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

Thanks Kaytee/Toots  

I hope things will be ok Toots and will keep you in my prayers. And Val lol 

Its a hard struggle but you're coping magnificently 

It's promising that creatnine levels are staying low and it's amazing what can be done medically to stave rejection and make a kidney function. I wish Toots all the best. 

Continued good wishes to Toots, and I hope the fluid retention issue is resolved quickly.

Any news?

Hope all is well

Hope all's going well ..........and a Merry Christmas to Toots and Val

I hope all is well with you Toots and you have a Merry Christmas and a much more Happier and Healthier New Year

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

Toots! Lovely to 'see' you.

Toots!! good to see you

Good to see you Toots and hope things quickly start to improve 

Thanks Extremly fluffy thing, Jenstar and Dame poor Giraffe going to hurt in the morning, gives you too much thinking time in here but cant make plans for not knowing xx

Toots

I've been thinking about you a lot ... I'm sad it's taking longer than you would have liked, but it will all work out in the end. 

Hope you're sister has recovered well.

Keep on keeping on

he shouldn't drink  I'm sure you'll be up and running...well jogging soon 

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 

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.

You'll get there, Toots (c'mon 'Val', buck up a bit).

All the best to you 

Aww Toots you've had a rough old time, so sorry   

It must be demoralising to see other patients progress quickly and you've been in so long. You've done great so far. Val is a slow starter but hopefully he/she will pick up the pace.

We're all thinking of you xx 

Massive hugs lovely ....

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

Hi toots, sorry to hear that things are not 100% yet, but if they've let you out then that must be a good thing.

As for this place....there have been a good few overhauls since you were last here on a regular basis - you'll soon catch up, I'm sure. Then you'll be wondering what all the fuss was about!

Toots Thanx for the update... will keep fingers crossed that the new pill has a huge impact.

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

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.

Hi Toots - great to see you!     Sorry it's a bit of an uphill struggle at the moment...hopefully the new meds will help.   Hang in there.  x

I echo what everyone else says - be nice if you visited a bit more often (I never go anywhere but this board either)    

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

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  

Awww, thanks for coming in to keep us updated Toots xxx

Onwards and upwards, look after yourself