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Author Topic: Looks like I'm rejecting new kidney  (Read 982 times)
gilders
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« on: April 12, 2019, 12:26:32 PM »

I'm 3 1/2 weeks post transplant and since the beginning of this week my kidney function has been declining from 47% to 36%.
The transplant team suspect that I'm having an acute rejection to the kidney. I need to return tomorrow morning for the fourth lot of blood tests this week and if no improvement they will re-admit me to the ward and begin anti-rejection treatment. Usually they would biopsy the kidney before starting treatment, but as it's the weekend and they're so certain it's rejecting, they're going to start treatment immediately.

The best news is that acute rejection is often controllable. The bad news is that I am likely to be on high dose steroids for 6 months. I managed about 15 years of steroids on and off, but the for the last 10 years I've really struggled with them and feel awful on them. I expected to feel somewhat better after transplant, not worse. At the moment I feel physically very well, after all my function is at 36% and I've spent a long time before the transplant below 10 %.

I don't want this post to put anyone off getting a transplant. I'm still expecting to get this likely rejection under control and not require dialysis. I have no regrets, just really concerned about how bad I feel on steroids.
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MooseMom
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« Reply #1 on: April 12, 2019, 02:09:37 PM »

I am so extremely sorry to hear this.  You are right in that acute rejection IS often treatable; transplant teams have a protocol for this occurrence ready at all time.  But that doesn't make it easier for you.

I'm sure that the proper response to your post is something along the line of, "Well, 6 months of high dose steroids is a small price to pay for a new kidney that works better."  But this sort of minimizes your past experience with steroids, which sounds pretty awful.  I'm sure it is a very daunting prospect.  I am assuming you've told your transplant team about how you have felt in the past on steroids; have they offered you any ideas on how to manage the anticipated side effects?  Is there anything that could make you feel better?

Good luck to you, gilders, and do let us know how you get on.  I'm wishing you the best of luck.  Please let us know how we can help.  I am feeling optimistic on your behalf. :2thumbsup;
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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."
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« Reply #2 on: April 13, 2019, 08:24:49 AM »

Really sorry to hear this. I hope it can be turned around-- at not too high a cost to you.
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gilders
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« Reply #3 on: April 14, 2019, 08:01:19 AM »

From what I understand -
There's 2 types of acute rejection, acute cellular rejection and antibody-mediated acute rejection. The acute cellular rejection responds well to steroids and the the antibody one is much trickier to control.
Unfortunately as they already new before my transplant that I have 1 antibody against the donor, it looks extremely likely that I have the complicated one.
I had IV steroids yesterday and today and my function has dropped very slightly again. I had a ultra sound scan yesterday which showed that I have good blood flow through the kidney, no blood clot and no massive lesions or anything that would cause these symptoms. This was good news as I don't think physical damage to kidney can be treated.
I will be having a biopsy tomorrow that should give some clearer answers. I am concerned that my original illness (vasculitis) may be relapsing as I'm showing some signs and this could cause permanent damage to the kidney. It is unlikely though as some of the anti-rejection meds are the same as those used for vasculitis, but it can't be ruled out until I've had the biopsy.

If it is my antibody attacking my kidney there is ways to combat this with plasma exchange and various strong drugs that will completely deplete my immune system. The problem is they can't keep my immune system so drastically suppressed for long (I would need to live in a bubble). So I think the plan will be to lower the immuno-suppresion and hope when my antibodies begin to build back up, they don't detect the new kidney. I really don't know what my chances are for that?
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MooseMom
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« Reply #4 on: April 14, 2019, 08:57:10 AM »

OK, so, they've ruled out physical damage caused by poor blood flow or clotting.  You are right; this is good news.  It's always good to be able to rule out possible scenarios.

I don't have any answers to your question about the success rate of the treatment plan you outlined (plasma exchange, etc.), but I am hoping that once YOU have the answer, you'll let us know.  I am saddened by your predicament, but I am also very interested to learn from it.  This is what IHD is for.  I've learned a lot from you in this discussion, so thank you for posting.  I look forward to reading more of your posts on this subject, and needless to say, I wish you the very best.

Good luck with the biopsy.  I hope your team gets some clear answers.
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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."
iolaire
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« Reply #5 on: April 14, 2019, 01:48:24 PM »

Gilders sorry you are going through this. I hope the treatments end up working.
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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.
gilders
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« Reply #6 on: April 15, 2019, 10:36:45 AM »

I had my third and final steroid infusion today.
Biopsy did not occur today as I'd expected for 2 reasons - 1. I had been told to cease warfarin on Saturday, but carry on with heparin jabs. I followed this plan, but was told today that the heparin has to cease the night before the biopsy (I had taken my heparin jab at 6pm yesterday) 2. The main reason - The biopsy had not even been booked.

