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Margaret

Power port

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Hi Everyone,

 

It's been awhile but I wanted to let you know that they finally decided it was time to give Gareth a port, surgically installed today with no problems.    :yes:     

 

His veins are getting harder and harder for the IV team to get the needles in each month for his IV Ig infusion. 

They are going further and further up his arm, along with 2-3 attempts/rooting around.  Needless to say, he's 

not been too happy the last couple of times when getting his infusion.   :wink:   Hopefully, this will help each month.

 

Weight loss has stabilized at 35 lbs; no reason as to the cause.  Heart checkup two weeks ago was normal.   Yearly eye exam, because of Plaquenil, was normal.  Thyroid blood work is all normal.

 

What a spring! 65-70 degrees all last week and 30 and snow showers yesterday.  The willow bush is in full bud and hydrangea bushes are starting to bud out, too!!  

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

Hopefully, a port will make Gareth's infusions much easier to administer and anything that improves his quality of life has got to be a bonus. All the best people have a port! :wink::yes:

 

I'm so pleased to hear that his weight has stablised and that he has had normal readings on his various checkups. I do hope that this will continue, with no more hiccups. :happy-dance-birds: 

 

The spring weather is unpredictable here in the UK as well; plenty of rain (but that's fairly usual) and actually it was jolly cold as well today.

 

Best wishes to Gareth. :hug-bear::hug-bear:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Margaret,

 

It sounds like that is good news, all around, for Gareth!  Isn't it delightful to get some good news, for a change?

 

I had to laugh at Jo's comment, that all the best people have a port.  As she knows, I had to have my first port removed, and a second port put in, last week. My first one got a fibrin clot that couldn't be dissolved.  What I learned from that is that at the very first sign of a port not functioning beautifully, like not getting blood return or needing to try several different positions or needles for access, it's a sign the port needs to be checked by interventional radiology (IR). 

 

They can instill a medication into the port to easily dissolve the clot, which is simply a build up of scar tissue. But, I didn't know that, and I waited way too long to report the issue, so the usual "draino" didn't work. My new port works like a charm!  Gareth will learn to love love love the port. It is a zillion times better than getting poked all over, and so much more comfortable.

 

I'm glad his weight loss stopped...and that he didn't have to give up every good food known to man in order to make that happen!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley, thanks for the head's up for fibrin clots.  

 

I do know that I won't have to worry about flushing it since he has to go in every 4 weeks for the IV Ig infusion.  The nurses have already told me they will be keeping it flushed and cleaned monthly.  The stitches will come out in two weeks and the following Wed, he will have his monthly treatment, so it will be interesting to see how he does with it.  

 

Take care, Everyone.

Margaret

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