TJ903

Absorption of meds problems

8 posts in this topic

My skin is so tight that they cannot get a needle in- thank goodness for the port. However this is my second port, the first one became useless after the sclero warped it's position and it got infected. Seems my new one is headed for the same outcome. On my last flush, the could just barely get a blood return and after the labs were done, my skin had closed around the needle making it hard to withdraw. The nurse was beside herself. Any new ideas or options out there that I can draw upon?

 

Sorry for the numerous postings- I have an appointment at Johns Hopkins on Tuesday and want to get all of my questions in order.

 

Many thanks and tons of warm hugs to everyone!! TJ903

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Hi TJ,

 

I'm sorry to hear of your difficulties. It sounds miserable! I don't really have anything to suggest, but once the time zone difference lets me, I'll speak to a retired RN friend who has a lot of experience in ports, etc. and see if she has any suggestions.

 

Good luck with your appointment on Tuesday!

 

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Sorry TJ903, I can't help with your questions...but I want to wish you good luck with your upcoming appointment. Let us know how it goes. Take care! :)


Sending good wishes your way!

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I don't know an answer to your question, but I just wanted to let you know that you will love Johns Hopkins. Are you going to the Scleroderma Center? I see Dr. Saleh, rheumatologist at Good Samaritan. Of course, now my insurance is saying they won't cover my visits because it's out of network. Hopkins will get you straight.

Nan

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TJ,

 

So sorry for what is happening to you. It all sounds so painful. There are many different types of lines or ports that can be used. A scleroderma specialists would probably know more about what type would better for you or a good Nurse like Jeannie's friend. Hope everything will settle down soon for you.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi TJ,

 

I'm sorry it has taken so long for me to get back to you. I'm still polling all my nurse friends. So far they seem to think that possibly changing needle size or type might help with accessing your port, but no ideas on how to keep the port itself from shifting because of your skin tightening.

 

Today's your appointment at Johns Hopkins, isn't it? Will you let us know how that's gone? Did you have a chance to ask about the port, and if so, did they have any helpful suggestions?

 

Best wishes and warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi TJ,

 

I'm so sorry to read of the problems you have had to endure, due to the thickness of your skin.

 

When my skin became taut, I hadn't yet been diagnosed with Scleroderma.

Being faithful about flu shots each year, I was due again. The nurse giving me the flu shot remarked,

"Your skin is just like elephant's skin...I can hardly get the needle through the skin"!

 

Since, I have had many labs done and they have always used a butterfly setup on me.

Also, while I was having to inject methotrexate sub-cue into my thighs, I used the finest needles.

 

I don't know if this will help with your situation at all. But if it would, it would sure be nice for you to

not have to use a port any longer.

 

Please take care and let us know if you can find an alternative method.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi TJ,

 

The consensus of opinion is that you ought talk to the nurses in the oncology department of your hospital. Apparently they are the experts at placing and keeping ports running well (all those chemo patients). It's a good idea, once you think about it.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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