A big challenge when told you have something as serious as cancer or heart failure is trying to absorb a lot of information at once and understanding all the medical terms being fired at you by the health professionals who are familiar to using all the official Latin-sounding terms.
You almost have to learn a foreign language overnight while in a state of shock.
That’s why I am writing this blog to pass on some tips in plainer English about what to expect after being diagnosed with heart failure. I will use a similar template to my Cancer-Talk blogs, which I wrote after finding out I had bowel cancer at the end of 2014.
Back then, I was baffled and confused by all the treatments I needed, such as radiotherapy and chemotherapy, and the different side-effects of the medication and operations, such as fatigue and sickness.
It is the same now I am coping with heart disease – or heart failure as the medics alarming call it.
I will try to keep things as light-hearted – excuse the pun – as I can, but of course it is a serious matter.
For me, just as happened when confronting bowel cancer, I knew something was wrong coming up to Christmas.
I had returned from my first work-tip abroad since the COVID-19 pandemic – a few days in Dublin reporting on the International Association of Universities (IAU) conference for University World News in early November, 2022.
Before I went, I was experiencing worsening breathlessness, which my son-in-law Carlo noticed and he offered to drive me to and from the airport.
However, I was determined to try to break the ‘Covid curse’ that had prevented the world from travelling and was actually more concerned about my arthritis.
When I got back I had other warning signs like wheezing when lying down and waking up in the middle of the night with palpitations. I managed to get an appointment with my doctor with no trouble after explaining my symptoms to the receptionist.
At first, the medical people thought I had asthma and I was given an inhaler to see if that would help.
However, after various scans just before the New Year, I went to James Cook University Hospital in Middlesbrough to see cardio consultant, Dr J Thambyrajah, on 4 January 2023.
He asked about my medical history and after I prattled on about my arthritis, my wife Ann interjected to remind me about battling through bowel cancer in 2015.
The consultant took that as a clue that I could handle bad news well and didn’t mince his words to say: ‘You don’t have asthma. You’ve got heart failure.’
Even though my own GP had mentioned that was a possibility a few months earlier, I was left speechless (for a minute or two).
The consultant was clearly a busy man and had lots of patients to see, but he said he would refer me to heart specialist nurses who would monitor things from there on and gradually build up the medication I would help me to help me to live longer.
But, he said that I needed to stop drinking alcohol immediately and stop taking Naproxen and Ibuprofen which I had been using as pain-killers for my arthritis which can be bad for your heart!
A few days later he sent me a letter explaining things in more detail, using all those Latin-sounding terms to describe what was wrong with me, and named the various tablets that would be gradually added to the cocktail of pills I am already taking for other ailments and helping with the on-going side effects to bowel cancer treatment all those years ago.
On an average day, I take 15 different tablets every day, from beta blockers, to pills to help my heart pump faster to statins for high cholesterol, to aspirin as a blood thinner and other new ones that have just been added to help control my blood pressure.
That total includes things like Loperamide and Imodium and other tablets related to my bowel cancer treatment and medication to help with sleeping and Codeine and paracetamol to help with arthritis.
So, it is all a bit of a juggling act as some tablets need to be taken in the morning, some at night, some with meals.
There have been several occasions when drugs I am taking for heart failure have reacted badly with medication I was already taking which has taken some sorting with my GP surgery. Like everything in life, effective communications is key to the right things happening or not!
As mentioned in my last blog, the MRI and other scans showed that my heart hasn’t been pumping properly and I had a narrowing of the arteries to put it in layman’s terms.
So far, despite everyone asking me, no medical person has mentioned me needing stents and I don’t think I had a heart attack. My symptoms were more to do with shortness of breath and feeling unusually tired, so I was lucky my doctor saw that and rang alarm bells.
I have undergone a fairly drastic lifestyle change and have monthly check-ups and blood tests, and have cut almost all alcohol and my beloved mature cheddar cheese.
One side effect is that I have lost nearly a stone, or 5 kilograms, in weight since January.
Manage your health plan
My advice is that you need to be as alert as you can when ill and take as much control as possible in managing your own health plan. While respecting all the experts, do use common sense and in my case the pharmacist has been important in making sure the drugs don’t conflict with existing ones.
Speak out, calmly and clearly, if things go wrong. Write things down that you want to say and don’t lose your temper especially with the receptionist.
A key message I want to get across in this blog is that despite the odd little mishap and misunderstanding along the way and despite the best efforts of the Conservative government to cause widespread disruption in the National Health Service, the treatment I have been getting since the beginning of this year for heart failure has been excellent, especially from the specialist heart failure nursing team.
They come out from the hospital to my local GP surgery and I see them once a month and they monitor how I am doing.
I usually come away with yet another pill to add to my ‘dosette box’.
The nurses also remind me to keep up with lifestyle changes to help survive heart failure, including cutting down on saturated fats and not drinking more than the recommended guidelines of 14 units a week of alcohol a week.
I now probably drink less than 8 or 9 units most weeks and have found a liking for low or no alcohol alternatives, which I wrote about in my last health blog in May, if you need some tips.
How are you?
When anyone asks: “How are you?”, I reply: “Pretty well, considering I’ve got heart failure, arthritis and had bowel cancer a few years ago.”
I’m still doing bits and pieces of writing for University World News, but I am not travelling far. That’s why I have been missing from the higher education conference circuit this year.
But we learnt how to work well with the technology during the pandemic and it is often easier reporting on webinars and online events than in-person and it helps the planet not flying everywhere.
Stay as positive as you can despite the challenges and sometimes feeling a bit down.
Treat your body as you would a nice vintage motor car and listen to what the medics say, but also try to manage your own health plan, even if you are tired, and remember the health service is still recovering from the impact of the Covid pandemic.
So, until the next time when I will blog about how on earth I lost a stone in weight by accident while fighting heart disease.
For more information
Your guide to heart failure published by the British Heart Foundation
Overview: Heart failure | National Health Service
Main image: Systolic heart failure | John Hopkins Medicine