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Hi, I'm Nicky and live in Cornwall in the UK. I was on PD for around a year before my Mum gave me one of her kidneys. I've had it for 12 years (very very lucky) but I am now in a long drawn out chronic failure (creatinine jumping from 300-450 - up & down like a yo yo!).
Feeling a little bit in limbo - obviously not looking forward to dialysing again but feeling so ratty and tired (not to mention puffy like anything in the morning and feeling sick) that almost optimistic about the whole process giving me a bit more energy. Mind you - I have a 3 year old daughter and I know a lot of Mums are feeling shattered - I also work full time - difficult to know what's up sometimes!
Anyway - I don't know any other transplant or dialysis patients - I never get a chance to chat to anyone in clinic and most people are considerably older than me (I'm 33). Sometimes my friends and family don't understand that I'm not being lazy but genuinely shot to bits. I thought I'd write on the bulletin board and see if could make any friends.
It's great reading everyones messages and the support you all give each other - like walking into a very friendly place.
Firstly, biggest admiration on working AND raising a toddler with a 'not quite so great' transplant . I'm well impressed.
I'm around 500 with my creatinine at the moment so I can appreciate the 'limbo'
I'm 27 myself and there are quite a few 'younger' (anything under 40 is clinically younger & we're a minority, statistically patients on here so I'm sure there's someone down near you ..
If you want to know a little more read my profile/intro HERE: http://kidneypatientguide.org.uk/newBB/ ... hp?p=34#34
Take a look at the links in my tag as well.
Cheers
Last edited by JMan on Fri Feb 11, 2005 9:15 am, edited 1 time in total.
Hi, my story seems similar to yours, dialysis 12 years ago, then a transplant for 10 and dialysis again for the last two. Unlike you I don't work, but I do have a four year old son. I certainly admire you working and caring for a young child, that must be tough. If you want to e-mail me please feel free. Amanda
Hi Nicky, I'm another Nikki!
Sorry to hear about your situation, its all of our worst nightmares isn't it?
Welcome to the board though, you'll find it so comforting and helpful to have mates on here who know what you're going through, and just people to talk to who know how it all works and how you're feeling!
I'm 28, got kidney failure aged 20, was on capd for about a yr and a half and then borrowed a kidney from my dad! I've had it for 7yrs and worry eveyday about loosing it.
Anyhow, hope we'll chat soon! Take care!
Love Nikki. xx
Hi - thanks so much for your replies - it is so good to hear from not one but two people close to my age that actually understand/that I have something in common with. HELLO!!!! Amazing - I don't get to talk to anyone like this for around 8 years and then 'bingo' I'm home!
I work from home, I'm a Fundraising Manager for the MS Society. I used to be office based but moved to Cornwall and the nature of my work means that so long as I have computer then I can work pretty much anywhere. It is a huge bonus being at home - I go to the office one a fortnight - I reckon I'd be taking a lot of sick days if I had to travel to an office every day. It's the overwhelming tiredness that does it.
Anyway - having a small one is excellent - her Dad is a star and has always been involved since the day she arrived (sharing nappies, night feeds the lot!) and she goes to nursery for 3 days a week. My little bean is gorgeous!!
Its great you've found this forum. Joining it was one of the best things I ever did! Its so much easier to cope with my illness when I don't feel so alone.
I'm 28, and have MCGN (or MPGN). My kidneys are still functioning, just lots of protein leaking. I get so fatigued though and don't work. I wouldn't have had to give up work if I hadn't had such a long commute in and out of London every day, I still get annoyed about that sometimes. Its really cool that you can work from home most of the time. Still, you must feel frustrated feeling so tired all the time when you just want lots of energy to play with your little one!
patients on here so I'm sure there's someone down near you ..
Hi Nicky, I'm another Nikki!