plasmapheresis

[maria garcia]

Has anyone had plasmapheresis done?

[vdub]

Not I. Are you scheduled for this?

[maria garcia]

I heard a radio interview with a Wegners Dr., I believe from Mayo, and he suggested this should be the first thing done to a patient who has just been diagnosed and then the meds. I had never heard of this procedure. I wondered if anyone in this forum has had it done. Apparently its used to remove the Ancas in the blood. Im new to this just trying to get more information on whats out this.

[rif]

MY son had plasmapheresis on a daily basis for ten days when he was first admitted to ICU on initial diagnosis. It was done by the kidney dialysis team who brought a portable machine to ICU each time. They placed a catheter into his thigh to enable them to administer the treatment, this was of course removed after the final day. Similar procedure to dialysis and the number of treatments is dependent on how quickly the cells are cleared. The team assured me it was painless but as my son was sedated and on a breathing machine during this time I could not ask him what it felt like. This procedure definately contributed to keeping him alive during those early day as it was the only real alternative at the time to try to stabilise his condition before other medication took effect. Hope this helps good luck.

[maria garcia]

How is your son doing?

[Chris G]

It seems like plasamapheresis is probably reserved for the most severe cases - life and death situations.

[Kami]

Hi, I had it daily for 7 days when I was first diagnosed.

It is similar to a blood transfusion except that it's plasma and not RBC. They put a port in my neck and administered it that way. They bring this big portable cart and hook you up to it. They bring in very cold plasma that was donated or purchased from someone else. Your blood flows from the tube in your neck into this machine where the plasma is separated out and disposed of and then your blood is remixed with the donated plasma and then it flows back into you thru a tube. There is a warmer in the machine to warm up the donated plasma and keep everything at the right temperature. You are given calcium at the same time, if you feel tingling in your lips you have to tell them right away because that is a sign that you need more calcium. It takes a few hours to complete and there is a person specifically trained in the procedure with you the whole time. The whole thing is very painless. Without it I probably wouldn't have survived they tell me. They did this and IV Pred at the same time. Not the same time but the same days I mean. After the 7 days of plasmapheresis I had a couple of treatments of the Cytoxan.

I hope this helps explain it a bit. If you have any questions let me know and I will be happy to answer. Kami

[drz]

My experience was similar to rif and Kami. My intake line was in upper chest or lower neck. I was also intubated and unconscious during most of the umpteen sessions but do remember a few of them done when awake. I found it rather intriguing to watch my "oil change" although I usually slept through plasmaparesis and blood transfusions. My nephew was happy to learn that some of the plasma he donated during his college years went to good use as I used way over 100 units of plasma and maybe I got some of his. Plasmaparesis was highly recommended for me by consultants at Mayo and think it is now considered rather mainstream treatment for any serious WEGS attack. I am not aware there are real serious side effects to such treatment apart from the risks of any such transfusion and possible infections in intake lines which I got so I needed new line installed and first one removed. So there are at least three of us on here who probably wouldn't be here today without it.

[Sangye]

I heard a radio interview with a Wegners Dr., I believe from Mayo, and he suggested this should be the first thing done to a patient who has just been diagnosed and then the meds. I had never heard of this procedure. I wondered if anyone in this forum has had it done. Apparently its used to remove the Ancas in the blood. Im new to this just trying to get more information on whats out this.
Plasmapheresis has only been used routinely in cases of severe kidney involvement. There is currently a study underway investigating its use for severe lung involvement. Some doctors may have been using it here and there for lung-only cases, but it's not mainstream yet.

[Kami]

I found it rather intriguing to watch my "oil change" .[/QUOTE]

Oh drz, I so wish I was like you! I was awake for all of mine and I did not like my oil being out of my engine and in some other machine. I am not good with all of the "medical" stuff. To make matters worse on my seventh treatment there was a little mishap with the machine and the electricity and they were trying to figure out how to get my oil back into me and how much time they had to do it. I don't want to scare anyone, it was eventually resolved and the treatment finished but it was my last plasmapheresis treatment! They said that they didn't know of any incidences since they started this treatment in the 1970's, I was just the lucky one. I am really pleased with all of my doctors and all of my treatment and everything since being diagnosed but this is my one horror story! I had kinda forgot about that! I may have to tell this one for Halloween! :)

[rif]

Original post by Sangye
Plasmapheresis has only been used routinely in cases of severe kidney involvement. There is currently a study underway investigating its use for severe lung involvement. Some doctors may have been using it here and there for lung-only cases, but it's not mainstream yet.

The bleeding into my sons lungs had left him with less than 20% usage by the time he was Dx'd so they had to move quickly hence plasmapheresis. It also saved his kidneys being affected.

[Al]

Has anyone had plasmapheresis done?

I did, Maria. This was decided on after I started coughing up blood. (The kidneys were already in a world of hurt.) For me, it was an amazing thing: After the first session, the hemoptysis, went away, and I could breath without coughing. It was a fascinating process; the only side effect I noticed was a lot of itching on my scalp. This was fixed in the second session with some benadryl.

Hope this helps....

Al

[HeatherR]

I had seven treatments. Five then I had an iron infusion then two more plasmapheresis.
I had "fangs" sticking out from the side of my neck.
I didn't enjoy the experience at all. I was very light headed, vomiting and massive headaches.
But even with all that yucky stuff I'm alive so prayerfully I'll never have to do it again.

Heather