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Snickole
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« on: November 12, 2016, 12:47:20 PM »

Hello
My name is Stevie. I am a surgical tech in South Georgia and 25 years old. I have 2 daughters who are 7 years old and 11 months old. I guess you could consider me me the "caretaker" of someone with chronic kidney disease. My fiancÚ and I have been together for almost 9 years. His name I Tim. He has had gout like symptoms for the past 3 years but you know how men are.. Stubborn when it comes to going to the doctor. He had also had foamy urine but we never really questioned it. Last month he had a very bad case of gout and decided to go to the doctor. He walked out learning he had stage 4 ckd. A couple of days later he had an ultrasound done that did not show any evidence of any masses. He had a kidney biopsy 2 weeks ago, and we will find out the results when we go back to his specialist next Thursday. He does not have diabetes and does not have high blood pressure. We have drastically changed our diet since we have found out.  My job is surgery.. All day everyday. We do PD caths and AV fistulas on a daily basis it seems. While I feel I am pretty educated on the actual surgical procedure, I haven't a clue on anything else. Tim isn't currently on dialysis. And while I pray every day  that the doctors got something mixed up or his kidneys will magically improve, I have joined this site to learn everything that I can about this disease and things that come with it. I think I have read everything I can on the internet but it's all so general and basically the same information. The best information probably comes from the people actually experiencing it.
Cheers
From GA 
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Snickole
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« Reply #1 on: November 12, 2016, 12:52:02 PM »

I forgot to add that Tim is 28
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kickingandscreaming
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« Reply #2 on: November 12, 2016, 03:49:27 PM »

Welcome to IHD, Stevie.  Sorry your fiancee has to join this sub-culture.  The diagnosis of CKD/ESRD is a shock to most people as it is a "silent" disease.  Changing your diet (reduced protein intake) can slow down the progression, but it is unrelentingly on its way--at some point (unless the diagnosis was wrong).  I was diagnosed at stage 3 in 2009 and it took until late 2015 for my kidneys to crash the rest of the way when I was at 6%.  Hopefully, his "progress" will be slow.  Good luck and welcome.
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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
Rerun
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« Reply #3 on: November 12, 2016, 05:21:46 PM »

Hello Stevie, and welcome to IHD.  Now that Tim has been diagnosed, you can take a breath.  See what the biopsy says and keep reading this site and ask questions.  He is young and a transplant would be worth investigating.  There are 5 stages and then dialysis.  You have a little time; we hope and pray.

Welcome - Rerun, Admin.

 :welcomesign;
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Charlie B53
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« Reply #4 on: November 12, 2016, 08:40:32 PM »


Hi Stevie,

We named our Daughter Steva in Dec 24, 69.  Good name.   She's the responsible child, unlike her Brother Justin. 

It is appearant you are the responsible one, looking for information to ease the transition into treatment for him.    You were correct, the dark smelly foamy urine is a dead give-away of a serious kidney problem.  Biopsy is very revealing to the type and current condition of the affliction.  Unfortunately there is little to no regaining function.  It is a one-way street to total failure.   Dialysis is a life-continuing treatment.  But it NOT a death sentence.   It is just an altered living arraingement.  One that becomes just another part of your daily routine.

Hemo dialysis in my opinion should be avoided if possible.  My needle-phobia may bias my opinion greatly.  However I suspect the alternating days treatment removing the toxins and the two or three day water accumulation within the treatment time can be far greater shock to the system, often causing untward side effects, debilitating the patient needlessly.

PD, which I am doing for a bit over 3 1/2 years already, is daily, or nightly treatment.  There is no shock to the system.  I have no untward side-effects.  PD does take a lot of care in setting up.  Strict protocol to prevent contamination of the connections which would cause a very nasty pertoneal infection.  I know.  I have made this error once, and am still dealing with it.  If this bug returns again I will lose my cath and be forced to go on Hemo until I heal, have another cath placed, and heal again, before I can return to PD.  So caution is critical.

Read, study, ask questions.  Do not be afraid to ask anything.  We all wish you both the best and will share everything we know to help you along the way.

Take Care,

Charlie B
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cassandra
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« Reply #5 on: November 13, 2016, 06:46:45 AM »

Welcome to the site Stevie

    :welcomesign;


Take care, 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
MooseMom
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« Reply #6 on: November 13, 2016, 02:26:37 PM »

If I had to guess, I'd say it was some sort of glomerular nephritis like fsgs.  I have that, and I had gout and foamy urine, etc.  I hope you will tell us the results of his biopsy on Thursday.

If he does have something like fsgs, I would hope that his medical team will treat the gout.  I took allopurinol for years, and in all that time, I never had a gout attack again.  Gout is dreadfully painful.