As a day/outpatient the earliest they could book me in for biopsy would be Thursday. The problem with this is that biopsy results are ready the next day, except weekends and bank holidays. This friday is Good Friday and results wouldn't be ready until next Tuesday, i.e. after Easter Monday. This is leaving it too long in my and the dr's opinion.
As an inpatient you can jump the queue as an urgent case. I was due to be admitted tonight ready for biopsy on Tuesday, or Wednesday at the latest. BUT there is definitely no beds available on the renal ward. They are trying to get me on a general surgery ward, but as it stands there's is no bed available for me. This is a bit of a national crisis within the UK's NHS and has been going on for a few years now. I don't want to come across as anti-immigration and can't say for a fact that any of the beds are been taken up by immigrants, but realistically it is putting a massive strain on the NHS.
They have even said that a bed can't be guaranteed for me tomorrow.

I hate spending the night in hospital, especially when it's just to "jump the queue", but I really need this biopsy doing before Thursday, so appropriate treatment can commence this week, not from Tuesday next week!

My kidney function has been stable at 35% (it had dropped from 46% within 5 days) since I started IV steroids (500mg) each day for the last 3 days, but from tomorrow I will be on oral steroids at a MUCH lower dose. I don't know if this lower dose will keep my kidney function stable, or if it will begin to rapidly decline again.

If only there was an available bed and a slot for my biopsy, I would feel much safer!

Thank you for showing interest and wanting updates. It's helps as a release to report what I'm going through and hope it helps anyone else in a similar situation.
I'm still happy that I chose to have a transplant and hope my story doesn't put people off. I am a complicated case and most patients won't go through these difficulties. Even if the worse happens and I have to go on dialysis, I will know that I gave transplant my best shot!
« Last Edit: April 15, 2019, 10:46:41 AM by gilders » Logged
Kathymac2
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« Reply #7 on: April 15, 2019, 11:02:22 AM »

I am so sorry you are going through all these difficulties. I am still hoping for a transplant (6+ years on the waiting list) so I find your posts very compelling.  I wish you all the best and hope that at the very least all of these bureaucratic issues get resolved quickly so that the doctors can get on with the business of saving your kidney 
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gilders
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« Reply #8 on: April 15, 2019, 01:20:42 PM »

Good luck Kathy. I hope you get the call soon. Is there anyone wiling to donate to you, but not compatible. If so, and they are willing, there are schemes that allow people to swap kidneys around with other couples to greatly increase chances of a match and have all the advantages of a planned live donor operation.
I am glad that my difficulties aren't making you second guess if transplant is for you. I'm still glad I chose to go for transplant rather than dialysis and certainly haven't given up on this new kidney.
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MooseMom
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« Reply #9 on: April 15, 2019, 01:27:51 PM »

No one likes spending more time in the hospital than is absolutely necessary, but in your case, I think it's worth it to be able to get that biopsy ASAP.  You want to begin treatment soonest, and they can't do that without biopsy results.

There are few things more stressful than having to wait for results of this nature.

We are all wishing you the very best and are grateful for your updates.  Thank you!
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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."
Kathymac2
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« Reply #10 on: April 15, 2019, 03:50:14 PM »

Good luck Kathy. I hope you get the call soon. Is there anyone wiling to donate to you, but not compatible. If so, and they are willing, there are schemes that allow people to swap kidneys around with other couples to greatly increase chances of a match and have all the advantages of a planned live donor operation.
I am glad that my difficulties aren't making you second guess if transplant is for you. I'm still glad I chose to go for transplant rather than dialysis and certainly haven't given up on this new kidney.

Thanks gilders. At my age (69) I am not willing to ask for a kidney from a (living) younger person and everyone I know has health issues that preclude donation. So, I wait and hope my health doesn't go south before a match is found. All I can say is thank God for dialysis. Without it I wouldn't even have the option to wait for transplant.

Please keep posting as your health allows.  Sending all good thoughts.

Kathy
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gilders
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« Reply #11 on: April 18, 2019, 02:26:47 AM »

Some EXCELLENT news!

Went in for biopsy on new kidney yesterday. They did bloods to check my coagulation level and all the other bloods they usually take 3 times/week.
Amazingly my kidney function had shot up to 51% from 36%. I haven't had a function that high for many years. I hate the side effects of steroids, but if the last 3 days of IV steroids is the reason for this improvement, I'll have to stop seeing them as the devil's pills.

I asked if the biopsy was now necessary as the treatment seemed to be working. They still wanted to do it to get answers and confirm it was a rejection episode. If there's no sign of rejection, then steroids can stop, but I can't see what else it could have been.

