Fresh Meat

[angroid]

Hi,

I am a 50 year old ESRD male with Polycystic Kidney Disease first diagnosed in 2003.
Dialysis has been the recommendation to me for the last 6 years.
I finally began in-center hemodialysis, still reluctantly, about one month ago, after reaching a GFR 3 (US).
In effect I stayed out of the chair four years longer than I was supposed to, against doctor recommendations, and not much worse for the wear.

I have been otherwise healthy my whole life. I continue to be skeptical about the science used to treat us, both pre and while on dialysis,
its method, direction and basis. In fact, I think it might be over-prescribed for those between GFR 13 and GFR 5. Its many pharmaceutical contradictions are baffling. Plus, the basic
technology/theory has not changed much in 50 years.

After this journey I am here to share what I know, derived from battling with doctors, medicines and treatments, and questioning everything along the way, and to learn from similar patient experience.

At this moment in my treatment I have requested no more than two 3-hour sessions per week, with only small gauge needles at higher speed, and am having only 1/2 to 3/4 of the amount of water they suggest
be removed. So far it has been approved but I need to see one more doctor about the changes.

So don't expect any rah-rah from me...if "being upbeat and having a good attitude makes all the difference" means a lot to you, you might not like what I have to say. To me that just too often means "shut up and
do what your told cheerfully".

But I do appreciate being with people in similar predicament and am eager to share experiences.

Best,

Angroid

[cassandra]

Welcome to the site angroid

     

I do think the entrance GFR should be used less rigidly than it is at the moment too, but some people already feel the effects of a GFR of 18 or 20.
 
Take care, Cas

[cattlekid]

Hello Angroid and welcome!

You have a kindred soul in me.  I was diagnosed with IgA nepropathy at age 30 and was able to stave off dialysis for 10 years until I turned 40 and my GFR went from 57 to 5 in the space of less than three months.  There was no time to decide options or place a fistula and I was thrown into the dialysis machine in January of 2011.  I immediately listed myself for transplant and spent nine grueling months slowing losing my sanity in-center before I learned about home hemo from the fine folks here.  I was fortunate to receive a deceased donor transplant in April of 2013 and have been stable since.

Like you, I questioned everything and wanted to learn as much as possible.  This didn't sit well with certain members of my in-center staff.  Thankfully, my nephrologist appreciated my proactive attitude. Without it, I don't think I would have been listed for transplant as soon as I was (approved on the list only 6 months after first dialysis session).  I am a great advocate for learning everything you can, questioning everything and being proactive, including switching doctors, clinics and modalities until you are satisfied that YOUR needs are met, not the needs of some for-profit dialysis corporation or insurance company.

I'll get off my soapbox for now other than to reiterate my welcome.

cattlekid 

[angroid]

Thanks for the welcome, Cassandra.

I want address the statement about some people feeling the effects, but first let me confess .

Cassandra this is big business in my opinion. When you research you see great links throughout the country between nephs, centers, vascular surgeons, vitamin/drug supply lines, etc.
I have been to my nephrologists, nice, knowledgeable guys, dozens of times. Not once did he even ask me to take my shirt off. Being I have PKD you would think distention and so on
would be a concern.

Actually, all they do is look at you and look at your blood and set the treatment based on what the CBC says. You are considered off the mean and must be brought back there.

The feeling I get therefore is that few of us get any real "care." Yes we get carING, due to some kind souls and perhaps human nature, but beyond that all we get is the direction to hit The Chair.

Most of us (seems...I can't speak for everyone) get little else, in terms of "What else can we do?" or "What else can it be?" or "Let's try this (or that)." I even told my neph I would volunteer
for borderline treatments (rapamycin), or even sacrifice myself for the cause of eliminating PKD (nobody lives forever), to no avail.

I asked how low GFR has gotten before the person died (the record) and this seems to be unknown. You would think something like this would be known. I considered that route, also to benefit science...

(To this day, no work has been done by the medical community to assess the damage caused from the cysts also on my liver and pancreas, which also, you would think, could contribute to things like toxins in the body.)

