Being at home for three weeks without much contact with health professionals has led to a number of concerns of whether what I’m feeling is right, the same thing that I’m sure other heart surgery patients feel.
I’ve talked with my Doctor over the phone a couple of times, the Cardiac Liaison Nurses, again over the phone, in fact the only health professional I’ve really seen since leaving the hospital is the Surgery Nurse. She’s been invaluable, not only for testing my INR levels, but arranging prescriptions and giving advice. She has been my main source of post hospital support.
While my discharge documentation had said I should receive an appointment with my Rehab team within four weeks, it never happened.
So it’s fair to say, Surgery Nurse aside, the care since leaving hospital has been very poor, and that’s how I came to be in Accident and Emergency early one morning, worrying for my health and my heart.
One night the other week I was sleeping as normal – since leaving hospital I’ve been sleeping on my back, my head and shoulders propped up and unable to turn onto my side which is my natural sleeping position. That’s deliberate you see, on my side there’s a lot more pressure on my chest, particularly on my wound and my still healing sternum. Amazingly though I’ve been sleeping around eight hours a night and hardly moving from my initial position. The Dihydrocodeine is both helping and hindering that process, while it helps me sleep, I have some terrible nightmares that often wake my up in a start.
During this particular night I woke myself up for some unknown reason, and the first thing I was aware of was my heart beating incredibly hard in my chest. My pulse was the same and there were no other real symptoms, it’s just that my heart was thumping and I could feel it against my ribcage, across my chest and my wife could even feel the heartbeat by putting her hand atop my head.
I tried to get back to sleep but I think it’s fair to say that Mrs Brunton was far more worried than I, and so she called NHS24 for some advice. They took some details and promised to call back, and somehow, in those ensuing hours, I managed to get myself to sleep. Yes, I did say ensuing hours, for it was over two before a nurse called us back to discuss it.
They discussed the symptoms and how I was feeling, repeating most of what had been said on the initial conversation. The suggested course was to go to my Doctors’ surgery and get an ECG. Now my surgery don’t have an ECG, they’re just a surgery, not a Health Centre, and so the next suggestion without even a flicker, was to go to Accident and Emergency.
However because I had managed to get some sleep in the previous two hours, and because I don’t believe in bothering A&E departments unnecessarily, I decided to try and get some more sleep. We did, a few hours more, but I woke up feeling just the same and more anxious, so beliefs were out the window and we were off.
When we got there I was surprised as to how well everything was run. On the walls of every room were simple cartoons which showed very clearly how long I would be waiting, what each stage was, and what the colours of the different uniforms denoted for the person wearing them – consultant, doctor, junior doctor, charge nurse, nurse and so on. It was a simple and very effective piece of learning, something that I’ll remember for returning to my job.
I was also surprised that the receptionists had my details already faxed through from NHS24, and that is probably why I was seen so quickly for the initial tests, pulse, blood pressure, ECG and blood samples taken, leaving a nice cannula for later, if needed. The doctor also said I had a beautiful scar, something else I’ll remember for she was a rather lovely young lady herself, and also for telling the surgeon who made the incision.
I was seated again but quite quickly taken away for an x-ray at pace. Well I say pace, what I mean is that I struggled to keep up with whoever I was walking with, but it was good exercise to help me sleep later. The x-ray was quick, and I was seated once again. This time we were taken to sit next to a reception which faced a number of booths with other patients either looking concerned or being tended to.
Here we waited about five minutes or so and was taken through to a cubicle, strangely enough one which had been empty for all the time we’d been seated there. Once we were in I had blood pressure taken again and another ECG. Then it was waiting for another doctor. It took some time for one to arrive, but when they did they were extremely reassuring about how I was feeling. Now we had to wait for the blood tests.
More time passed, and this is where we had the waiting. The blood tests weren’t coming fast and the third visit from the doctor informed us that there was one more blood test to wait on, the one that told us if the heart was operating correctly, everything else had been successful and passed. There was nothing wrong with me. The doctor was kind and took our details, saying that if that final test showed anything untoward that they would phone, he was also reassuring that we had done the correct thing and if I felt this way again to just pop right in. With that, we were off home after three and a bit hours in A&E.
The following day I made calls to the Chest Heart and Stroke Scotland Helpline for some more advice, discovering that I was still able to call my Cardiac Liaison Nurse even after the operation and my discharge, so I called them for some advice too. There was none, no one was really saying that this was a feeling that others had or that it was expected, in fact I was told that the feeling I was describing was rather unusual, not something you want to hear when you’ve had heart surgery.
Although I suggested it as a possibility, I did receive some reassurance that this could be me just getting used to the new behaviour of my heart, or my heart getting used to having to be cut open and having a new valve pushed into it.
That morning, when I got home, it took some time to get back to sleep again as I just couldn’t get used to the hammering of my heart, but sleep I did, and more and more I’ve been getting used to the noise and the feeling of my new valve.
A recent call to the local cardiac rehabilitation team, some four weeks after surgery, revealed that they had no information about me. Checking on the computer they saw that I had been four weeks out of heart surgery but that I was not referred for rehabilitation. They gave me a number and suggested I call the hospital rehabilitation team to ask for a referral and that the nurse that I was chatting with would talk to them too.
That seemed to spring them into action for the next day I received a call from the hospital rehab team. They said that this call should have happened in the first week and they gave me loads of information on how to cope with life post-surgery. Yes indeed, this would have been much more helpful and reassuring in the first week, instead I had been left to fend for myself.
In a rather leading tone they asked if I would like to visit a rehab class. To me it sounded as though they would be surprised if I wanted to do this after four weeks, to me it felt like I’d missed out on something I should have had three weeks ago. I certainly wanted my rehab class, after all I might meet other people undergoing the same feelings.
A week later I have an appointment, it’s going to be almost six weeks since having my surgery and in all that time I’ve had no rehabilitation. Here’s hoping I don’t learn more about what I should have known in the first week.