The Chronicles of a Teenage Dialysis Patient

[iKAZ3D]

Consider going to Camp Independence, a one week (July 21-26) camping experience for kids 8-18 who have renal failure.  I was involved with the camp when it first started as a special program of the National Kidney Foundation of Georgia in the late 1970s.  It is now a part of Children's Healthcare of Atlanta.  Older teens (15-18) are especially welcomed.  It is an amazing experience and I think you would have a lot to offer.

While application deadline was May 8, there are still spots available.  Call Stephanie at 404.785.0631 for info.

Here's the web site:  http://www.choa.org/Childrens-Hospital-Services/Transplant/Family-Support-Services/Programs-and-Events/Camp-Independence

Application:  http://www.choa.org/Childrens-Hospital-Services/Transplant/Family-Support-Services/Programs-and-Events/~/media/CHOA/Documents/Services/Transplant/Events/Camp%20Independence/Camp-Independence-Camper-Application-2013.pdf

My Children's hospital has a Camp called Camp ChiMer that will be around the same time.

[noahvale]

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[iKAZ3D]

My Children's hospital has a Camp called Camp ChiMer that will be around the same time.

Yes, I see that Camp ChiMer is from July 28-August 1, a couple of days shorter than Camp Independence.  Have you attended in the past?  One of the reasons I suggested Camp I. is it would be more like a vacation in a different part of the country.  You would also be meeting new kids your age with same experiences.  Have you gotten away from home much for any extended period of time?  A change of scenery for a while could be really good!  Plus, there's no reason you can't go to both!

I have gone to it for the past 2 years? I think. No, I haven't been anywhere out of state for an extended period of time since I went to Myrtle Beach in 2009 (Before Dialysis).

My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers. My mom's gone to Florida about 2-3 times (can't remember how many) since then and my Dad's gone to Pennsylvania a couple times.

Nope...I'm homebound. I've been "promised" vacations.

Yeah right.

I want to go to Europe. Doubt that will happen.

[Rerun]

You can't be calling the other kids "retards" or they will send you home!

                         

[iKAZ3D]

You can't be calling the other kids "retards" or they will send you home!

                       

 

I don't/didn't do that.

It. Was. An. Inside. Joke. 

Retarded Seal. Arf Arf Arf.  Arf Arf Arf. Retarded Seal.

[noahvale]

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[MooseMom]

My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.

Your parents don't have to do any scheduling.  That's your clinic's social worker's job.

If you were to go on a vacation with one of your parents, where would you want to go?

[iKAZ3D]

I have gone to it for the past 2 years? I think. No, I haven't been anywhere out of state for an extended period of time since I went to Myrtle Beach in 2009 (Before Dialysis).

My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers. My mom's gone to Florida about 2-3 times (can't remember how many) since then and my Dad's gone to Pennsylvania a couple times.

Nope...I'm homebound. I've been "promised" vacations.

Yeah right.

I want to go to Europe. Doubt that will happen.

Well then, really look into Camp I.  Might not be the perfect "vacation," but at the least you'll be able to get a break from your parents!  Give Stephanie a call on Monday.  Can't hurt.

Well, I'll have to next year. My sister is coming down, so I'm already missing valuable time with her by going to Camp ChiMer. In fact I might even cancel. My (half) sister is the most understanding of all. She's always there for me and I love her to death!

[iKAZ3D]

My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.

Your parents don't have to do any scheduling.  That's your clinic's social worker's job.

If you were to go on a vacation with one of your parents, where would you want to go?

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA

Children's Mercy? Do work? No no no, you must be mistaken. Most things are supposed to be our job to do.

[MooseMom]

Well, that's really crappy.  I'm sorry to hear Children's Mercy is such a waste of space in this regard.  That must be really frustrating.

What do the other kids do?  Do they ever get to go on vacations?

[iKAZ3D]

My parents refuse to attempt to try to work in vacations with me so that they don't have to worry about scheduling Dialysis at other centers.

Your parents don't have to do any scheduling.  That's your clinic's social worker's job.

If you were to go on a vacation with one of your parents, where would you want to go?

My Choice?

1. Italy
    - Rome
    - Venice
    - Countryside Vineyards & Mountains

2. Sydney, Australia

3. Berlin, Germany

4. London, England

5. France
     - Paris
     - Monte Carlo
     
6. Monaco

7. Seattle, Washington

8. Los Angelas, California

9. New York City, New York

10. Dublin, Ireland

11. Honolulu, Hawaii

12. Moscow, Russia

13. Toronto, Canada

14. Athens, Greece
     + Crete

15. Hong Kong, "China"


I'm expensive! This is my wish list.

[iKAZ3D]

Well, that's really crappy.  I'm sorry to hear Children's Mercy is such a waste of space in this regard.  That must be really frustrating.

What do the other kids do?  Do they ever get to go on vacations?

I don't pay attention.

[noahvale]

Well, that's really crappy.  I'm sorry to hear Children's Mercy is such a waste of space in this regard.  That must be really frustrating.

What do the other kids do?  Do they ever get to go on vacations?

Well, that's really crappy.  I'm sorry to hear Children's Mercy is such a waste of space in this regard.  That must be really frustrating.

What do the other kids do?  Do they ever get to go on vacations?

Background:

The vast majority of dialysis centers are not set up to meet the unique needs of adolescent esrd patients.  That's why kids are treated at pediatric medical centers
until reaching 18 years of age.  And, over 70% of esrd adolescents under 15 are on PD.  It is the preferred form of treatment for younger teens and especially infants/small
children because of the difficulties in maintaining vascular access.  Also, the more lenient fluid/diet restrictions with PD than hemo is important in the physical development of
kids during their growing years. 

Another reason for greater utilization of PD in younger patients is, unlike conventional dialysis centers, there aren't pediatric facilities on every corner.  Many kidney kids live
long distances from pediatric ESRD centers, making it prohibitive to travel to them 3 times a week. 

I'm not saying the SW at Children's Mercy isn't lazy, but it is quite difficult for adolescents on hemo to find transient dialysis.  That's why so many "kidney kamps" have been
started over the years.  They do provide all forms of esrd treatment for kids.  At least it can be one opportunity for them to get away for a while and also be surrounded by
others like themselves.  I attended Camp Independence both as a volunteer and NKFG staff member when on hemodialysis during my late 20s-early 30s. 
It was an amazing and powerful experience watching and interacting with the kids.

[CebuShan]

May I suggest that you add Helsinki, FINLAND to your list? It is just beautiful. It is also the home of Nokia.