My Nephrologist just feels like an undertaker

[Athena]

Well, I am a physician and I never have thought of nephrologist's as an undertaker. In reality, far too many are execututioners promoting death by iatrogenic complications that are known euphemistically as usual or expected outcomes. 

Fortunately, I run the Laird dialysis unit where I Can avoid iatrogenic complications, well that is until NxStage decided to poison me with aluminum that is. The executioners are all around us. CMS is the undertaker keeping statistics upon the executioners work.

Dear Peter, I am so grateful for your post. It's wonderful to hear from a physician who's also dealing with kidney disease. In my medically lay mind, I have often thought that a medical adverse reaction (iatrogenic complication) or medical mistake in a hospital is more likely to kill me than the natural outcome of the disease itself! I have seen enough of hospitals to know that there are very stressed, rushed people in them having to cope with a lot. I am lucky to have survived an emergency dept turning me away when I had severely low serum sodium levels only 3 months ago. I returned the next day with even lower blood sodium levels & they realised their error. Luckily I did not suffer a seizure or heart attack. Not everyone gets to be so lucky.

I have followed the post about the aluminium problem with Nxstage with interest and wish I could offer you some advice. The only advice I can give is the one I give to myself - which is to not take it silently. Profits do come before patient safety and welfare, unfortunately. I wish we were more vocal in kidney advocacy. Individually, we're toast but collectively we can make some difference to the way this disease is treated and researched 

[Athena]

Athena, I just want to make sure I haven't misunderstood or missed something here.

How close are you to ESRD?  Are your nephs already discussing D/tx in such a manner that you all KNOW that this is just around the corner? 

I understand that you are resistant to an insulin pump, but if this is what it takes to better manage your diabetes, doesn't it make sense to attach yourself to a pump rather than having to later attach yourself to a dialysis machine?  Wouldn't better management of your diabetes NOW mean that your chances of avoiding dialysis that much better?

I don't know that much about T1, so I apologize for my ignorance!

MM, i don't believe that I am close to ESRD as my eGFR is about 28 (hoping to get back in the 30s). My primary care Neph said that he wants to organise a pre-emptive transplant when I get to around eGFR 20. So I guess that means they want to start getting busy with this very soon. I don't even know whether a pre-emptive transplant is what I truly want.

From what I gather, isn't a transplant the 'light at the end of the tunnel'? Don't most people who are waiting for end-stage dream of getting a Tx? I'm so confused 

[MooseMom]

I went on the bags last July and the levels fell to less than 5 UNTIL this month. It seems that they are now using the same sodium lactate supplier for the bags and the SAKs.mI will see in a couple of weeks where we are at, but my suspician is it will keep going up for the next two months. If that is brought to pass, I will be done with NxStage as a daily use. I frequent trips might be a consideration, but I am having some serious trust issues with them.

I find it incredible that they continue to deliberate poison their patients with low levels of aluminum for the sake of more profits. Makes no sense.mand if and when I go, I Will not go silently.

I am shocked and hurt to hear this.  We all loved the idea and purpose of NxStage.  The idea that this company has lost your complete trust is profoundly troubling.

[MooseMom]

My fundamental position is that Nephrology needs a good massive kick up the backside for not doing enough for kidney patients! I believe there is a horrible resignation and complacency in this field that absolutely staggers belief. Whatever renal research there is, is geared towards helping those who have already reached ESRD (when it is too late) and even that is just pitiful. I am convinced that if there were an ample supply of good medical minds who really wanted to find a CKD cure they would. Apathy is what is really killing us.

I can't disagree, but "CKD" is an umbrella term because many things can cause "CKD".  You have it as a result of T1 diabetes.  I have it because of fsgs, an entirely different condition.  CKD may be the end result, but the paths to it are various.

My neph and I worked tirelessly to keep me off dialysis.  When I first met my neph, he said that he "didn't have much hope for those kidneys" and referred me to a tx clinic right away.  Well, with the right combination of meds and diet, I was able to stay "in remission" for about 8 years, which defied all expections.  He was determined to keep me off dialysis, and I ended up with a pre-emptive tx.  For me, that was the light at the end of my particular tunnel.  The idea of dialysis horrified me (my mother spent 5 years on it), so I never had any doubt in my own little mind about tx.  That was my goal, no question.

