Is Dialysis against the law?

[Gerald Lively]

My guess is this all began last January.  I was sitting in my super-comfortable BARCO Lounger watching something dumb on television, when I noticed a bulge in my upper abdomen.  I stood, poked around and wondered what this inglorious body-wide lump was all about.  Following that, I hardly ate anything for three days, thinking this hump would return to it’s former more attractive flatness.  It did not work.
So, I hotfooted it to my Doctor’s office.
He didn’t know what it was.
We tested this and that, drew blood, poked and prodded for the next five months.  I demanded a colonoscopy even though my doctor said it wasn’t the colon. The colon-Doctor required a CT scan before the procedure and he called me in while wearing this very serious look on his face. 
“What’s up, Doc?”
His very long nose twitched, not a good sign.  “You have Hodgkin’s Lymphoma.”
I didn’t faint, grumble nor did I enter into a denial phase.  I have had this cancer before.  In fact I have had three previous rather serious cancer, this moment making it my fourth.  He said the tumors were large and they filled my entire abdominal cavity.   He sent me to my Oncologist with whom I was well acquainted.  He tossed me into the hospital.  By the time I checked in (July) I was unconscious most of the time, and I was hallucinating.  My blood work then revealed a need for a kidney Doctor (Nephrologist).  She declared almost immediately, that I had been walking around with renal failure.
Yep, renal failure and cancer at the same time.
I was delirious for the next six days.  Every time I woke up, this guy was sitting beside my bed reading a gossip magazine and I was hooked up to something that looked much like an old refrigerator in a junk yard.   
I am 73, have three great-grand children, and in the process that began in January, I lost about 40 pounds of body weight.  Dialysis was new to me. 
During that first week in the hospital, I had a dream that someone was pound viciously on my collar bone. The voice instructed me to trun this way and that way, and I recall telling whoever that I was going to punch him out if get didn’t get off my body.  Twas my catheter, I learned later.  Never did find that particular doctor.
Here it is, late November and I still have that row of Christmas light hanging from my chest.  I saw a Doctor yesterday and we are going to have this fistula thingy installed.  I will be a semi-bionic man.
Dialysis leaves me extremely fatigued and dizzy, and it requires a full day to recover.  I put the Harley up for sale and I stopped lifting weights.  Yep, I was a record setting powerlifter.  No mo!
That, folks, is my story and I’m sticking with it.
G. Lively

[Joe]

welcome to IHD Gerald Hope you find lots of good information here. And I can sympathize with you about your Harley, I sold mine too. I may start looking for a trike though...

[rsudock]

Welcome! So what is the prognosis with the Cancer? You certainly sound like a fighter to me!!!

[Gerald Lively]

Yes indeed, I put the Harley up for sale.  It is new, having just 3,000 miles on it.  Can't ride it anymore due to this dizziness.  I move, I get dizzy. I have always had blood pressure at the low end of the normal range.  While this gets me out of a lot of chores, it is a miserable way to live.  I think the CIA should consider dialysis as a torture method rather than waterboarding. 
Then there is this water-restriction business;  I am told to limit my liquid intake to somewhere between 32 oz and 50 oz per day.  I am very used to drinking a lot more than that.  In fact, this dialysis business has completely overturned my lifestyle.  Yukie pooh!
I have introduced my wife to the tools in the shed.  HA!   We shall see how that works out.
gl

[Gerald Lively]

rusdock;

The cancer was easy.  My Oncologist says my timing was good with respect to the chemotherapy used in my case.  He calls it "antibodies" and this is very different from the ABVD chemotheray used years ago. The cancer, he says, is a rare strain of Hodgkin's Lymphoma that is easily knocked down.  That is the good news.
The bad news is this cancer comes back again and again.  So, every six months I have to undergo a round of chemo (four weeks) - for the remainder of my days. 
I am depressed about this dialysis business and I do take an anti-depressant.  The cancer was no mystery to me.  Crazy, huh!!!
By the way, I'm getting fat.
gl

[Willis]

Do some searches on this site referencing Peritoneal Dialysis (PD). That gives active people a lot more freedom and usually doesn't require water intake restrictions which might help with your BP problem too. I'm not as perky as I used to be and I'm only 58, but I'm still able to work full-time and play 3 times per week at a competitive sport. (Though not as well as I could when I had more energy.)

Sorry to hear about the cancer. That might disqualify you from PD but it's worth asking your neph.

 

[willowtreewren]

Hi, Gerald!

Man, I like your style! I would worry about fluid retention if you are "getting fat." It builds up in your tissues and can be pretty hard on your heart!

Yes, the fluid restrictions are a bear, but better than having to have it all pulled off of you during each treatment. That can REALLY make you feel pretty yucky!

 

You've found a good place for support and information.

Aleta

[MooseMom]

You've asked a good question..."Is dialysis against the law?"  Well, the way it is practiced in this country, I'd say that it can certainly border on assault.  I mean, think about it.  Normal kidneys work all the time, right?  Every minute of every day, they are clearing your blood of toxins and are maintaining fluid and salt balance in your body.  So, having dialysis for a few hours three times a week is supposed to do all of that work?  I think not.  And this is why you feel so dreadful after each session; a machine in a clinic is attempting to do all the work at a faster rate in a shorter amount of time, and that's just defies the laws of physics.

You are neither bionic nor Borg.  You cannot be assimilated as much as they might try.

