Younger patients?

[JW77]

Although statistically the majority of CKD is with older people, this is a question for the younger patients, under 40.

What support or activities does your unit/hospital provide, and if it doesn't what would you like to see?

[Rerun]

Well, I was under 40 once and they didn't provide anything.  They had a potluck in the summer but it was depressing with all the walkers and oxygen trailers.  You just have to do what you like to do and go meet normal people there.

[cassandra]

I spent 10+years being under 40 on D and have never heard of any support aimed at that age group. I have never heard of any age group getting support provided by hospitals or units

[iolaire]

I would like to see more statistics on the younger crowd.  Things like dialysis longevity statistics look extremely biased when they include people who are very elderly when they start.  For example if you are 85, a male is looking at a life expectancy of 5.81 years, versus females at 6.87. So to kluge someone's dialysis life expectancy in with the 85 year olds is almost meaningless.  (http://www.ssa.gov/oact/STATS/table4c6.html)

[justagirl2325]

My husband is 43 (close to the under 40 lol).  They do provide a bit of support.  The home hemo program has two dedicated nurses and likley only 10 patients or so at any given time.  So they will help him arrange dialysis on the road when he's working and can't get home, or for pleasure travel and a lot of listening to our concerns and fears.

[Michael Murphy]

Its not the patients under 40 I feel sorry for but the patients who have been on dialysis since they were children.  I started when I was 61 and had had a pretty good life so far.  But I feel bad for the ones who have only known dialysis for them I can only hope and pray that the oncoming technology makes this less of a burden.

[kristina]

... When my kidneys first failed I was only a little over seventeen ...
... Fortunately I could avoid dialysis at that time because my kidney-function recovered a little,
but from then on I had to take great care of my kidney-function with a carefully worked-out vegetarian diet and other precautions ...
... There were no late nights and hardly any parties for me and my situation,
caused by my frail kidney-function, felt sometimes a bit isolating...
... My top-priority at that time was to finish College and then to study Philosophy and Literature at University...
... I completely concentrated on that and in doing so it helped me to get over the shock of my kidney failure and change of life-style
in order to keep my kidney function going for as long as possible...
I am not sure if it could have helped me to have any support at that time because I first had to get myself to the point
of accepting and facing my fragile health and resulting new life-style-situation...

[JW77]

Thanks for all your feedback.  Seems perhaps that the UK, and Europe  is leading the way. on this one.

http://www.ekpf.eu/ceapir-2-0-youth-in-action/

http://www.kidney.org.uk/youngnkf/

https://www.facebook.com/groups/524969824300628/

[Bungarian]

Although statistically the majority of CKD is with older people, this is a question for the younger patients, under 40.

What support or activities does your unit/hospital provide, and if it doesn't what would you like to see?

I was 44 when I started and was not treated differently.

[Simon Dog]

I would like to see more statistics on the younger crowd.  Things like dialysis longevity statistics look extremely biased when they include people who are very elderly when they start.  For example if you are 85, a male is looking at a life expectancy of 5.81 years, versus females at 6.87. So to kluge someone's dialysis life expectancy in with the 85 year olds is almost meaningless.  (http://www.ssa.gov/oact/STATS/table4c6.html)

Similarly, I expect diabetes would reduce life expectancy.  What is needed is a tool like the KDPI calculator where you plug in various numbers and factors and it spits out a semi-useful number.

[Michael Murphy]

Emory University has app that asks sex, race, age, some medical conditions and gives you one year and three year survival chances.

[RenallyChallenged]

Started when I was 17, and we didn't get anything special to keep the time going. Well, whenever I dialyzed at the hospital, they did have a little Playstation that they could roll into the room, but they had kind of swiped that from the children's hospital for me. So, it wasn't really something they did on a regular basis.

[JW77]

Feedback

You can listen to the transcripts from the event here: http://www.kidney.org.uk/about-us/conference/nkf-annual-patients-conference-2015-presentations/

The last 2 on the list are regarding transition and the observations from a young patients perspective.


Please share with others if you think they may find it useful.