[PaulBC]

My fundamental position is that Nephrology needs a good massive kick up the backside for not doing enough for kidney patients! I believe there is a horrible resignation and complacency in this field that absolutely staggers belief. Whatever renal research there is, is geared towards helping those who have already reached ESRD (when it is too late) and even that is just pitiful. I am convinced that if there were an ample supply of good medical minds who really wanted to find a CKD cure they would. Apathy is what is really killing us.

I completely agree with all of the above, and I hope my previous reply didn't suggest otherwise.

One big problem with kidney disease is the popular misconception that dialysis and transplant are effective treatments, when they're only stopgaps that cause all kind of other problems. I can speak from experience that this came as news to me. I knew about as much as most people know about kidneys, and only fully grasped the situation when faced with it personally.

The other is that you're certainly right that the most promising medical students aren't very likely to specialize in nephrology. And assuming one of the best medical minds does go into nephrology, they're going to be a lot more interested in improving renal replacement for ESRD than in helping people preserve existing kidney function. So, yes, apathy is the big enemy, but I don't have any great ideas of what to do about it. Maybe someone else here does.

From what I gather, isn't a transplant the 'light at the end of the tunnel'? Don't most people who are waiting for end-stage dream of getting a Tx?

Also want to add that many kidney patients are at best ambivalent about transplants. There are studies (I have to look them up again) that show many dialysis patients will turn down offers of live donors because they feel guilty about imposing a burden on others. There are probably other reasons as well. The complications of immune suppression are also major reasons for ambivalence.

[Athena]

Moosemum, I am very curious about what all the medications and dietary changes you were given that lead to such great results in your FSGS. I know there are many different types of kidney disease, each with their own pathway towards internal destruction. I have read up a little on your condition, it is a bit similar in terms of fibrosis setting in. I am just curious about how yours was treated.

[Athena]

"One big problem with kidney disease is the popular misconception that dialysis and transplant are effective treatments, when they're only stopgaps that cause all kind of other problems. I can speak from experience that this came as news to me. I knew about as much as most people know about kidneys, and only fully grasped the situation when faced with it personally"

Paul, you've hit the nail on the head and summarised the situation with crystal clear clarity. That is why there is NO research - the public are not even aware of the problem! Nephrologists keep informing me that CKD is much more common than what people realise ... That's a lot of people who may be destined to end up on dialysis in the future. But ignorance, apathy and inertia is what hinders us from finding new & better treatments. The other issue is that it's regarded primarily seen as an old persons disease. And we all know what should be allowed to happen to the elderly - they should just die in peace. Those of us who are still young and who need to be productive, are just sacrificed on the altar of apathy. It's the nephrologists who I mainly blame for this appalling lack.

[Deanne]

I'm not MooseMom, but I was also diagnosed with FSGS, in 1972. I reached ESRD in 2013. I think many times genetics makes the difference. I was 9 years old when diagnosed and I grew up without dietary restrictions. I was encouraged to eat large amounts of protein to replace what was lost in my urine. The salt shaker was always on the table, and I ate ibuprofen like candy on a doctor's advice to treat endometriosis. I was also told not to exert myself. Fitness and exercise weren't encouraged. Yet I was fine while others with the same diagnosis reached ESRD in just a few short years, even though they lived a kidney friendly lifestyle.

Your attitude will take you a long way. I can see from your postings that you're a take-no-prisoners fighter. You're a survivor and you're going to do great!

[MooseMom]

Moosemum, I am very curious about what all the medications and dietary changes you were given that lead to such great results in your FSGS. I know there are many different types of kidney disease, each with their own pathway towards internal destruction. I have read up a little on your condition, it is a bit similar in terms of fibrosis setting in. I am just curious about how yours was treated.

