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Author Topic: Looks like I'm rejecting new kidney  (Read 2784 times)
gilders
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« Reply #25 on: April 21, 2019, 06:36:48 AM »

I have been very happy with my care and treatment and although things haven't gone smoothly, the drs and nurses have been on top of everything and reacted quickly.

Well, this was until Easter came into play!

As previously mentioned, a week last Monday my kidney function began to drop and by the Friday it had dropped from 47% to 36%. The drs believed this was rejection, but I was pleased how quickly they responded and the day after (last Saturday) I began treatment of 500mg IV steroids. This immediately stopped the decline and the day after my 3rd and final IV steroid infusion, my kidney functioned had jumped to 51%. It was on that day (last Wednesday) that I had the biopsy and changed to oral steroids (20mg). I expressed my concern that dropping from 500mg IV steroids to 20mg oral steroids seemed like a massive reduction. I was reassured that oral steroids worked differently and the dose wasn't really comparable.
Since last Wednesday I have been VERY worried. Firstly the biopsy result wasn't ready by the next day (Thursday). This means that due to Easter the earliest that anyone will look at the biopsy is next Tuesday. I went for a blood test yesterday (Saturday) and if my kidney function had of stayed stable at 51% I wouldn't have been concerned about the biopsy result delay. BUT within 3 days of dropping the 500mg IV steroids to 20mg oral steroids, my function has dropped 9% to 42%. If this rate continues, my function could be as low as 30% by Tuesday. If the biopsy doesn't get looked at on Tuesday, I feel that my function will drop to irreversible levels!
I feel at the moment I'm just sat at home with my kidney being rapidly rejected and nothing is being done (beyond 20mg steroids). There will only be a registrar dr in hospital at the moment and know that if I get to speak to him the reply will be that they don't know what course of action to take until they get biopsy result. I just hope it won't be too late by then!

My only option is to contact a dr on Tuesday when the hospital will be running at normal levels again and get him/her to push for my biopsy to be looked at asap.
I'm really not happy that, at least in the UK, hospitals (except A&E) grind to a complete halt during weekends and especially bank holidays. How they can morally expect patients who are in precarious positions to receive no care from Good Friday to the following Tuesday is beyond me. My wife works at a supermarket and she has to work bank holidays, yet people who have others lives in their hands can just say "no thanks, I fancy taking 4 days off in a row". They should of course not lose these bank holiday days, but should have them spread out throughout the year so that there is some limited cover for bank holidays.
Sorry about the rant, I'm just very concerned at the moment.
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Cupcake
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a good year for Chevys

« Reply #26 on: April 21, 2019, 11:44:37 AM »

Maybe you would be a little reassured to remember that kidney function/failure is not especially linear; they are right to say that IV solumedrol is not the same as oral prednisone dosage wise

There is some margin of error in measuring kidney function (as all lab tests); I don't know what it is, but it may be as much as +/- 5%. So maybe it overestimated one time, the under estimated the next. Different labs, different machines, etc.

I would hope for the best and I am wishing you good luck. Meanwhile stay hydrated and enjoy the holiday!
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PD for 2 years then living donor transplant October 2018.
gilders
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« Reply #27 on: April 25, 2019, 04:13:09 AM »

I have some potentially excellent news!

The biopsy result is back and shows NO signs of rejection!!!
But, as always, with me, things are never quite so simple.
The surgeon was very pleased to inform me that there was no signs of rejection. He said there was some slight signs of damage to the tubules in the kidney, but this is quite common due to the trauma that the kidney goes through during the transplant process and there's a good chance function will improve again.
So all was looking great until he asked how long I'd been on steroids. He then realised that I'd started treatment for rejection (i.e. the IV steroids) before the biopsy. Therefore there is a chance that I WAS suffering from rejection and the steroids worked quickly and by the time I had the biopsy, signs of rejection had disappeared. I was originally told that if the biopsy shows no sigh of rejection I would not need the steroids and could cease them, but now that the biopsy can't be 100% relied upon, he wants me to continue steroids until he's discussed it with the rest of the team of transplant drs.