All in all, observing how the treatment works for most of us, I feel few if any "kidney patients" get any real care. What they get is bloodwork saying "toxins" exist, although these toxins are never really specified to any degree.
Creatinine itself, remember, is harmless. Protein is required. Uremia is always present to some degree, that line between what is "uremic" and what is "unsolved waste" not being so clear.

Few of us are told that the liver, the intestines, and several other organs (spleen) also contribute to cleaning the blood.

The common in-center procedure of weigh-ins is also a problem. Nobody is the same weight day after day, and any attempt to treat a person as such by regulating water is bound to cause things like cramps and the deterioration
of other organs due to the disruption of the natural balance and bodily system of water regulation.

My second day in The Chair I asked if they ever monitored the waste coming out of the machines. The answer is No.
Since the dialysis machine has no real brain and doesn't know potassium from iron (as I told the nurse), it relies on the size of the particles for the osmosis cleaning. Big ones stay in, small ones stay out. That's all it is. In this case,
it would seem beneficial to monitor the waste removed, to be sure of both the effectiveness of the cleaning (not really reflected by monthly bloodwork), and that needed vitamins, minerals, even plasma particles/elementals
are staying in.

Personally, last time I went to dialysis (last Friday) I had terrible cramps and now my fistula arm is still sore. My fistula is a beauty (I am told) and marveled at like a prize specimen by the medical community, and was ready in less than 3 weeks.
This fistula I waited for after I was told I would likely die if I did not get a catheter immediately.  I said I want no catheter, I will wait. They shake their heads and continue to shake their heads.

If I didn't have such a great family and friends that want me alive, I wouldn't do this madness at all. I've seen a lot, been far and wide, for 50.

What happened and why is my arm sore from elbow to shoulder? Why the trauma last time?

Well, nobody knows. The doctors here (a trio) work as one (LOL) and frankly I didn't want to see Dr. #3. So I speak to the head nurse (who does all the work anyway) and specified to her my requests for further dialysis.
So I will skip two sessions and maybe return on Monday.

Now (LOL) about feeling the effects. I remember as a kid being unable to read and ride in a car for more than a minute without getting sick. When all the kids rode the rollercoasters I threw darts at balloons. If I would drink it never took
much to get me drunk. The point is, what effects was I feeling? It is fact that everyone gets headaches, everyone gets dizzy, everyone's pee slows down as they age. It is too easy to say "the kidneys the kidneys" and then stop
looking for other causes, which in fact may be behind the original kidney malfunctions.

Sorry for the length.

angroid

[SooMK]

Hi Angroid. I am so interested in many of your points. I know what CKD can do because my mother ended up near death in the ER before being diagnosed with kidney failure. Her 7 miserable years on dialysis until she died were difficult to watch. I am also eternally grateful to my living donor who has saved me from having to go on dialysis. I have always gone along with the program myself but have a great appreciation for those who do not. I was so surprised that nephrologists did not seem interested in the cause of my CKD. Everyone seemed to go into a bucket and take their place on the dialysis conveyor belt unless they were rescued by a living donor before that happened. Without lab reports in front of them nephrologists--as well as PCPs in my experience--seem to be lost. Very important to have people who question the system. Welcome!

[angroid]

Cattlekid, thanks, always happy to find a true kindred spirit. Seems aren't many...most seem pretty content to do what they are told... 

I am also very happy you have found a match! I wanted to skip dialysis and go that route from beginning (I had donors). I was told they would not approve me (Emory Hospital)
unless I first "showed commitment" to dialysis! 

Now I will probably go on the list, as PKD is supposed to be genetic (my parents close to 80 still alive, grandparents all lived to over 70...), although they say in my case it was a
"spontaneous mutation"  . Anyway, I have 4 kids and 5 grandkids and since they all might need kidneys according to this logic I am hesitant to take a kidney from my wife or kids.

But when I get around to spending the day 3 hours away so they can check my molars and thereby make me eligible for "the list", I will wait my 2-5 years for a piping hot cadaver kidney, I guess...

Contact me anytime,

angroid

[MooseMom]

Angroid, welcome to our community!  I'm glad you found us.

We all seem to have different experiences when it comes to having a chronic condition and therefore being forced into the medical industrial complex.  I was fortunate to have a nephrologist who was bound and determined to keep me from dialysis for as long as possible. 

