New member needing support

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New member needing support

Postby violet2222 » Tue Jan 16, 2018 1:10 pm

Hi everyone,

I've just joined the forum and have been reading some of your positive comments which is just what I need to hear right now, my son is 15 and was born with kidney disease and up to a year ago his function was at fifty per cent and has now dropped to 25 as he is going through puberty, we have been told they expect this to drop further in the near future until he has finished puberty and will need a transplant at some point, he is having monthly hospital appointments to check for change. We have always been told that this would happen at some point in his life but I never expected it this soon, if you have any positive experiences and stories to share, as a worried mum I would love to hear them. Thanks. Nicola
violet2222
 
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Re: New member needing support

Postby wagolynn » Tue Jan 16, 2018 4:48 pm

Hi violet2222,
From what you have posted, it looks as though your son is being well looked after from a medical point of view.

I know, it is easy to say but try not to worry, short of a dramatic breakthrough in renal medical research, he will eventually have a transplant, this is a well practiced procedure these days, like any operation there is a risk but this risk is very low, probably lower than normal life risks.

If you can, try not to pass your worries on to your son, so he can have a, 'normal' life, post transplant rather think he is an invalid, OK he will have some medication but otherwise very few restrictions.

At the moment, unless advised otherwise by the medics , he needs a healthy diet to keep him strong, and healthy for the future.

If you have read some of the posts, you will have seen most people who have transplants can get on with life.

Best wishes.
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Re: New member needing support

Postby wagolynn » Tue Jan 16, 2018 4:48 pm

Hi violet2222,
From what you have posted, it looks as though your son is being well looked after from a medical point of view.

I know, it is easy to say but try not to worry, short of a dramatic breakthrough in renal medical research, he will eventually have a transplant, this is a well practiced procedure these days, like any operation there is a risk but this risk is very low, probably lower than normal life risks.

If you can, try not to pass your worries on to your son, so he can have a, 'normal' life, post transplant, rather think he is an invalid, OK he will have some medication but otherwise very few restrictions.

At the moment, unless advised otherwise by the medics , he needs a healthy diet (like the five veg or fruit per day - Google five-a-day) to keep him strong, and healthy for the future.

If you have read some of the posts, you will have seen most people who have transplants can get on with life.

Best wishes.
Last edited by wagolynn on Tue Jan 16, 2018 4:58 pm, edited 1 time in total.
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Re: New member needing support

Postby SKM23435 » Thu Jan 18, 2018 7:24 am

Hi Nicola,,

Isn’t it tough being a parent.
I agree with Wagolyn. You can’t change the situation but you can be supportive (which I’m sure you are) for your son.

If you look at this site you will see people who had transplants 20-30 years ago. They have had families, travelled, done sporty things lived a relatively normal life. They tell us a transplant is a treatment not a cure, which is true but it is pretty brilliant. Treatments are improving all the time.

Dialysis will be tough for a teenager. It marks them out as different from their friends. Again there are people on here who started dialysis in their teens. It’s a matter of hanging in until a kidney is available.

Welcome to the forum. I hope we can be supportive and helpful.
Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: New member needing support

Postby JMan » Thu Jan 18, 2018 2:14 pm

violet2222 wrote:Hi everyone,

I've just joined the forum and have been reading some of your positive comments which is just what I need to hear right now, my son is 15 and was born with kidney disease and up to a year ago his function was at fifty per cent and has now dropped to 25 as he is going through puberty, we have been told they expect this to drop further in the near future until he has finished puberty and will need a transplant at some point, he is having monthly hospital appointments to check for change. We have always been told that this would happen at some point in his life but I never expected it this soon, if you have any positive experiences and stories to share, as a worried mum I would love to hear them. Thanks. Nicola


Hi Nicola,

Its perhaps one of the toughest times to have CKD when going through puberty, given in a few years they may be talking about transferring him to adult care. This transition period is often difficult for teens as there are likely to be a very different clinic format, and less time for doctors to see you. The main thing is he DOES make appointments and take meds, and works up a good rapport with the team. Its a bit like him suddenly being in charge of a company. Some members of the team are harder to deal with than others, and he's still got to be the boss, with support from the family of course.

He's likely to be questioning 'why me' a lot, as well as perhaps thinking he can cut corners with care etc.. Its vital he understands in the long term that doesn't work.


You might want to direct your son to the YoungNKF.. https://www.kidney.org.uk/youngnkf/

https://www.facebook.com/YoungNKF/

It depends if he's in the mentality to 'get involved' or.. I want to be normal right now. Its important he tries to keep his social life going, but be aware other teens sometimes find it difficult to understand CKD. Its probably the least well known condition in terms of public awareness.

Having had kidney problems most of my life and having been through that 'transition' stage, I know how difficult it can be.

Kidney CareUK also offer support in the way of financial support and counselling for individuals and family. Sometimes a neutral person to 'vent' to is very beneficial.
https://www.kidneycareuk.org

Going back to your post, a transplant without the need of dialysis is generally thought to be the best way forward especially for younger patients, but again the team will have to discuss with your son and yourself. Unfortunately younger patients do struggle with the vital daily routine of taking transplant medication and side effects of medications. So the team will want to be certain he understand the risks and his responsibilities IF he gets a kidney.

Best of luck.

J
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
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Re: New member needing support

Postby Chris Wright » Sun Jan 21, 2018 3:24 pm

Violet,

Every story is different but it may help if i tell mine.

I was a bit older than your son when i was first diagnosed with renal failure, i was about 19 and it was way back in 1979. My Mum was in the consulting room with me when we were told and clearly it was a bigger shock to her than me. As a father with two children in their early twenties, i can now appreciate the fear and stress and strain parents go through when their children are ill. It can't be great for you.

I went into end stage in May 1981 and needed dialysis at that point. I didn't really enjoy dialysis but was lucky to have a very supportive girlfriend at the time and so we made the best of whatever free time we had.

I was transplanted in Sept 1981. The operation itself was remarkably straightforward as was the first month with my new kidney. 10 days on my release from hospital i ran up the stairs from Guy's to London Bridge station, feeling better than i had for months.

There of course were a few complications and minor rejection episodes and many many trips back up to Guy's.

However i eventually only needed to go monthly, the rejection episodes stopped and i managed to get a job. That was about March 1982.

During the next few years i competed at the Transplant Games and represented the UK at the Transplant Olympics in Athens, Innsbruck and Amsterdam.

I eventually married, had two kids of my own (clearly the wife helped!) and have been reasonably healthy since. I am now over 36 years transplanted and have led a lucky and healthy life.

When i was done, the process was only just past the experimental stage and the drug regime was crude. Everything is far better now.

I hope everything works out for you and your son. You, particularly, will find it stressful. If he is lucky and is like me, he'll just take it on the chin and go for it.

Thinking of you.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
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