Athena, I was diagnosed with fsgs in Jan 1992 while I was living in the UK.  The previous July, I had given birth by C-section; I had been confined to the hospital for 4 weeks prior to that with pre-eclampsia.  I had been told that my kidneys were about to go, so C-section it was.  Everyone thought that all would go back to normal, but at my next post natal check up, I was still spilling a lot of protein.  In Jan I had a biopsy, and fsgs was the diagnosis.

Back then, no one knew much about it.  I was told that I'd eventually I'd develop hypertension.  I did about 2 or 3 years later, and that was treated with various meds.  No one told me anything about the other complications of CKD like high blood lipids, etc.  I was never given any dietary advice.

I went back for regular checkups with my GP, and since my bp was well controlled, there wasn't much more I was told to do.

Turns out my son was diagnosed as being on the autistic spectrum, so any thoughts about my kidneys went out of my head.

Fast forward to 2003.  I moved back to the US, remarried and had a physical exam for insurance purposes in 2004.  My results astounded everyone and I was immediately referred to the nephrologist within the practice.  I was still on bp meds and those remained unchanged.  I was started on pravastatin, Tricor and Zocor to control my high blood lipids.  Those meds worked immediately, and I've since never had any more trouble with that particular problem.

What happens in fsgs is that for some mysterious reason, the glomeruli become inflamed.  They heal, but the healing results in scar tissue.  The glomeruli gradually scar over, and the patient is left with less and less normal tissue until there is so much scar tissue that the patient cannot live without dialysis/transplant.

So, the idea is to slow down the scarring process as much as possible.  It is my understanding that there are two paths to this end.  Some nephs treat their fsgs patients with steroids (prednisone), which makes sense as prednisone is an anti-inflammatory.

However, pred is a powerful drug with many side effects, so other nephs treat their fsgs patients with cyclosporine in the belief that suppressing the immune system will result in a slowing down of the sclerotic process.  Of course, cyclosporine has side effects, too.  This is where medicine becomes an art.  Each neph decides which mode of treatment they prefer.

In summary, treating CKD is a two pronged process, depending upon the underlying disease.  I can only speak for fsgs.  On the one hand, a neph needs to control the side effects of CKD, mainly high blood lipids, hypertension and, as renal function declines, hyperkalemia (too much potassium in the blood) and too much phosphorus in the blood.  On the other hand, a neph tries to treat the underlying disease itself.

So, to control blood lipids, I took statins to control high blood lipids.

I took three different meds for hypertension, each working in a different way, all in concert.

I took sodium bicarbonate tables to control potassium.

I ended up having to take phosphorus binders for about a year before I got a transplant to control phosphorus.

I never needed treatment for anemia.

I took cyclosporine to put me "in remission".  I had always been told that there would be a time when the cyclosporine would cease to be protective and would become toxic, and I reached that point once my egfr dipped below 20.

From 2004 to 2012 when I was transplanted, I had 8 pretty healthy years during which my neph and I did everything we could to delay the onset of Stage 5.  I think we did a damn good job.

Oh, and I strictly followed the pre-renal diet.  I was very hard on myself.  If there was a food that I knew was not good for me, I was not tempted by it. 

Like Deanne said, some of with fsgs can eke out many good years before having to think about dialysis, while there are many others who seem to succumb very quickly.

There is a LOT of research into kidney disease despite what you might believe.  The problem is that the vast majority of CKD (at least here in the US) is caused by hypertension and type 2 diabetes, conditions that many people have without realizing it. 

It would be much easier to prevent CKD than to cure it.  If more people went to a doctor for regular checkups, CKD would be identified more quickly and could me better managed.  Manageable CKD doesn't have to slide downward to ESRD in all cases.

In your case, a better idea than curing CKD would be to cure diabetes.  THAT's where the research efforts should go.

I hope this long, dull post has given you some answers.  If you have any other questions, please don't hesitate to ask.  I can't speak to everyone's experience, but maybe telling my own might help you.

Keep posting, learning and asking!

