"Minor" Bump in Transplant Testing

[Cordelia]

Hi, everyone. I was told by my transplant co-ordinator that my blood had a 'minor' reaction to my living donor's blood. She mentioned something to me that it was a minor thing and that I'd have to have some kind of procedure to filter my blood. It's some long term/word and I can't even remember the name of it-I guess I should have written it down, asked her how to spell it for me.   

Anyways, it starts with the word "plasma" and it's something like a dialysis machine apparently from what she mentioned to me.

Anyone heard of this that could possibly shed some more llight on it, to help me understand this procedure better?  thanks

[Lillupie]

is it ivg-antibody?

Lisa

[Sax-O-Trix]

Plasmapheresis?  I just had 4 treatments post-transplant for a reaction to Tacro (anti-rejection med.)  I had twelve units of plasma per session.  The treatment itself wasn't bad, just had to stay on the bed for 3 hrs while the exchange took place.  I felt like a walking vibrator for several hours afterwards each time, lol.  Having the chest cath inserted two days post-transplant was frightening though.  I just had the cath removed today, that was easier.

[Cordelia]

I think so  Sax. Is it done pre-transplant or POST transplant. I'm confused now. What actually is plasma? I don't understand. I'm not getting someone else's blood put into my body, am I ? Oh god, I hope not.

[willowtreewren]

Cordelia,

The type of plasmapherisis that you would be having would remove your plasma to strip it of the antibodies that would cause you to reject the donor kidney. Your own blood will be returned to your body. This process is similar to dialysis in that your blood is removed and cleansed of antibodies and then returned to you.

[Cordelia]

Thanks, Willowtreen. 

Can this process make a person sick?

My transplant co-ordinator said it "might" take a few times for treatment to filter my blood. I was worried it might be a long-term thing, like dialysis, but it doesn't sound like it-I hope.

This is what the cross matching test revealed. I haven't found out about results on the antibody test yet. Hopefully there won't be too many hiccups with it.

I must ask, can this be done through my central line in my chest currently there now or I am going to have some other catheter or needle permanantly inserted into my body? I hope they can just use my current central line that they currently use while I'm on dialysis.

[lawphi]

Cordelia:  Willow hit the nail on the head.  Mayo Clinic and John Hopkins have great websites that discuss the procedure.  We will have it "performed" April 23 and 25th and will post accordingly. 

I would find out the specific reaction.  I imagine your flow crossmatch has a mild reaction. 

The procedure can be done both pre and post transplant.  It is used to treat graft rejection as well. 

Sax:  Do you know if the treatment be done with a fistula or will a permacath be required? 

[Cordelia]

Yes, that's what she said, its mild. I'm not sure the specifics though. Are you having this done personally, Lawphi? Please let me know where you post about it, if you are, I'd be so happy to read about it. Can anyone link me to some websites to read more about it? I love to read all I can. Thanks in advance

[Sax-O-Trix]

I would guess they could use a fistula or a chest cath because the other people in the suite when I was there for treatments had needles in their arms for their treatments.  I had to have a chest catheter inserted in an emergency type situation two days after my transplant because I didn't have any type of prior access. 

[-Lady Noir-]

Hi Cordelia!

Mike, who had his transplant in December 2010, had 4 sessions of plasmapheresis. I have a photo of the machine if needed..
He had a central line inserted into his neck [i also have a photo of that]

The most amazing thing about it was they said they may not see results in your blood straight away, and it might take a few goes, but with Mike they saw drastic results after the very first session! Unfortunately the whole process made him very ill.. but it was more uncommon to get as ill as he got. To be fair, he had started pre-anti-rejection medication the day prior, in high doses, so that could have had something to do with it.

[Sax-O-Trix]

I didn't have any side effects that I was aware of other than the vibrating feeling for a short time afterwards. I was able to get up and go about my day as normal.  I did need a couple of extra blankets to keep warm, but that seemed to be the norm for me when I was in the hospital.

The aniticipation was the worst part for me because I was told that I had a life-threatening reaction to Tacro and that I needed to get the chest cath put in asap.  This all happened in the later evening when I didn't have any family with me at the hospital, so it was pretty overwhelming.

The treatments themselves were painless and I was able to sleep/watch TV comfortably.  I also had a great nurse who was very reassuring throughout the treatments.

[Cordelia]

Hi everyone! 

Should I really ask to see if this treatment can be done on me prior to transplant I wonder? The reason I ask this is because I have a chest line already. I really don't want to have an emergency one put in my neck. I had that when I went into renal failure last August and I had a lot of probems with it. I'm just wondering about doing it pretransplant that way then I can avoid having to have a line put in in an emergency. My central line, I've never had a problem with it at all.