Since every kidney disease is different in its scope and effects, I can only speak for what applies to me; I have fsgs, which is a scarring disease of the kidney.  No one knows why this happens (but research into the cause goes on), but it does, and it results in the same co-conditions caused by other kidney diseases.  We all can have problems with hypertension, which untreated leads to further damage to the kidneys.  Problems with calcium, PTH and blood lipids are the big challenges in most renal conditions and need to be treated.

I understood all of this, and I also understood why I was taking the meds I was prescribed.  I didn't need my neph to hold my hand or address my psychological needs, but I did need him for information which he gave freely and honestly.  There is a lot of good information online, too, so there is no need to go into this realm completely uninformed.  Perhaps I am a sheep, but I did exactly as I was told because I knew why I was being told what I was being told.  LOL!

Eventually, I did not have to enter the great dialysis industrial complex, but I DID enter the great transplant game which has its own challenges.  I never once encountered anyone who was not open to my questions (I always had a list) nor who did not happily give me information.  In fact, I was inundated with all sorts of books, pamphlets and binders. 

As far as being required to "show commitment" to dialysis, here is what they mean.  There are people who reckon that once they get their transplant, that's the end of that!  They are tempted to go into denial mode and so "forget" to take their meds or go for their monthly labs or show up for their transplant appointments.  So, if you can't be arsed to get yourself to dialysis and do what you need to do to keep yourself healthy, then a tx center will naturally wonder if you will have what it takes to maintain a new kidney.  Transplantation gave me a MUCH higher quality of life than I had dragging my pre-D corpse around, but it is not a life without a large dose of due diligence and responsibility.

No one is going to deny that ESRD represents a huge amount of profit for a small number of people.  It's all about the money, and we all know that the people who are being fleeced are, as usual, the most vulnerable.  That's the system we have, and the votes just do not seem to be there to change it.  But that's another discussion.

[cattlekid]

I completely agree with Moosemom's comments (howdy!  )

I had made the switch to home hemo when I decided to relist at University of Wisconsin and transfer my waiting time from Northwestern.  My psych appointment lasted all of five minutes.  I was told that since I had successfully navigated the world of home hemo for as long as I had at that point, they had no concerns about whether I could hack the world of transplant.  Now having to actually go through dialysis prior to transplant is complete BS in my opinion, but yeah, they want you to make sure you aren't going to screw it up from the get go.

As far as being required to "show commitment" to dialysis, here is what they mean.  There are people who reckon that once they get their transplant, that's the end of that!  They are tempted to go into denial mode and so "forget" to take their meds or go for their monthly labs or show up for their transplant appointments.  So, if you can't be arsed to get yourself to dialysis and do what you need to do to keep yourself healthy, then a tx center will naturally wonder if you will have what it takes to maintain a new kidney.  Transplantation gave me a MUCH higher quality of life than I had dragging my pre-D corpse around, but it is not a life without a large dose of due diligence and responsibility.

[PaulBC]

Welcome angroid! I like your perspective.

Plus, the basic technology/theory has not changed much in 50 years.

I'm not sure of specific numbers, but it does seem that progress in kidney disease proceeds at a glacial pace. Personally, I am counting on a major breakthrough in the next 20 years (which would be a lot more progress than the last 20). It may have less to do with nephrology than advances in stem cells, bioengineering, or solid organ transplant tolerance, but I would be nearly hopeless if I thought that current ESRD treatment was the end of the story.

So don't expect any rah-rah from me...if "being upbeat and having a good attitude makes all the difference" means a lot to you, you might not like what I have to say. To me that just too often means "shut up and
do what your told cheerfully".

Well, I noticed this site isn't called happykidneytalk.com, so you are probably safe.

I have a less than completely cynical view about the kidney industrial complex. I don't think there is vast conspiracy to preserve the status quo. There is merely a lack of any significant incentive to change it and really solve the problem from the patient's perspective. That alone isn't reason for optimism. In fact, given the lack of public awareness, I think that regenerative treatments for kidney disease are only likely to happen as a spinoff effect. So I guess if I have any cause for optimism, it is from a wave of overall medical advances in the foreseeable future rather than any focus on kidney disease.

