Well, the catheter is done. It wasn’t particularly pleasant, but the doctors got the information that they need, so that was good. I hope no-one minds me going into detail, but they put the catheter in through my neck and both legs, so I am currently feeling a bit sore! Apparently they couldn’t see the veins from below because of the weird way my heart is, so they had to go via the neck artery/vein as well. I currently look a bit like the victim of a vampire attack, although this is nothing compared to the enormous bruise on my leg!
I’m afraid that I wasn’t a very good patient. My anxiety levels were rather high most of the time. Just being in the hospital was enough to set me off crying, once I was left on my own for a bit. However, things improved when some other women arrived to share my part of the ward. They were friendly and chatty and made the hospital stay a lot more bearable. I can’t fault the medical staff – they were great – and the ward was surprisingly quiet with a nice view of the London skyline from the window, so it definitely wasn’t all bad.
It is surprising to me, though, how quickly and easily being in hospital changes you from being a person who functions just about normally in society to a ‘Patient’, subject to the routines of hospital life, always waiting for a doctor or nurse’s next visit, or for the next instruction or procedure. The doctors and nurses were friendly and actually very good at answering questions, and, more importantly, letting me ask them in the first place, but there is still the feeling that the medical staff are superior beings and the patients are their subjects. I suppose this is the case, to a certain extent. The medical staff have the knowledge and skills that the patients don’t have, and we have to accept that. However, I think it is important that patients feel, and are, able to have some degree of control over the way in which they are treated (medically and otherwise), otherwise they are in danger of becoming no more than medical subjects (in their own minds, if not in reality).
It was interesting to see the different reactions and behaviours of the various people on the ward. The ward I was on was especially for adults with congenital heart defects but there was also a lady on the ward who didn’t have a congenital heart defect and hadn’t had the experience of a childhood full of medical procedures. I found it interesting that she was a lot more laid back and positive about the whole experience of being in hospital than those of us who had had more experience as patients.
In a way it was reassuring to find that other people who have had similar experiences to me reacting in a similar way towards medical procedures (although I should point out that they were still a lot braver and more controlled than I am!). The medical staff also recognised that our childhood experiences are now affecting our reactions to, for example, coming into hospital, and I appreciated that they did so. While we were in the ward someone came around with a survey about how having a congenital heart defect affects people emotionally and psychologically, so it seems that this is an area that is being looked at by the medical profession, which I think can only be a good thing.
The next stage, as far as my heart and what’s to be done with it is concerned, is that I will be discussed in a big meeting (!) to decide whether or not they can treat the obstruction(s) in my arteries with a stent. This is a small metal tube that’s put into the artery via the artery in the leg (similar to the catheter) to support the artery and keep it open.
The catheter showed that part of my heart has over-compensated for the damaged part that was repaired with the pig valve and has grown too much new tissue just above the repair (weird, I know). This is now causing the blood flow to be a bit restricted, which could explain my increased tiredness, etc. There are also some calcium deposits in the area around the repair to the hole in the heart which is causing some obstruction as well, but they didn’t seem to think that this needs treating at the moment. I’ve now seen the written catheter report and this mentions possibly replacing the valve, but nobody mentioned this to me when they spoke to me!
The doctor attempted to persuade me to have another MRI scan, but I am afraid I refused – I just can’t face that again. Fortunately, the staff were understanding and said that it wasn’t essential if I really couldn’t face it. I had an echocardiogram so hopefully that will also help them to make their decisions. I will just wait for the letter giving me an out-patients clinic appointment and hopefully dicuss things a bit more with the doctor then. Overall, they seemed quite positive about everything, so that was good.
This experience has taught me, again, that I really need to do something about my anxiety levels, particularly in relation to medical procedures. Being anxious doesn’t help me or the people trying to treat me, but it’s something I don’t seem able to control. I’m just not sure what to do about it. If anyone has any (sensible) ideas, please let me know! Sorry this post turned out to be so long and possibly a bit dull!