Hi,

 

my my doctors want to switch to a port catheter for the monthly Ivig Infusions.

Does anyone have experience with a port catheter and IVIG? 

 

Thanks,

 

Andreas

Andreas,

I don't have experience with a port catheter for IVIG and I am not a medical doctor.  However, if I were you, I would NOT consent to a port catheter unless it was proven to me that it was absolutely medically necessary. 

There is a lot of information on the risks and benefits of ports on the Internet, so start your research there.

Then, I suggest that you ask your nurses rather than your doctors about the pros and cons, because they really know, and are more willing to talk, about what happens to patients when they get a port catheter. 

I have asked my nurses about ports from time to time during the past nearly 10 years that I have been receiving IVIG, because at first thought it seems to be such a simple and convenient solution, but they have all told me the same: Do NOT get a port catheter unless all other options have been exhausted. 

Why are they more willing to spend time and effort looking for my veins every month rather than connecting easily to me via a port?  Because (a) they know and are more willing to talk about what can go wrong with a port, and (b) they really care about their long-time patients -- more than doctors do.

Anyway, think about it: If you don't absolutely have to do it, do you really want to have an extra opening into your body that can become an autobahn for an infection straight into your vital organs?

Arturo

Andreas... Interestingly, we just had this discussion with our immunologist team on Friday as some of my nursing team are finding it harder and harder to get a vein for my bi-weekly IVIG. A few nurses have actually mentioned it to me as they are struggling so much. The lead immunologist was adament that he wants to avoid the port as it opens the door to other issues and infections. He said that we have many more ways to get a vein... ultrasound to find a vein and/or bring in the nurse specialists to the clinic to start my IV.  I was relieved to hear that we are avoiding a port catheter as it seems like a very invasive step for me at this time.  

Lisa

I have had a double port since 2010. It works well and I receive  my IVIG treatments through it every other week. I got the port before I start IVIG as I was having life threatening attacks ona regular bases. It was taking the doctors over an hour to start a central line so the port was the best way to start fuilds quickly. 

I am glad I have as it has been used many times during attacks and treatment. I my case the benefits have far outweighed the risks. Good luck in making your decision.

Rita

Nolan is on his second port. I advocated for it when he was having so many episodes. I never wanted to go with out easy veinous access. We have not had any serious problems. I think it is a life saver. Wendy

Arturo, interesting that my nurses in the IV/Cancer center were lobbying for me to get a port for easier access and knowing I had to come every month, they could 'service' it and check it for any issues.  I talked to my doctors and they have both been less enthusiastic about it.  They left it up to me and gave me some pros and cons...pretty much which has been listed above along with some concern on my part on protecting it during physical activities. 

Hi,

 

thank you very much for your advice and opinions, also to those, who sent me an email.

I finally decided to get a port. Since then, I had IVIG Infusions twice. It was very comfortable. No more hassle finding a vein, and the start was very fast - no more delays, what means, that I can go home much earlier. As I now get my infusions on three days and go home over night this is quite good for me.

For my daily life (e.g. sports, backpack,  sleeping) it is no problem.

As I changed the institution, where I get the monthly IVIG , they came up with another question. I will start a separate thread for this.

Andreas