Re: My son, need advice about implanted port (unusual post!)

[Guest guest]

Hi Sue,

Welcome to the group. I'm sorry to hear about your son and unfortunately don't

have much advice to give as I've never experienced a port myself. In fact, I

would say that the vast majority of us have not. The best suggestion I have

would be to try a bone marrow transplant site as I would imagine that they would

have the most experience with ports.

Best of luck,

Tracey

>

> Hi, my name is Sue....first of all let me say that I worked as an oncology

nurse for many years...giving remission-induction chemo, and blood transfusions

and I respect you all for the battles you fight ...

>

> Secondly, I am turning to ya'll for advice about my son...he does not have

leukemia, but has a chromosomal duplication that makes him susceptible to

leukemia. He has chronic severe neutropenia for which he receives Neupogen

three times a week, and immunodeficiency for which he receives IVIG. He is 15,

tiny for his age, and also has Asperger's syndrome, a form of autism - he likes

being alone a lot.

>

> Two months ago he had implanted a mediport...a Bard Slim port...for all the

labs and infusions etc...Well, he likes to hold his electric guitar several

hours each day....he's learning to play, well, let's just say he tries. Anyway,

the strap of the guitar passes right over or alongside the port.....I am worried

that it might displace the port. My son is adament about leaving him alone about

this....this is his biggest joy, but I don't want the constant pressure and

pushing to mess up the port.

>

> Any ideas? Thoughts? Advice how to modify the strap?

>

> I know this isn't the usual discussions ya'll probably have! But I figured

the folks in your group would have lots of experience with central

lines/ports/issues and maybe one of ya'll has an idea.

>

> Any opinions are appreciated!.....With gratitude.....Sue in New Orleans

>

[Guest guest]

My son is adament about leaving him alone about this....this is his biggest

joy, but I don't want the constant pressure and pushing to mess up the port.

>

> Any ideas? Thoughts? Advice how to modify the strap?

__________________________

Hi Sue,

As Tracey mentioned, most of us have been on just pill therapy for many years

thanks to some amazing drugs.

But I do have some ideas as a retired physical therapist (PT). There are some

PTs who specialize in working with musicians....just the fact that he is

holding/playing a guitar qualifies your son. In a single visit or two, a PT

could observe how he wants to play and try to come up with some

modification/padding, etc. to protect the port.

Same would be true for an OT (Occupational Therapist). They are masters at

problem solving for activities of daily living. And either PT or OT could work

with his doctor to see what any limitations are.

In some states you might need a doctor referral to see a PT or OT, or maybe for

your insurance to cover the visit. I feel confident that one of these

professionals could help find a solution if your son would be OK with such a

visit.

C.