Cheers

JW:)

[smcd23]

My husband just turned 31, we have a 6 year old. They offer nothing. In fact, sometimes I have to school the social worker on things because she seems to forget that he has a life and family outside of dialysis and wants to be and stay active and not head back to the nursing home/assisted living, maybe grab an early bird dinner special and go to bed. It's actually a fight to get them to recognize he isn't available to come in anytime, wait forever etc. And they definitely don't plan anything.

It's the night before Halloween and I think the staff asked him to wear a costume tonight, he didn't. But I also think that was the nurses trying to have some fun because they are closer to his age than the rest of the patients.

Aside from him, there is a girl who is probably in her late 20s early 30s and one other guy under 40 in his unit that he is aware of. The rest are old.

[kristina]

P.S.
I don't think age is connected to how people act ...
For example: in "our" centre there is "a very old boy", who is very lively and great fun to listen to
and my husband and I always look forward to listen to his witty jokes and tales,
which can be heard everywhere in the dialysis-centre
because he tells them in his wonderful very deep (Welsh) voice ... 

[cassandra]

I would like to see more statistics on the younger crowd.  Things like dialysis longevity statistics look extremely biased when they include people who are very elderly when they start.  For example if you are 85, a male is looking at a life expectancy of 5.81 years, versus females at 6.87. So to kluge someones dialysis life expectancy in with the 85 year olds is almost meaningless.  (http://www.ssa.gov/oact/STATS/table4c6.html)

I don't think anybody can tell you, or give you any sensible info about longevity from young D patients anyway. D only became available to 'not rich' people in '67 in The Netherlands. When I started in '83 I remember the stats said starting at the age of 18 would not see me living longer than 40. I'm 50 now, doing okay. I know a lot of people my own age who started D with me have died, but some are still 'here'.

The medical world changes fast, in '83 there was no EPO for example, HDF nor satellite units

[Riki]

I started dialysis for the first time when I was 12 years old, and the nurses found lots of stuff for us to do while we were on.  None of us were on hemo longer than 2 hours per treatment, and sometimes we had school work to do while we were on, other times, the nurses would play games with us.  There were only 6 chairs, and there were 4 nurses, so there was lots of one on one time.  I only did hemo for a week, so my memory might be a bit sketchy, but that's how I remember it.  My treatments after that were all PD, when I wasn't transplanted, up till about 7 years ago.  They don't have anyone under 18 in any of the units I go to now, as they are adult units.  There are no children's units in my province, so if they needed hemo, they'd have to leave.

[Bungarian]

I started dialysis for the first time when I was 12 years old, and the nurses found lots of stuff for us to do while we were on.  None of us were on hemo longer than 2 hours per treatment, and sometimes we had school work to do while we were on, other times, the nurses would play games with us.  There were only 6 chairs, and there were 4 nurses, so there was lots of one on one time.  I only did hemo for a week, so my memory might be a bit sketchy, but that's how I remember it.  My treatments after that were all PD, when I wasn't transplanted, up till about 7 years ago.  They don't have anyone under 18 in any of the units I go to now, as they are adult units.  There are no children's units in my province, so if they needed hemo, they'd have to leave.

The staff at my clinic are very busy with patients. They don't have time for anything else.

[JW77]

I started dialysis for the first time when I was 12 years old, and the nurses found lots of stuff for us to do while we were on.  None of us were on hemo longer than 2 hours per treatment, and sometimes we had school work to do while we were on, other times, the nurses would play games with us.  There were only 6 chairs, and there were 4 nurses, so there was lots of one on one time.  I only did hemo for a week, so my memory might be a bit sketchy, but that's how I remember it.  My treatments after that were all PD, when I wasn't transplanted, up till about 7 years ago.  They don't have anyone under 18 in any of the units I go to now, as they are adult units.  There are no children's units in my province, so if they needed hemo, they'd have to leave.

@Riki  I started in Paediatrics as well,  they are specialised and should be.

