IVIG infusion and antibodies

[dyann]

Ok here it is my antibodies r high which puts me at risk for a rejected kidney transplant, so dr ordered 4 months worth of IVIG treatments wasent warnednabout side effects, I endednup having an allergic
 Reaction to the infusion causing me to have a mild heart attack so can take this anymore..  I found out that there is nothing more they can do at this time to decrease the antihodies  so in order to get a transplant I have to have a live donor that jot only has my markers but also my type of antibodies this is a long process they say I need at least 20 30 people to test thisnis jot logical for me  so I am jow at the ooint as to where I thinknits time to throw in the towel  I am only 49 butni DON'T want to live on dialysis the rest of my life I really need some thing to encourage me to fight cuz I just dontnhave that fight in me  I am so tired.

[KatieV]

What about paired donation (daisy chain)?  That way you only need to find one donor that is willing to donate on your behalf.  You and your donor (completed donation tests) get listed in the National Kidney Registry and then they find a match for you and your donor.  Sometimes it's a one-to-one pair, other times a much bigger chain.  My brother had antibodies to 99% of the population.  My sister was willing to donate on his behalf and a chain (16 donors & 16 recipients) was made.  He is now doing great!

I'm sorry your doctor didn't warn you about side effects.  I, too, have very high antibodies.  My doctor tried to push me into IVIG, but I was concerned with the side effects.  And we got a second opinion that thought it wouldn't be very beneficial in my situation.

I hate to see people give up!  Please look into the National Kidney Registry!

[paris]

My PRA is 100%.  I had a series of people tested before going on the list. Hearing '"no match" time after time is very discouraging.   The surgeons said there was slim to no chance of anyone ever matching. Plus I am O blood type, which made it even harder.   I would always reject.  I went through IVIG and chemo.  I didn't have a bad reaction, but it does take a lot out of you.   Others here have had good results with IVIG.   I didn't.  The infusions did nothing for my antibodies -- didn't bring them down at all.  After 5 years on the list and being told over and over that there will not be a match, I got a call.  What a surprise!  I was the last of 5 to be called that day.  I was at the hospital at 10 am, went through tons more tests and sat and waited.  Finally, around 11pm, the nurse came in to prep me.  What?!  Then the coordinator came in crying and told me the kidney was mine.   HOW CAN THAT BE???    You know we each have 6 different antigens.  This donor had just 3 different antigens -- but 2 of each one of the three.  I only needed to have 2 or 3 for it to be a match.  That would be equal to 5 or 6 in a "normal" transplant.  And since I had the highest PRA, and this was most likely my one and only chance for a kidney, I won the prize.  The kidney was from the extended criteria list. So, I knew there could be a risk.  All day I had told my family that this was an interesting experience and the good thing was someone was getting a kidney.  I was planning what fast food place to stop at on the way home after they told me it wasn't a match.   LOL

That was Aug 31st.  Went into surgery before midnight, so my official transplant date is Sept 1. I got to see the new kidney in the dish on ice. That was fun. 

So, I am here to tell you that you can get a transplant with high PRA -- it takes time and patience, hope and prayers and a guardian angel with the right antigens.  There are other members who have high PRA's and have had a transplant.   Don't give up!!  It can happen.     

[obsidianom]

Glad to hear you got a kidney.
My wife and I decided to forgo the transplant route due to some of the same issues plus the way she responds poorly to many meds . The anti rejection meds would be hard on her. Her brother offered a kidney but we declined. She is 66 and so may be on hemodialyis for many years(I hope). However we decided her quality of life with the Nxstage home system is good and ther is a lot to lose with a transplant and the meds after including the increased cancer risk.etc. The latest research numbers show that daily hemo dialysis is virtually equal to a donor cadaver kidney transplant on overall health and lifespan. We are comfortable with doing dialysis together for the rest of her life. Its only 3 hours out of a whole day , and 5 days per week. So we give up 15 hours pe rweek. Not a bad tradeoff for life and health.   She feels good on dialysis days , better than on days off. She just got off walking 25 minutes on the treadmill for exercise. That was 15 minutes after we finished home hemo dialysis.
For those who can and do want and get a kidney, GOOD for you. It may be right for you and should work well. For those who cant or wont, home hemo is the way to go to get almost equal care and health. Frequent dialysis WORKS. Dont give up if you cant get a kidney.

[jeannea]

I had a cadaver donor and I had 97% antibodies. It does happen. You have to be a little patient but if you get a match it's a good match.

[dyann]

Thank you everybody I have just been so down but its getting much better  I just was really bummed hut again doing better.