Saturday, 15 November 2014

Tea time

I am still having the whole "dry" thing going on and after speaking to one of the senior nurses (the navy blue uniform) last night I have been told that I can up my fluid to 2 L's a day. I don't know if I can do that because I've been used to 1 L for 18 months and doubling it scares me but she said to make the most of it because its not often that they tell someone to enjoy a good drink.
Time to put the kettle on I think.

Saturday, 8 November 2014

Too much to hope for

I haven't blogged recently because nothing has happened. That's the thing about waiting, nothing happens.
However, while sparing you the minutiae of what is happening mainly because its dull and repetitive, one of the nurses said last night that what is happening could be a sign that my kidneys are working better.
I don't dare hope that she might be right. Could I be in the less than 10% who's kidneys recover after this long. Its too much to hope for.

Friday, 24 October 2014

Bull by the horns

I was still waiting to hear from anyone so last week I first of all got in touch with my consultant's secretary and then mentioned the fact that I hadn't been seen in clinic in ages to the sister at the renal unit where I get my dialysis unit. I got an appointment to see him the other day.
The good news is that he says I'm marvellous - tell me something I don't know Dr F - just kidding. No what he meant was that I am doing really well. He said that he has never had a patient that looked so well, felt so well and managed to work full time around their dialysis. that made me feel good - got to be honest. He also said that he's going to get on to the transplant team and get them to hurry things up because they need to get me transplanted. I always think that makes me sound like a plant that needs moving to a bigger pot.
My boss rang me the day after my appointment to ask me how it had gone and said that it must be odd waiting for a transplant, given that someone is going to have to die so that I can get my life back. You think? Its what keeps me awake some nights.

Sunday, 5 October 2014

Maybe next year.

Haven't posted for a while but I'm still here and I'm still waiting... for everything. Still no word from the consultant, the transplant team or the access clinic though to be fair I'm in no rush to hear from the last one.
I'm going to try and keep busy this week because I don't want to dwell on the fact that I'm here as in, in this country. It's our wedding anniversary this week and before all this happened we would be off somewhere celebrating that occasion. Please don't think that I'm not grateful, I am. I'm particularly grateful that I'm still alive to be at home to enjoy the life I have and that my ashes haven't been scattered to the wind but I can't help thinking that I had hoped to be in Malta this week. When we couldn't go last year we said maybe this year. Now we are saying maybe next year.
People have asked me why we don't go anyway and I can understand that. Travel, even abroad is possible for dialysis patients and I know lots of people who have but for me personally. I don't really want to pay a lot of money for a week away with my lovely husband only to have to leave him three times during that week while I go to hospital to be hooked up to a machine for four hours. Having said that, once I do go active on the transplant list I'll have to stay within close proximity to the hospital (I believe) so maybe I should have gone.

Monday, 15 September 2014

Over the top.

I'm much luckier that some renal patients in that I don't have any dietary restrictions. In the while my monthly bloods show that most things are pretty good although my phosphates do seem a bit low especially after coming off dialysis. I don't really have to watch what I eat. However the fluid is another matter. Being a renal patient, I have to watch the amount of fluid that I take on board every day and my restriction is one litre. That's just two small bottles of water and I have to include all fluid in that, be it yoghurt to the milk on my morning cereal. Some days that is torture and today has been one of those days. U have been incredibly thirsty today so to be honest I have gone over my limit. I know that I'll pay for it tomorrow because I'll have put too much weight on when get to the unit. I'll just have to hope that I don't get a nurse who's going to give me a lecture for doing so.

Sunday, 14 September 2014

My waiting week.


This week has made me realise what the "Waiting Game" is all about i.e. waiting. That's all that I've done this week. No word from the transplant team so I don't know if I'm on the list yet, no word for the hospital to see the nephrologist and I have a couple of things that I want to ask him and now I'm waiting to hear from the access clinic because they are going to want to start all the scans etc. that need to be done before I can have a new fistula created. Not that I want one but I think that they will insist upon it.

One of the people at the unit had to see the doctor during yesterday's session and that's a bit if a worry for all of us. We go there but there is no guarantee that we will be allowed home at the end of the treatment. Luckily they were allowed home but it was touch and go for a bit. I hate it when that happens because its just a reminder that it could be any one of us. Its a bit like when one of the fellow patients die - it could be any one of us. Its frightening really because not so long ago I was talking to a fellow patient, laughing and joking and when I got to the unit for me next session I was told that he had died. I know that people die all of the time from all sorts of things but we're forced to be a close community and it hits hard. I'm lucky that its just my kidneys that don't work. Most other patients have other issues too some of them have multiple issues so I am very lucky.

Monday, 8 September 2014

The dreaded word.

I saw the surgeon today, the one that sorted out the little problem that I had after the arterial bleed from my fistula. I wasn't quite sure what he wanted to see me about but I had an idea and I wasn't far wrong. Firstly he wanted to check up on his handy-work which he seemed quite pleased with but he did mention the dreaded word "access," as in another fistula.
It'll mean starting the whole process again, the scans the tests et al and he has referred me back to the access clinic which is part of the renal department. The nurse at that clinic is a bit keen but to be honest I'm not keen to get one done quickly because I think that my body needs time to recover. Secretly a part of me is hoping that if I can put it off for a bit maybe I'll get "the call" from the transplant team. Speaking of them, I'm still waiting to hear from them. I hope they haven't forgotten about me.