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A message from the big man himself..(copied from FB for the non FBers)

 

 

Hi everyone. Thank you for your continued support and best wishes and prayers. You are all in my thoughts too. Don't really get in the main "book" a lot do I'm sorry and feel guilty not replying to all your individual posts. Jo named my new kidney Valerie and I've shortened it to "Val" a bit more manly, well yes a bit, thinks of Val Doonigan. 
Val is not completely asleep and is doing well trying to keep my creatinine level low enough to keep me off dialysis which is fantastic. Val however is puzzling the Drs how she's doing this without passing much fluid. This means a very thirsty toots is restricted to drinking a litre of water a day but I'm not clearing that amount so am gaining weight day by day. I am now carrying about 15 litres of fluid in my skin blood and everywhere. 
They are trying on working on Val to pass more water. They would expect the output to grow day by day normally. So it's a bit of a waiting game. They are trying some infusions of steroids just in case there's any rejection going on that they are not aware of. Again thank you to you all for your thoughts best wishes and prayers and of course also to Jo and my family who have done and do all they can to help me with and through this. 
You are all incredible ((Hugs)) xxx

Kaytee

News Years Eve and Day had a rough time of it. Catheter was removed but i already had a water infection. On top of this i ve been suffering faster harder bouts of AF, been finding it hard to breathe, heart going up to 167 beats per minute, briefly one day 187. they are putting it down to me being so water logged and agitating previous problems. So I was moved back to ICU for a while. They want the water off but scared of lowering my bp again. before transplant my dry weight was 110kilos, they had me up to 136kilos. presently im at 122kilos, but they are going to severely reduce how fast that comes off too a kilo or .5 kilos a day. As well as that Val the Kidney is still sleeping her arse off though she has kept me off dialysis so far. She needs to be shifting this fluid on her own quicker and also shift the urine on her own in faster larger volumes. I have been restricted to a litre/litre and a half a day to drink which i find incredibly hard.
Still Ive been moved down back to transplant ward and more waiting to follow. Sorry chaps, looks like i shall be staying a while longer.
Good look to the other kidney transplants Ive seen come piss loads and told to drink loads and are now out out and about again, im very pleased for them though at times hard to watch.

Thank you for your contributed thoughts, prayers, comments ets toots xxx

Ps I copy and paste this in other places if i can find them, Life is a roller coaster, sometimes the bumps are just very closer together xxx

Tootall

Toots, you sounds a bit deflated there   I know how much you hate the hospital so hopefully you aren't too bored and the nurses are nicer than your old lot.  It sounds like you were hoping for some better news at this stage so I'm hoping you get some good news soon.  It's a long haul but I'm hoping that the fact that Val is still doing SOME work that it means she (let's not pretend here Toots, we both know she's a girl.....and that you love it!!) is just taking a little longer than hoped for to work.  She IS a girl after all, told to do something but refuses to do it until she really wants to.....it's how we do things

 

On the plus side you are now officially a teensy bit girl so you are free to moan, sulk and cry at any time of your choosing.  Just blame it on Val.  xxxxxxxxxxxxxxxxxxxxxxxxxx 

 

 

 

 

Ells

Toots, I hope you take this in the spirit it's meant. My daughter bought me an indoor water feature because she knows that I like to go to sleep to the sound of water, but all that thing does is make me want to wee. Would that help?

 

You're so brave, I've been thinking of you and suzybean and her son and sending positive thoughts.

cologne 1

Hi Peeps, Well i got out two months after my Transplant, its continued to be up and down with my Creatine levels going up and down. Unfortunately not enough downs, still getting biopsies and my latest one showing a bit of rejection. They changed a anti-rejection pill, going to see what that does, if that doesnt help they may try some steroid injections.


Really miss you guys but i still find this place confusing lol ((Hugs)) xx

 

Tootall

Toots ..............so nice to see you. Hope they get your meds sorted soon ..I guess it's trial and error with something like this but hopefully once they sort it it'll be so much easier and better then.

 

As for this place being confusing well ........believe me there was no bigger moaner or complainer than me when we first moved over. The thing is - it really is unbelievably easy and user friendly once you get into it. It just looks a bit different that's all.

 

It'd be lovely to have you back as a 'regular' ...............................gwan' - you know you want to

Soozy Woo
Originally Posted by Tootall:

Hi Peeps, Well i got out two months after my Transplant, its continued to be up and down with my Creatine levels going up and down. Unfortunately not enough downs, still getting biopsies and my latest one showing a bit of rejection. They changed a anti-rejection pill, going to see what that does, if that doesnt help they may try some steroid injections.


Really miss you guys but i still find this place confusing lol ((Hugs)) xx

 

Good to hear you're finally out of hospital. Fingers crossed the new meds help.

 

and don't worry, I still get confused on this site, which is why I very rarely venture away from this corner.

Cinds
Originally Posted by Cinds:
Originally Posted by Tootall:

Hi Peeps, Well i got out two months after my Transplant, its continued to be up and down with my Creatine levels going up and down. Unfortunately not enough downs, still getting biopsies and my latest one showing a bit of rejection. They changed a anti-rejection pill, going to see what that does, if that doesnt help they may try some steroid injections.


Really miss you guys but i still find this place confusing lol ((Hugs)) xx

 

Good to hear you're finally out of hospital. Fingers crossed the new meds help.

 

and don't worry, I still get confused on this site, which is why I very rarely venture away from this corner.

So you've never tried 'A Different Corner'?

 

Soozy Woo
Originally Posted by Tootall:

Hi Peeps, Well i got out two months after my Transplant, its continued to be up and down with my Creatine levels going up and down. Unfortunately not enough downs, still getting biopsies and my latest one showing a bit of rejection. They changed a anti-rejection pill, going to see what that does, if that doesnt help they may try some steroid injections.


Really miss you guys but i still find this place confusing lol ((Hugs)) xx

 

Sorry its been such a tough road Toots  

Really hope the docs find something that helps. 

 

Thank you for coming in to tell us how you're doing xx

 

Its good to be home at least  

 

 

FM

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