Hmm... it is nearly 30 years since Paul Simon sung about "days of miracle and wonder... the boy in the bubble and the baby with the baboon heart." I also remember Barney Clark and the Jarvik 7 artificial heart. Baby Fae (with the baboon heart) was a victim of a xenotransplant that could never have worked. The artificial heart has not become a permanent treatment, but it is used as an assist device as I understand it.

Am I mistaken in thinking that David Vetter (boy in the bubble) could actually be treated today with a hematopoietic stem cell transplant that would have a decent chance to restore his immune system?

Sorry, just rambling, but you need something to hope for, right?

[Michael Murphy]

Welcome,  I too avoided the d word for years even though I got a 20 minute lecture from my nephrologist one a month for three years.  I wanted to see one symptom before I started,  one day in work I got very queasy at my desk and ralphed in the recycle bin,  I thought that was appropriate since they did away with garbage cans to save money.

[MooseMom]

Right back at ya, cattlekid!   

Here is my personal pet theory regarding progress in the field of renal replacement therapy.  Most people who are on dialysis are on Medicare regardless of their age.  Medicare is paid for by taxpayers.  Dialysis is expensive.  Dialysis is paid for by taxpayers.  The number of people who will require RRT can only increase since the general US population is getting older.  So, more demand for dialysis, paid for by taxpayers, is in the future.  THAT is the incentive to come up with a better treatment than dialysis.

A pharmaceutical company or a biotech company that can come up with a way to treat people without dialysis stands to make millions upon millions of buckage.  Incentive.

[angroid]

Thanks again for the kind welcomes.

As far as being required to "show commitment" to dialysis, here is what they mean.  There are people who reckon that once they get their transplant, that's the end of that!  They are tempted to go into denial mode and so "forget" to take their meds or go for their monthly labs or show up for their transplant appointments.  So, if you can't be arsed to get yourself to dialysis and do what you need to do to keep yourself healthy, then a tx center will naturally wonder if you will have what it takes to maintain a new kidney.  Transplantation gave me a MUCH higher quality of life than I had dragging my pre-D corpse around, but it is not a life without a large dose of due diligence and responsibility.

Hello Moosemom! Thanks for exactly citing their reasons to me, which, probably needless to say, I find ridiculous. It is like saying if you can live with a pet for 2 years, that proves you can live with a wife. . It seems to me just a method of control, and to rake in some more dialysis-inspired greenbacks. A relatively quick operation with good chance of success (@70-80%), or a lifetime of needles? Is the decision to do them both the same? In fact, I think a good lawyer with some medical background could even sue the transplant centers requiring this misguided prerequisite.

But about everything else you say, I am in agreement.

I'm not sure of specific numbers, but it does seem that progress in kidney disease proceeds at a glacial pace. Personally, I am counting on a major breakthrough in the next 20 years (which would be a lot more progress than the last 20). It may have less to do with nephrology than advances in stem cells, bioengineering, or solid organ transplant tolerance, but I would be nearly hopeless if I thought that current ESRD treatment was the end of the story.

Hi Paul...first of all, ramble anytime you want. Many truths I have discovered in such ramblings

Well, my hope is you get your wish, but better look to China   .  Thing is, they think this "works", which means they will be reluctant to change anything about it. Special interests, facilities, suppliers, they all like it the way it is, and they all have many people in academia, in the associations, and so on,
who continue to defend the status quo, in light of comparably very little real hard evidence. The whole alkali-acid business could be off the mark, and still we are no closer to recogniziong the real origins of the problems which lead to ESRD. Science gets in its comfort zones (paradigm, q.v.).

I have been reading about some new technologies, such as a dialyzer worn on the wrist like a watch, but not sure about its reality any time soon. A Japanese group is working on a portable device worn like a belt. But all of them still are trying to solve the problem using "clean it" technology, involving
the blood. Perhaps what should be researched right now is a way to get the dialyzer in and out of the system using the digestive tract itself...but what do I know lol.

Be happy to discuss anything anytime with you, pleasure to make your acquaintance.

