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Author Topic: what's up??  (Read 4379 times)
dtwbcs
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« on: October 17, 2014, 01:31:43 AM »

I donated a kidney 4Feb14 for my Brother. He is doing awesome. But I am having a hard time with recovery. I guess I am slow to heal. My GFR is 37.I was informed that at 6months it should have been a 50.Now at 8months its a struggle. I am on the Renal Diet. I drink 4l of water a day. They stated my rt kidney is a little swollen. Might have a stone. Go have a CT scan today. Is my GFR going to improve? Or should I prepare for in the future I will start dialysis??? :waiting; :(
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kristina
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« Reply #1 on: October 17, 2014, 02:29:48 AM »

I am very sorry for the problems you encounter with your kidney function
after donating a kidney to your brother and I do hope very much
that your kidney recovers soon again.
I remember reading years ago that sometimes that sort of thing can happen
and you need to give your kidney a little more time whilst treating it very gentle
with a kidney friendly (easy digestible) diet and plenty of drinking water each day etc,
for it to recover and function well again.

Best wishes and good luck from Kristina.

P.S. Please talk as soon as possible to a nephrologist about the accurate amount of water you should drink every day to keep your kidney functioning!
Could it also be that by drinking 4 (four!) liters of water every day you may "overchallenge" and "overwhelm" your kidney a little?
« Last Edit: October 17, 2014, 02:54:57 AM by kristina » Logged

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Rerun
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« Reply #2 on: October 17, 2014, 07:32:29 AM »

Let us know what CT says....

  :pray; 
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Michael Murphy
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« Reply #3 on: October 17, 2014, 09:08:33 AM »

From what I understand if you need dialysis you will go right to the top of the transplant list.  Living donors I was told have a priority on the list.
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jeannea
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« Reply #4 on: October 17, 2014, 01:26:13 PM »

I'm sorry you're having trouble. Are you drinking that much because someone told you to or are you that thirsty? Do you know your creatinine? Hopefully the CT will tell you something.
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dtwbcs
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« Reply #5 on: October 17, 2014, 06:41:05 PM »

Got back from the transplant facility. Ran tests on me. Creatinine is at 1.5. Nephrologist wants me to continue to drink that amount of water." might be slow to recover"(Kristina) is what they stated also. GFR is at 53.Better but they want to see it improve. No CT scan results. Changed diet to DASH diet. Kept talking about chronic kidney disease. Not impressed with my local Nephrologist. What he couldn't do in 3wks the clinic did in a day ::) Eased my concerns today.
Thanks .....
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cassandra
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« Reply #6 on: October 18, 2014, 05:19:00 AM »

Glad to hear your GFR is improving, OMG the stress.....
Keep drinking, and improving, and you've done a wonderfull thing!!

 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
SooMK
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« Reply #7 on: October 19, 2014, 11:14:16 AM »

As a recipient of a kidney from an unrelated donor (AKA a wonderful amazing friend) your post fills me with anxiety. It seems like you are getting somewhere now though and I hope your kidney is just a little lonely and will step up very soon.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
dtwbcs
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« Reply #8 on: October 20, 2014, 10:17:24 AM »

With that CT scan, they think I  have some blockage going on. Maybe a stone. Should know something this week.Yeah ,on that Renal diet; in one month I dropped 3lbs. I still need to drink 4L but they changed my diet to a "Mediterranean "or DASH diet-dietary approaches to stop hypertension. Basically , I think they want me to make "healthy" choices. They did limit my red meat intake though.

Danny
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cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: October 21, 2014, 11:05:43 AM »

Peculiar coincidence that blockage suddenly appearing after the op. However the Mediterranean diet sounds yummy

     ;D

Good 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
jeannea
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« Reply #10 on: October 21, 2014, 12:54:45 PM »

We should probably all make healthier choices in our diets. I know I could do better. That part sounds ok.

