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cub fan
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« on: December 28, 2015, 12:57:58 PM »

Hello Everyone,
This is my introduction.  I had a 20 pound cancerous tumor removed from my belly in 2012 and in the process they took out one kidney.  My remaining kidney was not as healthy as I had hoped.  My GFR slowly went down to 12 at which point my nephrologist recommended I start on dialysis.  Previously, my wife and I had explored all our options, from PD to home hemo.  We really wanted to learn home PD but my belly had too much scar tissue.  So we chose home hemo and NXstage training thru Well Bound.  We had a wonderful nurse training my wife, who had great skills.  She was great at putting my needles in and pulling them.  However, we eventually, after 6 weeks of daily training, could not get over the anxiety of doing hemodialysis at home.  She felt my life was in her hands.  The damn machine was amazingly technologically advanced (although I assume in the future it will become even better).  We did learn the machine set-up and take down and cleaning.  But it has hundreds of alarms that are detailed in a book with all the fixes.  But that meant finding the alarm number in the book and correcting it before my blood started to clot (we were told 2 minutes).  Our nurse's answer, as the final solution if we couldn't figure it out, was always "call 911".  That was just more than we wanted to handle.  I wasn't able to handle doing much more than reading to her.  My vision didn't allow me to learn how to self cannulate.  I did watch the machine and do the recording of our numbers (bp, venous and arterial pressure rates, etc.)  It was a sad day when we decided we just could not do home hemo, but it was also a day of immense relief for my wife.  She is extremely involved with my care and diet and does all the reading about my issues.   :guitar:
I switched to in center dialysis with Satellite a month ago.  I go 3 times a week for 3 and 1/2 hours.  It has been difficult to adjust to the protocols of in-center.  We had been trained to take a lot of charge of the dialysis and learned how to deal with my dry weight and how much to take off.  In fact, my wife programmed the machine to the numbers which she and I (eventually, after having learned this from our nurse and doing it every day) determined were the best.  This included the UF flow rate and the volume.
I never cramped or had any other issues during 5X a week dialysis at home hemo training.  My BP was always great.  I went off of two of my blood pressure meds.  My diabetes blood sugar numbers were excellent.  I felt better after the first dialysis session, but eventually sometimes was quite tired after sessions. 
Now that I am "in center" I had cramped almost 50% of the time.  I wrote to my nephrologist and she put in an order that they stop taking anything off (no UF) and just do the blood cleaning.  No cramping since then.  I also stay really close to my dry weight very consistently.  I finally got to have my labs done (blood work) and was very pleased that my KT/v was excellent, meaning I am getting good dialysis.  A HUGE factor is that I continue to urinate.  During a 24 hr. urine collection it was 1700cc's.  This is an important factor for how to set up my machine.  I find that in center the techs do not have enough awareness of each individual patient.  for instance, it was assumed that i wasn't urinating until I told them.  I have a long history in their computer bases because Well Bound where I did home training is affiliated with Satellite here.  Some techs may have knowledge and some may not.  In any case I don't believe they have gone thru much actual book learning training so they can understand the many complex issues that dialysis encompasses.  I believe that dialysis is in it's infancy here in the U.S.  So many fast changes over the last several years in their protocols.  I just learned that in Australia and Japan they do dialysis for longer periods of time at slower rates and the morbidity rates are less than ours.  Why is this? :) Money, corporate mentalities, lack of patient understanding and awareness? 
 :bestwishes; to all!  I will use this forum to vent my own frustrations and to learn from all of you fellow dialysis patients and their loved ones :flower;

« Last Edit: December 30, 2015, 12:15:03 AM by cub fan » Logged

One kidney removed in 2012 during retroperitoneal liposarcoma tumor removal at UCSF.  Remaining kidney not in great shape.
Early 2015 started searching for a live donor at nephrologist's suggestion.  Registered with UCSF transplant program.  Found 2-3 willing to go for testing.  Had 5 relatives and other friends willing to do a kidney pairing or chain.
April 20, 2015 UCSF turned us down for a transplant saying that I had to be 5 years cancer free due to the anti-rejection drugs potentially causing cancer,  and to reapply in Sept. 2017.  Will do!
Oct. 7, 2015 started home hemo training with WellBound and also had first dialysis session, which continued for 5 days a week for two months.
Nov. 25, 2015 started in center hemo 3 X a week.  Many question.
Simon Dog
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« Reply #1 on: December 28, 2015, 01:27:48 PM »

My doc warned me that the most common reason for home hemo patients to return to the clinic "caregiver burnout".   My wife was also terrified of taking my life in her hands, so I decided to put it in my hands instead.   I handle everything start to finish without help, unless there is some sort of emergency or I need room service.  It is unfortunate that you have the vision barrier.

As to the alarms - if you could talk the clinic into springing for an iPad and Nx2Me software (for which NxStage charces $99 per patient-month, but has been known to negotiate down to a fraction of that), you won't waste any time looking up alarms.  When the alarm number pops up, you tap on "more info" and get a full description of the alarm and corrective action.

I expect the Tablo (from a NxStage competitor) and the NxStage System 2 will be even easier, since they are bothreported to have an integrted touchscreen rather than the numeric LCD screen of the System 1 and 1S - plus, they will make the dialysate (bicarb rather than lactate) in real time, removing the need to bags or to pre-make a batch of solution.

