Wow, what a hospital. New, polished and extremely impressive. The signs were clear, it was easy to find the department I needed (but I also had the help of a kind volunteer, something I have never seen in any other hospital) and the system of calling patients seemed to be working well. There was even a board to say if the clinics were on time, or running 15-45 minutes late, or an hour or more late, with a simple but clever system of using coloured magnet buttons for each of the three options. In the halls – which were so clean you could eat your dinner off them, though I wouldn’t recommend doing so – the architects had designed spaces for real trees to grow up through the floor. Mike identified them as a species of fig, the type whose roots grow rapidly and strongly. We had a laugh picturing them growing through the tiles, and revelled in the novelty of a hospital that felt like a mini-forest.
But enough about trees and so on. At the end of my last blog I was waiting for an appointment with a GP (local doctor). After another phone call I finally got the time slot on January 18th and the person who saw me was brilliant, a young woman doctor who was very much on the ball and referred me as an urgent case to the cardiologist at Bristol Royal Infirmary. At least, I thought she did. I was surprised to receive a letter a few days later from a central booking service, and puzzled by being asked to choose my hospital from a list. The Bristol Royal Infirmary was the obvious choice as I didn’t know any of the others. The shortest waiting time was 56 days.
I rang the number and was given an appointment for 20th March, about eight weeks away. I’d already gone for two months without any significant input from a heart team so that would mean a wait of about four and a half months in total. I was disappointed but that’s a fairly short time for the NHS so I accepted it. I was told that if the cardiologist thought I should be seen earlier he would alter the date.
To my further surprise, that’s exactly what he did. I was sent a letter that arrived a couple of days later with an appointment for 13th February, the one I’ve just attended. My early impressions were just teething problems, it seems.
So back to today. The consultant I saw was friendly and supportive, a young-ish man (everyone is beginning to look young to me) and after looking at my latest results he discussed the tablets. He said he was a specialist in arrhythmia rather than heart failure, though he dealt with heart failure patients too. With regard to treating heart failure, it’s always a trade-off between heart and kidneys. It’s a juggling act. I have to take the chemicals that will help the heart, but they have an effect on the kidneys. My kidney function is not wonderful, about half the normal rate. I was told that if it reduced further then one of the tablets, spironolactone, would have to be altered to compensate.
Furosemide remains the same, as does bisoprolol, but the consultant is changing the Ramipril to something else which might not make me so nauseous. He said the dose I’m on, 1.25mg, is ‘miniscule.’ At the end he repeated what I have been told previously, that there is nothing that can be done for my heart now it’s dilated. It will decline and it’s merely a question of slowing the decline and giving me some more time, hopefully a long time. On the brighter side, a friend of mine knew someone who had the same low 10% Ejection Fraction that I have, and she lived for another 15 years, so there is some hope of continuing for longer before I kick the bucket. As I said to Mike on the way home, I hope it won’t be a slow decline and becoming increasingly unwell and so on. I’d prefer to go in the flick of a switch – in my sleep would be good!
Death is not a taboo subject in our family. We can even joke about it on occasions, as Mike and I did in the car. There are days when I think, ‘I’m not going to make it to the end of the week,’ but then I have an upturn and can do more. I think I’m beginning to accept that there will be lousy times and better times, and I need to be sensible about the amount of physical effort I use when in a downturn. Apart from following treatment advice, and not giving up, what can anyone do except be philosophical about the rest of it? There are plenty of unknowns, but I feel as though I have a good team I can call on now and that gives a sense of great security that I didn’t have after the house move.