catheter for plasma exchange
January 3, 2012 at 7:29 am
I got the date for my plasam exchange–Jan 12th. I will have the cath put in, then start the first treatment that afternoon.
When the hospital called they said they were planning to use moderate sedation. I told them no, that I could have it done with just local.
Now I’m worried that maybe i should have kept the moderate??? What did others on here who have had the PE cathetar use for sedation?
From what I’ve read sounds like the cath is the size of a straw, and they will numb the area. I figured since i survived my nerve biopsy under local this can’t be much worse.
Personal experiences, opinions, advice PLEASE 🙂
AnonymousJanuary 3, 2012 at 9:51 am
I had the catheter placed in my right jugular vein – local worked for me just fine, no pain. The Dr. did use the x-ray device to ‘see’ where the shunt went and to guide it. Several stitches helped hold it in place. It has an ‘in’ and an ‘out.’
I’m about 5’9″, 160lb, so my veins are easy to access. It was annoying to live with it in place for a week, but mildly so.
Just make sure everyone washes hands, uses masks and takes every precaution against infection. Pain is minimal. Guarding against Infection s/b main concern.
Removing it also easy. Done by nurse.
January 3, 2012 at 6:39 pm
I tried to get it done outpatient but my dr is 3 hours away from where i live and wanted me to do it inpatient at the hosp. she works in —so i am having it done in-patient……ugg !!!!what to do for 10 days in a hospital.
I have only ever been in a hospital to give birth to my children, even then it’s in and out in 2 days. Guess i will bring a lot of books to read.
Having the cath that morn under local then heading up to start the PE process that afternoon.
Thanks Took—I’m glad the local was pain free for you–makes me more optimisitic about it.
AnonymousJanuary 3, 2012 at 8:41 pm
Had the cath during the sct program as it uses the same machine to harvest the stem cells as they use for PE – similar process, blood in, blood out. Everyone in our group had it done with a local and no one complained, including me 🙂 , so think you should be OK.
I was in a little longer than you will be, but I read the entire Harry Potter series. It was a hoot!!! I like to do that – wait until all the books are out then read them all. So you might pick a series and go through it? I also took my laptop with me and skyped with various friends daily – even played some yahtzee via skype! It all helps with the boredom. And you will probably get bored fast as I suspect you will feel better fast!
Of course, you can also keep us updated and that will take a little time. 😀
January 3, 2012 at 9:23 pm
I don’t know much about the whole catheter or PE thing, but just wanted to wish you luck with it all! Netflix on your laptop may help pass the time too with some shows and movies! Good luck! I’ll be thinking about you, hope it works wonderfully!
AnonymousJanuary 4, 2012 at 12:38 am
Unless you are the anxious type, there is no need to for sedation to put in the jugular catheter. You will get lidocaine injections, to numb the area. You will feel pressure during the procedure, but little else. You might perhaps have some discomfort later, but it should be mild.
Godspeed with the treatment,
January 4, 2012 at 6:56 pm
thanks everyone—i feel better about it. No, I am not an anxious person, and after hearing many have done it under local i feel good about having asked the hospital change it from moderate to local. Thank you for responding MarkEns—your posts are always very imformative and helpful.
The person i spoke to on the phone at the hosp., to change it made me feel it was not a good idea. But… if i’ve learned anything with cidp, it’s to advocate for myself, question procedures, and make suggestions of what has worked for others on this board 🙂
I am actually quite excited and can’t wait for the 12th to get here so i can start this procedure. Thanks everyone for the suggestions of how to spend 10 days.
Also…Thank you Linda for your positive words and thoughts–means a lot!! I hope you are still continuing to progress from your sct. and get back to 100% Lori
February 2, 2012 at 4:56 am
So, how did it go?
February 3, 2012 at 3:15 am
it went pretty well. i did faint for a brief period during the first exchange due low BP. After that they gave me extra calcium to prevent it. my insurance company wanted them to do the 5 exchanges in 6 days, that didnt work because my clotting factor fell too low so it took 8 days for the 5 exchanges. I have felt tingling, vibrations, different sensory things since having it. Not a lot of strength increase right away like i had hoped but i think it is finally coming—-sloooowly.
My Dr wants to wait two months to decide how it worked. i was surprised at that, because it seems like most people here felt the difference right away. I am scheduled to see her in March to discuss how it worked and what our next step will be. Have you ever heard of results from the PE taking up to two months to see?
