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Author Topic: Deja vu all over again  (Read 1281 times)
SutureSelf
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Hey there!

« on: March 31, 2016, 05:14:25 AM »

My kidney failure a result of bladder reflux not being corrected until I was twelve.  By then, over 50% of my function was destroyed.  At 19 had ureter re-implants with the hope of slowing progression.  Began incenter hemo at the age of 22 in 1978.  Stayed on that modality, by choice, until receiving a cadaver transplant in 1990.  After a rough first 2 months, I had 13.5 great years with the transplant until going into rejection.  Started back on hemo on what would have been the 14th anniversary of my transplant. 

Relisted in 2005, but with type B blood and a 99% PRA, I knew it would be a long wait for another decent cadaver match.  Because of physical challenges related to 25+ years of renal failure and dialysis, I decided to double list to a local transplant program about 2 months ago.  The director of kidney and pancreas transplant medicine is my former nephrologist of 7 years who I greatly respect.  Have a urology consult left in the evaluation process and hope to be approved sometime in May.   

I've been on extended hours incenter hemo for the past six five years and continue to work (self-employed since 1993).  Yet, dealing with neuropathy in both hands, systemic disease-related pruritus (not from high phos level, mine runs between 2.5-4.0) and amyloidosis in my neck have made living a good life quite the challenge.  However, I celebrated my 60th B'day a few months ago with a group of great friends and feel fortunate to still be around.

That's me - SutureSelf


 
« Last Edit: March 31, 2016, 05:21:56 AM by SutureSelf » Logged

I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
SooMK
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« Reply #1 on: March 31, 2016, 05:23:12 AM »

Welcome to IHD SutureSelf. What a great attitude and determination.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
iolaire
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« Reply #2 on: March 31, 2016, 05:26:01 AM »

Welcome, its always helpful to read stories from people who have lived productive lives with kidney failure for years.  Looking back how what do you think of your decisions to be on dialysis for 12 years prior to transplantation? (i.e. would you tell you younger self to do something different?)
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Transplant July 2017 from out of state deceased donor, waited three 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.
SutureSelf
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Hey there!

« Reply #3 on: March 31, 2016, 05:50:25 AM »

Welcome, its always helpful to read stories from people who have lived productive lives with kidney failure for years.  Looking back how what do you think of your decisions to be on dialysis for 12 years prior to transplantation? (i.e. would you tell you younger self to do something different?)

Nope, I wouldn't do anything different.  Times were different than today, especially with the sophistication of transplant meds.  In fact, if not for having constant access issues after year 9, I would have stayed on hemo another 5 years or so.  Hemodialysis was/is predictable and I knew how to take care of myself to do well on the modality. 

Transplantation, on the other hand,  was truly a crap shoot in those days with imuran and prednisone the only immuno/antirejection meds available, keeping cadaver success rates around 50% for 3 years.  Cyclosporine was added to the cocktail in the early 1980's, greatly improving success rates, but I wanted to wait until at least 10 years of  experience with the med and "getting the kinks out" on dosing levels.  That regimen worked well for me for 13+ years.

While the current transplant meds are fairly toxic, success rates are in the 95%+ range for 5 years for both cadaver and living related donors.  And yes, I would encourage twenty-somethings to look at transplantation as a first modality of treatment.  Mainly because the dialysis industrial complex has made it extremely challenging to get good treatment - even if doing it at home.

 
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
iolaire
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« Reply #4 on: March 31, 2016, 05:56:29 AM »

Welcome, its always helpful to read stories from people who have lived productive lives with kidney failure for years.  Looking back how what do you think of your decisions to be on dialysis for 12 years prior to transplantation? (i.e. would you tell you younger self to do something different?)

Nope, I wouldn't do anything different.  Times were different than today, especially with the sophistication of transplant meds.  In fact, if not for having constant access issues after year 9, I would have stayed on hemo another 5 years or so.  Hemodialysis was/is predictable and I knew how to take care of myself to do well on the modality. 

Transplantation, on the other hand,  was truly a crap shoot in those days with imuran and prednisone the only immuno/antirejection meds available, keeping cadaver success rates around 50% for 3 years.  Cyclosporine was added to the cocktail in the early 1980's, greatly improving success rates, but I wanted to wait until at least 10 years of  experience with the med and "getting the kinks out" on dosing levels.  That regimen worked well for me for 13+ years.

While the current transplant meds are fairly toxic, success rates are in the 95%+ range for 5 years for both cadaver and living related donors.  And yes, I would encourage twenty-somethings to look at transplantation as a first modality of treatment.  Mainly because the dialysis industrial complex has made it extremely challenging to get good treatment - even if doing it at home.

