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Gerald Lively
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« on: December 01, 2011, 03:49:10 PM »

After making a fool of myself by complaining about my history of ailments, I have a serious question.
I feel like crap all of the time.  It starts immediately after dialysis which is a study in how to waste four hours every second day.  We have tried to lengthen the time under dialysis, take less water out of my system, religiously following the Dietician’s diet, drinking less water (moisture), and nothing changes.  I feel washed out.
Upon standing after dialysis, my BP is 92 over 60.  The doctor was trying to measure something or other.
Within thirty minutes of a dialysis session, it gets worse.  I get headaches behind my eyes.  Joints ache. 
Dialysis has been in my life for five months.  This forum is the best resource I have.  God bless you!  So, my question is this: is there something I can do to make the dialysis hangover less of a problem?
Gerald (the complainer) Lively
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Hodgkin's Lymphoma - 1993
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« Reply #1 on: December 01, 2011, 04:32:59 PM »

Hello Gerald,

I totally know the feeling of which you speak.  It would take all of my strength to drag myself home after a treatment, try to eat something and then fall into bed. 

What saved me?  Switching to short daily home hemo with NxStage.  Instead of four hours 3x per week, I do 2.5 hours five times a week.  It sounds like more trouble but for me it has been a godsend.  No more washed out feeling after a treatment, instead I feel energized.  Plus no more dealing with the center and their schedule.  I dialyze at home, most often while watching football or hockey.  I guess in the summer I will have to switch to movies because baseball bores me. 

Have you investigated your options in regards to home modalities (PD or home hemo)?  In-center may not be the way for you to go, especially if you have a caregiver at home (I believe you mentioned a wife in one of your earlier posts?).
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Gerald Lively
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« Reply #2 on: December 01, 2011, 05:14:42 PM »

The problem is distance from the dialysis center (30 miles - 60 round trip).  It would seem to be a no brainer, having a home dialysis setup.  But we calculated how many times we would go to town for other reasons and we compared that to the four hours of free time my wife has in town three times per week. She likes those four hours.  It's her time.
Then I worried about some emergency with home dialysis and who would save my bacon. Yep, I worry.  I used to do that for a living - worry.  That's why they paid me the big bucks.  Now I do it for free.
Besides, I am not into stabbing myself with a needle.  Gives me the shivers. Zowie!!!
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Hodgkin's Lymphoma - 1993
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Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
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Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
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Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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« Reply #3 on: December 01, 2011, 05:33:26 PM »

I don't know which machine your unit uses, but the one we use has two profiles.  One profile takes a whole bunch of fluid off right at the beginning, and then smaller amounts as the run goes on.  The other takes the same amount of fluid off each hour that you are on.  How quickly the fluid comes off can affect how you feel, just as much as how much comes off.  It's also good if you know your limit. I know that I can only take off 3kgs max, no matter how above my dry weight I happen to be
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« Reply #4 on: December 01, 2011, 05:56:45 PM »

Well, I am still working full-time so I was finding that in-center dialysis was getting to be too much of a burden on my schedule.  I had to miss too many important meetings as well as give up my Saturday afternoons. 

As far as an emergency, the training nurse was very clear on what to do in an emergency situation.  I am not worried about emergencies.  If the poop really hits the fan, I am about five minutes away from a firestation with EMTs.

And as far as the needles go, I'll let you know after tomorrow when I stick myself for the first time.  I am not fazed by needles or blood (mine or others) and I have been establishing my buttonholes so far with no issues.  I would actually prefer to stick myself because I know my own arm better than anyone else.  I would be having a fit if I was in-center and some different tech stuck me every time.  Also, from what I understand, infiltrations are better with NxStage than with the in-center machines because as soon as problem shows up, the machine shuts down and doesn't blow up your arm like a balloon.  I was infiltrated on Tuesday and after some ice and a bit of heat later, you wouldn't even know anything went awry.


