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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Junior Member
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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!
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MK If you can't be a good example, you can at least be a terrible warning. Janet Evanovich If you can't be brave, be determined, and you'll end up in the same place. Lisa Scottoline That love is all there is, is all we know of love. Emily Dickinson |
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#2 | |||
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Junior Member
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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.
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MK If you can't be a good example, you can at least be a terrible warning. Janet Evanovich If you can't be brave, be determined, and you'll end up in the same place. Lisa Scottoline That love is all there is, is all we know of love. Emily Dickinson |
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#3 | ||
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Grand Magnate
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Hi. I don't have experience with PP but I'm sure others will chime in. Good luck with your advocacy.
Annie |
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#4 | |||
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Member
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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. |
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#5 | |||
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Junior Member
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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!
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MK If you can't be a good example, you can at least be a terrible warning. Janet Evanovich If you can't be brave, be determined, and you'll end up in the same place. Lisa Scottoline That love is all there is, is all we know of love. Emily Dickinson |
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#6 | |||
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Member
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Quote:
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. |
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