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Aaisha.Dar
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« on: September 24, 2019, 06:49:47 PM »

Hi all,

Im writing to you from the hospital. I went because I had diarrhea and vomiting. I first blamed it on the meds but when I saw blood in the stool I was told I needed to call the doctor. I was not able to eat anything. I ate 2 chips and afterwards had to use the bathroom. I wasnt keeping anything inside. I went to the er stayed for a good u hours. They did blood work and we waited. They admitted be and put me in observation status. I had to poop and pee in the toilet hat so they could test it. Right now we are still waiting.
Im sure I told you all that they did a biopsy one week after transplant. They did 2 types of tests and the results of one of the tests takes a lot longer than the first one. They found my disease (fsgs) in the kidney. It was early rejection. So now I will be undergoing plasmapheresis to remove the antibodies. Im not sure if my diarrhea has anything to do with this. Doctors say it will be tough one day dialysis the other day plasma. I had a bad feeling about this kidney shortly after the transplant. Im repeating history I went through this with my dads kidney. This is all very tough. Prayers are needed.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: September 25, 2019, 05:02:51 AM »

O dear Aaisha, sending healing and strength vibes to you


   :flower;


Wishing you strength, luck and love, Cas
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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
iolaire
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« Reply #2 on: September 25, 2019, 05:23:47 AM »

Sorry Aaisha.Dar, I hope with the hospital care they can stabilize things so the new kidney gets another shot.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
LorinnPKD
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« Reply #3 on: September 25, 2019, 10:10:56 AM »

Aaisha, I am thinking of you today.  Love and strength!
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #4 on: September 25, 2019, 01:02:51 PM »

Sending you my best wishes.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
GA_DAWG
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« Reply #5 on: September 26, 2019, 09:32:59 AM »

So very sorry Aaisha. Absolutely praying for you and hope you get better.
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Aaisha.Dar
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« Reply #6 on: October 09, 2019, 09:04:48 PM »

Thought you all deserved an update its been quite a journey. After I was readmitted it was non stop diarrhea and vomiting day and night. This is something ill never forget because it was an awfully tough time. Not to mention my veins weren't any help either. The special iv team came and i was stuck at least 4 times with an iv needle before I refused and just said no more. I told my doctor to place and line and they gave me a Hickman cath right next to my permacath.
I was alternating one day dialysis and one day plasmapheresis for thr week and we started to see some improvement. Creatnine was dropping and i was PEEING. Its was amazing. The second week the doctors canceled dialysis and said if they were to do dialysis it would put the kidney into shock so we just stuck to plasma and an iv anti rejection medication. Things started to get stable and I was able to go home. I came home last Saturday. My numbers arent exactly where the doctors want it to be so right now I am doing plasma as an outpatient 2 times a week. At this point im not complaining its better than dialysis. Depending on labs if things get worse it will he 3 times a week and if they are better 1 time a week. The biggest obstacle is recovery. Going back to the hospital was emotionally and physically draining for me. My legs ache a lot seems they lost all its muscle. Stairs are quite difficult for me AND having to pee every 40 min is something I am not used to. I was placed on a high dose of prednisone so carrying the extra weight around is also a work out. I should be eating during recovery but because my abdomen is so bloated i feel out of breath after a few bites. My hemoglobin is low, my phosphorus is extremely low so I feel the weakness is due to that. Any tips for recovery would be great.
I am happy they use my permacath for for plasma it makes things easier and they use my hickman cath for the infusion once a week. I wondet though how long it will last because my immune system is non existent.
I want to know if anyone else been through a similar situation like me? Ita reassuring knowing im not the only one and tips would be great.
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iolaire
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« Reply #7 on: October 10, 2019, 05:58:11 AM »

Thanks for the update.  The the recovery slow but push yourself as well to rebuild your stamina and muscle.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Aaisha.Dar
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« Reply #8 on: October 10, 2019, 09:07:10 AM »

Yes when I have to go to the hospital for treatment and clinic its a long walk I take it slow and dont use a wheelchair
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GA_DAWG
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« Reply #9 on: October 10, 2019, 07:59:41 PM »

I'm just glad you are beginning to see some positive developments. Hang in there.
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kitkatz
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« Reply #10 on: October 26, 2019, 09:03:26 PM »

That is a lot to go through.  I hope you are feeling better every day.
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Take it one day, one hour, one minute, one second at a time.

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