Know, don't know, don't want to know, would have wanted to know.

[Normie]

Hi everyone,
I would like to know how you all feel about this topic.
I would like to know if you knew about your kidney problem early or if you didn't know about it until ESRD.  I also would like to know if you would have wanted to know sooner, so perhaps you could have slowed it down or if it would have been a burden in your life.  Or would you have preferred not to know, so that you could have lived more normal.  Were you fuming because they didn't tell you until ESRD?

Also, do you think doctors should tell their patients?

I am personnly pissed that they did not tell me.  I found out on a blood test.  I now can at least try and slow it down.  I can eat right and lose weight.  I understand that in some places you have to be at a BMI of 30 to get a transplant.  At least I know that and can lose some weight so I am prepared.  I can come here and learn all I can.  I would not want to be told one day out of the blue that I have to have dialysis right away.

Thanks for any reponses.
Normie

[Deanne]

I've known since I was 9 years old. I'm 45 now and not yet in kidney failure. I wish I hadn't known until I was an adult, or it had at least been handled differently because I spent my whole growing up years thinking I was going to die because I was only given partial information. That's a different rant though!

As an adult, I'd be fuming if I wasn't told. They'd be taking away my control over my own life. If they're withholding information, how the H-e-double hocky sticks am I supposed to do whatever I need to do to maintain my health as long as I can? How could I prepare for the future?? A big chunk of my work life is geared towards being a kidney patient. I made sure I always have a job with good insurance benefits and a job that I could do remotely if necessary. If I hadn't known about my kidney disease, I could've put myself into a world of hurt by trying self-employment (no insurance), or a getting a job that I wouldn't be able to handle when my kidneys finally fail.

[draven]

i was told i would be on dialysis within 2 years. that was 10 years ago. i was glad i was told before so i did things as much as i could (go overseas and finish College)

I just wish they told me the finer details about dialysis. that it takes 4 hours 3 times a week. and that there would be fluid and diet restrictions. and the biggest one of all there are 2 needles  

if i had know some of that info i would have watched my diet alot better.

[Lori1851]

We were told when Dustin was diagnosed with FSGS that within 5 yrs he would be on dialysis. Well it was more like 2 yrs. I think Dr's owe it to their patients to be honest and up front.

Lori/Indiana

[monrein]

I've known all my life that my kidneys were problematic.  At 18 I was given more details from doctors about ESRD and dialysis for the future.  I didn't fret much but I got very busy doing things that were important to me.  Turned down a very generous, and completely unsolicited graduate school scholarship (I was courted by a couple of universities based on my undergraduate record) to go to India and Asia for a year, traveled to Central America after that, came back, did a Masters degree, went to live and teach in France for a year, lived and taught in Nova Scotia and only stopped the full throttle approach when dialysis started very suddenly one summer.

I'm really glad I knew and that I didn't wait for "retirement".  Despite ESRD, I feel grateful for and actually amazed at how rich and varied my life has been.  Adventures ,big and small, feed something in me and I've always preferred the road less traveled.  I hope this little detour I'm on right now will end successfully and soon but if not, I feel I'll manage and hopefully I can do so with some measure of style.

I'd be beyond pissed if I did not get full disclosure of all the gory details from my doctor.  Fortunately he knows that and likes to keep me in a decent frame of mind.

[Rerun]

I had no idea.  I just ended up in emergency after being sick and seeing 4 doctors.  It was a bad deal.  I wish I would have known.