[justagirl2325]

I've read a bit about dialysis patients not wanting kidney transplants.  My husband was diagnosed T1 at 10 years old and has been T1 for 33 years, on his third insulin pump (he was one of the first few in Canada to get one) and he would never give it up and on hemodialysis for 9 months now.  He absolutely hates dialysis. Hated it most at first because he hates the hospital, hates it now because he doesn't feel as good as he thought he would.  He was not interested in live kidney transplant at all (from me or his children) as he wouldn't put any of us at risk to help him (his words not mine).  However, the tx team wants to put him on the list for kidney/pancreas.  The thought of being off dialysis and "cured" of diabetes has really got him motivated.  Could be 3-5 years though.

[Hemodoc]

Transplant was not my choice. The transplant meds still scare the willies,out of me for several reasons. It is not a cure. But instead it is another treatment option. Many do well with transplant, some fair worse.

It is an individual choice in the end. Having had two prior cancers, both early and cured surgically, I,am just,not willing to take on that risk at this time. I also understand all too well the complications of immunosuppressives.

My team initially forced me into transplant evaluation and I had my colonoscopy and cystoscope, than you very much for that wonderful experience, in,preparation. However, I,asked for a dermatology consult due to my extensive sun exposure as teen on Cape Cod. That is when they found an ally melanoma. That was also the last of them Forcing me and my wife down a path I,was not comfortable with at all deep down.

Lastly,,the more I learned about renal,donation, the more adament I was not to look for or accept a kidney for anyone in my family. There are very real dangers associated with donation including 1/3000 risk of death. There is also a risk of ESRD later in life for the donor as well. Sadly, these issues are completely glossed over by the media and the transplant teams Iin Many ways.

The bottom line with any medical procedure is to know and understand as best you. Can the risks, benefits and alternatives for any given choice. You must also feel,comfortable,with the risk of complications because,they do happen. If you cannot accept that risk. Then perhaps, you should not proceed with that procedure.

For,instance,mImhad radiation therapy while in medical,school which places me at increased risk for a vascular necrosis of my hips. Essentially, losing the blood supply. That is also,one of the potential complications for transplant from the high dose steroids at induction of immunosuppression. Combining thoses risks together seemed prohibitive to me given how much I hate being cut on. I just don't want to walk down that path at all.

So, learn all that you ca. And make your choices carefully and be willing to accept whatever path it will take you. These are not at all risk free choices. In my case, I feel most comfortable with daily dialysis, well 5 days a week at present and likely 4 days a week if I,go to the Baby K.

[Athena]

Dear Peter
Because I strive at all times to educate myself with what I am dealing with, the downside of doing this is that things are always FAR WORSE than they might appear to the more blissfully ignorant! I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.

There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.

I have always been an independent person and my personal happiness has always been based on what I can do myself and not relying too much on others. The prospect of being very sick and relying on hospital/doctor/social welfare type of support fills me with unbearable dread. Other people my age are in the their prime of life n the workforce, whereas I am already someone who's just fallen by the wayside.  I still have a reasonable amount of good health to sustain me but when/if that goes, there will no hope.

Best to make as much noise as I can for worthy causes like more kidney cure medical research while I still have my health. As for the final solution, I think I will tell both my guys that I just want a good painless euthanasia option when the time is right. They can stick their renal replacement final solutions where the sun doesn't shine, if that's the best they can offer.

I'm angry not simply because I have no future but because I am now living in unbearable fear and depression about the future. My enjoyment of life has been snatched away. I now regard myself as having an unacknowledged terminal disease that is simply being ignored.

Perhaps I can find some enjoyment in fiercely advocating for better research & treatment. That does fill me with considerable purpose. I may get to meet quite a few interesting politicians before I'm done. At least if I had cancer, I'd find a lot more support for the cause of better research for a cure. With CKD, it will be an uphill battle to just get recognition that a cure needs to be found while everyone is still only focused on finding better dialysis machines.

Once again, I'm sorry if my post may be upsetting or depressing to anyone. It is not my intention to upset any kidney disease sufferer. I think anyone living with ESRD is as heroic and admirable in human spirit as you can find on the face of the earth. I wish I had the same endurance & fighting spirit as the rest of us guys.

[PaulBC]

I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.

There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.

I'm not offended, but I think it's only a false hope if it's presented as one. For many people, transplant can be the best of several bad options. Yes, it's living on borrowed time--actually on time purchased at a high price. The question, like anything else, is how much do you want that time and what are you willing to go through to get it?