So, what do you do about this abysmal state of affairs?  You might not like this answer, but there's none of this that anyone likes.  The answer is more dialysis.  Yep, more time on the machine with is running slower and longer.  This is why more and more dialysis patients are wanting to do dialysis at home because as of now, home is the only place where you can get MORE dialysis.  Our dialysis providers and too many of our nephrologists don't want to change the status quo from thrice weekly sessions in a clinic. 

Now, I'm just sticking my nose in your business here, and if I'm way off base, just ignore me.  As I see it, you have two options.  One is to start training for home hemodialysis.  There are plenty of people here on IHD who do this (and this is what I plan to do when I start dialysis), and several of them have posted all about their training and their experiences with taking dialysis home.  The dizziness you are experiencing after each session is common, and just about everyone complains about having to spend a whole day just recovering from a session.  So, that is one option, and it is a good one but is not for everyone.  Here is a link to a very good website about home dialysis...

www.homedialysis.org

Maybe you can do some research and think about it.

The other idea I had is, again, getting more dialysis but in your clinic.  Since you are a cancer patient, your nephrologist could make the case that since you are a more fragile patient, longer and slower dialysis is going to be safer for you.  An extra session might ease your post-dialysis symptoms.

No one likes dialysis, and no one really likes MORE dialysis!  But if you read the posts from people here on IHD who are getting more dialysis, you will find that they are generally healthier and happier with life.  We have several members who do their hemodialysis at home at night (nocturnal home hemodialysis, or NHHD), so their days are their own.

Get your fistula up and running, and then start thinking about some of these other options.  If you decide to maintain the status quo and stay in clinic, I hope you are able to get an extra session or even longer running times if that's what you wish.  Good luck to you, and keep coming back and letting us know how you are doing.  You've got great-grandpunkins to keep up with, so you need all the energy you can get!!

(PS:  more dialysis means less heinous fluid restrictions)

[Gerald Lively]

The good Doctor tells me my lab numbers are good.  Yet, I protest because that is much too vague to be uaseful.  So, they tell me the following:
1.  My Creatine was at  14 when they hauled me into the hospital and now it is 3.  So I ask, "What is a good number?"  The answer is 1.  Well holy creatine, Batman, how do we get that number down?  The answer - Don't worry about it.  Hmmmm!
2.  Diet has not had much effect on lab numbers.  I am back on a low-potassium diet and I do take binder pills.  This one is a matter of trust in my Doctor's opinion, even if information is not always forthcoming.
3.  Water retention doesn't seem to be my problem.  Fior five months I didn't even know I was supposed to drink less.  I tried limiting my intake to 32 oz and other problems emerged, such as difficulty swallowing and a change in my voice - upset stomach and constupation.  Now I am getting about 40 oz per day. Doctor said twas okay.  They thump my ankles three time a week.
4.  My weight doesn't fluctuate much more than a pound and a half from day to day.  Last January I was a mean looking 256 lbs.  All of the years of weight training muscle tissue are gone, wasted. I lost weight to 211 and am back up to 225.  I seem to have stablized there.  But I have more than a few jiggles now.

Summary:  I follow the doctors advise but I don't pretend to understand it all.  Between here and there, grumbling all the way, I will survive.
gl

[ToddB0130]

I believe a creatanine of 1 is for someone with normal kidney function.  You can confirm that with your doctor,  but with any kidney impairment,  I wouldn't expect to be at a 1 (unless perhaps after a transplant of a healthy kidney).

[MooseMom]

Once you are on dialysis, there is not usually much emphasis put on either creatinine levels or egfr.  Those are numbers that are more closely followed in pre-dialysis people because those numbers are used as a guide in deciding when to initiate dialysis.  Once you are on dialysis, those numbers don't mean much anymore because, well, you are on dialysis!

If your you are following a low-potassium/low phosphorus diet and are taking binders, then if your levels are still too high, then yes, your diet probably isn't having much effect.  That means that you have to be more vigilant about your diet (particularly when it comes to portion sizes) and your neph may have to either change the dosage of your binder or prescribe a different binder.  Some work better than others.  Some cause more problems than they're worth.  Everyone is different.

There is no reason at all that you can't learn to understand what is happening to you.  I believe that in another thread, someone gave you a link to Kidney School.  The internet is an incredible resource for information about kidney disease and dialysis.  Use it.  You don't need to fumble around in ignorance, and you don't have to wait around for a doctor to give you simple information.  Get your labs and go from there. 

Dialysis patients need exercise just like anyone else, maybe more so.  Renal patients are susceptible to muscle wastage, but that is not written in stone.  Ask your doctor about resuming weight training.  The only concern I'd have is your fistula; you can't be lifting enormously heavy weights with a fistula, especially a new one.  But I'd bet that you could come up with a good program with which to get yourself back in shape.  Google "Shand Ireland" and see how he has become an athlete while being a dialysis patient.  It's an amazing story.

[CebuShan]

        How I wish sometimes that dialysis was against the law! I too usually take a day to recover from my treatments but I do take my dog for a couple of times a day. Some days I have to force myself and sometimes the walks are shorter but I do it. Best of luck to you! Glad you're here.

[Ang]

 

[Wenchie58]

  Gerald

[billybags]

        Gerald you sound like a really fun guy. Keep being positive.Look forward to your posts, they make me smile.