What a busy few days it has been and involving a real roller coaster of emotions. Last weekend I enjoyed a GTG with some stitchers from a board I frequent and I can honestly say I haven't laughed so much in a very long time.
Some of us met for a meal the night before where amongst other things we were taught how to brew tea properly. They turned up with the teapot but weirdly also a timer set up ready to go off when the tea was brewed. It wasn't a mega posh place either and I have never known anything like it. Most people peer in the pot and stir but it was an experience that I won't forget in a hurry.
Tuesday I went to see my consultant and agreed to go on the transplant waiting list. I am not as estatic about it as I might have thought as I am still not sure I can actually go ahead if the time came. I am hoping the psychologist will help with this and sometimes I think what the hell I will do it and other days I get panic attacks about it all. My consultant has said because of many factors it probably won't be for a good while-although you can never tell on these things and is happy for me to decide at the time. Whether I accept the organ will depend on several things and it will be the match, my psychological feelings about it among other things. One thing that came to light was that the reason I was refused should never have been a complete bar without further investigations, which is why they have been working so hard to try and sort it all out. I was originally told that my vessels were full of calcium and I would haemorrage as soon as they clamped them to stop the blood flow to graft the kidney on. A scan proved that they were not like that but this surgeon still won't have anything to do with me and it has been noted by a new one that he is usually the one to say yes where others say no. I really don't know what has happened or why, but he will not be considered to do the operation now and my consultant has clearly put it on the computer that he won't do it, not that I refused to have him which is great. Apparently alot of patients can have this calcium build up and I still could have but the scan proved it was not enough to cause a problem. I got rather freaked when I found out I could have it anyway and wondered why we had gone through all this, but this is when my consultant said that they can still do it because they can tell at the time if it is safe to go ahead. If not then they don't do it, but it is unusual that this is the case as there is often some way around it. This floored me somewhat as that definitely means that I should always have been considered for the list and had more tests to make sure not to forget that by shutting the door on me the vessels could have got worse anyway. I am so very cross about all this and just glad this surgeon won't be the one doing it as I would either thump him or run out the door.
The major risk for me now is the success of the thing because it could be difficult to get in and attach as a previous transplant was there so they have scar tissue to contend with. Also being a patient who never does things by halves my blood pressure could stop the kidney working as it would mean reduced blood flow to it and especially so if the kidney works well and I get dehydrated. So my consultant has said I will need to go to ICU after so that I can have some very good drugs that will help my blood pressure stabilise in the first crucial period after the operation. This scares me a bit but apparently it isn't a big deal and if all goes as they hope I would be awake and aware of what was going on just in a place that can give me the drugs easier.
It is early days and at the moment I just feel relief that chapter has closed and all the uncertaintly gone, and am trying not to pressurise myself on deciding what I would do at the time. After all it may never happen but at least now if it does I have all the information at hand to make an informed decision.
Today I am chilling out and stitching and later off to the retail park to look at laptops. I am considering getting one to do my course and as I get a fair bit of financial help it is feasible. I found that last time using the desktop in the hall made it difficult to concentrate at times and me and mum both wanted to use it so one or other of us had to come off it. I am reckoning that a fairly cheap one just for course stuff shouldn't be too hard to find, because I would still do all my leisure surfing on this one, so I don't need to spend loads on this as it is only for one thing. I also need to find a smallish desk for my room as I did all my work on the floor before and that really isn't ideal long term which this committment will be.
3 days ago