[CowgirlUp]

Hi everyone,

I've got MG and have been doing plasma pheresis for about 3.5 years. Recently I was asked by the hospital I go to to participate in a nursing conference on apheresis. I agreed to talk about p.p. from the patient perspective. So, I'm wondering if any of you who are doing p.p. might have some suggestions you want me to present at this conference. I'm focusing on things that nurses can do to help make the experience better, like how they do the dressing on catheters so it stays down longer, how to help decrease boredom, how to reduce pain from the needles, etc. I would really appreciate any information or suggestions any of you might have that I can add to my presentation. I want to make sure that whatever I tell them is actually helpful to patients! So, I'm looking for things that you think the nurses could do to make the experience better for you.

Thanks for your help!

[CowgirlUp]

I really hope some of you will be able to help me! I don't want to just speak about the things that only I think will help--I'd like to be able to talk about some things that other people feel have helped or would help make their experience with plasma pheresis easier. So far I have sections on reducing pain from the needles, how to deal with catheter dressings (keeping them dry, etc), how to reduce boredom/tedium during the procedure, and how to manage the psychological aspects of long term treatment. Any suggestions or comments about these or other topics important to you would be extremely appreciated. And thanks in advance for your help.

[AnnieB3]

Hi. I don't have experience with PP but I'm sure others will chime in. Good luck with your advocacy.

Annie

[tysondouglass]

Ive got plenty of experience. I did it for 6 months, nothing compared to your 3.5 years, yet something.

I always enjoyed it when they would put just the 2x2 guaze pad over the needle site so that you dont see the huge 16guage needle sitting there on both sides..

but maybe you have a port and it doesnt bother you any that way.

I had mine done at UNC and ill give you a low down of what happens:

They bring you in and have you lay down on a pretty comfortable hospital bed, and take a few viles of blood which they run STAT to see if they can proceed with the procedure. (Comforting) and then start the other side, and when the results are getting processed they offer you snacks, juice, warm blankets, etc. I think those are all crucial to patient care, alteast it made me feel a lot better

And during...i usually slept the whole time so it didnt become too boring. If it did, i would turn the tv on or something.

After I think the most crucial part if your not used to the procedure is getting something in your stomach directly after or some juice. I always had two bags of chocolate chip cookies and then some apple juice.

I think the main thing is making someone comfortable while doing the procedure and making sure if they have questions to answer them, kinda make i homey.

the pain of needles wont ever go away..yes they have stuff they can spray on but i think thats more psychological than anything but thats my opinion. Needles a needle

Hope this helped a little...not sure if you were looking for something more specific.

[CowgirlUp]

Thanks Annie and Tyson! Yes, Tyson it does help. I agree that making people comfortable is the most important thing. These are the kinds of things I'm going to talk to the nurses about at this conference.

If anyone else has something they feel was helpful, let me know. I appreciate all feedback and suggestions. I really want to make this a good presentation!

[alice md]

Originally Posted by CowgirlUp

Thanks Annie and Tyson! Yes, Tyson it does help. I agree that making people comfortable is the most important thing. These are the kinds of things I'm going to talk to the nurses about at this conference.

If anyone else has something they feel was helpful, let me know. I appreciate all feedback and suggestions. I really want to make this a good presentation!

Sorry I can't help much with this. But, due to a relatively rare reaction, I had to have mine done in the ICU. Also, it required a central line and hospitalization. So, boredom was never a concern for me (actually I was quite happy when it was relatively boring).

But, I do have quite a lot of experience supervising PP and (in the past) inserting lines. I always tried to make my patients as comfortable as possible, but there is always place for improvement. I would love to learn about your project and maybe it can help our patients too.

[neutro]

Hi CowgirlUp,
My experience with PLEX is now 2 full years but might be different from yours as my MG is rather resistant to medications. I started with one exchange every week, then every 2 weeks and presently every month. I never had ports, always directly in the veins although I'm under Pred.
I would recommend that the vein condition should be taken into account when considering ports, so that no unnecessary work be done for them.
I never had pain (I don't even feel the needle going in) although the exchanges were always conducted at the max speed (150), maybe the needle size has something to do with pain?
I should also say that in France, Plex are always run in special hospital departments totally devoted to the use of these machines, maybe the nurse's experience is greater?
They exchange 1.5 time the blood volume to have a better efficiency, I undertand that in some countries, they exchange only one time the blood volume.
The nurses should always point out the need for a good meal before the exchange.
I agree with Tyson, snacks and juices are welcome before and after, the same for the gaze pad on the needle although I'm not bothered by seeing the needles but for some people, it may help.
I'm not comfortable lying flat on the bed so, I always raise the head section which also gives me a better view of what's going on in the room...(up to 3 patients per room)
Good luck for your presentation!
Maurice.

[gooberoobu]

The big thing for me when I get a treatment is that the nurses listen to me. After the 2nd or 3rd treatment, I knew the tricks that worked. Most of the nurses ask me what works and what doesn't, but recently I had a nurse that was confident that she knew the correct way to do it.
It was extremely frustrating! She didn't use the arm I recommended, she didn't hang the calcium, she started the machine too fast, she insisted I have a tournaquet....
Instead of doing it the way that worked best for me, she had to discover it for herself. Instead of an hour and 20 minutes, it took over 2 hours.
So, I was just there yesterday, and I had the same nurse. Apparently she learned her lesson because she asked me each step as to what worked best for me. The treatment went smoothly and I was out of there in record time.

[CowgirlUp]

Thanks again for your responses. And yes, I agree that listening to patients is extremely important and I'll be emphasizing that. I once asked a resident who was going around with one of the docs if he had any questions for me as the patient. He actually laughed, like it was impossible that I might be able to teach him anything. I wanted to smack him! Anyway, thanks!

[Tracy9]

Can I just ask why you all get PP instead of IVIG? I'm going downhill and asked my neuro about it, and he said it won't work any better than the IVIG I'm on; the machine has to be gotten from the Red Cross....blah blah blah. I wish I could do something more to get better.