Thanks for the background.  I'm always thankful for the level of health care I have today as compared to what was available in the past.  Then I wonder about how people 50 years from now will think of the care we receive today....
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Transplant July 2017 from out of state deceased donor, waited three 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.
Charlie B53
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« Reply #5 on: March 31, 2016, 06:18:20 AM »


Welcome to IHD!

We are always glad to have new members however not so glad that you have the kidney problems that bring you here.

You bring valuable experience and other insights from your treatment that can be very helpful to others just beginning their journey into the Dialysis world.

Visit often, post any questions, or answers, opinions as you feel.  All are welcomed.

Take Care,

Charlie B53
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Simon Dog
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« Reply #6 on: March 31, 2016, 08:06:27 AM »

You might want to ask you neph if adding a Lixelle column to the setup could help your DRA.
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SutureSelf
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Hey there!

« Reply #7 on: March 31, 2016, 09:23:19 AM »

You might want to ask you neph if adding a Lixelle column to the setup could help your DRA.

You can probably count on Mordecai "Three Finger" Brown's pitching hand how many free standing dialysis facilities are using the Lixelle column.  As Medicare's reimbursement rules currently are written, it would have to be covered within the bundled rate, and therefore cost prohibitive.   That said, I go to a clinic associated with a medical university healthcare system and did bring the device to my nephrologist's attention last summer once it was FDA approved for use in the States.  She stated a research project would need to be conducted first on a sample from the day shift (about 100 patients to choose from).  That's the last I heard.  The nephrologist who rounds in her place told me that if they did use the Lixelle, those patients would not get high flux dialyzers since the device would compensate for the better clearances. 
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
cassandra
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When all else fails run in circles, shout loudly

« Reply #8 on: March 31, 2016, 10:00:23 AM »

Welcome to the site Sutureself

     :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
PrimeTimer
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« Reply #9 on: March 31, 2016, 11:30:59 AM »

 :welcomesign;  Welcome, Sutureself!  ;)
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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.
Jean
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« Reply #10 on: April 01, 2016, 12:31:16 PM »

Welcome Sutureself. Very clever name. thanks for joining, we need new outlooks nearly all the time.
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One day at a time, thats all I can do.
kristina
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« Reply #11 on: May 20, 2016, 01:00:01 PM »

My kidney failure a result of bladder reflux not being corrected until I was twelve.  By then, over 50% of my function was destroyed.  At 19 had ureter re-implants with the hope of slowing progression.  Began incenter hemo at the age of 22 in 1978.  Stayed on that modality, by choice, until receiving a cadaver transplant in 1990.  After a rough first 2 months, I had 13.5 great years with the transplant until going into rejection.  Started back on hemo on what would have been the 14th anniversary of my transplant. 

Relisted in 2005, but with type B blood and a 99% PRA, I knew it would be a long wait for another decent cadaver match.  Because of physical challenges related to 25+ years of renal failure and dialysis, I decided to double list to a local transplant program about 2 months ago.  The director of kidney and pancreas transplant medicine is my former nephrologist of 7 years who I greatly respect.  Have a urology consult left in the evaluation process and hope to be approved sometime in May.   

I've been on extended hours incenter hemo for the past six five years and continue to work (self-employed since 1993).  Yet, dealing with neuropathy in both hands, systemic disease-related pruritus (not from high phos level, mine runs between 2.5-4.0) and amyloidosis in my neck have made living a good life quite the challenge.  However, I celebrated my 60th B'day a few months ago with a group of great friends and feel fortunate to still be around.

That's me - SutureSelf


 

Hello SutureSelf and welcome...
... Reading your introduction I had an déjà-vu-feeling because I have always admired your (?) survival determination as Noah Vale (?) ...
... Are you the very same Noah Vale or am I mistaken?
What is the difference between Noah Vale and SutureSelf? If they are the same person why are there two different names?
Please don't feel offended in any way by my enquiry but I only wish to deconfuse my mind about this.
Many thanks from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Zach
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"Still crazy after all these years."

« Reply #12 on: May 26, 2016, 07:47:50 PM »


The nephrologist who rounds in her place told me that if they did use the Lixelle, those patients would not get high flux dialyzers since the device would compensate for the better clearances.


I'm not sure that would be true.
" … Kaneka Pharma America LLC has agreed to label the device with a maximal blood flow rate of 250ml/min."
That being the case, for US dialysis centers to meet their URR and Kt/V goals, a high flux dialyzer might be in order.

I believe that the studies in Japan included both low and high flux dialyzers.  But I may be wrong, since I'm not an expert.

Edit:  I made the highlighted markings on the attached document.
« Last Edit: May 27, 2016, 03:50:55 AM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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