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Author Topic: My Blood work  (Read 14817 times)
Riverwhispering
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« Reply #25 on: March 31, 2012, 06:10:16 PM »

The murder trial ended yesterday with a guilty verdict.  I'm hoping that I get the court date soon now.  I'm trying so hard to not be in a major depression.  All this stress plus my Vitamin D is really low (18)
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justme15
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« Reply #26 on: March 31, 2012, 09:14:45 PM »

Hi Justme are thing thinking of having a baby? What's your function at the moment? I had my son (now 4) when function was around 32% and went full term with him, without much damage to the kidney, went down to about 28%. I had him at full term, he was only 5lbs12 cos had stopped growing in the last month (common in kidney oatients due to risk of pre-sclampsia.) I got pre-eclampsia after delivery, bp went up to 200/150 was a bit scary but i only had it mildly. He's now a healthy boy average sweight and quite tall. However when i conceived my daughter i got the flu and that knocked me down to 23%, it was 17% when i had her in july and then dropped to 10% a mth after her delivery (she was 5wks early). Its now at 8.8% but am not on dialysis at mo im due to have a transplant from my dad in 8 wks so hoping i can last that long. Had i not had elena im pretty sure my kidney wouldve lasted at least 5 more yrs. Ive never had more than about 40% function and have had 2 kids and 30 yrs on when docs said i would die. You must talk to docs b4 getting preg as they'll alter some meds and talk about the risks, everyone is different no one knows how well the kidney will cope till u do it! Can take longer to get pregnant with kidney issues too, even if u have regular periods (as i did!) Took 6mths with Drew, 16mths with Lainie! You'll be referred to an obstetrician who will do growth scans  and you'll have more ante natal checks and blood test to check function. I was 25 when i had Drew and 29 when I had Lainie. Am glad i had them b4 transplant really as i dont wanna put pressure on new kidney. Anything u wanna ask that i left out feel free to ask! But i think if u have some kidney disease u should expect gfr to drop with pregnancy even if only a bit like my 1st pregnancy. Hth x
lainiepop,
well yes and no. I'd love to get pregnant, but I am having infertility issues.  they are probably partly related to my kidney problems and other issues I have as well.  My GFR is approx 11%, so if I were to get pregnant that would probably tip me over the edge and definitely put me on dialysis.  I was also worried about the baby being premature.   It sounds like your baby girl is fine, which is wonderful!!
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lainiepop
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« Reply #27 on: April 01, 2012, 01:24:16 AM »


[/quote]
lainiepop,
well yes and no. I'd love to get pregnant, but I am having infertility issues.  they are probably partly related to my kidney problems and other issues I have as well.  My GFR is approx 11%, so if I were to get pregnant that would probably tip me over the edge and definitely put me on dialysis.  I was also worried about the baby being premature.   It sounds like your baby girl is fine, which is wonderful!!
[/quote]

Justme Elena was 5 weeks premature , they did a c-section to get her out to take pressure off my kidney, but it still crashed afterwards. She weighed only 3lbs 12 and now at 9mths today weighs just under 14lbs but is developing like a normal 9mth old she is desperate to walk. Think she'll always be naturally tiny like me anyway. I know sometimes they advise to leave pregnancy til after a transplant it depends on the situation. Ive had a lot of docs ask me my plans for more after the transplant but i don't want anymore, i know it would probably be a more straight forward pregnancy after the transplant than ive previously had but im happy with 2. They said to me i might have needed dialysis to sustain Elena futher but i think they thought 35 weeks were far enough and she'd stopped growing anyway, one of the issues with renal failure. Id have a chat with your neph if your seriously considering it they can tell u the pros and cons for u and baby, from what id researched cons for me would have been dialysis and more dialysis, cons for baby was being born prematurely and i think there's a higher rate of miscarriage. Take care x
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
natnnnat
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« Reply #28 on: April 01, 2012, 08:30:27 PM »

Gregory alas, is also in the boat.  His bum is very narrow these days, but he's tall, so the boat may be getting a bit heavy on his side...  Careful everyone!

At last measure, his creatnine was 408 (4.5 in US measures).  His ankles are starting to swell. Apart from that he says he feels "great", for he is happy to forget headaches as soon as they are gone.  His blood pressure is sometimes up, sometimes fine.  It gets to him, I watch him fret over his ankles.  He got something he calls "Lasix" the other day, but sadly concluded they aren't helping, so now he is wondering if the ankles swelling are due to the higher prednisalone (side affect of steroids include swelling ankles) or due to having his thyroid out (again, side effects can include swollen ankles). 