The problem is distance from the dialysis center (30 miles - 60 round trip).  It would seem to be a no brainer, having a home dialysis setup.  But we calculated how many times we would go to town for other reasons and we compared that to the four hours of free time my wife has in town three times per week. She likes those four hours.  It's her time.
Then I worried about some emergency with home dialysis and who would save my bacon. Yep, I worry.  I used to do that for a living - worry.  That's why they paid me the big bucks.  Now I do it for free.
Besides, I am not into stabbing myself with a needle.  Gives me the shivers. Zowie!!!
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« Reply #5 on: December 01, 2011, 06:32:41 PM »

I agree completely with Cattlekid.  I am putting in my own needles - I'd much rather do it myself and with the buttonholes to put the needles in, it really isn't too painful,  much less than having sharps put in.  If I was truly worried about my safety then I wouldn't go for this option as I have a ten year old child and want to be able to see him grow up.  In fact that was the very reason that I have chosen NxStage - it gives better dialysis, much more gentle and I want to optimise my chances of staying alive.  Coventional three times a week in- unit dialysis is really hard on the body, in particular, the heart.  You sound like a well-educated guy.  I have every confidence that you would do well on NxStage.
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« Reply #6 on: December 01, 2011, 07:48:21 PM »

...of free time my wife has in town three times per week. She likes those four hours.  It's her time.

You have spoken so eloquently about how fortunate you are in having such a supportive wife.  I am certain that if she had to choose between her "free time" and your health and longevity, well, there would BE no choice!

Your wife doesn't have to sit with you while you dialyze at home.  There are IHD members who dialyze at home alone.  If you prefer, your wife could stay with you while you cannulate, and once that is done, she can go and do whatever she likes.

Solely to give a spouse "free time" is a terrible reason to stay inclinic.
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« Reply #7 on: December 01, 2011, 08:44:01 PM »

i totally under stand how ur feeling, thts exactly how i felt when i was forced off of PD and onto Hemo, in the beggining i had the bottoming out bp, and actually quit all of my blood pressure meds, i was on 6 previously, thn idk what happend but the opposite happened and my bp skyrocketed and none of the meds would even touch it, i remember one time my bp was 180/120, the charge gave me a clonidine, and it jumped up to 200/150... had a massive headache. dialysis days were the worse i would spend the entire morning dreading it bc i know how i would feel coming out... my only advice is to get out of center, and try home hemo or PD, i LOVE PD, and adamantly recommending it to anybody tht has to do dialysis, theres no comparison for in center vs PD. oh and by the way, no needles and no blood for PD, just setup a machine, sterilize everything and wash ur hands, and twist on a tube... easy as cake, could do it with my eyes closed, and its done at night while ur sleeping, freeing up ur entire day. dnt count home dialysis out bc its scary, drving a car is scary the first time and while ur learning, but im sure everyone can agree its gets easierr with experience, and u have all of us and ur home care nurses to help
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Gerald Lively
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« Reply #8 on: December 01, 2011, 09:41:28 PM »

Let's see if I have it;  if I want to feel better I have to man-up and learn to stick myself with needles.  Okay, given my crazy outlook on life - do you know how crazy that sounds?  Not only that, I would have to go through weeks of training and make room in the house.  I wonder if I can set it up in the bathroom next to the toilet?  Naaaaw!
We have a special bathroom.  It is my favotite room.  When we first moved in I wanted to test the bathtub.  It has jets, bubblers and all sorts of gizoms.  But I put in too much bubble bath and the stack of bubbles reached over six feet and touched the chandelier over the tub.  Joanie took a photo of that.  Nope, all you can see is my head sticking out from the soap bubbles.
Awright people, You have persuaded me to give this another think.  Yes, thinking, as we move along the highway of life wondering where those old radio shows went and why I have to watch so many commercials.
Later Gaters
Gerald Lively
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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« Reply #9 on: December 01, 2011, 10:04:47 PM »

Man, what's REALLY crazy is the whole idea of having the blood drained from your body, sloshed through a machine, washed via a filter and then put back into your body!  You're already a denizen of the crazy world of dialysis, so sticking yourself with needles is nothing compared to what you are already doing!

People stick needles into themselves every day.  I know it is not quite the same, but think about all of the diabetics who have to give themselves insulin shots each day.

