Port Problems Anyone?

[Guest guest]

Hi to one and all....

Hope the summer is being relatively kind to everyone. We've been

blessed with lower than usual temperatures here in the Central Valley

and have been enjoying mid 90's rather than 110's. We spent the

weekend over in Monterey where my 7 year old twin boys slept " with

the fishes " at the Monterey Bay Aquarium. Thank goodness my Aunt

slept on the floor with them and I stayed in a motel with my husband

and our 4 year old. It would have been better was I not trying to

recover from my adventures last week.......

As I have shared previously I use Remicade to help control my disease

and have my infusions every 4 weeks. With the frequency of the

infusions a medi-porti is essential in getting the meds in

efficiently and without vein issues. My ports have been a drama since

day one.... the first one was placed rather low (almost in my left

breast) and the catheter came loose after about a year. My second one

was placed in January and in June it too blew a hole.... in between

the round port-part and the vein entry in my neck. So last Thursday

following a week of " low potassium panic " they put me to sleep to

take out the broken one and insert another one. Well.... the surgeon

couldn't get in a new one. He said it was due to my " thick " neck

(code for " fat " ) and how puffy I was. Well of course I was puffy, in

the course of trying to get the potassium levels up, I gained 17

pounds of water. No not exaggerating, 17 pounds of water. So now I

look as though I went a few rounds in the ring, from the five large

bruised areas trying to start an IV to the staples and bruising on my

chest looking for a port entry. I am very frustrated and wondered if

anyone else has had any problems with getting a port and keeping one

functioning? They tell me other people's work great for years......

Now on Tuesday I go to get a referral for a vascular surgeon (anyone

have any more info on this speciality?) who may or may not be able to

place a port.... which means going out of the area to SF or

Stanford.... a problem with little kids in school. Life is always one

challenge after another isn't it? In the mean time next Remicade will

be in August, and a gamble without a port and veins that got a work-

over from the nurses last week. Do you guys know if your veins heal?

I had one really good one and now it's got scar tissue and is not

accessible.....is it possible it might get better?

Well that's it for my questions, as always thanks for replies and info!!

Take Care and Hugs all around,

in California.