[petey]

With my Marvin, we didn't have any advance warning that ESRD was coming.  We thought he had a bad case of the flu that he couldn't shake; he went to the doctor about once a week for almost two months.  Marvin continued to work, though he was getting weaker and weaker -- and vomitting most mornings.  The weight was dropping off of him by the minute; in 2 months, he lost almost 100 pounds (his theory is now that it's good to be fat if you're going to get sick -- before it was all over and he was "steady" on dialysis, he had lost from 375 pounds to 220 pounds).  He came home from work on a Thursday night and told me he thought he was having a heart attack, so I rushed him to our local emergency room.  The good news was his heart was fine; the bad news was that he was in total renal failure.  He was transferred to the hospital in Wilmington, NC (about an hour away) where we were met with total idiots and the most incompetent medical people I've ever encountered (I left with him AMA after about 15 hours).  Later that day (Friday), we got in to see a nephrologist at Duke hospital (three hours away) in Durham, NC.  The doc at Duke admitted Marvin there.  They gave him loads of lasix (diurectic) and did a multitude of tests.  The next Monday morning, he had a perm cath put in and started dialysis that afternoon.  That was March of 1995.

Do I wish we had known beforehand?  Maybe "yes," and maybe "no."  If we had known, there would have been nothing we could have done to prevent or postpone it.  However, we would have had a chance to "mentally" prepare for it (if there is such a thing).  I'm not sure that anything, though, could have prepared us for what it's really like and how difficult it is.  Probably, we were better off not knowing.  I do, however, wish that I had had the time to research this disease and the process of dialysis beforehand so I would have known what questions to ask/ what to insist on/ etc. in those early days.  We were clueless -- so young, so naive, so innocent.  We've learned the hard way what to ask, what to do, what not to do.  It would have been easier if we had had more knowledge.  That's why this IHD site is so great -- there's a load of info, experiences, etc. that others have gone through that should make it easier for the new kids.

...So, Marvin's on the machine now (home hemo), and I went and posed this question to him.  His answer was, "Absolutely not, I would not have wanted to know beforehand.  That would have been a lot of worry and mental anguish,  and it would not have changed our end result one bit."

[kitkatz]

I wish I had known more before hand, I probably could have prevented some of the ramifications if I had seen a doctor sooner than I did. 

But then I am not good at following a strict diet, nor instructions from a medical team.

I just got real sick and then went to Kaiser. The receptionist who checks people in took one look at me and said "Honey I will get someone to see you right now!"  I had a doc looking at me within five minutes and was sent for blood work.  Then thrown into intensive care pretty quickly after that!

[Jill D.]

I found out I had a kidney "problem" when I was 28. I wouldn't have known if I hadn't been pregnant with my son and they noticed the protein in my urine at every prenatal appointment.
My nephrologist never referred to my problem as a kidney disease, CKD or ESRD and never explained to me that my "condition" would eventually lead to dialysis and/or transplant. Call me clueless, but if you don't know to ask, you don't ask and up to that point I had been healthy and did not have much experience with doctors like I do now. He told me to watch my protein and salt. It was many years before I even knew the name of my disease. When my neph asked me to come to a presentation about predialysis diets I FREAKED OUT! At that point he realized I had no clue what I was really facing. It was at this point that I alsoI asked myself the same question you are posing - do I wish I had known the reality of the situation from the get-go, or was it better that I lived my life for many years without the stress and worry of wondering when my kidneys would call it quits?
I think it's always better to have as much information as possible from the beginning and it is the doctor's responsibility to explain or provide resources for more information. (I was diagnosed in 1990, way before the internet and support sites like IHD) There were a few things I would have done differently had I known - not to say that it would have made a difference since I did go 16 years before having a transplant - even though in my "ignorance" I avoided a lot of added stress and worry while raising a family.

[Angelicfury]

I have known for over a decade about my kidney problems. When in my teens at my first Dr.s' appt I did a urine test and had 3.0+ protein. More blood tests and a biopsy later confirmed the results. I have been living with stage 4 kidney failure for years. This spring everything finally went down. Not knowing would have probably be a bad decision for me.

[Sunny]

My kidney disease came on suddenly 7 years ago. I was told all the ramifications of it and educated myself on everything, once I got over the initial shock. I wanted to know everything there was on the matter of my particular kind of kidney disease and it's aftermath (i.e., Goodpasture's Disease), so I could be better informed on how to live and survive with it. I think it has helped me and believe everyone should be as equally informed about their kidney disease. However, if you are young when it happens, I'm sure it must be hard to face and easy to try to ignore.