You don't have to make a decision right this very moment.  Go have a look at our Home dialysis forum and read some of the posts about NxStage.  NxStage also has a website that's quite informative.  You're pretty smart, right?  You've seen and done a lot of crazy things in your life, right?  Well, if ordinary, every day people can learn to do dialysis at home with a system as patient friendly as NxStage, I'm sure you can do it, too.  It does require a commitment of time, make no mistake.  But I hate to see you suffer so much from in clinic dialysis if you don't have too.  There are many people who just are not able to do dialysis at home; perhaps they have poor eyesite and can't see well enough to self-cannulate, or maybe they have Parkinson's or poor hand-eye coordination.  Maybe a patient is just too fragile and needs constant supervision while dialyzing.  But it does not sound like you suffer from any of these afflictions, so it may be in your long-term best interest to at least investigate what home dialysis has to offer.
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Gerald Lively
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« Reply #10 on: December 01, 2011, 10:27:58 PM »

" . . . sticking yourself with needles is nothing compared to what you are already doing!"
But, but, I went kicking and screaming into the dialysis center.

"You've seen and done a lot of crazy things in your life."
Who told?

I will seriously consider home dialysis, really, maybe, okay, I will have another look.

I promise!

Yucky-pooh.

I'm on it.

Do they have pocket models?

Nevermind.

Can I have a TV in my room?

Okay, okay, I won't push it.

Did I do anything crazy in my life?  What about that time you ran naked through the crowd at the Redwood Run?  Weren't me.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
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« Reply #11 on: December 02, 2011, 06:06:12 AM »

its ur house u can have anything u want in there, tv computer, books, food, whatever can keep u occupid for the 2 or 3 hours ur hooked up. i dnt know how much room home hemo supplies take up, but i know that all my PD supplies take up the back of my walk in closet, and i have opted to get deliveries every 2 weeks bc i am limited with space, the clinic, nurses, and the company is here to serve u, to give u a better quality of life, as hard as that may be to believe at times, but if u truly dnt believve tht, skip one dialysis session and trust me u will be even more miserable thn if u had went <noy advocating tht u skip treatments, just trying to make a point>
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« Reply #12 on: December 02, 2011, 08:41:19 AM »

A lot of it is just giving your body time to adjust and learning that it will get sucked dry and then filled up again and then do it all over again. 

I do the nocturnal dialysis where I go to the center about 6:30 at night they hook me up I read or watch a movie and I sleep until they wake me up.  My days are free and I do go home at 3:30 am and sleep another 4 hours which lets my body level out and when I wake up I'm fine.  Do they have a night shift at your center?  8 hours is better than 4 with dialysis because the process is easier and slower on your body. 

Just a thought.
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« Reply #13 on: December 03, 2011, 08:00:08 PM »

I recommend peritoneal dialysis whole heartedly.  If I could go back to PD, I'd do it in a flash.  It's really simple like what's already been said.  It takes about 5 minutes to set up, you connect yourself to it, and go to bed.  It does everything while you sleep.  There's no needles, no blood, just a bag that needs emptying in the morning.  You don't even have to stay connected to it the whole time if you don't want to.  There are caps that you can get to put on the patient line and the end of your catheter so you can disconnect during dwells. 

The way it works is, you drain (the fluid comes out) then you fill (new fluid goes in) then you dwell, usually 2-3 hours.  In this time, the machine isn't really don't anything except counting down, so you can disconnect, go out to your living room and watch tv in you favorite chair, then go back to reconnect when it's time to drain again.  It's a very cool system, and I do miss it.
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« Reply #14 on: December 03, 2011, 10:40:50 PM »

Dear Gerald, sorry to hear you have to deal with this issue at all, but since your wife has time constraints, your best options for feeling well and having time on both your hands is the nocturnal home hemo option. In addition, this modality gives you the best survival which in some studies is equivalent to cadaveric transplant. Many on the IHD forum are familiar with this and advocate it highly. Dialyzing as you sleep is the ultimate multitasking as Bill Peckham notes.

