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Author Topic: Rejection questions  (Read 4777 times)
sisterdonor
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« on: February 02, 2008, 08:24:21 AM »

Hi,

I donated my left kidney to my brother 3 1/2 weeks ago.  It was a rough surgery for him because my kidney had two arteries.  Apparently 75% of it was working right away and 25% wasn't.  Another more senior doctor was called to the OR to help.  I have no idea how much time elapsed or how much handling the kidney went thru during that time.  Eventually they figured out that when they flipped the kidney over it worked so that's how it was transplanted. . 

Right after surgery my brother seemed to be doing well.  His output was good and his creatinine had come down as low as 1.5 at one point but then inched back up.  It was between 1.9 and 2.1 for awhile.  His incision and the site of the transplant has been continuously painful causing him not to be able to sleep.  He thought that was normal never having had surgery before.  He figured it was supposed to remain painful but after 3 weeks that should have lessened.  He didn't know that and was just enduring the pain.   By the way, his incision is twice the size of others I've seen pictures of.  I assume they opened him up wider because of all the trouble they had in the OR on the day of surgery.

Now, his creatinine is up to 4.0, he has a fever of 101 and chills.  He's back in the hospital.  They've done a sonogram and have him on IV steriods.  He was told the kidney is bruised and there is fluid around it.  I don't know much more than that except that they are saying they'll do a biopsy early next week and he should expect to remain in the hospital.

Has anyone had a rejection episode or similar complications that can shine some light on this for me as to what to expect?  How did your team manage it?  What is the outcome? 

As the donor and more importantly as a sister I'm beside myself with worry.  I live in another state and had already flown home so I can't even be there with him let alone talk with his doctors. 

I look forward to hearing from anyone who's had any experience like this.
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okarol
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« Reply #1 on: February 02, 2008, 09:07:14 AM »

Sisterdonor  :cuddle;
I haven't experienced this but I am praying everything works out alright. Jenna never had any pain after the first couple of days. She was seen in clinic 3 days a week after the transplant and they pushed on her incision and always asked about pain or discomfort. Transplant teams have a number of things they can do if there's rejection, and using steroids is one of them. It's also possible that he has a blockage in the uretor that can cause pain and inflammation. It could be an infection. I know it must be very difficult for you being far from him, but hopefully things will stableize in the next couple of days and you can speak with him. Try not to worry too much (I know, easy for me to say.)
How are you feeling since your surgery? Thinking of you both and sending {{{HUGS}}} - take care of yourself.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Psim
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« Reply #2 on: February 02, 2008, 10:27:12 AM »

I've got no experience or wisdom to share, but FWIW I'm thinking of you in this difficult time.
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KT0930
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« Reply #3 on: February 02, 2008, 11:04:59 AM »

I had a rejection episode within ten days of my second transplant, and they gave me OKT3, which is an alternative when the rejection is steroid-resistant. I have not read of anyone on IHD getting it, so I don't know if it's used anymore or not. This was in 2002, and there are some pretty severe side effects that are possible (i.e., they had a crash cart parked right outside my room the entire time I was getting the treatment and for several hours afterward). I did end up with pulmonary edema shortly after the treatment was finished, but that was treated as well.

The reason they gave me the OKT3 was because I started showing the signs of rejection late on Friday night, and they would not have been able to get the lab work back until Sunday afternoon or Monday to know if it was steroid-resistant or not, so they went ahead with the more aggressive therapy. I'm not positive, but I think I remember them saying that you can only receive treatment with OKT3 once in your life - I think because after the first time it will not be effective.

Hope this helps. Sorry your brother is going through this, and you're not able to be with him. Know that he's in good hands and that the doctors want to save the kidney as bad as you and he do.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Romona
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« Reply #4 on: February 02, 2008, 02:52:31 PM »

Time will tell what is going on. A friends husband got a kidney that was bruised in the begining of December. She updated today and said his creatinine is now 1.6. He had some problems and it was high as 11. I recently had fluid around one of my kidneys, I had gotten 2 from a 13 month old. They determined it wasn't a problem and are not treating it. I had a nephrostogram done. When they do one they insert thin tubing into the kidney. They often take a sample of the fluid. If the fluid needs drained off they do a nephrectomy. The fliud is drained off using the tubing attached to a collection bag. If there are blockages they can put in stents.
There are many thing that can make creatinine go up. I don't know which anti rejection drugs your brother is on, but high levels can make it go up. Infections also make it go up.
Please keep us updated on his progress. Take Care of yourself too. You need lots of rest.  :grouphug; :grouphug;
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paris
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« Reply #5 on: February 02, 2008, 03:46:54 PM »

I am sorry this is happening.  I will pray they find the answer and a solution quickly. We all want your kidney to work great for your brother. We think donors are true heros.  Keep us updated and remember we are all here for both of you :grouphug;
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kellyt
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« Reply #6 on: February 02, 2008, 03:53:28 PM »

 :grouphug;  :grouphug;  :grouphug;  :grouphug;  :grouphug;  :grouphug;  :grouphug;  :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #7 on: February 02, 2008, 05:00:55 PM »

My kidney rejected in sept of 07 and one of the definitive tests was the biopsy that showed there was serious scarring.