Quote
Some techs may have knowledge and some may not.
Remember, the RN's in the clinic all have 4 year degrees and extensive clinical experience (I don't know of any clinics that hire RNs with ADNs or diploma school grads), but the techs are genuine high school graduates with a 6 week training course.

Quote
Now that I am "in center" I had cramped almost 50% of the time.  I wrote to my nephrologist and she put in an order that they stop taking anything off (no UF) and just do the blood cleaning.  No cramping since then.
It would be even better if she could write an order telling the clinic to follow your direction as the the UF setting for a treatment.

ps: That tumor sounds like a prize winner.  I hope you had it bronzed.

« Last Edit: December 28, 2015, 01:34:53 PM by Simon Dog » Logged
Michael Murphy
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« Reply #2 on: December 28, 2015, 02:14:30 PM »

Welcome to this wondrous site.  From reading your post I see you have the same fortunate functionality that I do what I drink I still eliminate.  My first 3 months ion dialysis were hell,  my nephrologist limited me to 40 ounces of fluid a day and began taking off two to three kilos of water off every session.  Cramping was only one of the side effects, no energy, dizzy, and tired.  This continued till one day I was at the nephrologist and they took my blood pressure and it was 75 over 40.  My dry weight was seriously raised so things got better, along with no fluid restriction.  What I learned is that as the patient you have a great deal to say about your treatment.  The techs should not assume anything but follow the procedures that the doctor has aproved.  For some reason some tech feel the need to challenge your dry weight every now and then.  This involves taking off more fluid then they should.  The other strange thing I do is once a month I check my output against my input if they match things are great if they don't it's time to start planning on fluid restrictions.  The other good news is with a high volume output your blood work should be close to perfect it's easier to control phosphorous and potassium.  Good luck
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kickingandscreaming
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« Reply #3 on: December 28, 2015, 05:33:38 PM »

Welcome, cub fan.  I don't have anything brilliant to add, but just want to say 'hello."  I, too, am on in-center HD, but I fully intended to do PD, but my catheter failed.  I had it retweaked (it was covered and filled with fibrin), but now I am suffering from what seems to be chronic constipation and that precludes doing PD.  So I'm not sure what's going to happen.  But it seems that this dialysis business is an unpredictable road.  You start out in one direction and end up somewhere you didn't plan to go. 

I think the US is really backwards compared to Australia and New Zealand and other countries. And Nephrology as a specialty is stuck back in the 50's.  So little real progress. The US dialysis program is all about the mighty dollar.  Just like everything else in this country.
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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
Vt Big Rig
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« Reply #4 on: December 29, 2015, 04:45:04 AM »

Welcome to the site, cub fan.

I am very sorry to hear that you and your wife had trouble adjusting to life with the NxStage machine. I truly believe it is better for you and the alarms get to be old hat, there are not that many once your access is working right and the flexibility of treatments is fantastic. We have been doing NxStage for 7 months at home now. We have never gotten close to calling 911. I think your training nurse, while forced to give you certain information, scared you guys with some of it. And believe it or not ,,,, the needles get to be pretty easy also. My wife now frets more about my access still being troublesome than she does about anything she does.

Having said that; it is a personal decision and you have to do what you have to do.

As others have said take charge of your care. Discover how to make the tech listen to what you want done, not a cookie cutter approach.

Oh, and being a Red Sox fan all my life, my condolences on following the Cubs. (Sorry about that) :rofl;
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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When all else fails run in circles, shout loudly

« Reply #5 on: December 30, 2015, 01:33:29 AM »

Welcome to the site cub fan

     :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
cub fan
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« Reply #6 on: January 01, 2016, 01:12:39 AM »

Dear Friends,  :thx;

Thank you for your welcoming notes.  I just got a UTI and am feeling punky right now.  Nevertheless, Happy New Year everyone!  For us, we hope it is a better one than last year!  Any thoughts about getting a UTI while on dialysis and still urinating significant amounts? 
Logged

One kidney removed in 2012 during retroperitoneal liposarcoma tumor removal at UCSF.  Remaining kidney not in great shape.
Early 2015 started searching for a live donor at nephrologist's suggestion.  Registered with UCSF transplant program.  Found 2-3 willing to go for testing.  Had 5 relatives and other friends willing to do a kidney pairing or chain.
April 20, 2015 UCSF turned us down for a transplant saying that I had to be 5 years cancer free due to the anti-rejection drugs potentially causing cancer,  and to reapply in Sept. 2017.  Will do!
Oct. 7, 2015 started home hemo training with WellBound and also had first dialysis session, which continued for 5 days a week for two months.
Nov. 25, 2015 started in center hemo 3 X a week.  Many question.
Darthvadar
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« Reply #7 on: January 04, 2016, 06:26:40 AM »

Ooops!!!....

Sorry Cub Fan... How did I miss you and your first post on IHD???... The steroids are frying more of my brain cells than I thought!....

Belated, but very warm, and heartfelt  :welcomesign;...

Sorry to hear of your troubles....

Visit and post often... We like the chatty ones!....

Darth... Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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