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Author Topic: What are the symptoms when your transplant is rejecting (chronic rejection)?  (Read 7716 times)
natnnnat
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« on: September 27, 2010, 04:16:11 AM »

In another thread,
http://ihatedialysis.com/forum/index.php?topic=20282.msg339997#msg339997
Okarol recently posted information about acute and chronic transplant rejection.  But the descriptions are about the medical processes, without going into what it feels like for the rejector.

I didn't meet Gregory till four years ago so I wasn't around when his kidneys failed.  I was surprised when I found out that transplants don't last indefinitely, and of course I sometimes worry about how long his champion third kidney will do its good work.  Sometimes at night he tells me he feels "renal":  fluey, achy, leaden limbs, tingling fingers, headaches.  Since he has had a flu for a week now (and the flu that's going around apparently hits people for ten days), this question has been more on my mind.  We went to the GP who put him on two kinds of antibiotics and said to go to hospital if he gets worse.  He hasn't got any worse, just didn't get any better till I think tonight, after a week of "flu", Gregory might be a bit better than he was... he asked for soup tonight (has been resisting food all week) and his temperature is down a bit.  So I think he's recovering now. But occasionally we have looked at each other and said, if this isn't flu then... [we are in deep and abiding trouble].  And I've been meaning to ask this kind of question for awhile.

For people who have had a transplant reject:  does it feel the same as kidney failure?  What differences are there, if any?  How did you know it was rejecting... I mean, you would have had issues showing up in labs,  where there physical feelings which came before it affected your labs?
« Last Edit: September 27, 2010, 04:26:53 AM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
cariad
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« Reply #1 on: September 27, 2010, 09:59:50 AM »

My first rejection episode, acute on top of chronic, 6 months post-transplant, creat around 1.1 I already felt crap, so there probably was not much by way of contrast. I remember a horrible night with what was probably a UTI, and next thing I knew, I was in hospital, but the order could be all wrong in my head. I did not tell my parents anything, because anything to do with urination or similar would have been something I would have kept entirely private. (I am still like this to this day, and will not tell a doctor about these things if my husband happens to be in the room.  :embarassed:)

Second rejection, acute, many years after my transplant, creat reached a high of 1.9. I was entirely asymptomatic. Until I had the biopsy, then I was bed-ridden for two days.

Third and final rejection, mostly fatigue and nausea. This was the drawn-out last gasp of the transplant. I could usually tell that I was having a creat spike, because I would throw up. Then my system adjusted, and I was mostly able to be all right, even at a 3.6 to 4 creat range. Just tired, occasionally nauseous, short of breath when I would walk short distances. I had a wretched medical centre tell me that I might feel fine now, but they have so many patients who are at 15 GFR one week, then phone the next week and say they believe they have the flu and their GFR has gone down to 5 or something. (I caught the full complement of contagious diseases from my children every year, so I looked at her and said "Trust me. If I call you and say I have the flu, I have the flu." However, there must be something to the flu feeling if they told me this.)

I would say no, the rejection episodes on average felt nothing like kidney failure until my kidney had all but failed, but for some people it probably will. How often does Gregory get labs these days? Did the GP draw his bloods? Flu can of course damage the transplant, so I question why no anti-viral from the GP? One antibiotic I can understand, but two? Ick. I feel for him. Flu can last a long time, so if he is not measurably improved, I would ask for an anti-viral. Hope this helps! :grouphug;

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natnnnat
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« Reply #2 on: September 27, 2010, 08:14:25 PM »

He gets his labs every few months, and they are always alright.  I have emailed his GP with graphs of his temperature and blood pressure (I am SUCH a graph nerd), and describing the situation.  To make sure that we are doing generally the right things.  GP didn't draw his blood.  If she responds to emails I will follow your advice and ask about anti virals.  Otherwise I'll get on the phone regarding same (the GP, who is the only sensible GP we can find to date, is located a 40 minute drive from home, so if I can do this via e-means I will!)  I think he is probably getting somewhat better, this is just a long slow flu. 