I reached CKD4 before receiving treatment; there are ways CKD can be slowed down, but for how long is anyone's guess.  I was able to fend it off for another 8 years with the use of cyclosporine.  Some nephs use steroids. 

Please let us know what happens next.  Good luck to you and to your family.

Welcome to IHD.  Tim is welcome, too!!
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"Empathy is the soul of democracy."  Jeremy Rifkin
nightwalker
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« Reply #7 on: November 13, 2016, 08:13:00 PM »

Welcome to the site and I'm sorry you are dealing with all of this-  I too am a new member to IHD dealing with Stage 5 ESRD and will be receiving my Graft access in the coming week.  Gout is typically a good indicator that something is going on with the kidney (s) .  I am 40 years old and have been battling Gout for 20 years which requires me to ingest daily doses of Uloric to combat the flare ups ( the meds just really allow me to cheat and eat and drink what I want without flare ups) . If it's really bad,  I have to take Colchicine if the uric acid crystals already infiltrated my blood stream and exploded my big toe or ankle. I wish you both the best of luck on this new journey!
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1998 --Diagnosed with only 1 solitary kidney and Hydronephrosis- Pyeoplasty surgery to correct issue
2015--Scar tissue obstruction/  Hydronephrosis back- 3 surgeries no luck ( stent placement, nephrostomy tube placement, ureter reimplant)
2016 -- AV Graft access created for HD. Waiting to start HD and on TX list
Charlie B53
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« Reply #8 on: November 14, 2016, 06:02:29 AM »


My worst gout attack the Dr's prescribed massive doses of prednisone.  I was very skeptical.  But it WORKED, greatly easing the pain.  Of course Dr reduced the med to a small maintenance level which caused me to gain 40 pounds in the next year.  I have finally stopped taking it. 

Alloperinol is NOT recommended for renal patients.  Or so I am told.  Instead Dr prescribed Something spelt sort of like fexobine (Sp) My memory fades, but it is close to that.  3 times a week and my uric acid is much much better.

My blood calcium used to be sky high.  Up to 11.7  I had to wonder if that wasn't the crystals forming in the joints.  Dr wouldn't stab me to draw a joint sample so we may never know.  Sensipar 60 mg daily, my calcium is finally under 9.5

Gouto for me is triggered by animal purines, shellfish, and nitrates, found in most lunch meats, hot dogs, BACON, ham.  I have almost cut all of them out, only small amounts, few and far between.  So far, no episodes.  They ain't no fun.


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iolaire
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« Reply #9 on: November 14, 2016, 06:12:52 AM »

Welcome, I'm glad you found the site.  Its great for both care givers and the patients.

One great thing about this site is you will see people contributing who have been on dialysis for many years (30+).  It helps to show that for people that find a way to work within the lifestyle they are able to live a long and fruitful life. 
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Transplant July 2017 from out of state deceased donor, waited tree 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.
Simon Dog
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« Reply #10 on: November 14, 2016, 06:48:50 AM »

Allopurinol is NOT recommended for renal patients.  Or so I am told.  Instead Dr prescribed Something spelt sort of like fexobine (Sp) My memory fades, but it is close to that.  3 times a week and my uric acid is much much better.
Feboxostat a/k/a/ Uloric.   Remember, the pharm industry wants everyone on new in-patent drugs with no generic available.   It's a newer, more expensive, and not too long ago heavily advertised alternative to Allopurinol.  My neph (and previous neph, who since retired) kept me on Allopuinol but lowered the dose.     Allopurinol carries risk of Stevens-Johnson syndrome which can really suck.
« Last Edit: November 14, 2016, 06:50:45 AM by Simon Dog » Logged
Snickole
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« Reply #11 on: November 17, 2016, 05:21:45 PM »

Thank you everyone for all of the support. We went to the doctor and moosemom you are correct. Fsgs. I guess secondary?? I'm still learning. The doctor said it may have something to do with when he was born. He was the smaller twin and during the birth there was a lot of blood. They thought it was from his mother so while they were trying to find out where she was bleeding from, they didn't realize his umbilical chord had ripped from his abdomen. His is how it was explained to me anyways. A couple of minutes later they figured it out, but a couple of minutes is forever in a situation like that I guess. I'm sad but in a way relieved that we have some more answers and can move forward from here.
« Last Edit: November 17, 2016, 05:25:35 PM by Snickole » Logged
Simon Dog
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« Reply #12 on: November 17, 2016, 07:48:24 PM »

Quote
Fsgs. I guess secondary?
Two Nephs have told me secondary FSGS does not recur in a transplanted organ.   Primary FSGS often does, sometimes before the patient is even closed up (as determined by law draws of the urine from the new organ).
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