I got a 20 minute lecture from my nephrologist one a month for three years.  I wanted to see one symptom before I started,  one day in work I got very queasy at my desk and ralphed in the recycle bin,  I thought that was appropriate since they did away with garbage cans to save money.

LOL Michael, I have been getting same lectures. It's funny, when i refused the catheter my doctor told me I could die before I even get the fistula, let alone the wait while it matured. He asked why I did not come in sooner, get medical attention for my PKD sooner. I told him I assumed the symptoms I was feeling were just consequences of aging. He looked at me as if I was crazy. So as the conversation continued he mentioned again the big BIG D word, and I said I think people can keel over and die of heart attacks, strokes, anything else, at any time. He shook his head and said "there is always a reason", for example the person had an underlying or undetected condition that caused his sudden heart attack or stroke. Right there, to me, said it all. By same logic, no one should ever die, to me, quite a preposterous belief, and quite the discrediting of a phenomena with a thousands-of-years history, and daily confirmation of its truth.

[Michael Murphy]

The one concession I made three years before I started dialysis was I had my fistula installed and I am very glad I did,  dialysis is easier and safer with a mature fistula. While I was avoiding starting dialysis my fistula was maturing.  I don't know why I was smart enough to do it  but it really made my life easier.  Don't get me wrong avoid dialysis as long as you can but honestly my fear was much worse than the reality.  Dialysis is about 18 hours a week total set up treatment and holding time.  That still leaves 150 hours a week for a life.  I worked for 43 years as a System administrator and now that I am retired I want to enjoy my retirement.  And on dialysis every day I wake up and take a breath costs AT&T money. 

[Rerun]

If you cannot say anything nice... sit by me!  Yippee!  You found your home.  I cannot, I repeat.. cannot wait until you see what they charge!  Oh, Glory Bee!   

Lots on here to read.  I love a fighter!  You will last a long time.  It is your right to ask questions. 

Welcome - Rerun, Admin.     

[angroid]

I was so surprised that nephrologists did not seem interested in the cause of my CKD. Everyone seemed to go into a bucket and take their place on the dialysis conveyor belt unless they were rescued by a living donor before that happened. Without lab reports in front of them nephrologists--as well as PCPs in my experience--seem to be lost. Very important to have people who question the system. Welcome!

Hey Soo, thanks a lot, ask me anything anytime. Let's be clear and honest about it from their point of view. It has to suck to be them in many ways, knowing as they do the limitations and speculative nature of their own expertise. After a while their job is like any other job, come in, turn the lights on, have a coffee, chat it up, and back to the animal maintenance. Where I fault them is their lack, as a whole, of any real commitment to improving what they do. Show me what you do, and in short time I will be looking for better/more efficient way of doing it. This spirit seems to be lost, and to me, they are as a whole scientifically parrots, and drones for the status quo. Notice how a doctor present at all times is NOT a requirement for a dialysis center, a most definite health risk, but better for the bottom line.

[angroid]

If you cannot say anything nice... sit by me!  Yippee!   

Welcome - Rerun, Admin.     

A song for you!
 

[KarenInWA]

My neph wanted to put me on dialysis when I hit GFR of 13 and I refused because I felt fine. However, this did not last long because my GFR went down to 8 the following month, then 6 a few days later. I remember at that time I felt like crap, and looked like crap to boot. I did not have much fluid removed in the beginning because I still peed a good deal. I also did not suffer too terribly with cramps or BP crashes. My Rx was for 4 hours 3x/week and I was okay with that. Being that I was a member here for a while, I already knew that more dialysis was better, not less, to more mimic real kidneys. As for declining kidney function to be a natural part of aging, I do agree that that is true, but I was 37 at the time my kidneys kicked the bucket. If that's aging, then I was doing it too well. I never believed I was just a cog in someone's money making scheme. Then again, I was a patient at a non-profit dialysis center and my neph is an old guy who isn't heavily into material things. I've been transplanted for over 3 years now, with low kidney function, and that is due to permanent injury by biopsy. Thankfully, I am stable and feeling good.

KarenInWA

[angroid]

Hi Karen,

I appreciate you sharing your experiences. Our progressions are not dissimilar.

