had a letter from the hospital which said Cardiology had decided I didn't need to be seen which was odd as I hadn't had any tests yet.

It doesn't end there though.  This morning I had a phone call from the heart failure nurse who was very apologetic as she had only just been told to contact me. These things happen and COVID has made everything that bit more difficult and to be honest this worked out perfectly as I'd had the appointment at my GPs yesterday.  I explained the issues with her and went through what had been done with medication ad the tests.  Leeds has a patient record that can be accessed by different medical services straight away online so she was able to see my ECG and blood test results which were all fine.  I'd also been re-referred to Cardiology and this should now result in an appointment and possibly a new heart ECHO.  She also decided that my beta-blocker should be increased again as the heart rates I had been experiencing, especially with exercise, were not sustainable and indeed would be detrimental.

So, it's been an interesting experience, but one that on the whole is quite positive.  I don't have a bad word to say about any of the services I've dealt with and very importantly they have all listed really carefully to what I have told them. I've never felt like my views are being ignored.

My advice to anyone else who is concerned about anything to do with their condition is to make sure and speak to your medical team.  They really are there to help, and while things might take a while to sort out they should get there in the end.  If you don't feel right after a change in medication then question it.  Just because it's been increased, decreased or changed doesn't mean it's the right change for you.  Obviously everyone hopes it will be but any concerns need to be communicated back so it can be reassessed if need be.

So, I'm gradually increasing my beta-blocker again and hopefully by the time I can get back to running I'll be in good shape.  I'm still cycling, both on the turbo trainer and outside so my cardio should still be decent.  I plan on getting that half marathon in before Christmas, and next year it's London Marathon time all being good. 

I must be mad!!