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Author Topic: Diagnosed. Malpractice?  (Read 12193 times)
George Jung
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« on: February 21, 2007, 11:44:29 AM »

I was diagnosed with kidney disease just over two years ago.  My ankles had swollen like softballs and I freaked out and visited the ER.  After tests and a kidney biopsy my newly appointed neph doctor told me that my kidney function was at 75%.  He said that according to the biopsy that it was a slow progressing case and there were not many "crescents" found from the biopsy.  He also told me that I would most likely not die from the disease, that I would "out live the disease",  I have a better chance of loosing my life from another form of natural cause.  (I was 29 and healthy by the way.)  I was then put on prednisone and altase and had regular visits.

After six months or so of regular visits I was being weened off of the prednisone and no longer taking any blood pressure meds.  I had eventually missed a follow up appointment (due to feeling good), but wound up eventually attending.  When I had, they performed the regular tests and I was on my way.  Several weeks to a month later I found myself taking a ambulance ride to the local ER.  After coming to a couple of days later in a hospital bed I had been informed that my kidneys have failed me.  I was never informed of my last lab results from that final appointment (I had called to get them myself once or twice.)  Now I am in dialysis 3 days a week at the mercy of others.

I feel like I was robbed of a fighting chance.  The doctor seemed to be very easy going about my condition and gave me no time table for any sort of dialysis (it was never even a topic of discussion.), he did not put me on a diet of recommend lifestyle changes.  This is causing me great concern for my care in the past and future.  It was a somewhat of a difficult time and I wonder at times if maybe I just don't remember the events correctly or if maybe I had selective hearing?  Is there some sort of malpractice here or do I just want to blame someone other than myself?  It seems to me that if I had 75% one day, and a year and a half later I am doing dialysis, something went seriously wrong.

What do you think?  What am I forgetting to consider?  Is this common?  What happened to the stages of kidney failure?
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jbeany
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« Reply #1 on: February 21, 2007, 12:03:25 PM »

You are entitled to copies of ALL your medical records.  Request the entire file.

Everyone's kidney's fail at their own pace.  I've no idea if your time table is unreasonable, although it does seem excessively quick.  The first sign I had of kidney failure was swollen ankles as well.  I was already down to about 30% function at that time.  It took 10 years before my function dropped to the point that I needed dialysis.

I have to wonder about the 75% you were told.  At that high of kidney function, it doesn't seem like you should have had any symptoms at all.

Proving malpractice is nearly impossible.  You have to find another doctor who will confirm that the first one screwed up and will being willing to testify to that in court.  If the original doctor has done anything even close to "standard levels of care" it's just a  waste of time and money.

  This is causing me great concern for my care in the past and future. 

The best thing you can do now is be informed.  If you read thru the posts on here, you will find a long list of patients who have learned this the hard way.  We share our experiences on here to help our fellow patients.  Learn all you can and take charge of your own treatment as much as possible.  It beats being "at the mercy of others."
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« Reply #2 on: February 21, 2007, 12:05:02 PM »

What was the diagnosis as to the cause of your kidney failure?
It's a tragic story and worth following up on, to see if something more should have been done.
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George Jung
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« Reply #3 on: February 21, 2007, 12:28:15 PM »

Who has my medical records?  Can I get them from my dialysis center?
Why do you wonder about the 75% function?  Are most patients diagnosed with far less?
As far as the time and money....well I would make the time to get to the truth and money is only money, it would not stop me from preventing this from happening to someone else.  Doctors need to do an amazing job, not just enough to do no harm.  A kidney doctors job is to save lives isn't it?

The diagnosis to the cause is/was not know to my knowledge.  When I asked how this happened to me it was kind of brushed off as the important thing to worry about at that point was what to do now and not what happened.
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okarol
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« Reply #4 on: February 21, 2007, 12:41:27 PM »



The diagnosis to the cause is/was not know to my knowledge.  When I asked how this happened to me it was kind of brushed off as the important thing to worry about at that point was what to do now and not what happened.