If you have a stone or other blockage, are they going to do anything? It seems to me you wouldn't want that to continue.
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dtwbcs
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« Reply #11 on: November 05, 2014, 04:34:56 AM »

Well last month was a busy one for me. I had three test done-one a week plus a clinic visit. Had an ultra sound, CT scan , and a renal scan with Lasix. The end results were : My creatine is now at a 1.5. My GFR is at a 53.Kidney looked good inside and out. Good flow.Yes ,  the Nephrologist wants me to drink that amount,4Liters of water. I still need to watch what I eat; but am off the renal diet. Lost 3lbs on it. Still want me to limit red meat though. Monthly labs and another clinical visit in February to see where I am at. They want to see my kidney improve; but now I feel they are not sure how much more of an improvement It will achieve. They stated I am at an acceptable range, for now...they are thinking that" that there kidney is just slow to recover" . In the meantime I am still fatigued at the end of the day. Sometimes I have to take a break , during the day , to kinda rest ; then I can keep going . I am also " still in the recovery stage" they say. At least I have answers. Am glad to have something to check going forwards.

-Still no regret-
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cassandra
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When all else fails run in circles, shout loudly

« Reply #12 on: November 05, 2014, 08:24:30 AM »

Thanks for that news. I'm so glad to hear that. Now keep drinking and enjoying your near normal diet. Is your bro okay too?

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
2020 start Gambro AK96

       still on waitinglist, still ok I think
jeannea
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« Reply #13 on: November 06, 2014, 12:34:12 PM »

I'm glad to hear they are working on helping you. I hope you continue to get better. The fatigue is tough. Take care of yourself and get the rest you need.
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dtwbcs
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« Reply #14 on: November 07, 2014, 07:15:39 PM »

Thanks 4 asking--Oh my Brother is doing awesome! I don't regret any of this extra stuff that I am dealing with. He  weighed 109lbs before the plant and now he weighs 142lbs and is active doing Special Olympics Bowling again! I stayed with him while he did dialysis 3 x's a week. So short of having my blood cleansed; I lived the life also. Since he lives with me and I take care of Him; we both were kinda on that renal diet from Dec 2010 till Dec 2013 when I was able to donate for him. I still have to watch my diet a little; oh yeah and my BP is at a "new" normal now. But I try and document my stuff for the Doctors to review ...

NEVER give up!!

Danny in Texas
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cassandra
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When all else fails run in circles, shout loudly

« Reply #15 on: November 13, 2014, 11:14:21 PM »



          :beer1;                   :flower;


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
2020 start Gambro AK96

       still on waitinglist, still ok I think
dtwbcs
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« Reply #16 on: May 06, 2015, 07:55:47 AM »

Just an update--  I found out that my kidneys prior to the surgery were at 79%, so that explains why the remaining one dropped so low before it rebounded to 53%.
Since then it has leveled off at that number.
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PaulBC
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« Reply #17 on: May 06, 2015, 09:38:43 AM »

This is interesting to me as a potential donor. I think my kidney function is better than that (at least good for my age) but I am not sure how to convert it to a percentage. I'm surprised they wouldn't have told you this important information up front. Isn't there supposed to be a donor advocate who would make sure that your best interests are taken into account before donation?
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jeannea
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« Reply #18 on: May 06, 2015, 07:07:07 PM »

PaulBC, I'm not sure about percentages but they do put the donor's interests first. Within about a week of the donation, the donor should have a renal arteriogram. They determine which kidney has the best function. You keep the best one and donate the worse one. I took my mom to her arteriogram appt. the procedure is a bit annoying. They thread through the femoral artery (I think) from the groin area to the kidneys, kinda like a heart cath only kidneys. Then you have to lay flat for 6 hours or so after. I got my mother's right kidney, her "worse" one. That was still plenty of function for me. It worked right away and I had it 11 years. I just don't remember getting percentages with this info. Probably some centers like percentages and some don't.
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