The catheter insertion was nothing—i think if I had this done again i would prefer to just do it this same way with the temporary one that can be removed after. Thanks for all your info—made the whole thing much easier knowing what to expect. Lori
February 3, 2012 at 5:03 am
I am glad the process went reasonably well. It is too bad that the initial round did not yield dramatic results, but if you noticed any improvement, then at least is was a worthwhile experiment.
The low BP is not uncommon at first. If you do plasma exchange on a routine basis, you will learn to recognize the symptoms early and the staff can make the appropriate adjustments.
Typically, you should notice an improvement in a couple of weeks. Most textbooks say that PE has to be repeated every couple of weeks to maintain effectiveness. That is not necessarily true, but waiting a couple of months to see if it worked seems to me to be out of line with standard experience. I would press your doctor for another round much sooner.
The reason people opt for a more permanent catheter is not because the insertion process is so difficult. It is because a) they are getting PE often enough that they may as well leave one in, b) the risk of infection with the jugular catheter is higher than with the permanent ones, and c) constantly inserting a jugular catheter creates significant scarring of the vein.
I hope you find a good treatment.
February 8, 2012 at 4:28 am
I miss the ability to delete a post. Posted a reply here that I meant for elsewhere and now find that I can only edit it, not delete it.
February 20, 2012 at 12:19 pm
Lori, My blood pressure has dropped (vasovagal response) three times. The first was early on while undergoing plasma pheresis (and I’ve had many PEs now). The first BP drop was scary. Mark is correct; after the first episode I could feel it coming on, told the nurses, they quickly gave me calcium (talk about a warm fuzzy feeling … ) and I avoided the blood pressure drop. After awhile I guess my body developed a tolerance to PE and I didn’t experience the BP drop. The second BP drop happened during the “rinse back” step in the PE (towards the end of the procedure). I started coughing and having respiratory problems and the nurse noticed it and ask me if I was having problems. She stopped the machine and pulled me off. It took me awhile to recover. The 2nd DP drop was very atypical and they thought I may have had an alergic reaction; again strange since I was going through rinse back. The third time was about an hour after the PE; we were eating in a restaurant and I felt very light headed and had to lay down on the restaurant floor and elevate my legs.
I write this not to concern you about the vasovagal response, but to give you the knowledge of how it may occur so you’re ready.
Also it took a few weeks for the PE to produce results, but they were dramatic. Remember that the PE only removed the offending antibodies; your body has to repair the damaged myelin which takes time. I see your last post was 2/3, so you’ve had some to hopefully see positive results. Let us know how you are doing.
Praying you are re-myelinating and are seeing improved motor function and sensory function.
February 20, 2012 at 12:29 pm
Lori, The Methodist Hospital Blood Center here in Houston started using a newer model PE machine a few months ago. When they began the PE cycle on the older machines, I noticed a pronounced chemical odor and taste; I think the old machines “slugged” the chemicals into my system. The control system for the new machines seems to do a much better job in easing the chemicals into my system. I do get the odor and taste, but it is very faint. The chemical odor and taste doesn’t produce the vasovagal response; but it does seem I’m more susceptible on the older machines. I generally feel much better and recover much more quickly when I am hooked up to the newer machines.
I’m not sure what PE machine they are using for your procedures, but you might want to keep a journal and see if you can see any trends that might help you …
February 23, 2012 at 12:06 am
thanks Gary for the info. its been a liitle over a month since my pe. i did not get any significant improvement from it. My cidp is very slowly progressive with axonal damage–so i imagine my recovery will be slow as well. I dont think my dr plans for me to try the pe again as i did not get much from the 5 exchanges. soon i will be starting back on the ivig—that did keep things from getting worse, even though it didnt improve things. not sure what the next step will be?
March 3, 2012 at 10:37 pm
Lori, how many treatments did you have? I had nine. I did not notice any improvement until about the sixth. Since then, it has been all uphill, although healing from axonal damage takes a long time, and may never reach 100%.
March 4, 2012 at 11:27 pm
I had 5 treatments in 8 days—did you feel anything at all in the first 5? Yes i do have axonal damage according to my emg/ncv.
March 5, 2012 at 2:59 am
Lori, I felt nothing at all from any of my PE treatments. The procedure doesn’t do anything that causes a sensation, but only removes harmfull components from the blood that allow healing to take place and thereby strength to be regained. It was after about six treatments that I first noticed recovery in strength, in the ability to raise one finger independent of the others.
My belief is that the relatively large number of treatments I received was important to my recovery, although I have no way to know this, of course.
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