The other side of the bedpan

Generally speaking, most clinicians know something about heart failure, even if it’s only the obviousness of the words. Rarely do you have the opportunity to experience catastrophic heart disease and survive to tell the tale. My experience maybe unique or you may know of many others who can tell this tale, but today I want to explain how you can and should make a difference, and ask you to take confidence that you can make a patient’s life better.

I was a specialist nurse at what is suggested to be a senior level. Perhaps like some of you, I believed in myself, but often felt I was not able to make the difference I wanted. In one night it was wiped out; myocardial Infarction leading to stenting, then a pacemaker, followed by heart failure, and now renal failure with Type 2 Diabetes thrown into the mix. You see I was greedy! All or nothing

Now seven plus years on, I have seen things from the other side of the bed. Some experiences were OK, others not too good but also a great many even by my standard were/are exceptional.

Just my experiences: I hope that you recognise some of these thoughts.

Heart Attack

It’s sudden and potentially catastrophic, creating fear in the recipient. What you hear in this heightened state of distress will be remembered vividly, so if you are caring for such a person, be careful what you say.

I was frightened, more for my wife and daughter and how would they manage - what a strange thing to think!

Your greatest asset (other than your clinical skill) is your ability to touch. A simple holding of a hand, a quiet word of reassurance telling the person that they are not alone, and caring for the family members (also traumatised). A coronary care auxiliary nurse offering to give me a wash was ‘a dream come true’, so simple, yet so effective.

Within 6 hours, I had died, returned and had a number of stents fitted. Busy night!

Stenting

I wasn’t really fully aware of events; I was quite ill at the time, but was told it was necessary, NOW. It was 3am and all three coronary arteries were blocked. I don’t remember the time it took - I was not anaesthetised but my memory of the majority of the procedure and the 48 hours later is missing.

Pacemaker

Having an implantable cardioverting device (ICD) fitted into the chest was another shocking (pardon the pun) revelation. Good information provided pre-surgery meant that I had a basic understanding of the mechanics. The most frightening part was the testing of the device - I felt lifted off the theatre table. Thank goodness there was a hand grabber who told me that I was OK and that it would not happen again.

As one comes to expect in life, not everything is straight forward; the first ICD had to be refitted after about 6 weeks as the wiring had moved. No. 2 replacement took longer and was more exhausting. My only concern was ‘will you have to do that ‘thing’ (shock test) to me again? I also seemed to have developed claustrophobia, something that was not present before the initial heart attack.

Twenty-four hours later I’m discharged with a clean bill of health and the next few years were quiet and uneventful. Some years on I was a little surprised when one morning music was heard. I didn’t have the radio or TV on. What could it be? It took several days with this music playing for around a minute at the same time each day before my wife notified me that the music was coming from me. From ME! If you knew me you would realise that I am anything but musical; however, on closer inspection the next day we were ready and found the music coming from MY CHEST!

Alarmed I rang my 'Pacemaker Nurse', and we undertook a home download (yes, I have a fancy box at home that talks to my Pacemaker, my Pacemaker talks to the box, the box talks to the phone and suddenly the Pacemaker Team can tell me what my Pacemaker is telling them, clever). I hadn’t realised but there were at least two alarm settings, one for low battery and one to identify excessive fluid around the heart. In this case, the fluid had become excessive. You learn something new every day.

Heart Failure

Over time I suspect that this is inevitable. My ‘Heart Failure’ Matron keeps me up to speed with things. She is a Clinical Specialist and she acts both independently of others as well as working with others to keep their patients safe.

I will not recover from this and over time, realistically, it can only deteriorate. Various medications are available; I am on most, and at maximum dosages!  Diuretics are the worst -   they make you pee! However, we are told that we must take these early morning day so that we are not up all night. For me, made my life difficult; while ‘the book’ tell us this is what must happen, I take mine over the course of the day, and am not up all night. What does this mean? ‘The Book’ may be the authority on the subject but your patient may need you

My Matron oozes confidence and I feel safe in her care; on the odd occasion that I have had to phone her she has always been knowledgeable and there for me. Am I just lucky? I hope not. This is I hope what you do every working day. Remember that sometimes patients would like to be listened to, and sometimes we need you to inform and strongly advise us what to do. I find that I say ‘tell me don’t ask me’! Does this make sense?

And Finally

I have stage 4 renal failure - what a nuisance. I like to try to keep all of my problems in three boxes - nuisance, problem and catastrophic. As illness pops out of the nuisance box into the problem box I must try to get it back. In this way I can manage my conditions.

I have learned that as a patient with several long term conditions now I must rely on my professional carers. I now do this gracefully, not really like me at all! I am please that my professional carers understand that I do have an opinion and that I do have a life outside illness which means that they do need to listen to me, just as I have to listen to them.

Worryingly, on occasion I have found clinicians within who hear what I say, but don’t really listen as they think that they know best. Please remember your patient may have an opinion and may be an expert.

As a nurse, I need you to care. This is not always what happens though is it? We can try to provide care within the limitations of time and funding, but your ability to really care about me, that individual in the hospital bed, in a care home or in my own home is all I need. Your smile, your gentle words and touch give me hope that when that most dreadful time comes, one day you might be there to tell me it’s alright.

Over my 40 years as a nurse, I know how extremely difficult it is to provide such levels of care, sometimes it’s impossible. But if you can be generous with your time and your patience, your kindness and your compassion, that really does matter. I know now as a patient so much more than I knew as a nurse alone.

Nursing is a great profession, nurses in the main are great; I do understand that every working day is different and can be very hard. Many people you care for are older and vulnerable, can shout a lot, and are confused. It is hard to care for such people and ward numbers may not always reflect the amount of work needed but still we must continue to care.

I sincerely hope that you will continue to be a nurse and a good one at that and that you will never be a patient. However, when illness hits you, especially out of the blue you will realise how important you are. Keep nursing.