Highly Sensitized

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KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/22/2009 5:58 AM (GMT -7)   
Does anyone had experience with plasmapheresis?  I'm highly sensitized and I'm going to see a doctor next month to get more information on the process.  With the information
 
Does anyone know anything about plasmapheresis?
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 7/22/2009 3:59 PM (GMT -7)   

Kidneykid,

The only thing I know about plasma... is that it saved my brother's life when he developed Guillian Barre Syndrome.  He had to under-go this procedure in order for the infection to stop the paralysis that was taking over his body in ascending order.  He did very well with it and has had some side affects from the syndrome itself, not the procedure.

I wish you the very best,

Judy 


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/22/2009 4:24 PM (GMT -7)   
I'm sorry I have never heard of the procedure. Hopefully someone will come along who knows something about it.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/22/2009 8:16 PM (GMT -7)   
Plasmapharesis is when they remove the 'whole blood', spin off the plasma and replace it. They are removing the antibodies by removing the plasma; and giving you back "clean plasma". I really don't think it's a painful or dangerous procedure. I'm assuming you're doing this to qualify for a transplant! Let us know what the doc says. Judy

KidneyKid
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 7/23/2009 9:25 AM (GMT -7)   
I'm actually going to Cedars-Siani in LA on August 26 for my appoitment. Although I live in the Chicago area, my insurance will cover an evaluation at Cedars-Sini. I'm not sure how the program works but I'm going there to find out. I know they do some desensitization programs in my area but from what I understand, Cedars is one of the better centers.

If I qualify for anything, I could take FMLA from work and my daughter lives in LA so I could stay with her. I know it may sound extreme to go that far, but I'm willing to check out anything that could possibly make me eligible for a transplant.

I'll keep you informed. Thanks for your reply.
52 year old female
Diagnosed with PKD 1995 (Wow!  Time flies!)
Inherited PKD from my dad
Not currently on dialysis


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/23/2009 9:38 AM (GMT -7)   
Wishing you the best. I can tell you have done your research and will do anything possible to get on the transplant list. You are one strong woman!!

I know my dad had to have a heart by-pass surgery before they would consider him for a kidney transplant.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/23/2009 10:18 AM (GMT -7)   
I don't think it sounds extreme at all! You do what you have to do! Judy

shorty288
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/21/2009 11:52 AM (GMT -7)   
Hi Kidneykid

I have done plasma-pheresis, my experience with it was not all that great. I have FSGS, Focal Segmental Glomular Sclarosis. Diagnosed when I was 6 years old, was an airborne virus at the time and I caught it. I am now 25 and I am on Hemodialysis. I have recieved to kidney transplants, my first one was at the age of 13 and it lasted 8 years. My second one was in 2007 and that one only lasted a week short of a year. Due to the way my rare disease is, it attacks the kidney and they dont know why, it slowly eats holes in the kidney till there is nothing left. Then its back to dialysis again. So that is where I currently am now. Since there is no treatment for my disease just maintence to stay alive, I usually am willing to try new things. At the last transplant they did the plasma treatment on me everyday in the hospital. If you do not have an access in your chest they will put one in to hook you up to it (cannot be done through an IV). Everyone reacts differently to it, but the red cross will come in to do it, it is a fairly large machine. It does not hurt to get it done, but it will make you very very cold (almost shivering) because the new plasma is kept cold and the spinning of your blood will cause you to be cold. Another side effect of it is that it does make you a little sick to your stomach, and will more than likely cause you to be very tired and weak. That is just because when they take your blood out like that it will make ya tired anyways. It is nothing to be scared of, plasma looks like a creamy milky color or will have a green tint to it, which I have been told that is because whoever donated it was on Birth Control. I can tell you look up plasma pheresis online you will find out all. It is worth a shot they are doing alot of experimental stuff with plasma. It has most of the same possible effects they tell you any treatment could have. Good Luck. I am here if you have questions

Katie
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