PiA hosts this discussion forum as a FREE service to people involved with primary immunodeficiencies.
The purpose of our forum is to exchange relevant health and lifestyle experiences and to provide friendly support to other people who share our immunodeficiencies. The forum should NOT be expected to provide detailed medical advice, as the PiA and its Medical Advisory Panel, is unable to provide accuracy and integrity of the views made here. PiA members who wish to ask specific medical questions may do so through our staff via the telephone or email and they will be helped personally and privately. Posted information and comments do not necessarily represent the views of the PiA.
Remember as always posts containing advertising, soliciting for research and political references are not allowed and will be removed. Continual postings of these types will result in the banning of those individuals. PiA reserves the absolute right to delete any thread or post that we consider to be abusive, inappropriate or out of context with the general aims of the forum as stated above.
Contributors: This is a non-denominational site and all creeds are welcome, and to prevent any of our contributors
feeling excluded, it is our policy to limit references to religious practices to a sensible minimum. Such references are subject to moderation.
As
the PiA discussion forum can be viewed by anyone with internet access, we highly
recommend that contributors do not post personal contact details on the website.
IP/Host: 58.179.112.---
Registered: 4 years ago
Posts: 153
Hi everyone
I am looking for some advice please. The canullation nurses are having trouble finding veins in me, with 2-3 tries by the experienced nurses to get a vein and they are now up to my upper arms, and have suggested I need a port-a-cath, and should talk to the immunologist about it (which I will do). I've read on here strong views for and against port-a-caths, but was wondering how long it took for those of you with port-a-caths until you needed one? Was there any other option? We don't have sub-cutaneous IG available in Australia, and other than a central line which looks like more of a problem than a port-a-cath, is there any other options you know of?
Thanks for your help
Regards
Ann
Edited 1 time(s). Last edit at 03/27/2007 09:57AM by Ann (Australia).
IP/Host: ---.bay.webtv.net
Registered: 4 years ago
Posts: 478
Hi Ann, Fortunatly I have excellent viens,but if I did'nt I would'nt hesitate to get a port. I have been getting infusions now for 3 years,but Ithnk the decision is purely personal. Hugs, Lois
hi ann,
like lois, my veins are really reliable, in fact for many years now i have used the same vein in the same plcae for all my infusions (the crook of my left arm). however if they just need to take blood, or for ANY other reason, i insist that they use another site - guess i don't want old faithful damaged by "amateurs"!!!!
lots of the pia members i speak to from work have ports though, and by and large they're pleased with them. i hear they can rarely become the source of infection though.
so it's your decision, if you have no choice, and i were you, i would go for it!!
you could ask for a sub-cut trial i suppose, sub-cut is often a replacement for people with weak veins.
hope you're well in spite of all this, although i do remember you saying that work was becoming a problem again, so if you're not well, get well soon!!
take care - john
IP/Host: ---.range86-138.btcentralplus.com
Registered: 4 years ago
Posts: 24
Hi Ann,
It will be a year on Tuesday since I had my portacath fitted.Up until then I had been home infusing for 16 years. During this time, I have needed more & more courses of IV antibiotics as well as my weekly infusions. All of this had made getting suitable veins for longlines etc. more & more difficult.I am so pleased that I had my port fitted. It took a few months to get used to getting the needle in at the first attempt, but my husband now has it down to a fine art! I would highly recommend having one fitted.
Hope this helps,
Best Wishes,
Helen
IP/Host: ---.va.shawcable.net
Registered: 4 years ago
Posts: 657
Hi Ann ... subcut is not available in Canada yet either so ivig is the only way to go. I developed problems with my veins about a year after starting ivig. I have been on high dose iv steroids for many years and that has left my veins very fragile. That, along with the repeated ivigs, meant that it would often take 5-6 tries to access a vein. It was very stressful for me and the nurses. Once my dr recommended a port, it took me another 6 months to work up the courage to get on. I am only sorry I waited that long. The port has made things so much easier for me. Its one poke, first time-every time, and I have had no issues with infection etc. It was absolutely the right decision for me.
Barb from BC
IP/Host: ---.range86-132.btcentralplus.com
Registered: 3 years ago
Posts: 3
Hi my name is Andy
I have been on IVIG for over 15years & monthly IV antibiotics so you can imagine how bad my veins were! I used to have long lines put in by cystic fibrosis nurses(although I do not have CF-they were the only ones who could find my veins!!).eventually my veins were so scarred I could not use them & the CF nurses suggested a port-a-cath. At first my immunologist was concerned whether this would be too risky if it became infected but eventually decided that it would be more beneficial for my life long-term.As the port is enclosed beneath the skin & strict aesepsis is required to insert the needle (which my wife has been trained to do) the benefits would outweigh the risks with myself. Overall I have found it has made my life so much easier with treatments which I can now self administer at home & reduce the number of stays in hospital where I tended to pick up more infections! Hope you manage to read this before your appointment as I have only discovered this website today.
IP/Host: 58.179.110.---
Registered: 4 years ago
Posts: 153
Thank you Andy
I have now seen the immunologist, and he recommends that I get a port-a-cath. He has referred me to the vascular surgeon who does them to make the final decision relating to risk - I have an active gastrointestinal wound/infection that has been there for 2 years and has not responded to 7 lots of surgery and IV antibiotics and continual oral antibiotics for the 2 years, so the immunologist is concerned about the risk of infection spreading to the port. But he thinks the risk of not being able to give IVIG is a higher risk, as I'm running out of veins. Final decision will be 10th May, and if approved, then it will be put in a couple of days later.
IP/Host: ---.hsd1.ma.comcast.net
Registered: 3 years ago
Posts: 49
I had my port put in in Feb. My veins had gotten so bad from being in the hospital all the time. I need infusions every three weeks, so there wasn't much else to do. It was the best thing I did. I love my port - well as much as one can. It makes life so much easier. No more pokes and prods. No looking for veins and not finding them. No losing veins once they have them. It hurt a little to have it put in, but so far I haven't had any problems (knock on wood).
IP/Host: 58.179.68.---
Registered: 4 years ago
Posts: 153
Hi everyone
I had my porta-cath put in, and everything is going fine so far. I have been on 7 antibiotic tablets a day to reduce the infection problems I have, to keep it out of the porta-cath. The first infusion in it will be in 2 days, but the doctor says everything is going fine, so should be no problems. Thanks everyone for your input.