Your answer is really helpful though Cariad because when I am lying awake at night wondering, now I have someone else's descriptions to compare with Gregory's. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
cariad
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« Reply #3 on: September 28, 2010, 11:39:59 AM »

So glad to hear it helped. I can probably give you even further info in a few days, as I have come down with flu symptoms as well. :(

Headache, fever around 101-101.5, shivering, extremely, brutally nauseous, and more achey than usual, which is saying something for me.

Don't know if this is rejection or just your typical flu. Not scared yet, though!

Hugs to you and Gregory.



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« Reply #4 on: September 28, 2010, 11:43:25 AM »

So glad to hear it helped. I can probably give you even further info in a few days, as I have come down with flu symptoms as well. :(

Headache, fever around 101-101.5, shivering, extremely, brutally nauseous, and more achey than usual, which is saying something for me.

Don't know if this is rejection or just your typical flu. Not scared yet, though!

Oh, that sounds abysmal.  A serious question...at what point do you get scared?  What sort of symptom would send you racing to your doctors?  Have you told them that you are ill?  If so, what are they saying for you to do, if anything?
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« Reply #5 on: September 28, 2010, 05:50:29 PM »

Damn and blast!  Sounds like Gregory.  He had the runs too and shocking low blood pressure.  But I am pleased to report that today his temperature is down from the 38s (about 101) to 36 (about 97 F), his BP is coming back up (from around 95/57 ! to 129/60, which is getting there...) he is starting to eat voluntarily and he is walking around blinking.  Still has a headache.  So I think his kidney isn't going to come flying out of his ears.  Thank god.  (I wonder if he was cured by the slice of pizza I gave him for tea last night... I got sick of chicken broth!)  His flu has been 9 days now. 

Cariad, I expect that husband of yours will be working on the situation and you wont  need us clucking over your nest, but its so hard not to cluck!  Try to keep little bits of fluid / food down.  Hoping you are sleeping easy... let us know how you are going okay?

Here's a get well flower for you.
 :flower;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #6 on: September 29, 2010, 05:05:34 AM »

I had chronic rejection and probably some cyclosporine toxicity after many years (like 20) on it.  The only sign was creatinine creeping up slowly.  I was switched to Cellcept but the kidney failed after a total of 23 years and a bit.  The last year I started to have the symptoms of uremia..metal breath, fatigue, no appetite.

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(2 1/2 hours X 5 weekly)
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« Reply #7 on: September 29, 2010, 06:29:39 AM »

When my last kidney was rejecting, I had extreme pain around the kidney. I knew there was something wrong with it, but my labs were ok, so they never bothered looking further.  They put me on antibiotics, because they thought I had an infection, and it's possible I did, but the pain didn't go away.  They checked me for hernia, they checked for so many other things that I just stopped complaining about the pain.  I was transplanted in May of 2001, and the pains started in February of 2002 and continued till sometime about 2005, I'd say.  They told me that I was losing the kidney about August of 2003, but I already knew it. I'd known it for over a year at that point.

I truly think that if they had biopsied me in February of 2002, they would have seen the beginning of the decay, and may have been able to reverse it.  By the time they did, there was so much scar tissue, they couldn't get any regular tissue to test
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« Reply #8 on: September 29, 2010, 11:56:30 AM »

Thanks so much for the concern, Nat! So glad and relieved that Gregory is on the mend.

I am feeling quite a bit better today now that I have determined the drug combination that works best for me - 2 Tylenol (paracetamol) and a zofran, plus the usual suspects, with Ativan at night. I never thought Zofran worked for me, but I think it saved me this time around. Gwyn bought me some Theraflu (liquid) and brought me up a pint of iced tea. I took a large sip of the iced tea, drank the Theraflu and immediately vomited it all back up. Zofran is a dissolving drug, so I put it in my mouth and just concentrated on being really still for about 30 minutes.

Gwyn called an ambulance because I did not think I could make it to hospital sitting up in a car. Talking triggered my gag reflex, which is an unfortunate reaction I've had before. So, I did get to lie down in the back of the ambulance, but the one ambulance guy told me I had to stay awake (so they could make sure I was OK with just a glance). By the time I got to the ER, Zofran had kicked in so at least I was not so nauseated. Then they said they were very busy, sent me to triage for a ridiculously painful blood draw, and wheeled me out to the waiting room, where I sat for 1.5 hours with a splitting headache. Gwyn finally brought the kids by to visit me, and I immediately grabbed his hand and said "I have to get out of here." and we walked out.

