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Author Topic: I'm here to give everyone hope!  (Read 1180 times)
podpeople
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« on: February 20, 2019, 07:51:23 AM »

Hello:
I have not been on here very much. My husband got kidney failure in October 2017 due to a urinary blockage from the prostate. This was a gradual thing and because he wasn't seeing a doctor he never knew he was blocked until it was too late . He ended up in the ER with GFR of 3 . He went on Dialysis until June 2018 when he started Periotoneal. He started out doing   3 bags of 2500 per day. In November( i think), his KT/V was around 5 . The doctor said he could do just 2 bags of 2000 per day. This month's KT/V came out to 3.92.
Today the Nephrologist told him that his clearance( don't know if it's the same as GFR) is 20 so she is taking him off Dialysis to see how he does. HOORAY!!  :cheer:
He will have blood work every 2 weeks to monitor him. This is great news. I just wanted everyone to know this and to know there is HOPE.
Good luck to everyone going through this.
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kickingandscreaming
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« Reply #1 on: February 20, 2019, 07:59:02 AM »

That's wonderful for your husband and you, but it probably shows that he had AKI (acute kidney injury) and not chronic ESRD.  One of the two can revert to "normal" and the other can't.


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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
podpeople
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« Reply #2 on: February 20, 2019, 09:40:28 AM »

Thanks. It might be that he had acute kidney injury but in September 2016 he was diagnosed with stage 4 kidney failure and we thought it was because of his high blood pressure. I don't know if this would be considered acute but I just wanted others who are going through this to get some hope. Not to mention that at the hospital the nephrologist told him he was going to be on dialysis for the rest of his life.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: February 20, 2019, 10:34:56 AM »

Thanx Podpeople congrats with your husbands recovery!!


    :cheer:   Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
UkrainianTracksuit
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« Reply #4 on: February 20, 2019, 11:03:23 AM »

Wonderful news and I hope all the goodness continues for your husband!  :yahoo;

However, it is possible to have acute renal failure while in later stages (I experienced it at stage 4) and function to climb back up to a point where dialysis isn't needed "right now." After an infection, my function dropped from 20% all the way to single digits. I went on HD for a short time and my function recovered between 17 to 20 %. It wasn't ideal but it delayed reliance on HD for awhile. It was a wait-and-see process to see if the kidneys recovered.

It helps also that your husband was on PD, as you retain residual function a little longer. That must have helped his kidneys to bump up to where they are now.

Anyway, best of luck! Waiting for the results to "get off" dialysis can be nerve-wracking but when they come in and you're good (for awhile), it's a great feeling!
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LorinnPKD
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« Reply #5 on: February 20, 2019, 01:58:08 PM »

So happy to hear about your husband!

I hope you can take some time to travel & enjoy lots of things that were difficult while he was on hemo and pd.
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Rerun
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Going through life tied to a chair!

« Reply #6 on: February 20, 2019, 03:35:10 PM »

God bless him!   :welcomesign;
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Shaks24
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« Reply #7 on: February 21, 2019, 05:26:35 AM »

Wow! Great news. Even clearance numbers of 5 or 3.92 are excellent numbers. Most clinics have a goal of 1.7 - 2. I know at my clinic the goal is 2 for PD patients.
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Congestive heart failure 2011
Currently about 19% Kidney Function
September 11, 2013 PD Catheter and Fistula Surgery
September 27, 2013 Started PD
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #8 on: February 21, 2019, 06:19:57 AM »

Great News.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
podpeople
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« Reply #9 on: February 24, 2019, 03:30:51 PM »

Thanks everyone! He's on a more restrictive diet now since he's not on Dialysis. Doctor said to eat less animal protein and be careful with potassium foods. I will keep everyone posted on his blood work.
God bless everyone. I know how tough this is.
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Charlie B53
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« Reply #10 on: February 25, 2019, 05:09:36 AM »


A Renal Diet reducing the work load on his kidneys will hopefully continue to save his function a long time.

His is so very fortunate to have this second chance to stay off of Dialysis longer.