As usual the comments you've made, Moosey, were close to what Gregory needed to hear, so I sat him down and made him read your post:
This boat is getting sorta crowded, but I know there's enough room for my skinny, practically non-existent butt...

GFR 14, which makes it official...CKD5.  And, for the first time, my hemoglobin has slipped below 11 (10.7).  Good news is that my K was actually normal which it hasn't been in a very long time, and just as importantly, my bp is "perfect".
....
I've been doing this for 7 years, and I'm not going to do it anymore.  I can be my own worst enemy, and I need to make that stop.  I need to be kinder to myself, and I hope you all will do the same.   :cuddle;
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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.
natnnnat
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« Reply #29 on: April 01, 2012, 08:45:07 PM »

I meant to add:  eGFR = 16
haemoglobin 94 g/L
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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.
MooseMom
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« Reply #30 on: April 02, 2012, 10:10:42 PM »

I'm so sorry to hear that Gregory is still a candidate for this stupid-ass boat.  I was hoping that he was improving.  This waiting for your kidneys to fail...it is a particular kind of hell, and I have all of the sympathy in the world for all of those who find themselves climbing aboard.  What are his docs saying?  I know that in Australia, you have to be on dialysis before you can get on the tx list, but does that also apply to people who have a transplant that is failing?  Will Gregory have to go back on D before he can get on the list?
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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."
natnnnat
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« Reply #31 on: April 02, 2012, 11:17:01 PM »

What are his docs saying?  I know that in Australia, you have to be on dialysis before you can get on the tx list, but does that also apply to people who have a transplant that is failing?  Will Gregory have to go back on D before he can get on the list?
They aren't saying much because Gregory doesn't want to ask any questions.  He says he has a long way to go yet.   He says, "don't give up on it yet", a tactic which kind of, stops all other conversation.    Yeah, I hear ya maam, I'd better go find the answers myself.  I kind of wish he would do that stuff... otherwise its easy to get the blame for stuff.  You know, like when I say, "don't eat that salty thing" and then I regret it because I've become the salt police. 
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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.
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #32 on: April 04, 2012, 12:19:53 PM »

Man, laniepop, that makes me think I should have just gotten pregnant as soon as my ckd was discovered!. Jk-- everyone is different, and I have other issues, too, but good for you with your sweet little ones, and i hope that your gfr goes back up or at least stays steady til you get your new kidney!.  I have heard that the medications post-transplant are bad for babies, so I thought post-transplant it would be a dangerous pregnancy, it's hard to decide what is best, it seems scary either way. I wouldn't be ok either way, but I did have fierce crazy thoughts of just giving it a try jn the early days.

my vit d is 94, I think, just finished a 12-week round of supplements.  When I first had it get low, it was 11, and the clinic rep who called said it was a "little low" lol, and when I weekend it had anything to do with mg kidney, he said that my doctor didn't think so.  Ok. 

my gfr is 15, cr 3.6.

I don't have swelling yet, sometimes feel really wiped out, easily dehydrated and salt is terrible.  I went out to eat this weekend at a barbeque place and should have just sat it out, but decided portion control was enough....appetite good.

I was getting heart palpitations and achiness, but the doc put me on sodium bicarb 650mg, 3x a day.. Anybody else have a bout with metabolic acidosis?


are any of you on phosphate binders?. I keep hearing about them but my doc says my phosphorus is ok.

getting my a/v fistula on Friday the 13th (of April).  I picked the date, and I  like it, but my birthday party is the next day, so hopefully I'm not feeling too sick cause I'm allergic to a bunch of painkillers and usually just tough it out.
« Last Edit: April 04, 2012, 10:29:58 PM by MomoMcSleepy » Logged

35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
Riverwhispering
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« Reply #33 on: April 04, 2012, 06:09:37 PM »

McSleepy One lesson I learned when I was on the Hydrocodone for pain it that it binds you up really bad.  Just a suggestion is if you get that for pain see what your Neph suggests you take to counteract that issue. 
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MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #34 on: April 04, 2012, 10:18:18 PM »

riverwhispering, me too on the Vicodin/Norco/Hydrocodone.. It's on my "allergy" list because it just wasn't worth  it.  I never found it worked well, and the constipation combined with abdominal surgery was tough to take.
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
rosebudd85
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« Reply #35 on: May 23, 2012, 12:42:19 PM »

Hi I'm new to the group and just had my blood work done yesterday my GFR is 14 and Creatinine is 3.7 I started about a month ago with my legs  and ankles swelling and once in awhile I get sick to my stomach  and I also wake up 6 x a night to Pee other then that I feel good  LOL!  My question is what are the numbers when you start dialysis?
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Southpaw
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« Reply #36 on: May 23, 2012, 09:28:54 PM »

