Do you have a port? How often do you receive IVIG? Any downside to having a port installed?
Thanks. Will be seeing my neurologist in a few months again and may ask about having one. Just wanted to get input from others.
I had a port installed a year ago and my infusions are much better now. I had breast cancer before and the chemotherapy did a number on my veins. I get IVIG every 3 weeks and after 2 years of infusions, it would take several hours sometimes to finally get a vein that didn't blow. I kept putting off having a port installed but eventually had no choice. My infusions run so much smoother now. Everyone is different and you have to decide in your own time if the port would be beneficial to you. Good luck!
Tammy & mdolich, what amount of IgG are you getting every three weeks? My nero mentioned installing a port in me and I thought of Baron Vladimir Harkonnen for some reason.
I assume all medical/hospital facilities can use it, as it is standard port? Where is it located on your body and what type of tattoo would look good around it? I joke, but I'm also serious. TX
I am receiving 30 gm of Gaumunex C one day every 3 weeks. I've actually had 2 ports installed in the past year as the first one had complications. I don't remember the brand of the first one, but the surgeon installed it on top of my bc reconstruction implant, which he should never have done, and it flipped sideways. Such a simple procedure, which he made so complicated. I found a vascular surgeon the next time, had the 1st one removed and another implanted which works very well now. The port I have now is an Angio Dynamics smart port which you can also use for contrast dyes. When in the ER recently, the nurses couldn't figure out how to use it, so we had to use my hand for a vein again...but they are supposed to be able to use it...ha. I love the idea of a tattoo...you are SO funny. Don't know if I want to draw attention to that area though. Mine is located on the right side of my chest, so I try to downplay any attention to the area.
Great question! I have been getting weekly IViG for almost 4 years; and now it's getting very difficult to get an IV site. I feel better about possibly getting a port some day after reading these stories. Thanks!
Thanks for the feedback. Sounds like a port may be the way to go.
THANKS, MDOLICH! Presently, I get infusions M-W-F and a new objection site each time, because I swim everyday regardless of relapse or remission or regressions. This then presents a new question: is the port compatible with daily dips in the Pulakani community pool?
Can someone provide me with a link to a port picture and the installation instructions. I may try to install it myself... kidding.
mdolich said:
Estaban, I get 80g of Gamunex-C every three weeks at the VA hospital. My neuro tried once to increase it up to the amount I'm suppose to get for my weight (278lbs) which is 103g. They increased it to 100g (rounded it off to 100 because the bottles I get are 20g each, makes it easier to calculate), but I started to have real-real bad pain in both my knees and hips, the pain was so bad I could hardly walk. So they backed me back down to 80g. Which is good for me.
Yes it can be used as a standard port at any hospital or clinic, I have had blood drawn from it for lab work at the clinic. You just have to make sure they flush it after accessing it, which they normally do, unless you get a nurse that isn't to familiar with ports.
Even though your kidding, I wouldn't advise anyone to get a tattoo to cover up the port. If they were to accidently pierce the port and inject ink directly into your vein (which goes directly to the heart) it could cause serious damage. I have a few tats myself, but would never take the chance by having one anywhere around the port. Just my opinion.
In my opinion, and from my experience, ports are the only way to go if you have to have IVIG long term.
estaban said:Tammy & mdolich, what amount of IgG are you getting every three weeks? My nero mentioned installing a port in me and I thought of Baron Vladimir Harkonnen for some reason.
I assume all medical/hospital facilities can use it, as it is standard port? Where is it located on your body and what type of tattoo would look good around it? I joke, but I'm also serious. TX
I have a port. My blood vessels are shot. I require IV Zofran daily. My stomach doesn’t absorb the pills. I love my port. Can get blood without sticking me 4 times. It’s in my upper right chest area. I forget it’s even there
Mayo put a port in me after trying to use my arm veins for plasma exchange. What little muscles I had left could not support the blood vessels under the suction of the machine and they just collapsed.
I would not make the decision to have one put in lightly. It is surgery and I never could get used to a big tube going down my jugular almost to my heart. But for plasma exchange, I needed a two-way, so maybe it’s bigger than a one-way port.
Now that I think about it, maybe the two-way ports needed for plasma exchange are different than what they use for IVIG. Due to the closeness to the heart and the risk of infection, we had to be extremely careful when bathing to keep it dry. The nurses had to seal it with plastic and tape. It also could only stay in for a few weeks max.
THANKS! I will definitely talk to the neuro about getting one. Can insulin be injected in a port, multiple time each day?
mdolich said:
Photo of my port Estaban. It's on the right upper side of chest. You can see it leaves a small scare.
Hi Jeff -
I'm confused. Mayo did just one plasma exchange and then expected the port to come out? My understanding is that PE is an ongoing treatment. I'm asking because after many years of struggling with this last flare, I'm considering PE and a port. IVIG didn't work (60 times we tried - all in the hospital on slow drip)... Steroids aren't holding me either, even with Imuran. So Stanford is thinking about first trying subcutaneous steroids on drip once a week or PE.
Thanks for sharing. Let me know!
- Rosemary
Jeff said:
Mayo put a port in me after trying to use my arm veins for plasma exchange. What little muscles I had left could not support the blood vessels under the suction of the machine and they just collapsed.
I would not make the decision to have one put in lightly. It is surgery and I never could get used to a big tube going down my jugular almost to my heart. But for plasma exchange, I needed a two-way, so maybe it's bigger than a one-way port.
Now that I think about it, maybe the two-way ports needed for plasma exchange are different than what they use for IVIG. Due to the closeness to the heart and the risk of infection, we had to be extremely careful when bathing to keep it dry. The nurses had to seal it with plastic and tape. It also could only stay in for a few weeks max.
Aloha Romc0— Hearing that IviG failed you after so many sessions really bums me out. I have had so much success with IvIg and now because of a trauma I suffered recenetly I now feel the decline of the IvIg treatments. Steroids are out for me because of DM type 2. Still, I have a course of IvIg until November and can only hope it energizes me back to happy muscles.
Good luck to you!
Romco said:
Hi Jeff -
I'm confused. Mayo did just one plasma exchange and then expected the port to come out? My understanding is that PE is an ongoing treatment. I'm asking because after many years of struggling with this last flare, I'm considering PE and a port. IVIG didn't work (60 times we tried - all in the hospital on slow drip)... Steroids aren't holding me either, even with Imuran. So Stanford is thinking about first trying subcutaneous steroids on drip once a week or PE.
Thanks for sharing. Let me know!
- Rosemary
Jeff said:Mayo put a port in me after trying to use my arm veins for plasma exchange. What little muscles I had left could not support the blood vessels under the suction of the machine and they just collapsed.
I would not make the decision to have one put in lightly. It is surgery and I never could get used to a big tube going down my jugular almost to my heart. But for plasma exchange, I needed a two-way, so maybe it's bigger than a one-way port.
Now that I think about it, maybe the two-way ports needed for plasma exchange are different than what they use for IVIG. Due to the closeness to the heart and the risk of infection, we had to be extremely careful when bathing to keep it dry. The nurses had to seal it with plastic and tape. It also could only stay in for a few weeks max.