The biopsy itself was much better than the previous ones I had in my back, on my original kidneys. But for 10mins to 2 hrs after, I was in a lot of pain. After lying flat on my back for 7 hours they let my wife bring me home at 10pm last night.

I just hope my function remains around 50%!
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Cupcake
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« Reply #12 on: April 18, 2019, 07:40:07 AM »

Congrats! hope the biopsy look good.
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MooseMom
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« Reply #13 on: April 18, 2019, 07:49:05 AM »

Oh, this is terrific news!  I am so very happy for you!  What a relief!  I'm still curious to know what the biopsy shows.

Thanks again for letting us know, and please keep us posted!
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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."
iolaire
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« Reply #14 on: April 18, 2019, 08:53:25 AM »

Amazingly my kidney function had shot up to 51% from 36%.

Good news.

How do they measure and report "kidney function" to you?  Is that a value you see in your labs or do they only communicate it to you with those terms?

I've never been given/told a measure like that, instead I'm always told (and can read on LabCorp or Quest laboratory patient portals) my Creatinine level, now settled in the 1.4 mg/dL with a "normal" Reference Range: 0.76-1.27 mg/dL. I'm also tested for eGFR If NonAfricn Am where my level of 61 is reported as normal in a Reference Range: >59 mL/min/1.73.  (The eGFR If Africn Am 70 normal - that doesn't apply to me.)  Additionally sometimes when they were calling on the phone they would report the BUN now 17 normal with Reference Range: 6-24 mg/dL.
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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.
Charlie B53
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« Reply #15 on: April 18, 2019, 09:31:36 AM »

Seems as though Prayers are working.

I will continue.
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MooseMom
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« Reply #16 on: April 18, 2019, 11:00:22 AM »

I've never been given/told a measure like that, instead I'm always told (and can read on LabCorp or Quest laboratory patient portals) my Creatinine level, now settled in the 1.4 mg/dL with a "normal" Reference Range: 0.76-1.27 mg/dL. I'm also tested for eGFR If NonAfricn Am where my level of 61 is reported as normal in a Reference Range: >59 mL/min/1.73.  (The eGFR If Africn Am 70 normal - that doesn't apply to me.)  Additionally sometimes when they were calling on the phone they would report the BUN now 17 normal with Reference Range: 6-24 mg/dL.

Wait a minute.  I've never been near an egfr of 61!  The highest egfr I've ever had (and I also go through Quest's patient portal) was 58 this past October, and that was with my lowest ever creatinine 1.04 (I think these readings are outliers.)  My egfr usually hovers around 50 and my creatinine around 1.2, so with this in mind, I don't understand your readings of 61/1.4.   How can your egfr be that high with a creatinine also that high?  I'm guessing that age is a factor?  I'm probably older than you are!

I had a mysterious hike in creatinine a couple of years ago, and I had one reading of egfr 38/creatinine 1.42.  And you have an egfr of 61 with a creatinine at 1.4?  Do you think age is that big a factor (I am over 55, I'll say that much  :P)?  That's a pretty big discrepancy in our readings!  What do you think would explain that?  (All of my other values have been well within normal range for all of these years.)

Thanks for any thoughts you may have.  I'm a bit baffled.

edited to add:  I just found out from an NKF publication that "men have a higher GFR than women at the same level of serum creatinine...due to the higher average muscle mass and creatinine generation rate in men."  I guess that explains it, assuming this statement holds true for transplant patients, too.  So, I'm old AND female, which is a pretty sad state of affairs on just about every level.  Sad.  Still, I value my invisibility.  LOL!
« Last Edit: April 18, 2019, 11:12:18 AM by MooseMom » Logged

"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 #17 on: April 18, 2019, 01:09:40 PM »

Iolaire, your eGFR number roughly translates as a percentage of function.
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iolaire
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« Reply #18 on: April 19, 2019, 05:12:53 AM »

Thanks gilders.  Moosemom yes Im male and turn 45 next month so I have sex and age going for me. I think Id take your creatinine!

My egfr was as low as 28 once with a creatinine at 1.4x, normally is closer to 51, but in the last few months has been just above 60.
« Last Edit: April 19, 2019, 05:16:37 AM by iolaire » Logged

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.
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« Reply #19 on: April 19, 2019, 06:54:08 AM »

Sorry I am so late to this posting. Gilders, I am sorry for what you've been through but glad that treatment seems to be on the up and up!

I have some cellular rejection but there is a plan for that in place. I just don't know it yet. My egfr hasn't been influenced yet but you guys really scared me/got me thinking.

At what point did your egfr slide into the 50's and 60's? Was it right after transplant or did it decline after a few years? I see posts such as "I have never been near 61" and such. I'm a year past tx and my egfr has consistently been over 100. Using US measurements, my creatinine has been as low as 0.58 but often around 0.76. (There was a point I went down into the 80s egfr because I caught some strange virus they couldn't pinpoint.)

