Important Milestones this week

One Month Post Transplant!

Me waiting to go to theatre to have stent removed.

Practising the face I was going to pull when having the procedure done...fairly accurate on hindsight.

Well a milestone week: On Wednesday we were a month past transplant.There is such a difference in our appearance,energy and well being ,for me at least.It was also abit of a struggle this week as my white blood cell count was low, those are the cells that fight infection and I started with an infection which was resilient to standard antibiotics.This is because over the past few years I've had  a shed full of antibiotics and they stop being effective, so beware you 'ive got a virus, cold Dr please give me some antibiotics folk' as eventually you get immune to them and when you need them they do not work. Obviously I've been aware of this but because I've had constant infections the medics had to prescribe them,I'm just saying don't rush towards them unless there really necessary. So infection and we have the decision to make to prescribe strong antibiotics, which could mean again I've not got them as an effective treatment if some months down the line I get a major infection as I could build up a resistivity to them. Docs came up with a B plan to reduce one of my anti rejection drugs as to hopefully increase my ability to fight infection, not as bad as it seems as because I'm on the Campath trail which gives me about nine months anti rejection extra cover.Also it was decided my stent should be removed as it could be aggravating the infection.During the operation a stent ,which looks like fat fuse wire covered in a plastic coating, which has a loop either end and is stitched to the ureter to protect the surgical join whilst it heals  from the pressure of all the urine you pass through at hell of a force.The stent is left in for usually about six weeks but it can taken out around week four if it is thought to be causing infection.My join should be recovered enough for this to happen.I just wasn't expecting to be in clinic on Friday morning and in theatre in the afternoon.

The medics are really on the ball I'm just so impressed with them,they listen to what I say about my experience of whats happening to my body and always take this into account. So theatre. I can't believe that I was more nervous about the stent removal than the transplant itself.Probably because I don't give a monkeys what they do when I'm under a general anaesthetic but a local, when your awake is different. I think its been a good thing for it to be sprung on me as I would have ruminated abut the surgical date.So booked in at twelve midday and done  by half three .It was uncomfortable but tolerable and I definitely feel better with it out.I don't have seem to have developed any more symptoms over the weekend anyway.So technically I've got my body back,so foreign bodies in residence..as you see I'm not counting Marts kidney as foreign. I think it seems to feel part of 'my bodily family' abit like the adoptions going well at the moment. I'm feeling like I've turned some kind of corner over the weekend.

I am noticing my stamina is still rubbish, any exertion means I'm tired.I'm still in shock I've got a three month sick note.I don't think I've ever had three months of work before, even when I had a perforated cyst I was in work the week after. Guess its an acknowledgement that the idea I'd be up running about six weeks after surgery was an unrealistic goal. Also it takes time, hospital visits and lots of jiggling with the drugs to get the levels of''just enough immune suppressed'. 

Reflections: Day 6 post Transplant

It seems strange to look back and see how  looked, never mind remember how I felt. I remember feeling desperate to go home.I was feeling constantly nauseous,uncomfortable and thoroughly miserable and sorry for myself,pain from my internal stitches.One of my friends visited and I spent the whole two hours crying and retching .She was great, she just drew the curtains, held my hand and listened.I had hell of a headache when she went  but I felt better.Sometimes I feel in hospital you put on a brave face and its hard to cry or find the privacy to cry.I found the shower good for this!Crying is good for me, its not that I'm not coping its just such a release for all the emotional stuff that's going on that I know I've pushed to one side because I become so caught up with the practicalities of managing pain ,vomiting  etc.

I know Ive got to book my ideas up if I'm to be discharged tomorrow.I want to be at home with Mart and the kids.I had lost about eight kilos here to give you some idea how pumped up with fluid you are.The idea is you don't lose the weight quickly as the extra fluid encourages the new kidney to work.Unfortunately between the retching and the AWFUL food I don't think I'd eaten, except fruit and the odd butty and soup Id got my visitors  to bring in. Its hard to eat when you feel so rough but I was not tempted by the diet.This is in no way the renal units fault, its the hospitals.Its such a shame, if the saying is true 'you are what you eat' then it was beginning to feel if I didn't get home soon I'd never maintain the weight I needed to and this could jeopardize my kidney.Its like everyone says about how bad the food is but the hospital administrators do nothing about it.Its abit of a bugger when Lauras salt levels went up and the reason...the pizza she'd eaten at lunch!The friuit  that's sent up for the renal patients, mainly oranges...hello..aren't oranges high in potassium and your encouraged to avoid them if your on a renal diet.The care is EXCEPTIONAL the diet is UNREMARKABLE, UNAPPETIZING and INAPPROPRIATE at times. I knew from a nutritional standpoint I would heal better at home.