Chronic rejection

[edersham]

   I  have been catching up with the threads for a couple of days. I haven,t posted since early March when. I was  diagnosed with chronic rejection at my two year transplant eval at Mayo.  Diagnosis was by biopsy. Prognosis was it couldn't be cured and that slowing it down was the best case scenario. My creatinine had gone from 1.8 to 2.4 in two months. The first thing was increasing prograf and cellcept , adding prednisone and and an IVIG treatment.  Something seems to have helped because I have been doing pretty good for almost 6 months now and my creatinine has slowly returned to 2.02. Stil some proteins  in my urine but less than before.  I had not heard of IVIG for chronic rejection but the protein dropped within a week so it must have done something. The side effects  of IVIG were interesting but
Apparently  worth it. I'm over feeling sorry for myself and actually feeling really good right now.  I'm back to 2 months between visits now so I'm ready to shoot for at least 5 years now. Just another bump in the road I guess but some bumps are bigger than others as you all know.

Ed

[AnnieB]

What is IVIG?

Great that your creatinine is looking better! I'll be sending healing thoughts in your direction for continued improvement!

 

Anne

[natnnnat]

What were the side effects?  Glad you are doing so well. 

[edersham]

AnnieB,
IVIG is an interveinous immunoglobulin .containing plasma from over a thousand different downers.  It is usually used to try to reduce high antibody levels in prospective transplant patients.  You can see more information here:

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin



Natanat,

The side effects included migraine headache, pounding heart beat and general nausea for about six days.  I had to fly the day after the treatment and the doctors recommended against that but I had no choice. Now I understand why they didn't think it was a good idea. That may have made the side effects last longer for me.

Ed

[okarol]

After 3 years post transplant, my daughter Jenna also had rejection, and was treated similarly. The treatment caused her white blood cell count to go dangerously low but injections helped. Her creatinine dropped from 4.3 to 3.4 and was been pretty steady for the last 2 years and 7 months. It's gotten up to 3.9 recently so she is exploring dialysis options and looking for a donor. The rejection contributed to her antibody level increasing, and she's currently at 100%.
Sounds like you're doing all you can and I hope you remain stable for a long time. My friend Lori had a kidney transplant that never got below creatinine of 2.2, and it lasted 19 years!

[edersham]

okarol,

I have thought a lot the last several months about your daughter's last couple of years and was inspired unto maintain  a good attitude because of her exceeding the first prediction of less than a year. I'm sorry to hear about the recent rise in her creatinine but I know that she coudn't have a better support person than you to search for a difficult to find match.  I'm 65 years old and not expecting another transplant.  I'm working on projects that have gone on for 20 years and I need another 6 to complete so I'll do.what it takes to shoot for that goal but that does not include in center dialysis or a fistula. Thank you for all you do for this board.

Ed

[okarol]

  Thanks Ed

[MooseMom]

I am so pleased that you are feeling well and that the chronic rejection is being dealt with.  I imagine that chronic rejection is always a worry for any transplant patient, which is why they keep such close tabs on your creatinine, etc. 

This might be a silly question and one to which no one may have an answer, but do they know what exactly causes chronic rejection?  I mean, why has this happened to you but not to some other patient who is two years out of tx?  Is this a common thing?

[jeannea]

Everyone with a kidney transplant eventually has chronic rejection. Your body never adjusts to having a different organ. The question is how long before you get it and how easily they can control it. These factors are different for each person. Most doctors can't say why one person has it after 2 years and another doesn't for 30 years. The only thing you can do is take your medicines faithfully, get your blood tests, and track your vital signs so that problems can be found before things are really bad.

Ed, I hope you continue to do well. You should have many years yet. Stay strong!

[MooseMom]

Jeannea, yeah, I thought that would be the answer!  LOL! 

[M3Riddler]

   I  have been catching up with the threads for a couple of days. I haven,t posted since early March when. I was  diagnosed with chronic rejection at my two year transplant eval at Mayo.  Diagnosis was by biopsy. Prognosis was it couldn't be cured and that slowing it down was the best case scenario. My creatinine had gone from 1.8 to 2.4 in two months. The first thing was increasing prograf and cellcept , adding prednisone and and an IVIG treatment.  Something seems to have helped because I have been doing pretty good for almost 6 months now and my creatinine has slowly returned to 2.02. Stil some proteins  in my urine but less than before.  I had not heard of IVIG for chronic rejection but the protein dropped within a week so it must have done something. The side effects  of IVIG were interesting but
Apparently  worth it. I'm over feeling sorry for myself and actually feeling really good right now.  I'm back to 2 months between visits now so I'm ready to shoot for at least 5 years now. Just another bump in the road I guess but some bumps are bigger than others as you all know.

Ed

Ed,

I also have experienced chronic rejection on three different kidneys... Its hard to say how long they will go as we are all different.  Chronic rejection is just something that we dont have much control over. Our bodies are very smart and quick to notice a transplanted kidney.   Some can go years, while others months....   Just keep your chin up and educate yourself...   I know its very hard to take mentally, but at least we have the option of dialysis to keep us going...
 
///M3Riddler