My GFR is 14 and my creatinine is 4.5.  swelling in my ankles but no nausea. I still have my appetite. The Dr. that put in my fistula said I could stay at grf 14 for awhile.  I think my grf would have to go below 11 before my neph puts me on dialysis.  I think if you have nausea frequently then you are close.
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lainiepop
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« Reply #37 on: May 24, 2012, 04:18:41 AM »

It depends on individuals, my creatinine has been between 450 and 560 gfr 8 or 10 for the last nine mths. I have no fistula, am still eating, have no nausea or swelling, feel fine & my potassium & hb are all normal. as I have a live donor match ready they haven't seen the point, they said as long as I feel well & potassium Stays low they wouldn't start me on it. I'm in the UK guess different places & doctors might have different ideas tho .
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
noahvale
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« Reply #38 on: May 24, 2012, 08:57:16 AM »

^
« Last Edit: September 17, 2015, 02:14:02 AM by noahvale » Logged
Riverwhispering
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« Reply #39 on: May 24, 2012, 01:05:13 PM »

Just a update about me me me LOL

My non husband did a out of court settlement and the judge signed off our marriage as Invalid since he's a bigamist. As of May 4th I'm free of him and all that stress he's put me thru.   I can't believe how good I feel emotionally now, the stress is gone that he had me under.

The other thing is my GFR has gone down to 9.5 but I'm still feeling pretty good most of the time.  At least I'm not stressing over other stuff now like I was.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #40 on: May 24, 2012, 01:49:58 PM »

I'm glad for you that that extra bit of stress has gone now too. Maybe the de-stressing will push your Gfr above 10 again for a while.

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
MooseMom
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« Reply #41 on: May 24, 2012, 07:22:12 PM »

RW, thank goodness that particular nightmare is over.  I'm thrilled to bits for you!  FINALLY!!! :clap;
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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."
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #42 on: May 25, 2012, 11:39:45 AM »

Just a update about me me me LOL

My non husband did a out of court settlement and the judge signed off our marriage as Invalid since he's a bigamist. As of May 4th I'm free of him and all that stress he's put me thru.   I can't believe how good I feel emotionally now, the stress is gone that he had me under.

The other thing is my GFR has gone down to 9.5 but I'm still feeling pretty good most of the time.  At least I'm not stressing over other stuff now like I was.

 :2thumbsup; :yahoo; :bandance; :bandance; :cheer: :flower;

and  :sir ken; to the bigamist
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
natnnnat
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« Reply #43 on: July 09, 2012, 03:19:25 AM »

Update on Gregory:

                15 June      4 July
creatnine    540            550
eGFR           10              10

modified to finish writing post.  Hit 'submit' somehow while touchtyping.  Blasted!
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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.
MooseMom
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« Reply #44 on: July 09, 2012, 10:51:16 AM »

Hmmm....despite his numbers, how is Gregory feeling overall?
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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."
natnnnat
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« Reply #45 on: July 09, 2012, 07:10:35 PM »

Today he looks and feels great.  Yesterday too.  For a few days before, he looked like something the cat dragged in.  He had these shocking red eyes, a big jowly face and fat ankles.  Now, slim ankles, and smaller face.  So he comes and goes.  Lucy has kicked in again and the sun has come out.
As they say, its a roller coaster.  A musical journey.
But he doesn't compare to some of the stories here.  I think if he was nauseous too often, or passing out, he'd go to dialysis.  It hasn't got to that point yet.

(Oh Moosey!!! I'm still so excited about your new bean!  Have you named it yet?  I haven't checked the other thread, I should go there and see instead of working.  STupid work!)
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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.
mamagemini
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It's all me.

« Reply #46 on: July 13, 2012, 08:14:26 PM »

Scoot over.....lol
last month GFR 15 Creat 3.2 (if I remember correctly....) Yet I only feel nauseaus every day now (Zofran is my besti) and Lasix again for the coughing at night (thinks my lungs are compromised). I forget it sometimes cause of the afternoon time frame...thats the other thing my brain is foggy all the time....lol.
Took labs this past Monday will know more on Monday. Gotta take more next week for the Cardio transplant listing.
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FSGS/Nephrotic syndrome 2005
AV Fistula placed right arm inside elbow 4/2012
Started HD 9/7/2012
Started PD Oct 2015
Parathyroid removed 6/2019
Cellulitis in Fistula 8/2019
RT arm Fistula removed 9/2019
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