suggestion... how about introducing ourselves??

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Re: suggestion... how about introducing ourselves??

Postby SKM23435 » Sun Aug 09, 2015 1:25 pm

Notso,
Life with CAPD can still be very full. I was on APD (the overnight with a machine CAPD) and although I slowed down (I think it's the anaemia that does it) I remained active. Sailing, gym, work. Just not to the same intensity as before. I thought I was doing ok. I didn't realise that I was particularly ill until I got my transplant then felt so much better. I'm 54 and it's so easy to blame everything on age!

Good Luck with your choices and decisions.
We are all different and it's what suits you that counts.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 289
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Re: suggestion... how about introducing ourselves??

Postby bosshogg » Sun Aug 09, 2015 8:52 pm

38 Years old , Married with 2 kids.

Live transplant 13 years ago. 3 Years PD / 6 months APD before that.

Travelled and worked whilst on PD.

Going through work up for Tx list again as we speak. Slow decline of function recently.
Live Tx 13 odd years ago. Living the dream./
bosshogg
 
Posts: 8
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Re: suggestion... how about introducing ourselves??

Postby eeighon » Fri Aug 14, 2015 8:35 am

Hi,

I'm not a kidney patient, but my wife was/is. She was on dialysis and got transplanted just over a year ago. All going good :D
She used this forum a lot and it was a great help to her to hear first hand from other patients.

I joined to post a link to an Android app I developed for CAPD http://www.kidneypatientguide.org.uk/forum/viewtopic.php?f=2&t=12978 when my wife was doing this type of dialysis. Hope it may be of some use to people.

eeighon.
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Re: suggestion... how about introducing ourselves??

Postby cassie » Mon Aug 24, 2015 7:55 am

Not sure if I've already done the whole introducing thing already as I joined a while ago...

However, I'm Cassie. 27 years old from Manchester. Suffered with CKD since I was a baby and queen of Kidney Infections and UTI's. Had a nephrectomy in 2008 which improved my quality of life however my remaining kidney failed by 2012. Been on CAPD, APD and also Haemodialysis and received a kidney transplant as of May 2014. I used social media as a means to finding a donor and I was pleasantly surprised at the number of people/strangers who came forward offering to get tested to see if they were a match.

Would love to use this forum as a means of sharing my knowledge as I have experienced all forms of dialysis and had quite a few complications a long the way, making me an 'all rounder who has done it all' as they say. :lol:

Life as a post-transplant person is very different for me and I am shocked at how good I feel. I think when you're poorly from such a young age, you don't realise how ill you are and what it feels like for a normal person. Very thankful to be given a second chance at life.
cassie
 
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Joined: Wed Feb 19, 2014 6:27 pm
Location: Manchester, United Kingdom

Re: suggestion... how about introducing ourselves??

Postby Grey » Sun Aug 30, 2015 9:04 am

Good on you girl, may it last a lifetime. Now live life to the full, after all, we each have only one so make the best of what you have.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
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Location: Chester

Re: suggestion... how about introducing ourselves??

Postby Keysersoze » Fri Sep 11, 2015 6:50 pm

I'm 33 and from Ireland. Two weeks now on haemodialysis with a chest line.
This January my kidneys failed. I had felt very sick the last two years but I was diagnosed with heliobaceria pylori.
But it wasn't, my kidneys were fucked.
They were getting progressively worse until two weeks ago my potassium levels were at 6.2 do creatinine in the 1,300s I was brought in for emergency femoral line and dialysis the moment it was fitted. They have since put in a chest line and I hope to have the fistula op soon.
I am out of hospital a week now and back to work three days and three days college, 4 half-hour gym sessions a week, and three 4 hour haemodialysis sessions a week.
Sleeping and resting a lot.
Keysersoze
 
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Re: suggestion... how about introducing ourselves??

Postby Chrissy-DeePY5LT » Sun Nov 15, 2015 12:26 am

Hi, I have a working transplant that keeps giving up the ghost and then picks up again. I was transplanted in December 1997.
I live in Stoke on Trent and love life. I have two Children both in their 30's now & have precious Grandchildren.
Chrissy-DeePY5LT
 
Posts: 1
Joined: Sat Nov 14, 2015 11:22 pm
Location: Stoke on Trent, Staffordshire. UK

Hullo again

Postby emmellar » Wed Dec 30, 2015 6:08 pm

Hi I'm 43 and live in Scotland. I haven't posted on here since March 2010!