My neph wanted to put me on dialysis when I hit GFR of 13 and I refused because I felt fine....As for declining kidney function to be a natural part of aging, I do agree that that is true, but I was 37 at the time my kidneys kicked the bucket. If that's aging, then I was doing it too well. I never believed I was just a cog in someone's money making scheme. Then again, I was a patient at a non-profit dialysis center and my neph is an old guy who isn't heavily into material things. I've been transplanted for over 3 years now, with low kidney function, and that is due to permanent injury by biopsy. Thankfully, I am stable and feeling good.

I think for me it was 15. Mine also fell at a steady pace and then accelerated quickly. In the back of my head I still blame the meds for the acceleration, but I know that's (likely) denial. I will not deny (LOL) I have denied this PKD for a long time
As for the rest, don't take me the wrong way. What I said was I told my doctor I assumed MY problems were just bodily changes due to aging (and also high blood pressure). To elaborate that, being then at about GFR 5, when my blood pressure pills were changed, and I started taking the binder (pre-D), I really felt as good as I had felt the past 5 years. No more headaches since bp pill change. Chills, crazy sleep patterns, spastic cramps in hands and feet/legs, being seemingly unable to eat anything without feeling nauseous, bloated, or with terrible indigestion/heartburn...these symptoms have been the same, before and after dialysis.

As for being a cog in a money-making scheme, again, don't take me wrong, but like it or not, you are. We both know, though, that few people actually pay for it, most getting Medicare or something. But find out exactly how much money has gone into "research and development", both in nephrology and in the pharmaceutical companies, and you will see that for all that they haven't progressed much given those research dollars (same overseas). And, I argue, this is much because there are many interests that would like to see these dialysis mills continue as they are, the technology remain the same, because it's adequate and turns a mighty profit. The pills given to me as binder cost 100 times what the powder inside actually costs, and which I can buy that way. But when Uncle Sam is footing the bill - well, who's to argue, right?

I am so happy you are stable and have found a suitable kidney. If I pass the exam I will likely go that route (and get these 11 and 13 inch faulty SOBs out of me).

angroid

[MooseMom]

I wanted to skip dialysis and go that route from beginning (I had donors). I was told they would not approve me (Emory Hospital)
unless I first "showed commitment" to dialysis! 

Could you explain this a bit more to us?  I find it stunning that you had multiple donors ready and waiting to donate to you yet Emory refused to transplant you because they wanted you to spend time on dialysis first.  I don't think I've ever heard of such a thing.  I'd love to know more!  Thanks!

[angroid]

Hi Moosemom, just like I said. I will try more detail.

I said OK, let's go straight to the transplant then. Doctor says it will not look good on my application.
Doctor says almost everyone (everyone he knows of) has had to first spend time on dialysis.
I asked him, other than sure income, what benefit could there possibly be for making people ready
for a transplant have to first do dialysis.
He kind of sighed a bit in having to tell me that it is because "they" (meaning Emory transplant team)
want to "see I am committed" to doing what it takes post-transplant, meaning, take the pills as I should.
Then I got a story about one guy who, the doc told me, felt so good after his transplant that he just
quit taking his meds, and, well you know, he died.

As if one stupid guy sets the pattern for what they think of us all en masse.

I think it has something to do with monetary circles (surprise surprise lol). I had Blue Cross Blue Shield
before the government acknowledged my ESRD, now I have Social Security, and soon, they tell me,
Medicare. The insurance companies don't want to pay a quarter million bucks if they don't have to. So
ESRD designation gets private insurance off the hook and sends the bill to Medicare, where charges
for services and materials could be double or more compared to what an insurance adjuster would pay.
Plus, you get that Chair business. Whereas once they were hard to find, now there is a clinic with multiple
empty chairs in nearly every town I've seen, and behind them are the machine makers and entrepeneurs/
medical doctors looking for new towns, like once Neapolitan men did looking for a place for their pizza shops.

Now, I say I think there is a lawsuit there, but what I think is that "probably" this "rule" is unwritten. Sort of
a protocol, and so in court they could just deny it is the case, although I bet they would have a difficult time
coming up with a list of people who had said transplant without first being directed to dialysis.