If you are able to manage the majority of the supplies and actual dialysis chores as many do well, then the impact on your life and your wife's will be lessened. The issue in the OP is feeling washed out after dialysis and that is simply the classic symptoms of the for-profit, thrice weekly short dialysis schedules with high ultrafiltration rates, lack of ultra-pure dialysate and long dialysis weekends. It simply is not enough dialysis to rehabilitate your body.

If you wish to feel well, home hemodialysis more frequently and longer duration is the answer for most folks. Exercise and adhering to diet is much easier on the nocturnal modality. Most patients have essentially a normal diet. I am on short daily, but extended longer than most for 4 hour sessions 5-6 times/week. Tonight I ate two whole Roma tomatoes and a pile of potatoes since the NxStage System One uses a low potassium bath. Salt is the big culprit I must avoid as well as many of the preservatives, especially those that are phosphorus based.

Yes, going home on dialysis is a big step and not easy to contemplate or attempt until you have done it. Looking back, you wonder why you were so scared to jump into it, but once you become well versed with the machine, it is just another task we do. I agree that the hardest part of learning to do home hemodialysis is self cannulation. Even though I have stuck large, very large needles into a whole lot of other patients, putting a large needle into my own arm brought on a lot of anxiety that kept me awake the night before my first attempt. Now, it is not fun, nor ever will be, but I just simply do it and it is done and over in a few seconds. Not a big deal at all and it is also the best way to keep your own fistula healthy. You will be much more careful than any other technician.

A lot to digest, but the people with the best chance of survival are those that engage in self care and at home.  I wish you luck learning this new life called dialysis. It will invade every aspect of your life and your family, but the bottom line is survival and quality of life. The only place to truly find that optimal combination is in the comfort of your own home.
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« Reply #15 on: December 04, 2011, 02:27:41 AM »

I'm new to dialysis, but it seems most people love PD, until they get the infection.  One poor old guy in my center was on it, and got the infection.  He got a transplant, and that went bad.  Some people have all the luck.  If you're feeling tired all the time after dialysis you might be anemic.  Your doctors can give you iron and other meds to address it.  The first two months of dialysis your body has to adjust to it.   You asked if there is a dialysis machine you could put in your pocket.  Someone has developed a 7 lb. portable machine, but I don't think it is on the market yet.  Their website was looking for investors. 
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« Reply #16 on: December 04, 2011, 08:04:55 AM »

Gerald,
My husband has been on dialysis for a little over 15 years and he has done PD, in center hemo and nocturnal home hemo .  The one he prefers is the home hemo.  He is in control (somewhat).  No schedules to stick to.  Nocturnal or short daily dialysis is much better for most people.  Your diet is a whole lot better and not as restricted on fluid.  You are lucky if you can train at the center 30 miles from your home.  We had to go to a center 6 hours away to train for 5 weeks .  We stayed with friends and only came home on weekends.  As for needles you will probably establish buttonholes and my husband says his are painless now.  I usually needle him but he is able to do it himself.  At home you don't have as many sick people around and less chance of catching a cold or virus.  In the 5 years hubby has been doing hemo at home we have never had an emergency (knock on wood).  As for supplies,  we built a cabinet in our bathroom and most stuff fits in there.  We get a months supply at a time.
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« Reply #17 on: December 04, 2011, 10:35:15 AM »

At the urging of some, we are starting our education on home dialysis.  The brand name of the unit we would use is NxStage.  As soon as my fistula develops we will begin the five week training course.  There remains a few unanswered question about water quality as used by the equipment since we live on natural well water from two deep wells.  City folks, like our nurse, are skeptical.  No chemicals here.
We have plenty of storage space.  We built this house just a few years ago and I was thinking about a few months of food supply if we decided not to go shopping, when I drew in a pantry larger than my bedroom.  Lotsa cabinets. 
Back when the old house burnt down we lost our dog, Sophie.  With home dialysis I have an opportunity to fill in that void and we will be shopping for another pooch.  Our cats have voted “No” on this.  Too bad.
This dialysis adventure may work out after all.  Thanks for the info.
Gerald
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
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« Reply #18 on: December 04, 2011, 10:37:49 AM »

I am so excited for you.  I think you will really enjoy the NxStage once you get through the training and get home.  Even the training was great for me as the actual treatments left me energized, not drained. 