The TX team thought there could be a couple of reasons there was rejection - Hydronephrosis (narrowing of urethra and urine backing up causing pressure in kidney doing damage) or just old fashion rejection. They started with a nephrostomy (to drain urine from kidney just in case it was not getting out) and they started me on IV prednisone and another med - but creatinine kept going up they were going to use OKT3 (yes still using it KT) but they decided after over a week in steady decline that it was not worth the danger. 

First I would say do not stress yourself  - you still have healing to do and it would not help the situation if you were ill too. Test results fluctuate and it has not been that long yet I would wait to see what the biopsy looks like because that will tell you  if he is headed in a bad direction (showing damage) it is not the end of the world if so but it is concrete evidence of what is going on. Then just make sure that the doctors tell you about all the choices for treatment there are many drugs they can use to stop rejection (if it is a case of his immune system is not properly suppressed).

This is simply my experience which is much different than your brothers but I hope you can use some of the info
I do hope he comes through with his new kidney working fabulously and I hope you recover and do well too I am pulling for you both  :grouphug; - I know all too well the dissapointment that comes with rejection I don't want you two to have to find out. Good luck and stay diligent and positive!
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20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
Joe Paul
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« Reply #8 on: February 03, 2008, 06:41:00 AM »

Good luck, will keep you and your brother in our prayers  :thumbup;
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« Reply #9 on: February 03, 2008, 07:45:21 AM »

Will be praying for good news on the biopsy.   :grouphug;
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lola
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« Reply #10 on: February 03, 2008, 07:47:55 AM »

Hang in there. Otto's brother had the same thing happen he got his kidney from his wife, it was really scary but everything turned out good, it's been 5 years now and the kidney is still doing great. :grouphug;
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kellyt
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« Reply #11 on: February 20, 2008, 03:53:02 PM »

Any more news, Sisterdonor?
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
sisterdonor
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« Reply #12 on: February 26, 2008, 01:36:02 PM »

An UPDATE:

Well, it appears my brother is now back on the right track.  Creatinine is 1.6 now.   :clap;   
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devon
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« Reply #13 on: February 26, 2008, 01:39:09 PM »

SWEET!!! Good news! Glad to hear that and I hope it continues! :bandance;
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willieandwinnie
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« Reply #14 on: February 26, 2008, 01:44:12 PM »

 :yahoo; sisterdonor. That is such great news. Keep us posted.
« Last Edit: February 26, 2008, 03:06:04 PM by willieandwinnie » Logged

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Sunny
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Sunny

« Reply #15 on: February 26, 2008, 02:40:02 PM »

Super news! I am so glad to hear your brother is having good results. I hope it stays that way.
You are a wonderful sister to him.
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Sunny, 49 year old female
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kellyt
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« Reply #16 on: February 26, 2008, 03:00:13 PM »

 :yahoo;    That's wonderful!  Congratulations to both of you!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
okarol
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« Reply #17 on: February 26, 2008, 03:03:54 PM »

 :bandance;   Yay!!! Hope he does great! How are you feeling?   :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kidney4traci
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« Reply #18 on: February 26, 2008, 03:14:14 PM »

Sorry I missed this thread earlier, but so relieved when I read he is doing better!!  Whew!  Will continue to pray for continued healing and recovery.  Hope you are well too. 
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
st789
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« Reply #19 on: February 26, 2008, 03:15:25 PM »

My thought and pray with you.
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KT0930
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« Reply #20 on: February 26, 2008, 05:28:43 PM »

That's GREAT news! So glad to hear it's back in a good range!!
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
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« Reply #21 on: February 26, 2008, 06:59:56 PM »

That is fantastic!  :bandance; I am hoping he keeps headed the right way!
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
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WOO HOO NEW KIDNEY PEEING !!!(Transplant 23/10/07)

« Reply #22 on: February 27, 2008, 01:27:07 AM »

Great News to Hear !  :clap;  :2thumbsup;  :clap;
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ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine 

                                                                                                                  
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
Sluff
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« Reply #23 on: February 27, 2008, 04:30:08 AM »

AWW..that is fantastic news sisterdonor.  :grouphug;
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Romona
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« Reply #24 on: February 27, 2008, 09:06:33 AM »

 :2thumbsup;
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