Also, as much as I don't want to come off as Pollyanna, I make it a point of rejoicing in the fact that my daughter is alive right now and seems like her old self for the most part. When my parents were kids, this would have been a death-bed story with the parish priest playing a larger role than the doctor and only grief and memorabilia to show for it all. When I was a kid (in the 70s) I guess I might have squeaked by (actually, it would have overwhelmed my family dealing with other medical issues simultaneously). Today, it's still a terrible situation, and (speaking of research) I'm not sure it's even that much better than 20 years ago, but we are coping, and I feel that I am carrying out the most important work I have in my life.

I will beg, borrow, or steal whatever time I can for my daughter. I'll cheat the reaper if I can. It occurred to me that if there is an undertaker for kidneys, maybe there should be a mythical kidney reaper as well, a bit shorter and a little less grim. Let the greater Death wonder why the kidneys have been reaped, but he has not yet been called. It's kind of hilarious in a way--Death waiting like the Maytag repairman.

Research is much slower than it ought to be, but I think that 20 years could be enough to get something real in place (but again, what really happened in the last 20). So a transplant may not be a cause to rejoice, but I think it can be a calculated risk. I totally agree with any adult who forgoes one for themselves, but I do not see a reasonable alternative.

[edited to fix a typo]

[MooseMom]

I agree wholeheartedly with PaulBC that transplant is "only a false hope if it is presented as one."  At no time did anyone on my team suggest that a transplant would be a "cure".  In fact, I was reminded over and over and over again that tx is a treatment, perhaps a better treatment FOR ME than dialysis, and I was well versed in the possible side effects of the meds.  We are all living on borrowed time.

Whether or not a patient feels comfortable with having a living donor is a very personal question.  Renal failure affects the entire family.  One may shudder at the thought of an adult child wanting to donate to a parent, but that adult child may not be able to live with him/herself knowing that s/he can save his/her parent's life yet does nothing.  That parent may have other children and a spouse too look after.  So these are personal choices, and we are in no position to judge.

But having a living donor is pretty rare in the grand scheme of things.  Most people are transplanted with a cadaveric organ that has been offered by a grieving family.  I KNOW that my donor's family felt comfort in knowing that their deceased loved one saved the lives of 5 people. 

I rejoice in having received a transplant every single time the sun rises in the east.  You bet there can be complications from the meds, but OMG there are complications from dialysis, too.  I saw them in my mother in the five years she was on D.  My cousin almost died from peritonitis while he was on PD.  We are confronted with a hideous disease and have choices to make. 

While I am not offended by your strong opinions about transplantation, I do confess to being baffled.  I can't agree that transplantation is a "hoax".  For me, transplantation was indeed the Holy Grail, even if it is somewhat tarnished and pitted and imperfect.  No one is forced into this type of treatment.

I understand your anger, rage coming from a feeling that your future has been taken away and that your joy in life has been snatched from you.  I felt those exact same things.  I spent thousands of dollars seeking emotional and psychological help.  I spent a lot of time and energy constructing every coping mechanism I could find.  I educated myself about my disease and dialysis, and while this was a good thing in theory, I discovered that the more I learned, the more frightened I became.  More knowledge served to overwhelm me.

For me personally, the only thing that finally gave me peace was receiving a new kidney.  I have done well, and I am coping just fine with the meds.  I have no underlying health issues (like Hemodoc and his history of cancer), so tx has given me my life back.  I am perfectly well aware of the possibility that this kidney may one day fail or that the meds may cause cancer or something else, but the spectre of dialysis has been taken away for the time being, so I am going to enjoy every day of peace that I have been granted.  Transplantation has given me hope; I understand all too well the feeling of hopelessness that you've described.

Like you, I shuddered at the thought of having to rely on anyone; I'm as independent as the next person.  I did not believe that dialysis would allow me to maintain my independence.  I did not like the idea of having my disease impact anyone, so even though I planned to do NxStage and dialyze at home, I was never naïve enough to believe that this would not impact my husband in any measureable way.  So, tx has allowed me to remain independent.  There are people here on IHD who don't think twice about having an adventurous life while on dialysis.  Their exploits have been documented on this forum.  But I don't think I'm one of those people.  But then again, maybe I could be.  I didn't want to find out.