Take advantage of it.  If you haven't already, Google Renal Diet and check both the Fresenius and DaVita websites as both have whole sections on diets with many cookbooks of recipes of renal friendly foods.
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podpeople
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« Reply #11 on: August 02, 2019, 11:09:14 AM »

Thank you everyone. Just wanted to give a quick update. My husband is still off dialysis. He is stable and his doctor said they can do blood work every 2 months instead of every month.
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Alexysis
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« Reply #12 on: August 02, 2019, 03:51:08 PM »

I'm glad your husband got off dialysis, but your story in no way can give "everybody" hope. In fact, I'd bet that it won't give even 10% of us any hope.
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podpeople
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« Reply #13 on: August 02, 2019, 04:33:38 PM »

Well I'm sorry you feel that way but at the hospital the nephrologist told us he would be on dialysis the rest of his life 3 x a week , so there goes that theory. Also what is wrong with giving people hope. If only those "10% " get hope , I'm happy.
« Last Edit: August 02, 2019, 06:20:12 PM by podpeople » Logged
lulu836
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« Reply #14 on: August 02, 2019, 09:12:05 PM »

 
I'm glad your husband got off dialysis, but your story in no way can give "everybody" hope. In fact, I'd bet that it won't give even 10% of us any hope.

:thumbup;


« Last Edit: August 02, 2019, 09:15:14 PM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
Jean
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« Reply #15 on: August 04, 2019, 01:34:55 AM »


My dear, with diseases of any kind, this sort of thing can happen. And, it is marvelous. Keep your hopes up and who knows, " the good things" can happen to him and you. My dear husband was diagnosed with lung cancer, with a massive, chest tumor, in operable. The Dr. admitted him to the hospital so he could pass there and lo and behold, his tumor was completely gone. With no medications and no help, in less that six weeks. So dont let people get you down, stay happy and enjoy each other.
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One day at a time, thats all I can do.
PrimeTimer
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« Reply #16 on: August 04, 2019, 11:15:09 PM »


My dear, with diseases of any kind, this sort of thing can happen. And, it is marvelous. Keep your hopes up and who knows, " the good things" can happen to him and you. My dear husband was diagnosed with lung cancer, with a massive, chest tumor, in operable. The Dr. admitted him to the hospital so he could pass there and lo and behold, his tumor was completely gone. With no medications and no help, in less that six weeks. So dont let people get you down, stay happy and enjoy each other.

I personally know someone that went thru something very similar. Miracles do happen. Good things do happen. Yes!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #17 on: August 06, 2019, 10:05:38 AM »

If he hasn't already, I and others on this site would advise your husband to adopt a vegetarian diet.  Animal proteins are rough on the kidneys, so to avoid a relapse he should get used to tofu and textured vegetable protein, both of which are tasty enough to satisfy all but the pickiest eaters.  A consultation with a renal dietitian could help.  He should also have the prostrate taken care of.  TURP is a painless procedure that will relieve the pressure on the bladder and the kidneys.  I would also advise him to consider taking curcumin and grape seed extract.  As I recently noted on another post, there have been several studies that indicate the benefits of taking these supplements. 

https://onlinelibrary.wiley.com/doi/full/10.1111/bcpt.12817

https://www.ncbi.nlm.nih.gov/pubmed/25474287

https://www.ncbi.nlm.nih.gov/pubmed/27822171

https://pdfs.semanticscholar.org/f376/3d1b97d5ace4820839039418014824640088.pdf

Finally, my experience with kidney disease has been almost identical to your husband's, although I was never on dialysis.  Like him, I was diagnosed with CKD as a result of high blood pressure and an enlarged prostrate.  When my GFR dropped to 16, I was told to prepare for dialysis.  Then, inexplicably, the GFR began to rise.  It is now at 32, and the disease seems to be in remission if not complete reversal.  My guess is that the kidneys suffered a prolonged injury that was neither chronic nor acute.  In this intermediate state, which had a duration of two years, the nephrons were damaged, I believe, but thankfully not destroyed.  My nephrologist and others will insist that it must be either/or, but I know that isn't true.  Sometimes I think that I read more papers on PubMed than any of my doctors.
« Last Edit: August 07, 2019, 10:54:41 AM by enginist » Logged
Alexysis
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« Reply #18 on: August 11, 2019, 09:01:34 AM »

