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| | |-+  Finally getting to see a renal dietitian!
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Author Topic: Finally getting to see a renal dietitian!  (Read 20564 times)
KarenInWA
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« Reply #50 on: June 08, 2015, 04:00:50 PM »

Hey MooseMom!

Yes, my kidney function is static. I had a hospital stay due to chronic UTI back in Feb, where it got as high as 3.5 or so. I had a f/u appt with the transplant neph about 3 weeks later and it was 3.0! Yay!!! Since then, it has stayed in my baseline range of 3.0 - 3.3, except for a week or 2 ago, where I did the blood draw at night instead of the morning. I had a couple of fabulous shredded beef tacos for dinner, and my creat shot up to 3.5! Had another test over a week later, and it was down to 3.1 Reason for those tests was my tacrolimus levels were jumping around, and on that particular test, they were higher than my target range.

My neph of 15 years retires in 2 days, and then I will be under the care of a new neph office in the same town. This should be interesting. My neph told me at my last appt that my chart fills about 3 folders or so. Yikes!

Still just doing my thang, so to speak. My main focus is paying down my 2nd mortgage - I just want it gone. Then I may focus on building up my savings. I'd like to get a bigger place, but we'll see how things play out first. It would be nice to have a place big enough to house potential home dialysis supplies and a roommate if need be. My current home is waaaay too small for this!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Athena
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« Reply #51 on: June 08, 2015, 08:19:45 PM »

Karen, it's great to hear that you're still working in spite of the all the medical issues and dramas you've had. It's true that eating cooked meat on the eve of a morning blood test will raise creatinine levels - but only in a transient way. (When I was in hospital of a renal ward, they served me 2 meals a day with meat each day!).

Due to different measurements between countries, what is your eGFR when in your baseline range?

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KarenInWA
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« Reply #52 on: June 09, 2015, 05:26:12 AM »

Athena, my eGFR is anywhere from 15-17. My story is sad. I received a live donor kidney from a non-blood related family member back in April 2011. It's an older kidney, but very healthy. However, it was slow to lower creatinine. It did get as low as 1.4, then creeped up to 1.7, so the dr ordered a biopsy to rule out possible rejection. That was at just over 3 months. Turned out to be the biggest medical mistake I ever consented to! The biopsy went fine, and i though all was well. No rejection and no tacrolimus toxicity. Then, just a few days afterwards, I woke up with no urge to pee. Went to the ER after calling the tx neph on duty, and ended up having an emergency surgery to remove an obstructing hematoma brought on by a fistula from the biopsy. I lost over 600ml of blood, had to have 2 units of blood and 1 dialysis session. Hospital stay was 5 days, creatinine got as high as 9.9. Basically, I had acute kidney failure. Creatinine slowly got better, til it stayed stable in the 3's, which means I am basically late stage 4 CKD as far as kidney function is concerned. All my other #'s are good. I am back on the kidney list as of July 31, 2013, but am inactive for the time being because my function is stable and I am feeling fine.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Athena
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« Reply #53 on: June 09, 2015, 06:06:50 AM »

Karen, that sure is a sad story. So you still have your transplanted kidney in place, but with reduced functioning as a result of your trauma with the biopsy?

It's terrible having any sort of acute kidney injury when we have any sort of kidney issues to start with. I've had some recent personal experience with this (mine was from taking high doses of a hormone drug to treat another unrelated problem). It's terrible when we see Nephrologists just helplessly looking on when creatinine levels start heading north.
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KarenInWA
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« Reply #54 on: June 09, 2015, 09:39:19 AM »

Athena, yes, still have the transplanted kidney, plus my 2 useless shriveled raisins that are good-for-nothing lol!
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Deanne
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« Reply #55 on: June 14, 2015, 08:02:22 PM »

That's uncalled for and out of line. It's important for people to educate themselves before they start dialysis. It isn't for anyone here to judge them for their fears, frustrations, or anything they do to maintain their health and kidney function. It isn't unheard of for a pre-dialysis patient to find a new piece of information that we can all learn from, or provide a new prospective.

No one here has the right to judge anyone else, or make a snide comment like yours that might make someone feel uncomfortable in participating on this board. Those decisions belong to the moderators. We're here to support each other and what you said is exactly the opposite.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Athena
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« Reply #56 on: June 15, 2015, 05:47:47 AM »

Tbh I think this Athena woman is just looking for attention with all her ridiculous posts. Shes not even close to needing dialysis sure

I'm sorry that you find my posts ridiculous. You are most welcome to not read them in future. As for not being close to dialysis, I don't know what that means quite frankly. I usually only post in the Pre-Dialysis section, which is for all those who have not yet reached dialysis stage, whether it be far or near or somewhere in between.
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kitkatz
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« Reply #57 on: June 17, 2015, 12:03:40 PM »

Please be nice to one another when posting on this thread.  Everyone has an opinion and we can all express it nicely.
 
kitkatz-Admin
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
talker
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« Reply #58 on: June 17, 2015, 12:44:43 PM »

Please be nice to one another when posting on this thread.  Everyone has an opinion and we can all express it nicely.
 
kitkatz-Admin
Ha, kitkatz you are right on with "Everyone has an opinion and we can all express it nicely".     :bow;  or they deserve a   :Kit n Stik;
 
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
Athena
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« Reply #59 on: June 18, 2015, 04:09:22 AM »

Thank you Deanne, Kitkatz and Talker for your support. We are all at different stages with this disease but we all share one common view & that is, we don't like dialysis. I have learned a lot on this site through listening to others and receiving so much wonderful advice. Thank you.







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