The only way for the biopsy to show for certain what was going on was to have it BEFORE any treatment. I do not have an issue with the dr who decided to commence treatment before the biopsy for the following reason - I had to wait 5 days for biopsy and due to Easter I had to wait a further 7 days for the results. If treatment had of being held off until I had the biopsy, I believe too much damage could have been done to my kidney. In an ideal world I would have had the biopsy done the same day as rejection was suspected, but that was never going to happen with the NHS.

If my blood results show an improvement in function then it almost certainly means there's no rejection, either because there never was any or the steroids are working well. If there is further decline, then it could be that the IV steroids were working (and gave a false clear reading on the biopsy) and the oral steroids aren't at a high enough dose to prevent rejection.

Blood results came through as I was typing.
Well, as usual with me, there's never a simple answer as my function has neither increased or declined. Although this doesn't give me a clear answer to what's going on, I think stability in function strongly suggest that there's NO rejection, either because there never was any rejection (just post transplant blip) or the 20mg steroids are stopping rejection.

The main thing is that currently my new kidney is NOT declining in function. So overall I'm very happy.  :2thumbsup;

My function only went above 50% once post transplant. It mainly fluctuated 1-2% around 45%. So my current level of 42% is fairly reasonable. I have been eating more since on steroids and an increased intake of meat can increase your creatinine levels, which in turn can effect your estimated function percentage.

I'll definitely sleep easier tonight. But can imagine I'm going to be nervous before every blood test for a while to come.

The surgeon has also said that he's happy for me to come to clinic on a weekly basis now, instead of 3 times/week. So he must be confident that things are good!
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iolaire
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« Reply #28 on: April 25, 2019, 04:45:45 AM »

Thatís good news.
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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.
MooseMom
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« Reply #29 on: April 25, 2019, 11:00:38 AM »

Outstanding!!!  :yahoo;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly

« Reply #30 on: April 25, 2019, 03:32:41 PM »

Good news!!! Now drink!!!


    :yahoo;
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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 #31 on: April 26, 2019, 03:25:15 AM »

Good news!!! Now drink!!!


    :yahoo;

My daily intake was 9 Litres (over 300 US fl oz) per day once I came off IV fluids. This has been reduced until I got as low as 3.5 Litres (118 US fl oz). I have lost some weight this week and when I measured my output, it was over 4 Litres. Therefore I'm having to increase my intake to 4.5 litres (just over 150 US fl oz). It feels like a lot to get through, but if that's what my kidney needs, then I'll make sure I keep drinking.
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MooseMom
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« Reply #32 on: April 26, 2019, 12:09:49 PM »

Golly gosh, that IS a lot of fluid to get down your throat in just one day!  But you're right; if that's what you need, that's what you do.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
gilders
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« Reply #33 on: April 30, 2019, 09:36:04 AM »


The stent came out earlier today.  :yahoo;
I watched the video feed while the nurse "fished around" for the stent. It was a bit tricky to grab as the stent had managed to to lie completely flat against my bladder wall. Therefore she struggled to grab the stent without grabbing my bladder wall.
If anything, even with the slight difficulties, it wasn't quite as bad as I was expecting.

So happy that that should be the last of the invasive procedures.

I'll be back at hospital tomorrow for my, now weekly, check-up. So long as my kidney function is stable/improved, I think things should go very well from now on.

More good news, my INR was in range, so after 7 weeks of injecting my stomach with heparin, I no longer need them. Also, after 6 weeks of wearing compression stockings, I no longer need them.
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MooseMom
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« Reply #34 on: April 30, 2019, 09:45:19 AM »

Good for you!  You've passed some big milestones; you must feel so relieved!!

Congrats!  :yahoo;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #35 on: April 30, 2019, 01:01:20 PM »




   :beer1;
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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 #36 on: May 01, 2019, 01:00:26 PM »

Blood tests showed kidney function is still stable at eGFR 42, so it looks like whatever caused the dip is now in the past.  :2thumbsup;
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cassandra
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When all else fails run in circles, shout loudly

« Reply #37 on: May 02, 2019, 08:17:28 AM »




  :cheer:     :cheer:     :cheer:  Keep it up buddy, and go on, have that extra special drink on me.  :angel;




Lots of love, luck and strength, 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
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