[Riki]

I started dialysis for the first time when I was 12 years old, and the nurses found lots of stuff for us to do while we were on.  None of us were on hemo longer than 2 hours per treatment, and sometimes we had school work to do while we were on, other times, the nurses would play games with us.  There were only 6 chairs, and there were 4 nurses, so there was lots of one on one time.  I only did hemo for a week, so my memory might be a bit sketchy, but that's how I remember it.  My treatments after that were all PD, when I wasn't transplanted, up till about 7 years ago.  They don't have anyone under 18 in any of the units I go to now, as they are adult units.  There are no children's units in my province, so if they needed hemo, they'd have to leave.

@Riki  I started in Paediatrics as well,  they are specialised and should be.

I think they kept is small for that reason, so that there would be lots of one on one time with the patients.  Most were started on PD, like I was, and only went to HD if they needed to.  I only was on it becauwe of a flipped PD catheter.  They sent away for a specialized catheter for me, and I did HD until it came in, but I have friends who were on HD with me at that time, who are still on HD, with no plans of getting off it any time soon.  One of them voluntarily took himself off the transplant list, after his 4th transplant failed before it even started.. He's been on D for over 30 years.. As it is, if I didn't need to be on HD, I wouldn't be, but I can't do PD anymore..

[ashleyasherman]

I'm 29 now and was 28 when I started dialysis. I do in center hemo and I'm the youngest one that I've seen at my center. They don't really offer anything in terms of a support group, etc. I really love the ladies I sit by during dialysis but it would be nice to have someone to talk to that I can relate to better. My husband and I are very active so my disease definitely affects that sometimes. Most people don't even know I do dialysis because I feel like when I tell someone they treat me different, like I'm not able to do what everyone else can do. All my close friends and family know of course but most people I work with don't know. So yes, it would be nice to have a support group even if it wasn't through my center but just in my general area for young adult on dialysis or living with kidney disease.

[Riki]

I'm 29 now and was 28 when I started dialysis. I do in center hemo and I'm the youngest one that I've seen at my center. They don't really offer anything in terms of a support group, etc. I really love the ladies I sit by during dialysis but it would be nice to have someone to talk to that I can relate to better. My husband and I are very active so my disease definitely affects that sometimes. Most people don't even know I do dialysis because I feel like when I tell someone they treat me different, like I'm not able to do what everyone else can do. All my close friends and family know of course but most people I work with don't know. So yes, it would be nice to have a support group even if it wasn't through my center but just in my general area for young adult on dialysis or living with kidney disease.

A few years ago, there was a younger girl on our unit.  She was about 26.  Unfortunately, she died of throat cancer at 28.  She and I sat next to each other through our treatments.  We would gang up on the nurses sometimes.  There was one male student nurse in particular that we teased pretty badly, but he could give it back just as good.  She and I got pretty close in those 2 years.  We'd go to movies, and she actually dyed my hair once for me.  When she knew she was dying, she told me that she was happy that we were friends, because there were so few people around her, family or friends, who really understood what she was going through, and there was especially no one close to her age that she knew that she didn't have to explain everything to.  I was almost 10 years older than she was, but we related well enough that it didn't matter.  When you talked about not having any real supports, I thought of her, because we were like our own little support group.  I miss her greatly.

[Fabkiwi06]

I'm 29 now and was 28 when I started dialysis. I do in center hemo and I'm the youngest one that I've seen at my center. They don't really offer anything in terms of a support group, etc. I really love the ladies I sit by during dialysis but it would be nice to have someone to talk to that I can relate to better. My husband and I are very active so my disease definitely affects that sometimes. Most people don't even know I do dialysis because I feel like when I tell someone they treat me different, like I'm not able to do what everyone else can do. All my close friends and family know of course but most people I work with don't know. So yes, it would be nice to have a support group even if it wasn't through my center but just in my general area for young adult on dialysis or living with kidney disease.

I'm 27 and I feel you! I do PD now but started in a hemo clinic. Everyone is wonderful to deal with but they don't have too many resources for younger patients. Even the emotional end of things is geared towards people in a very different stage of life, or with far more health issues in addition to the esrd.

And my friends are great, but they don't fully understand why I can't do everything I used to. It's not fun to go out to a bar and watch everyone else drink...