Hi guys

I posted this on the Tysabri thread, but didn't get any response - so I thought I might copy it to here and see if any of you wonderful people have and any experience with these:

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And I don't mean the yummy kind that comes after dinner with witty (or tipsy) conversation and nice cheese with crackers.

I had infusion # ???? (in my fifth year now) and my veins are going on strike. My beautiful nurses - one of whom has MS, and the other who is a super-gentle and experienced oncology/chemotherapy nurse have suggested I get an implanted venous port put into my chest (just under my collarbone, and fed through a central line to my sub-clavian vein) after three unsuccessful attempts today to cannulate me (finally got it in on my cubital fossa - which I don't like)

Not sure how I feel about this - in Australia, they don't test the titre level for JC+ - you are just positive or negative (I am +). If I knew my titre level, I would have a better idea of how long I am prepared to risk Ty.

Does anyone else have a port? If so, what was it for, what was your experience, and did it make having infusions/blood tests etc easier?

Thanks

I had a temporary port, when I got 5 days of Salu Medrol infusions,
at home. the nurse came each day to infuse.
Is that what you mean?

I also had a temp port years ago when my guts/liver went on strike for IV ABs to deal with peritonitis & for nutrition. It was in for 3 months and I never had a problem with it. When it is not in use, they cork it and put a wide water-proof bandage over it. You can bathe, shower etc with no problem.

You might find it much easier than the poke and jab sessions. If at some point you choose to discontinue with Ty, you can have it removed easily.
Good luck with it if you get it.

With love, Erika

Lynn,

I have a port, and have for the last 12 years. I use it for IVIG. It's saved my life! Let me know if you have any questions, or private message me.

Thanks everyone

4-Eyes (feel bad calling you that ) - I am looking at something that would be left in for a long period of time too. In addition to Tysabri (and I have no real idea how long I will be on that, but am thinking quite some time if things stay as they are), but I also have to have blood tests taken on a regular basis, and I have ITP, so IVIG and possible blood/platelet transfusions have already been, and are very possibly on my agenda in the future).

I do have a few questions for you - was going to PM but couldn't for some reason. Did it hurt much after the surgery? Did you bruise/scar much from the implant? Is it really visible? How often (if ever - I guess it depends on your usage) do you get it flushed - do you do that yourself, or done by a nurse? Does it hurt when they access it? Is it tender or uncomfortable when not in use?

Many thanks to you all for the information.

Lynn,

When I had mine put in, it didn't bother me at all. It wasn't sore from having it put in or any time after that; even when accessed for use. I don't remember ever needing it to be flushed, but maybe the nurses did that before using it.

When it wasn't in use, the connection thingy (about 1.5 inches long and the diameter of a pencil), laid flat, just under the collar bone and was taped there, so it didn't show through clothes or get in the way. The part that went from the connection thingy into the skin & blood vessel was a flexible tube, so it didn't interfere with movement etc.
There is just a tiny mark where it used to be now, so no real scarring.

Hope that this helps .

With love, Erika

Lynn,

Good to hear from you. I am happy to answer questions. I had my port put in by a cardio surgeon, but an interventional radiologist or even general surgeon can do it. It was a day surgery, and it was pretty tender for a couple of days, but then healed fast.

I have a 1 inch thin palr scar on my chest where the port was inserted. Some docs need to do an additional incision under the collarbone. I am not overweight, so requested a "slimport" so there wouldn't be a big lump on my chest. My port is barely noticeable altho after all these years there is some dark scarring from all the sticks. It is usually always hidden under my clothes and if not, who cares? .

I infuse monthly and the port is flushed and heparinized at that time. It needs to be done every 4 weeks if you are not infusing. I can do it myself but most use a nurse.

When it is not in use I don't even think about it. When my daughter was little she'd sometimes crash her head back into it, but nothing like that has happened in a long time. It's pretty much a non-issue.

I am happy to show you photos. Just let me know!

Good luck on your decision. I suspect you will wish you did it long ago!

Well.....

The more I am hearing, the braver I am feeling ('cos I don't feel so brave after 3-5 unsuccessful cannulations). I have an appointment with my neuro this coming week, so I will discuss it with him - I can't deny that it still freaks me out (just a little, and for no logical reason) - but it makes sense.

Cheers

I understand. My veins lasted only a year and it is so nice to have the port. I did a high dose Cytoxan reboot 3 years ago and it was great to just let the port do the working. Having your hands free during infusions is a big bonus as well.

My daughter was just a toddler when I got my first one, and she misunderstood what I was calling it and so she would refer to it as my "pork." Twelve years later, it's still my "pork" around here. Feel free to use that for yours as well! Humor helps any situation!