Transitioning

[Cheryl Biermann]

In an effort to prepare long-time renal patients/dialysis patients to the adult world, our hospital is coming up with a transition plan.  Nathan is part of this even though we hope to get a transplant.  We all figure he will need to be prepared to take care of that new kidney.

 

Things he is doing well, learning his medication names, doses and what they are for. Even getting his own pills out and taking them.  For the first time ever, he is finally learning to swallow pills and not chew them!  Just the tiny ones for now, Sensipar and his Rena-vite.  I am also overseeing his drawing up of liquid meds and taking those.  He is good at reciting how to unhook himself in case of a natural disaster, and where to go while at dialysis, but during a practice run with a mock dialysis catheter, not so well because of his motor skill problems.

Things we are not doing so well on, eating, (to get off that pump!), and too much fluid on the  weekends.  Although, that, he is doing better with.

 

Other things they are doing is to have a notebook and the nurses pose questions about things like, "How do you feel when you are with your friends and food and drinks are flowing freely?"  Just questions to get them thinking.

 

Yesterday, they asked Nathan to write about all the things he could remember about his medical, (they said high-lights, but I'm sure that Nathan thinks they are low-lights!)  I was surprised at how little he remembered in that context, because he will often bring up some event from the past and talk about in in great detail with a lot of accuracy!

 

I think this is a great program, (probably because I saw the results of too many kids who never learned any of this, just relied on others and never saw optimum health.  Maybe this is something

that will helpful to others too.

[Jessica Olivia Frysz]

I think this is a great way to get kids to be independent as well as being a part of their medical care. Where I was being dialyzed originally, they didn't have a program like this, but my team worked very well with me to make sure I knew what was happening and they even allowed me to be a part of their side as well, such as setting up machines and stuff, and now, I an in an adult dialysis center, where I have to be my own advocate, but I have managed to stand up for my rights as a patient as well as stand up for what I think is not right...such as which meds are to be given and which are not to be given, so on...it's not easy to be in the adult world when it comes to dialysis, because all they want to do is treat everyone the same, but if you know your body, and what needs to happen, then it can be a WHOLE lot easier, especially with a few bumps in the road.

 

My parents often got me involved early with my medical care-made sure doctors would talk to me, instead of just them about what would be happening to me.  And, it helps when you have a set schedule to take medications, that way he knows when to take them and why he has to take them.

 

So, I truly think that a program like this is a great way to get pediatric dialysis patients involved with their care, as well as teaching them to be independent, which is always a plus and this program doesn't have to necessarily be geared towards just dialysis patients, because when he gets a transplant, he's going to need to know what meds he's taking and when to take them and so on.

[Cheryl Biermann]

Good points, Jessica.

[Colette Ann Frysz]

Cheryl Biermann said:

Good points, Jessica.

[Colette Ann Frysz]

I think having a transition seminar would be a great thing for dialysis patients going from a pediatric unit to an adult unit.  Jessica and I have had our ongoing battles with her adult unit.  They could take lessons from a pediatric unit.  Unfortunately many of the patients served in an adult unit are elderly or older and are very naive about dialysis in general and they also do not know how to ask questions and how to advocate for themselves.  Since being in the adult unit Jessica has advocated for her own health.  I've stepped in on occasion when she was coming ujp against a brick wall.  Sometimes we've had to use some less than up front tactics to make our point clear not only to the unit but to her doctor.  There are so many things different that if a patient were prepared ahead of time they will succeed in their own care.  Jessica does a great deal for herself but on occasion needs extra assistance.

[Cheryl Biermann]

It is important to educate the children going into adult facilities, but wouldn't it wonderful if adult facilities took a long, hard look at the hospitals that care for children as well?  When my mother was in the hospital a few years ago, they wouldn't even give her her lab results-now isn't that a bunch of nonsense?  The health-care facility told her, wel!l even if we do give you those results it won't mean anything to you-well of course not-isn't it your job to teach us what the results mean?  As the pediatric patients age out of hospitals more and more and are taught to fend for themselves; I believe you will see things to begin to change; but it's you guys already in the trenches who are the people who will make that happen, so to you I say thank you!