I think it's important to find out what caused the failure. Many medical conditions or diseases can cause a loss of kidney function, with diabetes and high blood pressure as the two most common causes of chronic renal failure. With diabetes, high blood sugar levels damage the blood vessels in the kidneys. Other conditions -- such as long-term inflammation of the kidneys, large kidney cysts and blocked urine flow -- can cause chronic renal failure. Many of these conditions need to also be treated or you will not be eligible to get listed for a kidney transplant (and they can cause other additional problems besides kidney failure!)
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
George Jung
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« Reply #5 on: February 21, 2007, 12:54:23 PM »

okarol -  What do you mean find out what caused the failure?  Do you mean with the initial diagnosis or when they quit me?  I had a vascular disease (henoc pep...something?) several years prior to the swollen ankles.  My last neph visit, one month before complete melt down, my blood pressure was a touch high but I was not notified of anything going seriously wrong.
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jbeany
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« Reply #6 on: February 21, 2007, 01:59:43 PM »

Who has my medical records?  Can I get them from my dialysis center?
Why do you wonder about the 75% function?  Are most patients diagnosed with far less?

Every doctor you've seen should have a record.  Your dialysis center has a medical record on you as well.  To get the whole story, you will need to go to each place, request your records, sign a records release, and probably pay a small fee to cover the costs of copying them.

I don't know about "most" - but I was wondering how you were symptomatic with such a high function, since my symptoms didn't even show up until I was down in the 30's. 
Anyone else got any feedback on what percentage they were at when they noticed a problem?
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« Reply #7 on: February 21, 2007, 03:01:18 PM »

Its a difficult thing to hold anyone at fault . I found myself in a similar position at the begining. I was diagnosed after all the usual tests , no reason has ever been given to me  to exlain how i got kidney failure, one day fit and healthy , next day kidney failure diagnosed, at that time my doctor said i could go anything from 5-15 yrs as i was , but i ended up on dialysis within 5 yrs of being diagnosed. I think the biggest shock was when the time came to have dialysis , i was handed two leaflets and told 'choose' which sort of dialysis you want! .I was given a day to decide, and even after choosing what seemed like the best for me , i was given no explanation as to what was invovled. I just woke to find this tube coming out of my stomach and told that i would go and be trained on how to do dialysis. The point being that i can understand that this must be an awful shock to you , but i dont think anyone can say for sure when dialysis will have to start, but i can understand how you feel.
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George Jung
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« Reply #8 on: February 21, 2007, 04:01:37 PM »

Don't you think that at the very least I should have been warned of some danger after my last neph visit?  I don't want to blame someone as much as I want to prevent another person from receiving inadequate care.  Shouldn't everything possible be done to saving a dying persons life if that is their wish?  I just want to know what happened and why.  Don't you want to know as much as possible too?
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« Reply #9 on: February 21, 2007, 04:58:36 PM »

I feel like I was robbed of a fighting chance.  The doctor seemed to be very easy going about my condition and gave me no time table for any sort of dialysis (it was never even a topic of discussion.), he did not put me on a diet of recommend lifestyle changes.  This is causing me great concern for my care in the past and future.  It was a somewhat of a difficult time and I wonder at times if maybe I just don't remember the events correctly or if maybe I had selective hearing?  Is there some sort of malpractice here or do I just want to blame someone other than myself?  It seems to me that if I had 75% one day, and a year and a half later I am doing dialysis, something went seriously wrong.

What do you think?  What am I forgetting to consider?  Is this common?  What happened to the stages of kidney failure?