And good for you that you are shopping for another dog.  As a confirmed dog person, the cats can just stuff it.   :rofl;

At the urging of some, we are starting our education on home dialysis.  The brand name of the unit we would use is NxStage.  As soon as my fistula develops we will begin the five week training course.  There remains a few unanswered question about water quality as used by the equipment since we live on natural well water from two deep wells.  City folks, like our nurse, are skeptical.  No chemicals here.
We have plenty of storage space.  We built this house just a few years ago and I was thinking about a few months of food supply if we decided not to go shopping, when I drew in a pantry larger than my bedroom.  Lotsa cabinets. 
Back when the old house burnt down we lost our dog, Sophie.  With home dialysis I have an opportunity to fill in that void and we will be shopping for another pooch.  Our cats have voted “No” on this.  Too bad.
This dialysis adventure may work out after all.  Thanks for the info.
Gerald
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« Reply #19 on: December 04, 2011, 01:58:35 PM »

Gerald, if you haven't done so already, please go to this site's NxStage forum where you will find many posts about the machine and the training.  I've always been told that if you can drive a car, you can dialyze at home with NxStage; if it wasn't patient friendly, then no one would use it and the company would go bust, so it is in everyone's interest that it be made simple to use.  I look forward to hearing more from you about your training!  I think you'll do just great!
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« Reply #20 on: December 04, 2011, 02:10:27 PM »

Uh, I don't drive unless I have too.  It is an eyesight problem - plus the dizziness I get from moving about.  The DMV gave me a driver's license even after I explained that it wasn't in my best interests, and, I have the Harley up for sale.
Hey, if this NxStage thingy works and the bike hasn't sold, I might remerge as the "King of the Road" and take over small towns and terrorize little old ladies.  But times change things; there aren't any small towns left and those little old ladies are lifting weights.  Gotta be careful.  Uh huh!  Can't drink beer because of potassium and other goobers, those good looking little old ladies can out run me now, life has truly gone to hell since the advent of dialysis around here.
Hey, I could install a converter and strap my dialysis machine on the back seat and then I could roar into town and  . . . . . . . . . Nevermind.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
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« Reply #21 on: December 04, 2011, 02:16:56 PM »

Dialysis has never made anyone's life easier, but it does make life possible.  The trick is finding how to make dialysis an easier fit into your life, and having to adhere to a clinic's schedule is not the way to go.  If you can bring dialysis home and do it on your OWN schedule, then you grab a bit of control back over your life.  But the important thing is that more dialysis will make you feel better.  It's really that simple, and the only way to get more dialysis is to receive it at home.  When you feel better, then those lovely little old ladies are gonna slow down so that they can get a better look at ya.
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« Reply #22 on: December 04, 2011, 03:52:31 PM »

 :bandance;  Im as happy as can bee about you joining the NsStage force... Yea, it aint a whole bunch of fun, but sure gets ya back to haven more fun than ya are now a dayz..   Give it your best shot at it and all the best to you...   :yahoo;
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« Reply #23 on: December 04, 2011, 04:54:09 PM »

Gerald,
We were very happy with doing NxStage. We worked more than full time and Carl felt great. If water quality is an issue, you can use the pre-mixed bags. They take more room for storage, but that doesn't sound like an issue for you. We kept most of our supplies in the garage, with a few things stored in a hall closet. Carl ran a drain line for the waste through the wall of the room we used into an adjacent bathroom. I would LOVE to hear that you have fired up the Harley and are out on the roads with the wind in your face!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Gerald Lively
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« Reply #24 on: December 04, 2011, 05:01:31 PM »

The water quality should be fine.  The day we decide that cholrined water is cleaner than virgin well water, I will . . . ah . . . er . . . .
Yes, we do filter for particulants and a filter will last up to six months.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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