[Ang]

i  was  diagnosed  some  13  years  ago  through  a  medical  for  life  insurance,  have  only  been  on  dialysis  for  2.5  years, my  neph  kept  me  fully  aprised  as  we  went  along,

stupidly  i  was  contented  to  go  for  blood  tests  3  monthly  and  leave  it  at  that  ,  on

1  such  visit  he  said its  time  to start,  then  it  was  that  i  started  freaking  out  as  i  knew  absolutely  nothing


if  i  wasn't  advised   or  kept  in  the  loop  i'd  be  making  darn  sure  that  some  got  there  arse  feeling  a  little  sore  by  the  time  i  was  done

the  dilema  at  the  moment is  being PKD  and  it  being  hereditary,  does  my  daughter  get  tested  now(9)  or  wait  till  teenage  years  and  let  enjoy  being a  kid

my  thoughts  at  the  moment  are  we  wait  and  she  enjoys  growing  up.

[David13]

I would want to know as soon as possible if I were headed for ESRD for the simple reason that I would want to take whatever steps might be available to help to prolong whatever renal function I had and thereby avoid starting dialysis for as long as humanly possible. 

I can certainly understand not wanting to hear such information initially, but I feel strongly that knowledge is power.  If more pre-dialysis patients were receiving the education and information they deserve, they would be better armed to make decisions that will impact their health in the long term.  Decisions such as what type of dialysis (in-center hemodialysis, peritoneal dialysis, home hemodialysis) and what type of access (fistula, graft, catheter, PD catheter) could be made with the patient's wishes in mind rather than as an emergency situation.  This, of course, is not always possible.  However, if it is known in advance that a person will eventually develop ESRD and that person is then given information, he or she can take their time and consider all of their options.

Pre-dialysis education is, unfortunately, sorely lacking in this country. 

[RightSide]

I had no idea I was headed for ESRD.  Earlier, I had already been diagnosed with urination difficulty from an enlarged prostate, but was advised to just do watchful waiting since I could still urinate after a fashion.

So I did.  I waited...and waited...and waited...while unbeknownst to me, urine was backing up into my kidneys from my blocked bladder and destroying them.

I only found this out when I saw a doctor for pains in my hip joints and back, which I had assumed was arthritis.  Well, it wasn't.  The doctor showed me the results of my blood tests and I nearly fell off my chair.  And I started on a journey which ultimately led me to--here.

[RightSide]

Oh, yes, in response to your other question:

Yes, I wish I had known in advance, because there are a zillion personal and professional things I would like to have done before ESRD started impacting my life. 

I learned the hard way that the word "benign" in "benign prostatic hyperplasia" does NOT mean "harmless."  I had no idea that this condition could lead to kidney failure. 

BTW, it was only this past spring that the Mayo Clinic has recommended that from now on, all American men with benign prostatic hyperplasia should be screened for renal disease as a matter of course.  I only wish I had been.

[graftgurl]

I had numerous kidney problems which started when I was pregnant, but I wasn't diagnosed with CKD/ESRD until fall 2005 (12 years later). My nephrologist was great and was always up front about what was needed to help me avoid dialysis until the last possible minute. I was still shocked when he told me that my labs had come back dramatically different and I would need to have access put in and begin dialysis within the next 2-3 months. You may have the mental knowledge that will prepare you, but the emotional backlash is something you can't prepare for. I definitely would have been extremely upset/angry/annoyed/frustrated/scared, etc. if I hadn't been told. That's why this website is so invaluable!!   