I just put a call in to the transplant center for advice. Gwyn is (of course!!!) deep into some crucial work issues with some of their biggest clients, so while he has offered to come home early, it really is not possible.

MM, I got scared the minute I vomited and realised I would not be able to keep any fluid down in that condition. The only liquid I had had by evening was a pint of iced tea  and half a cup of hot tea in the morning before I felt truly wretched. Dehydration is the monster to a renal transplant patient. Also, low blood pressure. Mine was 106/77 just now, which is a little low, but fine. The only person in this trial who has lost a kidney contracted a virus, his blood pressure went too low, and the transplant clotted off.

In retrospect, I should have let my husband attempt to drive me to hospital though. It will be interesting to see what the ambos ride will cost us since I was not admitted. I hope NW phones with some useful data - I will pass anything interesting along.

Riki, I'm sorry to read of your experience. That's just ludicrous that you should be in pain all that time and no one would properly check the graft. >:( I'm sorry that happened to you!
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« Reply #9 on: September 29, 2010, 12:36:55 PM »

Oh cariad, you sound so calm and matter-of-fact!  How do you do that? :o  Yes, please do pass along whatever NW tells you; I'm really interested to know what they have to say.

I guess I'll go get my flu shot sooner rather than later.  All this talk about flu...

I hope you and Gregory are both all better very soon.
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« Reply #10 on: September 29, 2010, 06:19:01 PM »

I'm worried to hear about your hospital adventure Cariad, this is NOT GOOD.  Sounds very distressing also, I completely hate puking.  A talk-gag reflex would be truly horrible.  But I'm not surprised to hear you did a runner from the hospital.  Gregory is very very hospital averse, in particular he wasn't interested in fronting into ER to be seen by the weekend staff.  I theorise that this is partly to do with preferring to do the "watching and waiting" in his own home, and partly this is his way of avoiding being considered for procedures (out of sight out of mind).  You are in a different situation, as a test patient.  Wouldn't they have whipped you straight into some special suite and straight in front of the head honcho, as you are a test subject?

G's coming back from flu-land I think but its a two steps forward one step back sort of animal, this flu.  Thank god he stopped puking at least.  But the part of your note which I read and re-read was the part about low blood pressure.  Gregory's BP has been low this whole time, got down to (95/60) one night and (99/59) the next morning.  Hence, a very dizzy and light headed man.  Oops.
Today, he wont let me take him to the GP or anything:  he says, I'm alright, I'm alright, I'm ALRIGHT.   
::)
I guess he is.  He's on the improve for sure, BP is back to (118/57).   

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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #11 on: September 29, 2010, 06:23:59 PM »

Monrein, Riki, I am glad you have posted with your experiences.  This thread has turned into a discussion of flu, which is related but I am still very interested to hear answers to the original question.  There is a mind set which says I should not suggest that one day Gregory's kidney will reject, but there it is, and I learn from your experiences with gratitude.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #12 on: September 29, 2010, 09:03:23 PM »

This is from the National Kidney Foundation:

Are there any signs or symptoms I should watch for?

Yes. Even though you are taking your medicines every day, you may still develop rejection of the kidney transplant. You need to know your body very well. If you have any of the following, you should call your transplant center right away:

    * a drop in your urine output
    * a fever above 100 degrees
    * tenderness of your new kidney
    * bloody urine
    * flu-like feelings
    * weight gain (more than 3 pounds in two days)
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« Reply #13 on: September 30, 2010, 09:45:30 AM »

I'm worried to hear about your hospital adventure Cariad, this is NOT GOOD.  Sounds very distressing also, I completely hate puking.  A talk-gag reflex would be truly horrible.  But I'm not surprised to hear you did a runner from the hospital.  Gregory is very very hospital averse, in particular he wasn't interested in fronting into ER to be seen by the weekend staff.  I theorise that this is partly to do with preferring to do the "watching and waiting" in his own home, and partly this is his way of avoiding being considered for procedures (out of sight out of mind).  You are in a different situation, as a test patient.  Wouldn't they have whipped you straight into some special suite and straight in front of the head honcho, as you are a test subject?