Lady Noir, how sick did Mike get? What kind of symptoms can I perhaps expect from this treatment?
Feel free to share your pics of the machine, if you're able to.

What do you all mean by a 'vibrating' feeling? Does it last for long?

You all are so wonderful to share your stories with me. 

[Sax-O-Trix]

I would think that your treatment would be PRIOR to the transplant (and perhaps afterwards also) to get your anti-body levels down so you have an easier time with the transplant.  I also think that they would have to retest your anti-bodies against your donor's again before they actually do a transplant, so they need to do it before the transplant.  They may keep your line in for a bit after your transplant to make sure you won't need it again.  Best to ask your coordinator and doctors

Vibrating feeling = a "buzzing" feeling like I had been sitting on one of those machines that massages/vibrates your feet at an amusement park.  It wasn't bad, it was just there for an hour or so afterwards.

[Cordelia]

I guess it would make sense to do it prior. Especially since I have a living donor. I could totally understand with a cadaver kidney, to do the treatment after transplant. Makes sense. Thank you Sax for the insight

Thanks for the heads up about the buzzing feeling too-was it all over your body or limited to one area? I'm a little confused on that.

[Sax-O-Trix]

The buzzing/vibrating was all over my body right after the treatments for at least an hour and then only in my neck/chin area for a few hours after the last treatment.  Honestly, it didn't hurt, it was just there.

[Cordelia]

I suffer from neuropathy. I'm guessing then its kind of like the feeling/sensation of that-something very similar to that, like a tingling...... I'm imagining this would feel? (Sort of?) Thank goodness it only lasts for short time, thanks for the heads up Sax

[-Lady Noir-]

Here are some photos of the machine..

[lawphi]

Plasmapheresis was very easy. Hammett said it was easier than dialysis. He did not have any tingling or vibrating. Our nurse said that is a sign that the treatment is removing too much calcium, but could be replaced quickly by eating dairy.

[-Lady Noir-]

Mike had vomiting and diarrhea. Tingly lips and fingers, they had to keep giving him calcium pills and drinks. He also got very cold, and then when it was all over, couldnt sleep at night cause of the pain in his neck from the central line. Apparently it was rare to have most of those symptoms execpt the calcium.

[Sax-O-Trix]

Interesting...  Perhaps the vibrating I experienced was actually severe tingling/numbness they list as a side-effect.  I didn't say anything to the RN who was in charge of my treatments because I thought the all-over my body vibrating had something to do with the machine, lol.  Duh.  I'll remember to say something about the previous buzzing/vibrating/tingling if I ever have to have pheresis treatments again.

[cath-hater]

I went through 3 months of plasmapheresis just last October 2010 - December 2010.  It was POST transplant.  They were trying to get my new kidney to work, but unfortunately, the pheresis didn't do anything for me. 

A cath was placed in my upper chest, right side. I went in 3 days a week for 3 months. Process took about 1 hour and 30 minutes each time.  I didn't get any sensations whatsoever.  They said it was normal to get the "tingly" sensation, but I didn't get any. I guess I was pretty lucky I didn't get sick or anything.  As soon as I was done, I got right up and walked out each time, no problem. I did feel a little chilly, but that's because hospitals are always so damn cold !  Other than that, pheresis was a breeze.  I think you'll do just fine.  My spiff was having to get the darn chest cath put in. THAT I did NOT enjoy.

I always wondered why they didn't do it PRE transplant instead of POST, so that my FSGS wouldn't have damage it (the kidney) so badly and so quickly.  If I had known about pheresis, I would have requested it before I got the transplant.

Since you already have the chest line, I would definitely have them do it before-hand.  Good luck and keep us posted.

[Cordelia]

Thanks, everyone for your stories!  :grouphug;Sorry I did not get back sooner! Thank you for sharing the photos LadyNoir! 

I haven't heard anything from my doctor about this procedure, only my tranplant co-ordinator. It looks just like a dialysis machine I hope I don't suffer any ill effects from it. I never come off the dialysis machine feeling sick, so I'll keep my fingers crossed no problems I hope!

Yup, I already have a central line in my chest so I really hope there is nothing else they have to 'insert' . I hear you about the central line, cath-hater, mine going in was absolutely NO walk in the park and I pray and hope to God I never have to have that put in ever again. My line runs well other than once in awhile they have to put down the liquid draino