I bet you can, however, find more who have had their own donor and paid out of their own pocket.

angroid

[MooseMom]

Oh man, angroid, that's a terrible story.  Mine is completely different, so I am baffled by Emory's "protocol".

I have BCBS through my husband's employer.  My neph did everything he could to keep me off dialysis, and the moment my egfr went below 20, he referred me to a tx hospital here in Chicago.  I was on the list for 2 years when my neph decided I should list at a second center, and he arranged a referral (and it was for an out of state center).

I was fortunate enough to get a pre-emptive cadaveric transplant.  Not once did ANYONE hint that I should be on dialysis first in order to "prove myself" or some such nonsense.  I've just never heard of such a thing.  I'd always thought that Emory was a first-class center, but your story puts a different light on them.

Then again, your story makes me wonder more about your doctor than about Emory.  I can't believe he told you that "almost everyone" has had to spend time on dialysis first.  What BS.  He's either ignorant or a liar.

[PaulBC]

As if one stupid guy sets the pattern for what they think of us all en masse.

Not to sound insensitive, but it's not "one stupid guy". There is a large literature on the subject of noncompliance (search on keywords transplant noncompliance for example). It's a real issue, and I'd be more shocked at a transplant team that went ahead without any thought to it.

That doesn't mean I agree on dialysis as purgatory, which strikes me as a very primitive and ineffective tool. In practice, those waiting for deceased donor organs are likely to wind up on dialysis while waiting anyway. I do think that it is both medically and ethically sound to give preference to those who are committed to keeping their transplant functioning. The goal is to get the most benefit from a limited resource.

If you have a live donor lined up already, I admit it's a different situation. There are still ethical issues connected to putting even an in informed and enthusiastic donor at risk. Your doctor may not be making the right call in your case. I don't have enough information to begin to guess.

[MooseMom]

PaulBC is correct in saying that "noncompliance" is a very big problem in the management of post-tx patients.  "Noncompliance" means more than just not being bothered to take the meds at all, rather, it also means taking them incorrectly, at the wrong time, with the wrong combination of vitamins and/or supplements, and the list goes on. 

[angroid]

Moosemom and Paul,

I don't like the "noncompliance" excuse either. Hey, if I break my leg do they first make me wear a fake leg before they set the old one?
And should whether I am "good" to that leg or not be a factor in determining my fitness for the repaired leg? Should I be tested first
and make sure I will take my antibiotics?

It's inane to me really, whether it's one non-complier or 50% of all transplants. What another does is not what I do.

Moosemom, looks like you got good care. It's not the norm around here. I pushed the question to the PD guy and later to one of the
other doctors and got same response. They tell me it comes from understanding how Emory chooses its kidney transplant recipients.

Like I said, I don't see how it can be a real rule, but I can see why it has been made protocol. 

angroid

[KarenInWA]

I do have to say, I question any dr who says that "one" patient stopped taking their meds and died as a result. First of all, if this is a kidney transplant patient, death is more common as a *result* of taking the meds, because they suppress the immune system and open up the possibility of nasty infections and/or cancer - both can cause death, especially if ignored. Secondly, if a KIDNEY transplant patient stops taking their meds, then the worst that can happen is they end up on dialysis. Now granted, if this same patient ignored kidney rejection/failure like they may ignore an infection or cancer, then yes, maybe death would be imminent then. With any other organ transplant, yes, death would be the end result of organ rejection as a result of not taking meds.

As for compliance, your analogy to a broken leg is like comparing apples to oranges regarding compliancy. Reality is - kidneys from deceased donors are a rare commodity, and kidneys from live donors are precious as well. It is not fair to any living donor if you choose to not be compliant with your meds or treatment, and it is not fair to the others on the list who could have gotten your deceased donor kidney if you do the same with that. That is why transplant centers are so anal with compliancy - they NEED to be. In your leg analogy, you are repairing your OWN leg, not getting one from a donor - alive or deceased. The only one who suffers in that equation is you. With a living donor, there is risk to them under going medically unnecessary surgery - and that risk may not show until years later.

KarenInWA