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

[Guest guest]

Thanks anyway Tracey...

From: traceyincanada <traceyincanada@...>

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

Date: Friday, January 1, 2010, 3:55 PM

 

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]

Hi Sue

My sister has a port for her chemo treatments-it is on her stomach. It does

not bother her at all (once it healed) but what I would do is ask the dr. if

they can put it somewhere else on his body. Or at least see if the Dr or

nurses have any ideas.

I am sorry to hear about your son and I totally understand not wanting to

take away one of his pleasures, his guitar. I am sure the Dr. could put it

somewhere else..

Sharon T

_____

From: [mailto: ] On Behalf Of

traceyincanada

Sent: Friday, January 01, 2010 7:56 AM

Subject: [ ] Re: My son, need advice about implanted port (unusual

post!)

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

--- In groups (DOT) <mailto:%40> com, sudubo@...

wrote:

>

> 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]

Thanks for your reply Sharon...I hope your sis is doing well.....

 

I had asked the surgeon to place it, if possible , on the right side of his

chest because of the guitar strap on the left side.......He said he wanted to

put it into his Left Subclavian and so it was optimal to be on the left

chest...ugh...

 

I'm thinking of maybe some sort of cushion around the strap.....don't know....

 

The surgeon said he hopes it will be in place for a few years!     thanks

for any ideas.....Sue

 

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Re: My son, need advice about implanted port (unusual

post!)

Date: Friday, January 1, 2010, 4:52 PM

 

Hi Sue

My sister has a port for her chemo treatments-it is on her stomach. It does

not bother her at all (once it healed) but what I would do is ask the dr. if

they can put it somewhere else on his body. Or at least see if the Dr or

nurses have any ideas.

I am sorry to hear about your son and I totally understand not wanting to

take away one of his pleasures, his guitar. I am sure the Dr. could put it

somewhere else..

Sharon T

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

traceyincanada

Sent: Friday, January 01, 2010 7:56 AM

groups (DOT) com

Subject: [ ] Re: My son, need advice about implanted port (unusual

post!)

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

--- In groups (DOT) <mailto:% 40groups. com> com, sudubo@...

wrote:

>

> 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]

Dear , thank you so much for your thoughtful response....and from your

perspective that really helps.

 

e actually already sees an OT and PT once a week for therapy, he has motor

delays and chronic pain, and low tone upper body/spasticity lower due to a

syrinx at T4-T12.  They work with him for the chronic pain, he is on Baclofen

and Methadone.

 

You gave me a great idea, I will bring the guitar and strap Wednesday to his

therapy and let those professionals put their heads together and brainstorm and

come up with a solution!  Thank you so much for this....   many hugs and much

gratitude!...sue   p.s.  i'll let you know what they come up with....

 

 

 

From: hey00nanc <ncogan@...>

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

Date: Friday, January 1, 2010, 7:57 PM

 

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.

[Guest guest]

Hi Sue, I have had a port, right side since 2002.  I have worked out, done

water aerobics, never had a problem.  But, I do not play guitar!   But my son

plays guitar, and I would suggest you line his guitar strap with soft lambs

wool, and that might solve his problem.  Don plays with a very wide leather

strap he made himself, it is real soft, and I think if you padded something like

that with fake lamb's wool, it may do the trick.  Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: hey00nanc <ncogan@...>

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

Date: Friday, January 1, 2010, 2:57 PM

 

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.

[Guest guest]

Bobby, Thank you SO much!  Great ideas, the leather strap would be softer, and

also we have a fake lambs wool seatbelt cover, what a great idea!!! Thank you so

much,  Bobby!   

 

many hugs.....Sue

 

From: hey00nanc <ncoganuoregon (DOT) edu>

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

groups (DOT) com

Date: Friday, January 1, 2010, 2:57 PM

 

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.