Last week I was admitted to hospital electively for tests, including general anaesthesia, relating to the mitral valve prolapse and severe regurgitation I experience. It's a condition more common in pwme than the general population. There seem to be at least two types, and the one I have is linked to hypermobility ( Ehlers Danlos syndrome). Basically the annulus closing the two leaflets in the valve has become enlarged which allows oxygenated blood to flow backwards instead of moving on. Symptoms are breathlessness especially on exercise and fatigue. I won't enlarge on the medical issues- but thought the experience of going into hospital with the issues that brings for pwme was worth noting. I was particularly nervous about how the ME would be affected by anaesthesia, whether ME would even be recognised as a condition, the agents used to take CT scans and more. In fact the 3 days were easier than expected, and I came out feeling tired but ok. That doesn't mean that I didn't experience challenges for the ME but they were surmountable. 1. I was very open about the ME. I had a copy of the book, me and ME by Dr Hng on the table over my bed. Easy read and a few staff members picked it up for a quick peruse, and conversations naturally followed. 2. The first difficult point came quickly. I went in at 7am fasting and having had nothing to drink which quickly led me to request a saline infusion. My mouth was parched and I had read about saline infusions ( forgot to say I did my research before I went in) being of benefit prior to anaesthesia. So I requested one; and requested again. One nurse was caring for a 6 bedded bay, initially not all occupied, but it was hard to interest her in this. I did have to persist but, hurrah, eventually I had an infusion. Whether it helped, I don't know but I appeared to have no negative reaction to the anaesthetic which was a light one. I heard propofol mentioned and checked that it had been used in my anaesthetic which it had. I think I heard fentanyl too, not absolutely sure. This does raise one question for me because if you don't let the procedures run their normal course, I got worried at one point that it might not be done correctly e.g. the saline might infuse too fast. I think this was rubbish thinking born of anxiety and I did learn to let go a bit more. 3. Within half an hour of regaining consciousness another hurdle appeared in that I was told that plans had changed and I was to have a stress echo the following day instead of a couple of scans. Panic. I could not do anaesthesia one day and an exercise echo the next. ME doesn't allow that. This took a huge amount of energy to resolve. DH emailed my ME Consultant but couldn't contact him. I got to the point of saying I may need to refuse consent. Aha- I forgot another piece of my armoury- a letter from my ME Consultant describing need for longer recovery times etc, and this really helped. It was a real argy bargy but eventually, after I offered to come back another day for it, other tests were substituted. My BP had gone sky high during this which helped too. So the stress echo was moved to early Jan. 4. The next day, very little happened because there had been a problem in booking tests but it was useful in that more varieties of doctors called, and options discussed. 5. On the next day, I had another echo and a ct scan: beginning to get used to giving up control to the professionals without so much anxiety about the ME. This was actually quite a big point. Consultant and Registrar who had carried out procedure visited and explained again the importance of the stress echo for their team decision making. IN SUMMARY 1. Do your research about ME, and its effects, with evidence to support such as doctors' letters. A book about ME lying around is a bonus to start conversations. Make a list of things you would prioritise: mine was saline, and to spread out demanding tests/activities so as to reduce pem as much as possible. Obviously talk about these prior to admission but I found that the discussions hadn't always percolated outwards so you may need to handle it on the ward too. 2. Be prepared to persist if you have a strong view. 3. Be prepared to refuse consent if you cannot be convinced that something can be managed. I am still concerned about the stress echo but I have information from the ME Consultant for possible adjustments and I will fight that one in the New Year. Am sure this could be added to by many things I've forgotten but it's a start. I did find the ME made me more anxious than previous admissions but actually I was fine.
Well done for fighting your corner so well, @Binkie4. I'm glad it went well. Best wishes for the next stage in the process.
Thank you for the update @Binkie4 and you are a very good advocate for yourself. I'm glad it went as well as possible and that you are home now.
Glad you're not too much the worse for wear, @Binkie4. Thanks for the good tips - although the one about being open about ME might not work so well in some environments!