I'm living with ESRD but I don't think of myself as heroic.  Don't put us on a pedestal.  Everyone has a cross to bear.

I'll be the first to agree that transplant is definitely not for everyone.  But that doesn't mean it is for no one!

Finally, please don't worry about offending or upsetting anyone on this forum.  We strongly encourage people to express their deepest fears and joys.  This is a safe place.  There is nothing you have posted that at least one of us has not experienced, too.

[Athena]

I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.

There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.

I'm not offended, but I think it's only a false hope if it's presented as one. For many people, transplant can be the best of several bad options. Yes, it's living on borrowed time--actually on time purchased at a high price. The question, like anything else, is how much do you want that time and what are you willing to go through to get it?

Also, as much as I don't want to come off as Pollyanna, I make it a point of rejoicing in the fact that my daughter is alive right now and seems like her old self for the most part. When my parents were kids, this would have been a death-bed story with the parish priest playing a larger role than the doctor and only grief and memorabilia to show for it all. When I was a kid (in the 70s) I guess I might have squeaked by (actually, it would have overwhelmed my family dealing with other medical issues simultaneously). Today, it's still a terrible situation, and (speaking of research) I'm not sure it's even that much better than 20 years ago, but we are coping, and I feel that I am carrying out the most important work I have in my life.

I will beg, borrow, or steal whatever time I can for my daughter. I'll cheat the reaper if I can. It occurred to me that if there is an undertaker for kidneys, maybe there should be a mythical kidney reaper as well, a bit shorter and a little less grim. Let the greater Death wonder why the kidneys have been reaped, but he has not yet been called. It's kind of hilarious in a way--Death waiting like the Maytag repairman.

Research is much slower than it ought to be, but I think that 20 years could be enough to get something real in place (but again, what really happened in the last 20). So a transplant may not be a cause to rejoice, but I think it can be a calculated risk. I totally agree with any adult who forgoes one for themselves, but I do not see a reasonable alternative.

[edited to fix a typo]

Paul,  I must confess that all my previous posts were rants that were only focused on my existential angst with this disease. I haven't once considered what it must be like for a child or a parent of a child with renal impairment. It's terrible to know that children can also be afflicted. I do know of a young man in the community that I am part of who has recently donated his kidney to his son, who was born with serious kidney impairment. It's a very heart wrenching case. The boy is not yet even 4. He was not doing well on D and wasn't going to thrive, so a Tx was the best that medicine had to offer. It was quite a complex long operation. One can only pray sometimes. 

If I had normal kidneys and a child I loved was suffering from renal end-stage, I could see myself doing the same quite frankly. No sacrifice is too great for a child, and this is coming from an adoring Aunt (I'm becoming a bit misty eyed). I am so happy to hear that your daughter is doing so well on dialysis. How old is she and how did she develop kidney issues, if you don't mind me asking?

But I have to say the subject of children only fuels my deep-seated anger at the medical profession. I know there is a lot of renal research that is being done, and in concert with other fields of medical research that is having a synergistic effect on kidney understanding. But it's all too little, too late for many of us. They needed to have been be far more productive over the last 20 years for them to have some better solutions for us today.

Having and maintaining hope can be exhausting at times but not having any hope is even more exhausting and debilitating. I am currently investigating a new clinical trial over here where I am, I will post about it in another thread soon. (This could be my very own Tyrell Corporation!   ).

[Deanne]

I'm excited to hear about your clinical trial!

[PaulBC]

Paul,  I must confess that all my previous posts were rants that were only focused on my existential angst with this disease. I haven't once considered what it must be like for a child or a parent of a child with renal impairment.

It's OK. We all come at this from different perspectives, and yours is certainly a valid one. Frankly, if your only options turn out to be dialysis or a transplant, I would hope you would change your mind about those treatments, but I'll leave it at that.

