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Aaisha.Dar
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« on: October 17, 2019, 10:47:33 AM »

Hi all,
Im writing to hopefully get some advice or insight on my situation. So im sure most of you know this is my second kidney transplant and I did have delayed graft function as well as acute rejection so I am undergoing plasmapheresis treatments.
With my first kidney transplant it was my dads kidney and immediately we saw signs of rejection so I did undergo plasmapheresis. After a year rejection occured but at this point it was irreversible and they removed the kidney and I was placed on dialysis.
With this recent transplant the only reason we started to see function in the new kidney was because of these treatments. What I am trying to say is I am afraid if we stop these treatments rejection sill will occur again. I dont want to have to do these treatments just to keep the kidney alive afterall I got the transplant to have a bit more freedom and improve my quality of life. As you can see I am double minded and stressed about this situation.
The good news is the doctor said we will just try plasma once next week as opposed to twice a week so lets see how that goes.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: October 17, 2019, 11:19:19 AM »

Hi Aaisha I understand your stress etc in the situation you find yourself in. However as your Dr said to try 1x a week with plasmapheresis next week, I would see that as a positive.


Lots of love, luck and strength, Cas


   :flower;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
gilders
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« Reply #2 on: October 18, 2019, 11:33:08 AM »

Hi Aaisha,
I'm sorry I can't give you any useful advice, but wanted to say that I hope things settle soon. I'm just over 6 months post transplant and must admit I was VERY scared when it looked like I was having a rejection episode and would hate to be in the position you are in.

Please keep us updated.
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kristina
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« Reply #3 on: October 18, 2019, 01:50:11 PM »

Hi all,
Im writing to hopefully get some advice or insight on my situation. So im sure most of you know this is my second kidney transplant and I did have delayed graft function as well as acute rejection so I am undergoing plasmapheresis treatments.
With my first kidney transplant it was my dads kidney and immediately we saw signs of rejection so I did undergo plasmapheresis. After a year rejection occured but at this point it was irreversible and they removed the kidney and I was placed on dialysis.
With this recent transplant the only reason we started to see function in the new kidney was because of these treatments. What I am trying to say is I am afraid if we stop these treatments rejection sill will occur again. I dont want to have to do these treatments just to keep the kidney alive afterall I got the transplant to have a bit more freedom and improve my quality of life. As you can see I am double minded and stressed about this situation.
The good news is the doctor said we will just try plasma once next week as opposed to twice a week so lets see how that goes.

Hello,
I just wanted to mention that every kidney-transplant, just like every dialysis-treatment, is experienced by everyone in their own individual way differently ...

The most important "thing" for me to do, if I would experience such symptoms like yours, would be, to ask a nephrologist straight away and ask them kindly, what they think is going on with the new kidney and the reaction of the body to the new kidney  .... and what does he/she think about it. You could also ask them about their experiences with kidney-patients with symptoms like yours after the transplant etc. Please ask them about it. Perhaps they do not know about your distress?
I have also noticed that you have not yet mentioned the function of your new kidney? What does it suggest in your blood tests? Do you know ?

I do hope your kidney is doing well and please be aware, that most nephrologists warn their transplant-patients, that the first year can be very difficult and very confusing and apparently after one year the body "learns" to calm down after this huge kidney-transplant-upheaval.
Good-luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Aaisha.Dar
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« Reply #4 on: October 19, 2019, 02:19:57 PM »

Hi all,
Im writing to hopefully get some advice or insight on my situation. So im sure most of you know this is my second kidney transplant and I did have delayed graft function as well as acute rejection so I am undergoing plasmapheresis treatments.
With my first kidney transplant it was my dads kidney and immediately we saw signs of rejection so I did undergo plasmapheresis. After a year rejection occured but at this point it was irreversible and they removed the kidney and I was placed on dialysis.
With this recent transplant the only reason we started to see function in the new kidney was because of these treatments. What I am trying to say is I am afraid if we stop these treatments rejection sill will occur again. I dont want to have to do these treatments just to keep the kidney alive afterall I got the transplant to have a bit more freedom and improve my quality of life. As you can see I am double minded and stressed about this situation.
The good news is the doctor said we will just try plasma once next week as opposed to twice a week so lets see how that goes.

Hello,
I just wanted to mention that every kidney-transplant, just like every dialysis-treatment, is experienced by everyone in their own individual way differently ...

The most important "thing" for me to do, if I would experience such symptoms like yours, would be, to ask a nephrologist straight away and ask them kindly, what they think is going on with the new kidney and the reaction of the body to the new kidney  .... and what does he/she think about it. You could also ask them about their experiences with kidney-patients with symptoms like yours after the transplant etc. Please ask them about it. Perhaps they do not know about your distress?
I have also noticed that you have not yet mentioned the function of your new kidney? What does it suggest in your blood tests? Do you know ?

I do hope your kidney is doing well and please be aware, that most nephrologists warn their transplant-patients, that the first year can be very difficult and very confusing and apparently after one year the body "learns" to calm down after this huge kidney-transplant-upheaval.
Good-luck-wishes from Kristina. :grouphug;

Kristina,
At first my creatnine wouldnt move from 5 but ever since I started these treatments it has slowly trended down. I will get labs done Monday. I have also heard the first year is the hardest so I need to remember to try to take things easy and be prepared and stay on top of things.
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kristina
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« Reply #5 on: October 20, 2019, 01:52:49 AM »

Hello and good luck for tomorrow with your lab-tests and I am glad that you are determined to take "things" a bit more easy during the first year after your transplant.
Good-luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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