Aug 2009 - acute kidney failure (suspected NSAID rejection)
Aug 2009 - Feb 2010 - HD through central line
Feb 2010 - Feb 2011 - PD at night
Feb 2011 - CAME OFF DIALYSIS as a trial!
Feb 2011 - Stayed off dialysis but function has been steadily dropping and eGFR now 12-13

Getting worked up for TX list and close to being re-activated as was on it in 2010/11.

Was largely symptom free until about 6 months ago but now suffering from mild anaemia, itchy skin and, starting this week sore joints.

Time to face up to reality and signing on here is my first step to getting back up to speed.
emmellar
 
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Joined: Sun Mar 07, 2010 9:37 am
Location: Scotland

Re: suggestion... how about introducing ourselves??

Postby Alf » Fri Jan 01, 2016 9:40 pm

Hi all, I've been helping my parents. Dad (77) has been on APD now for a good couple of months after his initial few weeks of CAPD. I've found lots of useful info and tips here so thought it was about time I signed up...no doubt I'll plague you all with lots of questions now! Wishing you all the best for the new year.
Alf
 
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Re: suggestion... how about introducing ourselves??

Postby zippot » Tue Mar 15, 2016 11:47 pm

Hello Im Dave been on hemo for 10 months capd before that for a year im 54 waiting for a transplant Im usually very positive with my illness but can feel down at times like most people.I try very hard to keep the exercise up and stick to the diet.I was wondering apart from walking what you people do for exersise
zippot
 
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Re: suggestion... how about introducing ourselves??

Postby Sho25 » Wed Mar 16, 2016 12:36 pm

Hi I'm Shona I'm 32 single mother of two children I had my daughter who is 18 months whilst I've been a on dialysis.ive been doing hhd for just over three years. I don't like it but I do it! New to this forum and wanted to say hey to everyone :)
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Re: suggestion... how about introducing ourselves??

Postby SKM23435 » Thu Mar 17, 2016 5:17 pm

Hi Dave,

Welcome to the forum.
I was 54 when I received my transplant last year - so good luck.

I did carry on exercising on dialysis. I was determined to be as fit as possible when the offer of a kidney arrived. I'm sure this paid off. My stay in hospital was short and my recovery amazing. Exercise for me on dialysis did get less strenuous with time. Like you I walked. I did go to the gym to concentrate on cardio fitness - cycling and cross trainer. I did what I could. When I was anaemic I did less, when I was less so I did more. I just listened to my body and gave it an occasional push.

It's not easy but do carry on.

Sue
Last edited by SKM23435 on Thu Mar 17, 2016 5:22 pm, edited 1 time in total.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: suggestion... how about introducing ourselves??

Postby SKM23435 » Thu Mar 17, 2016 5:21 pm

Shona,

Hi and welcome.

I'm impressed. A pregnancy on dialysis. I've never heard of that before. You must be amazing.
I wondered if you could tell us more about it. I'm sure it would be on interest to others. It gives hope. Was getting pregnant difficult? What extra care did you get during pregnancy? We're there any complications? How's your daughter?

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: suggestion... how about introducing ourselves??

Postby Genevieve189 » Fri Mar 18, 2016 3:58 pm

Hi everyone. I'm 69, a retired teacher, and live in the north of England. I've had kidney stones in both kidneys for a few years and, thankfully, am asymptomatic at the moment. However, my latest ultrasound showed that one is now 10mm and the other 6mm, so I'm not sure if the urologist will want to do something about the larger one. I also suffer from fairly regular UTIs.

The ultrasound also showed bilateral angiomyolipomas, which I understand, are rare, benign tumours. I am rather concerned about these as, from what I have been able to glean, they often grow and when they reach 4cm there is a danger of haemorrhage. A CT scan with contrast, that I had a two weeks ago, should have shown their size at present and I'm now waiting to for an appointment with the urologist to discuss the results. I also have a cyst on one kidney and, as of three years ago when I had my last CT scan, although this was septated, it was Bosniak 2, so I'm hoping that it is still OK.

I must admit that I've found all this a little overwhelming, and feel a little anxious, particularly about the tumours, but I'm pleased to have found a forum like this.
Genevieve189
 
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Joined: Sat Feb 20, 2016 9:38 am

Re: suggestion... how about introducing ourselves??

Postby Thumps » Sat Mar 19, 2016 5:05 pm

Welcome :) Hope you find the forum useful. Do ask any questions you would like in a new thread!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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