[Bajanne]

well, I am one who cannot blame any doctor.  My brother who was a diabetic, as I am, who spent 10 years on dialysis.  Somehow that did not make me be more careful in the handling of my chronic disease.  Then the year before I started dialysis, a doctor kept telling me he didn't like my blood works and that I needed to make an appointment with the nephrologist.  I was just before my summer holidays and I was going home, so I said I would check a doctor in Barbados.  But, it was summer holidays, and i was feeling okay........
I saw him at a function months later and he said 'you need to see the nephrologist'.  I said ' sure', but didn't.  It wasn't until the next year when my body just couldn't seem to go any more that I was taken to emergency and then it started.
However, what I am going to say will seem very strange.
In some ways, I am glad that I didn't know at that time.  My daughter was just about to go to  Community College fulltime and my grandson was starting pre-school and if I was aware at that point, I would not have been able to help them, since I would have returned to my country (as I would not have renewed my teaching appointment).  Since I didn't know, I was able to be rehired at that point and complete those things I needed to complete.
If I had truly understood years before that (from seeing my brother), I would have handled my hypertension and diabetes better and even come off medication through diet and exercise and avoided dialysis.   
Shoulda, woulda, coulda.......       

[Katey]

I have known about my kidney disease since I was 13 when I had my first biopsy.  However, I did not realize the seriousness of the disease nor did any doctors provide me with this information. 
I don't know if I would've behaved differently if i had known that long ago.  However, after only having to take some sod bicarb and some potassium pills when one day in my 20's I go to the doctor for a reg visit.  He told me that I have to start hemo the next day or I could be jeopardizing my life.  This made me so mad/sad etc because I wish I had more time to prepare.  I went home to tell my boyfriend at the time (husband now) to which he said "Had you known before you would've consumed yourself with anxiety and worry"  so I am definitely on the fence on this one.

However, I do wish there were more informative resources about hemo when I started.  The nurse walked me into a room filled with people that didn't look like me (whom were sickly and much older at the time) which inevitably scared me. I did not realize I was as sick as these individuals. I thankfully then had a hemo "partner" that educated me on hemo and the many questions that I had.

[G-Ma]

I was diagnosed in 1987 with diabetes and at every blood workup I was told I was spilling protein but no Dr at any time gave me further info and I didn't ask, so fault lies on both sides..yes I think we should get more info from Dr's who are trained in what to know and should be trained in what to tell a patient...part of me I think is glad I didn't know the day this would play out so I was able to do a lot of living up to spring of 2007..on the other hand if I had been given clearer info by a Dr I might still be avoiding dialysis.......that is something I don't know so have to play with the cards I was dealt.  It's useless being angry at this point...just more stress that we don't need.
Ann

[idahospud]

I have know all my life about the possibility of ckd. My mom went on dialysis when I was 7. I was tested for the fest time when I was 15 right after Mom died . I then when I was pregnant with my doter . I was lucky to git sent to a DR.  how confermed that I had pkd just as Mom did . He Mead me a part of the teem I know the plan . But as all god things must come to and end He retired .Now I'm left looking for a know DR the one I have now is OK But he forgets I'm part of the teem to I'm still looking for a DR . expertly now that I'm coming closer to dialysis. I am glad I know It gave me a chains to reallies that life is preshis don't wast it .  I know it cheesy but trow . I had my doter tested in her teens . I thought it better to let her be a kid . and with label of pkd it can be hard to git inc and stuff . grate queston   Carol

[Normie]

WOW.  Thanks for all of your responses.  Interesting, thoughtful and amazing answers.  No one knows what would have been in some cases. 

As for me, I am glad I found out even though the doctors didn't tell me.  I feel I can at least take a proactive role.  Since mine is damage, I don't know if it can play out differently, but I am determined to beat this if I can.  I have already improved some.  The worst it was after the oral surgery was Creatinine at 1.1 and GFR at 54.  Now the Creatinine is at .79 and GFR is 79.  I have an alternative person I am working with and I hope we can improve it even more or at least keep it from progressing.  I am starting a new diet based on blood type.  Sounds really good.  Hopefully it will help.

If any of you have any suggestions, please let me know.

Again thanks for responding.  The best part, as a newbie, is that it has also really allowed me to get to know all of you better.  And I hope to get to know you even better as I read more of your posts.

Thanks,   
Normie