I am with Gregory on being hospital averse. I always have that moment in hospital when I wonder why I did this to myself AGAIN. If I had gone down to Chicago, I am sure they would have paged my surgeon and I would have had consults with him and the rest of the floor, but I went to a local hospital with no stake in this trial. I've also just found out that they did not run the bloods after taking them, and now Gwyn shall be calling them and threatening them to not even dream of charging Medicare or insurance for this non-service. So I have no information on what the flu has done to my creat, but my Monday labs were my usual .9. This is encouraging, as I was already feeling flu symptoms at that point.

I am to get a "Respiratory Viral Panel" done and Northwestern's infectious disease specialist will calculate a dose of Tamiflu for me (that goes through the kidneys, so I guess it more than just your basic maths). I do not have to go down to Chicago!  :yahoo;

Thanks, MM. I guess I am calm because I've had a great many flus in my life, none has been my undoing yet. When you dodge these bullets your entire life, you'll find you're not so very afraid of guns anymore. :) 

Karol gave a comprehensive list of concerns. The research nurse seemed particularly concerned about drop in urine output (Gah! I really couldn't say!) pain around the graft site, and temperature. She said my surgeon believes it is just the flu. She did not ask about blood in urine or weight gain, but I have lost weight, and I think I would have run to the phone to dial NW if I saw any blood!

Nat, I am so sorry to scare you about blood pressure, but hopefully it is something else that he can monitor to avert disaster. I have no idea how low is too low, but I've always heard that transplant patients have a higher bp target than non-patients. A doctor once told me that I might feel dizzy at 105/75, but most people my age would feel great at that level. The way I have always been told to keep bp up is to drink, drink, drink! I reckon your Gregory is already on that.

Keep feeling better, Gregory!  :bestwishes;
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« Reply #14 on: October 27, 2010, 03:02:22 AM »

I remember when my kidney was rejecting, it felt nothing like Kidney failure.  Rejection is way more painful.  During the rejection, I would feel extreme pain around the kidney, at the same time it would be really tender.  The only way that I can describe the pain is...Think of when your fingers get really cold in the winter and when you put them under water to warm them they get a burning sensation.  Think of the kidney feeling the burn like your fingers and then something biting at your kidney.  The whole time your feeling the worst flu like symptoms.  That was the physical symptoms that I was going through.  I a pretty intense mental breakdown as well.  They eventually figured out that it was attributed to a toxic buildup of the immunosuppressant called Rapamune.  For some reason by body wouldn't digest it fully.  I had like 10x's the limit built up in my blood.  My reaction was considered the most extreme reaction to the drug.  Everyone's reactions to rejection is different, but I'm wondering if anyone had an kind of extreme reaction to Rapamune, or was is just me.
   Hows Gregory feeling now?
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« Reply #15 on: October 27, 2010, 04:52:07 PM »

This is from the National Kidney Foundation:

Are there any signs or symptoms I should watch for?

Yes. Even though you are taking your medicines every day, you may still develop rejection of the kidney transplant. You need to know your body very well. If you have any of the following, you should call your transplant center right away:

    * a drop in your urine output
    * a fever above 100 degrees
    * tenderness of your new kidney
    * bloody urine
    * flu-like feelings
    * weight gain (more than 3 pounds in two days)


Great list, Okarol.  That is why you weigh yourself morning and night, and keep some kind of log regarding fluids in and out.   I was told to always call the center if your fever is over 100 (not just now, but always).  I know I am more cautious being new to all of this.  But, I owe the donor the repect of following rules.   I like lists and rules    :rofl;
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« Reply #16 on: October 27, 2010, 05:37:28 PM »

