Thinking about getting a port, share your experiences!

[afidz]

I have one semi good vein left, so as the title suggests, I think I am going to ask for a referral for a port. I talked to a friend with MS that has a port and she said it is the best thing a sick person can have. I was worried about the scar because I scar very easily. I am worried about infection because I get infections super easy. But I also don't want to have no usable veins by the time I am 30. Everytime I am in the hospital nowadays I end up with a pic line, and I hate getting them now after having a terrible experience a few times ago. So a port just makes sense to me.
So please, share your experiences, good and bad. I want to make an informed decision.

 

[Jennifer]

If you're constantly needing a pic line then I'd opt for a port especially since you're getting Remicade right now. I had one when I was a kid for a year and the only issue I had was with the adhesive on the back of the tegaderm dressing covers. I scratched it a lot in my sleep causing me to pull out the port one time and needing to get it reinserted. My nails were kept trim/filed down and they had more padding put on top after that. I'm sure there's better methods these days since this was a couple decades ago plus not everyone has that reaction to adhesives. I think people have theirs flushed once a week now when back then it was flushed twice a day. I also had the dressing changed daily but I'm not sure how often it needs to be changed these days. Good luck if it's something you decide to do.

 

[afidz]

Goes to show you how far science has come! Its actually all completely under the skin now, the only thing you can see is the scar from the incision where they put it in. The person I spoke to about it says that if its not accessed after 4 weeks then it has to be flushed but thats the only maintenance it needs

 

[FrozenGirl]

I don't have one but I am nearing the point of wanting one. The only reliable decent vein I have Is In my elbow bend which is uncomfortable and cuts off whenever I bend my arm. My other veins are getting worse as I use them more and more. I will be watching this thread to hear about others experiences.

 

[afidz]

I am really surprised that no one responded. Was hoping to get some valuable advice.

 

[FrozenGirl]

Unfortunately it seems there aren't really an active members with one. I know I did some searches but most I found were very old posts and the members aren't on here anymore. I too would really like to know about them. Hopefully someone will jump in soon.

 

[afidz]

Well, I think I'm going for it. Going to ask my rheumatologist the next time I have an infusion. If I do end up having my hernia fixed at the Cleveland clinic, one of the surgeons techniques is to reopen the incision twice a week for a month to slowly fix the abdominal wall. I wouldn't have any veins left after the first week!

 

[FrozenGirl]

I hope it works awesome for you. Come back and tell me how it is going.

 

[GI Jane]

Well, I think I'm going for it. Going to ask my rheumatologist the next time I have an infusion. If I do end up having my hernia fixed at the Cleveland clinic, one of the surgeons techniques is to reopen the incision twice a week for a month to slowly fix the abdominal wall. I wouldn't have any veins left after the first week!

Would love to know your long term experience on this.