I sometimes feel unworthy to be here, posting up a storm, when I have my health and can view dialysis as an abstraction. Life with my daughter on PD is actually very normal right now, just a lot of extra work.

Knock on wood. Of course it can't go on like this indefinitely.

I am so happy to hear that your daughter is doing so well on dialysis. How old is she and how did she develop kidney issues, if you don't mind me asking?

She is 9 (8 when it happened last Fall). Her condition is C3 glomerulonephritis, but this is more of a description than an explanation. It came on very suddenly. She has always been active, used to swim 3-4 days a week with a team, and in fact had been swimming laps 5 days before we had to take her to the hospital. Progression was: (1) feeling a little under the weather (2) still tired, why isn't it going away? (3) why is she so heavy? (edema) (4) See the pediatrician, no obvious explanation, but a urine test... then a blood test... then a phone call to get her to the ER right away (potassium through the roof along with every other sign of kidney failure).

Still no actual reason for any of this. No family history, nothing in genetic tests, just a complete mystery.

But I have to say the subject of children only fuels my deep-seated anger at the medical profession. I know there is a lot of renal research that is being done, and in concert with other fields of medical research that is having a synergistic effect on kidney understanding. But it's all too little, too late for many of us. They needed to have been be far more productive over the last 20 years for them to have some better solutions for us today.

You have every right to be angry. It would be a lie to say that the medical research community has done as much as they can for kidney disease, or even that they have done a small fraction of what they should have done. Medical research helps people, but it is driven by the same trends as any other field. As far as I can tell, kidney disease is "unfashionable" in the research sense. For a really brilliant, driven researcher to get into it, they would either have to feel like they're on a mission (e.g. if they have had a personal brush with it) or just find kidneys fascinating in their own right (which they certainly are) to the point that they are more interested in doing this work than in getting the most recognition. I'm sure that there are some people in both camps, but it isn't the kind of critical mass you would need.

[MooseMom]

PaulBC, you have every right and reason to be here.

[kristina]

PaulBC, you have every right and reason to be here.

Hello Paul I agree wholeheartedly with MooseMom's thoughts !
It is wonderful how well you inform yourself to assist your daughter ...
... She is a very lucky girl to be surrounded by such a caring family
and I do wish you and your family all the best.
Best wishes and good luck from Kristina.

[PaulBC]

Thanks for the support! I think this is a great group, but I also want to make sure I don't come off as too glib about things that I do not experience first hand. After the initial panic about my daughter's condition, my engineering instincts kind of kicked in, and I see this as a big, long term problem, hopefully solvable one day. I would probably feel very differently if I were the one who had to go through with this, and I try to keep that in mind.

[Athena]

Paul, I just want to echo what Moosemum & Kristina have said. You certainly belong here. I have already enjoyed the many posts you have made, even though I have not been a member for long. Can I just add, that where diabetes sites are concerned, parents of T1 kids certainly don't make apologies for contributing on Type 1 forums. They care for kids with the condition and therefore belong. Likewise, as a parent of a child on D, you certainly belong here. Like you, I too wish that one day this problem will be solvable (or salvageable). Our prayers are the same.

[Athena]

I'm excited to hear about your clinical trial!

So am I! It may or may not go ahead though. My Neph may give me advice that it's not something he may recommend for me. He's in discussion with the biomedical company this week! I actually found this company myself & have referred them to my Neph. There is a mutual interest already I have noted, ie my Neph is interested in their work and they're interested in finding Nephs who want to be part of their clinical trials. It's as scary as it is potentially exciting. Emphasis on the 'potential' here. More soon.

[MooseMom]

Thanks for the support! I think this is a great group, but I also want to make sure I don't come off as too glib about things that I do not experience first hand. After the initial panic about my daughter's condition, my engineering instincts kind of kicked in, and I see this as a big, long term problem, hopefully solvable one day. I would probably feel very differently if I were the one who had to go through with this, and I try to keep that in mind.

Actually, you may not feel all that differently if you had to go through this.  There is indeed an engineering component to dialysis, very much so, but along with engineering, there is biochemistry to consider, too, and THAT presents the biggest problem.