I remember when my kidney was rejecting, it felt nothing like Kidney failure.  Rejection is way more painful.  During the rejection, I would feel extreme pain around the kidney, at the same time it would be really tender.  The only way that I can describe the pain is...Think of when your fingers get really cold in the winter and when you put them under water to warm them they get a burning sensation.  Think of the kidney feeling the burn like your fingers and then something biting at your kidney.  The whole time your feeling the worst flu like symptoms.  That was the physical symptoms that I was going through.  I a pretty intense mental breakdown as well.  They eventually figured out that it was attributed to a toxic buildup of the immunosuppressant called Rapamune.  For some reason by body wouldn't digest it fully.  I had like 10x's the limit built up in my blood.  My reaction was considered the most extreme reaction to the drug.  Everyone's reactions to rejection is different, but I'm wondering if anyone had an kind of extreme reaction to Rapamune, or was is just me.
   Hows Gregory feeling now?

the pain around my kidney when it was rejecting was nothing like I'd ever felt before.  It felt like something was in there and was trying to turn me inside out.  When it happened, I could see pulsating under my skin.  I was able to show my mother when it happened, but there was never a doctor around when it happened, so they figured it was all in my head.  I wonder now if whatever caused the pulsating under the skin is what also caused the scarring of the kidney
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« Reply #17 on: October 30, 2010, 05:49:00 AM »

   Hows Gregory feeling now?

Hi DinSD, thanks for asking after Gregory, in fact he is in hospital tonight, back in the renal ward.  He has had a "flu" on and off for 6 weeks now.  It kind of went away and now has come back.  Lately, he shivers like a madman at night.  I commented earlier today in another post:  "Sitting here listening to Gregory coughing in the other room.  ...  Finally getting him to his renal doctor next Wednesday but its like trying to wash a cat.  Meanwhile, nice day out there.  A lovely Saturday morning. "  Soon after this post, I got up and went to look at him; found him lying on the floor in a patch of sunshine, shivering like a dog.  I said to him, if you don't stop shivering by 1pm, I'm taking you to hospital.  He said, "I'm not going to hospital", a comment which i of course ignored.  I don't want another night watching him shiver.

Soon later he came out and said, alright, take me in to hospital.  Long story short, they don't know quite what the go is yet (its the weekend here and the emergency staff aren't renal specialists though we struck a good nurse and a good doctor, I caught them explaining to each other what creatnine was measured for, and various other comments about measures for kidney function.   His blood was tested (I am so relieved to get this done):  calcium high at 3.6, phosphate 1.7, and creatnine was 518 (i think in the US you would say creatnine was 5.9?  I'm not sure though, I've never tried this conversion before.)

In emergency they thought maybe either (1) the antibiotic he was taking for the flu has affected his kidney function? or (2) he might have pneumonia which might be affecting his kidney function?  or (3) he might have a virus?  Basically, they did the right thing, by testing and testing, and they put him on a saline drip which has improved his outlook, and they sent him upstairs into Renal.  He is still shivering like a wet cat, but he isn't burning up any more, his skin was cool for the first time in ages, and his eyes weren't bloodshot... and his blood pressure was coming up too. 

He said he wasn't necessarily going to stay the night but decided he may as well.  Lets hope he stays till they can work out what is going on.  At any rate, he'll have to catch the bus home if he decides to leave before I'm satisfied with the testing and working out what's happening.  I'll go back in tomorrow and see how he is. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #18 on: October 30, 2010, 05:54:13 AM »

    * a drop in your urine output
    * a fever above 100 degrees
    * tenderness of your new kidney
    * bloody urine
    * flu-like feelings
    * weight gain (more than 3 pounds in two days)

Gregory is peeing a torrent, and has no tenderness.  But his temperature has stayed between 37-38.5 C (98.6-101.5 F) and he has flu like feelings.  He has lost stupid amounts of weight because of the flu like symptoms:  15 kilos since August 11.   He had traces of blood in his urine when the GP tested him for UTI on Thursday morning. 

But as I say, they aren't talking as if this is rejection.  They are talking something else (virus / flu / ? ) affecting kidney function.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #19 on: October 30, 2010, 01:57:41 PM »

Oh, wow, Nat - I've been off the boards for a bit and am really sorry to read this. I hope they can fix him up quickly. Well done getting that man into hospital!

I am sitting here in America pulling for Gregory with everything I have. Gwyn too, of course. I hope they are right and this is just some virus that the specialists can make short work of now that Gregory is in the right place.

