I have always found writing cathartic and that’s why I’ve turned to it again, due to some unwelcome news that has been delivered recently.
It’s taking me a while to get my head around it, not surprisingly I guess. But also due to the fact that I haven’t had much information yet!
Yet again, as seems to be ‘the norm’ these days, trying to navigate one’s way around a broken system (whose main issue it seems is poor communication - quelle surprise!) is proving tricky and time consuming.
I’ve always experienced this and sadly it appears the only way to get anything ‘done’ is by doing it yourself! Not pessimistic just realistic. It’s the only way to get answers, find some solutions and treatment and in many ways to help yourself.
Sadly, with an evermore broken NHS system it becomes more and more difficult to get the answers and you have to become self-reliant.
I have had numerous worsening symptoms this year but have managed them as best I can, explaining them away for other reasons; such as menopause, exertion from wearing my prosthetic etc I’ve been experiencing really horrendous dripping sweats, even on minimal exertion, some breathlessness, unexplained dizziness and a racing heart. Even chest pain, which I thought was from the mastectomy and reconstruction, scar tissue etc
Due to the surgery required, after I developed fast growing cataracts (posterior sub-capsular cataracts) following steroid treatment during chemo, I have had a further complication and need even more eye surgery. Anyway, during the pre assessment for that I had an abnormal ECG. As I knew heart issues could be a consequence of being treated with so many cardio-toxic cancer drugs I contacted the Late Effects Clinic straight away for another appointment.
To cut a very long story short I was referred to Cardiology and a consultant ordered blood tests (BNP blood test) and a heart scan. Very, very sadly, said Cardiologist was killed last month by being knocked off his bike by a van driver ☹️
Anyway blood tests came back indicating my heart was not pumping sufficiently. The GP referred me to heart failure clinic and my scan was brought forwards.
At the scan I knew when the sonographer got a colleague that it maybe was not good news. I was told I needed to be seen by a doctor and start treatment. Which I quickly was (the on-call Cardiologist) and he explained to me that my ejection fraction was 30-35 and ‘normal’ is 50-80. That the symptoms - sweats, dizziness etc are down to this and basically my heart function (Left Ventricle pumping oxygenated blood via the aorta to the body) is in the severe range.
Also I have Left bundle branch blockage, which was picked up on the ECG and ties in with the heart problems from past cancer treatment.
Thankfully I did not need to be admitted as the outpatient pharmacy was open until 9pm and I started medication that day. I was told even urgent referrals to heart failure clinic were taking up to 6 weeks. Despite Late Effects Clinic writing to my GP it was proving impossible to get an appointment with him even for a blood pressure check! So I turned to Amazon and ordered a monitor!
The frustration and misinformation being given over the phone and sent by the hospital has reached another level of incompetence of course. I received the letter below, actually in the same post as the one outlining the details of my diagnosis and treatment🤷♀️
Understanding what this type of heart failure is and means is important to me. I’m not one to bury my head in the sand and I’ve always needed to know what’s what. Once again Amazon has been more reliable than the NHS sadly, at this point, with the purchase of the blood pressure monitor and this book!
There are two types of heart failure. With reduced ejection fraction (HFrEF) and heart failure with preserved ejection fraction (HFpEF). As the heart is a muscle it’s how efficiently it works ie pumps and this isn’t anything to do with fitness or training, as I’ve come to realise. It can be to do with damage by toxic drugs and radiation. A little bit of a basic biology lesson next, so here goes. The deoxygenated blood enters the heart on the right side , then leaves for the lungs to become oxygenated and re-enters the heart on the left side, then it is pumped to the rest of the body, via the main artery called the aorta. So if the heart muscle is weak for any reason and can’t contract properly and push that blood through, as well as it should be then less than 40 is considered to be heart failure. As I mentioned I found out mine is about 30 to 35 so possibly about half of what it should be. This now explains all the severe sweats, dizziness and what I realise now is breathlessness. I just thought I couldn't swim as well and needed to improve my fitness!
Experiencing symptoms increasingly over the last few months, that I’ve been explaining away for other reasons, such as Menopause and struggling with my leg because it's not fitting properly, being more unfit and so on. Apparently this is not unusual for women of my age because we always find an explanation and trying and find ways to manage.
I do feel let down again (again!) not getting the GP support that I’ve been seeking, having to be my own case manager yet again and then even after diagnosis potentially not getting an appointment in Heart Failure clinic for up to 6 weeks, because even urgent referrals are taking this long.
However with medication, the symptoms improved dramatically over the coming days and the dizziness almost disappeared, which was amazing and very welcome. Also, it's positive to know the ejection fraction can actually improve with the meds so fingers crossed 🤞
Then nearly 2 weeks after starting treatment the symptoms started to creep back and by Sunday the dizziness was back with a vengeance :-/ Having been told it was luck more than anything else that I hadn’t had an ‘episode’ by now. I came home from an outing with a fast heart rate, sweating, chest pain etc and my husband called an ambulance.
Thankfully I was not having a heart attack as was feared. They suspect that as well as all this I may have a virus which has exacerbated the symptoms. We were told to contact cardiology again today and hopefully in conjunction with the staff at the GP Practice something will be done and I'll be seen #dontholdyourbreathvicki
It’s obviously very disappointing and not what you want to hear. I thought it was a bullet I had dodged after all this time, from the raft of side effects issues from treatment. Sadly not! I've ticked rather a lot off the list! 🤔I guess though, being treated for 2 types of cancer, having lots of different types of chemo as well as left chest radiotherapy it shouldn't be a surprise. I was aware that it can happen many years after treatment.
Also, understandably there’s always that in the back of your mind about the reason I'm in this situation. Basically because the NHS wrongly diagnosed me in the first place and most, if not all, of the treatment and therefore side effects were unnecessary.
I do think that the PR people could do a better job than calling it heart failure clinic and heart failure nurse, as it is quite scary! I prefer to think of it heart care clinic or heart maximisation nurse ha.
However, as I often say, you can’t turn the clock back, you can’t change it. It is what it is and in the words of Yazz ‘the only way is up!’. We have to live what life we have left to the full. Which I have every intention of doing once I’m allowed to move from the house again 😄
