Search found 657 matches

by AmandaClare
Mon Feb 01, 2016 6:54 am
Forum: The KPG Forum
Topic: Post transplant surgery.
Replies: 5
Views: 12072

Re: Post transplant surgery.

I had a caesarian section. That is considered a bit close to the tx kidney and they brought a transplant surgeon into the room in case anything went wrong. They also cut more to one side - the side where the kidney isn't. The other thing was painkillers. Initially they said paracetamol only and I wa...
by AmandaClare
Fri Jan 15, 2016 11:38 am
Forum: The KPG Forum
Topic: T-1 week to transplant
Replies: 17
Views: 43757

Re: T-1 week to transplant

Great stuff, well done to your sister - hope you both recover quickly. xx
by AmandaClare
Fri Jan 08, 2016 10:16 pm
Forum: The KPG Forum
Topic: Post-kidney transplant fertility & pregnancy
Replies: 41
Views: 157131

Re: Post-kidney transplant fertility & pregnancy

Hannah, I asked my consultant whether my tx kidney might be squashed by a growing baby. He said no, generally the kidney is well out of the way of the action. I think he said he'd seen a problem just once but that was in some kind of special circumstances - sorry to be vague, I can't remember now. I...
by AmandaClare
Sat Dec 19, 2015 11:48 pm
Forum: The KPG Forum
Topic: BKV AFTER TRANSPLANT.
Replies: 13
Views: 39679

Re: BKV AFTER TRANSPLANT.

Sorry to hear it Grey. If it's any comfort I had EBV and CMV after transplant, and it's still going strong at nearly 28 years out. I'm not sure about BK - I think they may have started monitoring for that more recently. In fact they were much more blasé about viruses back then. In retrospect catchin...
by AmandaClare
Sat Dec 12, 2015 12:26 pm
Forum: The KPG Forum
Topic: Can it get any worse
Replies: 62
Views: 194016

Re: Can it get any worse

Incredible, Sporti. Very happy for you! :D
by AmandaClare
Sat Nov 21, 2015 1:51 pm
Forum: The KPG Forum
Topic: Alport Syndrome
Replies: 2
Views: 6100

Re: Alport Syndrome

I'm also very surprised that no one joined the dots as you sound quite a classic case! At least you are getting proper treatment for your eyes, at last. At what age did your kidneys fail? Mine went at 14. There are 3 patterns of inheritance in Alports. I definitely have the recessive type, confirmed...
by AmandaClare
Sat Nov 14, 2015 7:33 am
Forum: The KPG Forum
Topic: Flu Jab Immune Supressed ?
Replies: 13
Views: 30906

Re: Flu Jab Immune Supressed ?

This page summarises: http://www.nhs.uk/conditions/vaccinations/pages/which-children-are-eligible-for-the-flu-vaccine.aspx Children under 2 who need protection for whatever reason get the jab. Two, three and four year olds get the nasal spray. So do Y1 and Y2 schoolchildren It says kids who are immu...
by AmandaClare
Wed Oct 07, 2015 10:24 pm
Forum: The KPG Forum
Topic: Problems plumbing in new kidney
Replies: 3
Views: 9059

Re: Problems plumbing in new kidney

Thats a difficult situation. All the very best - hope it goes ahead and goes well. Post when you can.
by AmandaClare
Tue Sep 29, 2015 5:46 pm
Forum: The KPG Forum
Topic: BKV AFTER TRANSPLANT.
Replies: 13
Views: 39679

Re: BKV AFTER TRANSPLANT.

Grey, sorry to hear about this complication. It's cruel it happened just when you were getting your quality of life back. Hope its soon under control.
by AmandaClare
Sun Sep 27, 2015 6:21 am
Forum: The KPG Forum
Topic: Creeping Creatinine
Replies: 14
Views: 39610

Re: Creeping Creatinine

I find it difficult to drink enough these days. I used to drink gallons of water with meals but just don't want so much any more and it's unpleasant to force it down. Apologies to people on fluid restrictions, I well remember how difficult that is. As a desk worker it's easier for me to drink at wor...
by AmandaClare
Wed Sep 16, 2015 1:30 pm
Forum: The KPG Forum
Topic: The Team Tibbs Results are in...
Replies: 799
Views: 1528484

Re: The Team Tibbs Results are in...

I don't put my ciclosporin capsules in the pill box for that reason. I leave them in the foil. My routine is to take what's in the pot plus the ciclosporin capsules, am and pm. (I know the tac regime is more exacting.) They visibly change if taken from the foil and left in the open air, though in a ...
by AmandaClare
Sun Sep 06, 2015 8:45 pm
Forum: The KPG Forum
Topic: Jamie Olivers Sugar Rush -
Replies: 1
Views: 5530

Re: Jamie Olivers Sugar Rush -

Watched - and signed. Horrifying stuff.
by AmandaClare
Sat Sep 05, 2015 11:16 pm
Forum: The KPG Forum
Topic: Stage 2
Replies: 9
Views: 20983

Re: Stage 2

Really obvious point, but are you getting enough protein? I was on a high protein diet for years because my kidneys were peeing it out. It's a bit different though as I was a child and still growing. Might be worth asking your neph.

Best of luck. I hope you manage to get your quality of life back.
by AmandaClare
Thu Sep 03, 2015 8:45 am
Forum: The KPG Forum
Topic: Should I tell the kids now?
Replies: 9
Views: 20318

Re: Should I tell the kids now?

If there are advantages to early diagnosis and treatment, I think you're obliged to tell all your children to get checked out now. (I don't know much about PKD so don't know whether that's the case. For my condition, Alports, the progress of the disease can now be delayed by years or decades through...
by AmandaClare
Sat Aug 29, 2015 3:22 pm
Forum: The KPG Forum
Topic: Eventful clinic visit - any experience endoscopy or statins
Replies: 12
Views: 29355

Re: Eventful clinic visit - any experience endoscopy or stat

Well, a mere four years after first being referred for endoscopy I finally went through with it today - last time I cancelled the appointment :oops: . I was re-referred because I'm sometimes having difficulty swallowing. It was a mixed bag. I had both sedation and the throat spray but couldn't toler...