I hope you are holding up yourself. Please keep letting us know how you both are doing. Creat is high, but I had a creatinine spike that was probably just as high (adjusting for weight differences since I was still a kid) and my kidney lasted an additional 20+ years.

Gwyn and I send our best to the two of you.
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People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #20 on: October 30, 2010, 03:03:07 PM »

Cariad, I will tell him about your creatnine spike, i am sure it will be a great comfort to him, especially the 20 years that followed.  Poor bloke, he looked very very worried last night.    Thanks for your vibes from over there!
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #21 on: October 30, 2010, 06:36:25 PM »

do you know if he was tested for infection with a urine c&s or blood culture?  That's probably one of the easier things to rule out
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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« Reply #22 on: November 05, 2010, 06:22:38 PM »

Hope the hubby is doing better!!

When I was going through Chronic rejection the I had some discomfort when I urinated, kinda felt like a UTI. I didn't really have any other symptoms a little fatigue maybe. I was walking around with a creatinine of 4-5 for 2 years. When I finally got to the level I needed dialysis (creatinine was 8) my urine output slowed way down almost to nothing...I knew the kidney was done.

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #23 on: November 06, 2010, 05:54:51 AM »

Did I post somewhere that they have finally decided that PCP is the right diagnosis?  That pronouncement was finally made by an infectious diseases expert on Friday.  He said, as far as the PCP is concerned, he is responding well to the antibiotics, and "its all over bar the shouting".   They have put him on tablets and taken out his cannulas, and I don't have to wear a mask when I sit in his room anymore.  So now we are waiting for renal and endocrinology to be satisfied and maybe Gregory can come home. 

Renal say that his creatnine might be high because they have had him on Baxtrine, which makes creatnine go up, they said.  They (they!) took him off the Baxtrine yesterday, so maybe his creatnine will come back down again. And then maybe they will lower the prednisolone?  He is worried about rejection tonight, so I read these responses to him so we could think about it.  He doesn't have any pain in his kidney, and he is weeing a torrent.  He is applying himself to drinking water like it was a full time job.  He seems to have no fluid retention anywhere (his ankles are thin like bundles of sticks).   We both think the pneumonia must have kicked the kidney pretty solidly, but it probably isn't over yet.   

I think probably he is buzzy and shaky and nervy and worried, partly because he is on so much prednisolone?  He has the shakes:  on Thursday his hands shook so much that he couldn't drink a cup of water, it was spilling with either hand, in the end he did it using two hands.  I wanted to cry when I saw that.  He tried to use an internet kiosk downstairs and couldn't use the mouse either.  He is so thin too, this pneumonia has really beat him around.  They say they have only seen 1 case in ten years of this strand of pneumonia, but this year they had 9 cases so far.  So its rare for transplant patients (but deadly, and relatively common, for HIV patients). 

Gregory says he is sh*ing himself tonight.  And he really wants to come home.  "If its on its way out I want to come home and enjoy me life".   It's hard because he is in he room at hospital talking to me on the phone late at night, I want to go break him out again and bring him home but I know he should probably stay in until they "let" him out.

[sitting on hands icon]
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
cariad
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What's past is prologue

« Reply #24 on: November 06, 2010, 04:20:57 PM »

Oh, Nat! I keep following your information on Gregory and the pneumonia but keep forgetting to tell you how much you and Gregory are in my thoughts. I don't doubt he is scared, and I hope the kidney bounces back. I don't think I've ever had pneumonia, so cannot offer any encouraging anecdotes, but Chris' story in the other thread is certainly good news (in that he got over it - not saying it was good news that you got pneumonia, Chris). My kidney did survive a succession of flus, killer strep, viral meningitis, and heaven knows what else in the 34 years I had with it, and it certainly sounds like Gregory received quite the resilient bean back in the day. Of course he wants to come home, and of course you want him to, but I think the best you can do for him is spend as much time with him in hospital as possible so he doesn't get too lonely or bored, but also make sure you are not burning yourself out in the process.

I would think the shaking could just be from how weak he has become? Or perhaps it is a reaction to prednisone - I certainly think it can make you anxious and jittery, and sometimes people just have mysterious reactions to substances.

I am hoping for a swift and total recovery for Gregory. Hang in there, Nat. :grouphug;

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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