I know drugs slowly take their toll on a new kidney so I literally have anxiety about my number starting to fall. You guys are obviously doing well with your numbers though as you seem to feel good/keep active. I guess my numbers come down age. Kinda scared now though... guess I want to hoard all the function.
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iolaire
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« Reply #20 on: April 19, 2019, 07:12:34 AM »

At what point did your egfr slide into the 50's and 60's? Was it right after transplant or did it decline after a few years? I see posts such as "I have never been near 61" and such. I'm a year past tx and my egfr has consistently been over 100. Using US measurements, my creatinine has been as low as 0.58 but often around 0.76. (There was a point I went down into the 80s egfr because I caught some strange virus they couldn't pinpoint.)
Mine has always been at this level, same with creatinine.  Your creatinine is extremely good -  Normal creatinine clearance for healthy women is 88-128 mL/min. and 97 to 137 mL/min. in males (normal levels may vary slightly between labs). - https://www.medicinenet.com/creatinine_blood_test/article.htm .  Personally I'm not worried about my levels as they are in the just out of normal range.  But on the flip side I completely understand gilders's concerns, but I also hope/think that a person can enjoy a long healthily life with kidney function in the 30% range once its stabilized.
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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 #21 on: April 19, 2019, 08:25:17 AM »

UT, the most important think I've learned is that creatinine and egfr are not really the most important numbers to look at.  They are maybe the FIRST numbers to look at, but they are not the most important.  My numbers are only half of what yours are, and always have been, but ALL of my other lab values are perfect.  My blood pressure is perfect, my phos and potassium is perfect, my blood sugar is perfect, I am not anemic, my WBC counts are all normal, and all of my mineral values are normal (although my magnesium is on the low side of normal, despite taking supplements).
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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."
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« Reply #22 on: April 19, 2019, 11:25:46 AM »

Iolaire, yes, I agree that (once stabilized) a person can enjoy a pretty decent life around 30% eGFR. It gives freedom from dialysis and still relative liberty in regard to diet/travel/exercise/life in general. It's important though that any conditions that led to the renal failure in the first place are actively managed to keep that new kidney working.

And MooseMom, you're correct as well. My local neph told me that with creatinine levels this low, the number can bounce all over so I might not get a "great picture" at that moment but rather, a larger view that things are working well enough. As for working well enough, you're so correct in that other parameters matter too to illustrate a "happy kidney." If all is "balanced" as it should be, obviously things are well.

I guess going into this whole thing (I was pretty much rubber stamped onto the list; very little discussions with tx coordinator or surgeon) it was never discussed with me what to expect in regard to numbers. Obviously, docs can't predict this at all but I guess I have no idea of a successful threshold, if that makes sense. I honestly didn't know that around 60% was considered successful. No idea at all! To be honest, I have anxiety over the numbers, since it became such as focus in the years leading up to dialysis. For instance, my potassium and phosphorus were always on target and only my egfr/creatinine/urea and CBC showed something was up. Without that collection of tests, everything looked normal.

So, my post-tx blood work is very similar to my dialysis blood work, until it comes to the egfr/urea/creatinine. Blood pressure is a different story LOL. Seems as though some SPK tx patients get low blood pressure. With cellular rejection, it hasn't showed a change in numbers, but I at least know something is going on. So, numbers definitely can be deceiving. Better to approach it all more holistically.

At the end of the day, as long as a new kidney achieves whatever function, get off and stay off dialysis for awhile, the patient feels good and is able to live a more normal life, that is what matters. I just want to hoard all the function for me!  ;D
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gilders
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« Reply #23 on: April 19, 2019, 02:19:59 PM »

UT, your eGFR numbers look amazing to me. Before transplant I was down to just 8. Immediately after transplant it was 14, day after 32, 2 days after 41 and the first few weeks after I was moving around 44-49. Then I the drop from 47 - 36, 3 weeks post transplant.

All my other bloods are looking good and blood pressure is around 135/80 (but is jumping around a little). I would have never imagined a eGFR of 100, so I'm very happy with 51 and hope it stays around that number.
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UkrainianTracksuit
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« Reply #24 on: April 20, 2019, 03:50:11 PM »

Gilders, I hope that your new kidney stabilizes and allows you the best health for a long time!  :cheer: Also, it is wonderful that you have a team on top of it and making sure it all works out in the long run.  :) I understand what you mean about the BP jumping around but once all is stable, with a BP of 135/80, you'll be all set to go.

In my case, I guess I just have to accept what the docs say to be happy with a really good kidney (I am...) and don't go crazy asking existential questions over it. But it leads me to believe my donor was rather young or very (very) healthy. Sighhhh....
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