If he hasn't already, I and others on this site would advise your husband to adopt a vegetarian diet.  Animal proteins are rough on the kidneys, so to avoid a relapse he should get used to tofu and textured vegetable protein, both of which are tasty enough to satisfy all but the pickiest eaters.  A consultation with a renal dietitian could help.  He should also have the prostrate taken care of.  TURP is a painless procedure that will relieve the pressure on the bladder and the kidneys.  I would also advise him to consider taking curcumin and grape seed extract.  As I recently noted on another post, there have been several studies that indicate the benefits of taking these supplements. 

https://onlinelibrary.wiley.com/doi/full/10.1111/bcpt.12817

https://www.ncbi.nlm.nih.gov/pubmed/25474287

https://www.ncbi.nlm.nih.gov/pubmed/27822171

https://pdfs.semanticscholar.org/f376/3d1b97d5ace4820839039418014824640088.pdf

Finally, my experience with kidney disease has been almost identical to your husband's, although I was never on dialysis.  Like him, I was diagnosed with CKD as a result of high blood pressure and an enlarged prostrate.  When my GFR dropped to 16, I was told to prepare for dialysis.  Then, inexplicably, the GFR began to rise.  It is now at 32, and the disease seems to be in remission if not complete reversal.  My guess is that the kidneys suffered a prolonged injury that was neither chronic nor acute.  In this intermediate state, which had a duration of two years, the nephrons were damaged, I believe, but thankfully not destroyed.  My nephrologist and others will insist that it must be either/or, but I know that isn't true.  Sometimes I think that I read more papers on PubMed than any of my doctors.

Keep in mind that blood test GFR's are notoriously inaccurate. If part of your dietary changes included drinking a lot more fluids, then that 16 points increase could be solely from 'gaming' the blood test. I know, because I did this for nearly a year. In the end, only a 24 hour urine collection test can give you an accurate GFR number.
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enginist
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« Reply #19 on: August 12, 2019, 12:01:23 AM »

Alexysis, I know that GFR results can be inaccurate, which is why it's called eGFR.  When I was first diagnosed, I did increase my water intake to three liters per day, and I have maintained that level ever since.  Meanwhile, my GFR, while only an estimate, has shown a consistent upward trend. 

The effect of water on kidney function has been controversial, except in the case of dehydration, which can and does induce kidney failure.  Some studies indicate that increased levels of hydration don't affect GFR one way or the other.  A large recent study, however, found a positive correlation between higher levels of water consumption and a slower rate of renal decline. 

In my case, I don't think hydration levels have been the determinate factor in the kidneys' apparent recovery.  I attribute the higher GFR to a vegetarian diet and the effects of linisiprol, a blood pressure medication with renoprotective properties.  Lisiniprol, an ACE-inhibitor, lowered my BP to 115/75.

However, all is not roses with me.  Due to an indwelling catheter, I remain susceptible to any opportunistic infection that may come my way.  I could continue riding a wave of hope and optimism only to be taken out by some drug-resistant pathogen.  So far I have been pretty lucky, but this is a battle that the bugs eventually will win.




« Last Edit: August 16, 2019, 06:42:12 AM by enginist » Logged
Michael Murphy
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« Reply #20 on: August 12, 2019, 05:45:00 AM »

Two years ago after 2 angioplasties my urine output fell to near 0.  Itís been that way for the until last month when all of a sudden I was producing mote urine.  Itís not at pre angioplasty levels but itís slowly increasing.  I have no idea if it will continue but itís definitely weird   Pre angioplasties I was not fluid restricted and my labs were generally ok. So the last 2 years have been tough.
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enginist
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« Reply #21 on: August 16, 2019, 07:14:53 PM »

Tell me, UT, what kind of infection did you have, and how did you acquire it?    And how much English did you study in the Russian Respublika?
« Last Edit: August 16, 2019, 08:46:32 PM by enginist » Logged
kitkatz
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« Reply #22 on: Today at 12:43:04 PM »

I wish you luck in everything related to kidney disease and dialysis.  It's a rough road out there.
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