Back in 1991I had injured my foot.  I went to a foot doctor but it got infected.  I was admitted to the hospital (which was my foot doctors affiliation, I would definitely had not gone there if I had a choice).  I was given an antibiotic which it turns out I am extremely allergic to.  I had all the symptoms, I was treated, had a few bone marrow tests done because it shut down my bone marrow.  To make a long story short I was sent home a month and a half later supposedly all better.  I kept all mt Dr appointments, ext.  I was also diagnosed with adult onset diabetes but it was controlled with diet so I was fine.  Now in May of 2003 I just felt awful, something was wrong.  I went to another doctor because I just didn't feel right going back to the one I had before for the diabetes.  So I went to the doctor and was sent for bloodwork.  My K was 6.6, my creatnine was like 4, I was a MESS!  He referred me to a nephrologist and two days later I started dialysis.  I was on dialysis until 1995 when I had a transplant. 
I found out later (through court and hospital records) that when I went in the hospital my kidneys were perfect.  When I left they were 60% gone.  The doctor never told me, never mentioned how much my kidneys were damaged.  I could have stopped it by taking drugs like prednisone.  I was never given the option to save myself.  And after I felt better I talked to a lawyer and he took my case.  My original care was so substandard my nephrologist gave a statement in my case.
I went to malpractice court and told my story before a judge and jury.  I was put on the witness stand was questioned, my family was questioned and my doctors questioned.  Just to be able to see that doctor and make him realize what he did to me was priceless.  I was 29 when this happened.  It was shown through the documented medical records that my kidney function declined through a month 50%.  Then the doctor told the court that he did tell me but I refused to go to a kidney doctor!  He was caught in a few lies and changing medical records.  It turns out we settled the case.  I am glad I went through it.  I'm not telling it all because I don't want to type for hours but one thing--the doctor went to school in Guadalajara, Mexico and wasn't even certified.
Oh boy I have a headache remembering all this and remembering testifying in court and being called a liar and being bullied by the other attorney.  But in the end I was proven right.  My mother was put on the witness stand and that hurts seeing your mother crying and going through that for you.  But that doctor will never again hurt someone like me and he will never again play God with someones health. 
If you think you have to talk to a lawyer, it can't hurt.  I don't care about money and I never did so it wasn't about the money.  Most people I know tell me I  didn't get nearly enough but I don't care.  I got my day to say what I had to say.
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« Reply #10 on: February 21, 2007, 05:12:01 PM »

Since the nephrologist put you on prednisone, a drug to suppress the immune system, you probably had one of the many diseases in which the body's own immune system turns against itself, attacking various organs, but unfortunately, very often the kidneys.  The most common of these is Lupus, although the variety is endless, including Wegener's Vasculitis, Henoch-Schoenlein Purpura, etc.  Some of these reduce renal function very slowly, others rapidly.  Most flare up quickly and die off, but some persist.  Obviously your doctor assumed that your ankle swelling was due to a sudden flare-up, and so when you improved, he tapered off the prednisone, which is good medical practise, since prednisone is a toxic drug which can cause many harmful side-effects.  The other difficulty with these auto-immune diseases is that there is no specific "thing" which can be found in the blood and measured to determine whether the disease is active or has faded away, so the doctor has to guess from your symptoms whether it is worth running the risks of keeping you on toxic drugs like prednisone to suppress the disease.  As you can see, the state of medical science in this area still involves a lot of guess-work, so it would be hard to argue, and impossible to prove by the standards used in a court of law, that your nephrologist was negligent.

I had a rare auto-immune disease of the kidneys and when I went into the hospital I was told I had a 60% chance of making a full recovery, based on the results of the biopsy.  The disease was quite professionally battled by a team of nephrologists in the hospital for four months, but eight years and one kidney transplant later, I can say that 60% chance of a full recovery did not do me much good.
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« Reply #11 on: February 21, 2007, 05:49:06 PM »



I had a rare auto-immune disease of the kidneys and when I went into the hospital I was told I had a 60% chance of making a full recovery, based on the results of the biopsy.  The disease was quite professionally battled by a team of nephrologists in the hospital for four months, but eight years and one kidney transplant later, I can say that 60% chance of a full recovery did not do me much good.

Are auto -immune diseases passed down through families?  Is there a chance you will get it back again to your transplanted kidney?  Can they prevent this?
And do you think stem cell research can help with auto -immune diseases?

Donna
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« Reply #12 on: February 21, 2007, 06:30:52 PM »

I had no symptoms of my kidney failure. One day my ankles would swell like elephant feet at the end of every day and I woke up with no swelling. after a few weeks I went to see my doctor. He had a 24 hour urine catch done. 2 days later he called and said I was to see a specialist. Only 20% of my kidneys had function. 1 week later only 10%. One month later I was starting dialysis. No signs or symptoms showed at all of this....still don't understand it. Had a physical a few months prior and all was well. Then total shut down. I got all my records from any doctor I've seen since then and have my own file of me. You can get that for yourself. No one can deny you your records. Collect them all. Read them well and if you don't understand anything have them explain. They owe you that much. Good luck and your in my prayers. :-*
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« Reply #13 on: February 22, 2007, 03:01:47 AM »

Sometimes the flu or a bad cold will settle in the weakest place in your body.  If that was your kidneys than that will do it.

Do what Okarol said and start by getting all your medical records from that idiot nephrologist's office.

I was 24 and not feeling well May of 1987.  I went to the doctor in a small town.  Everyone knew he was an alcoholic, but no one did anything about it.  He diagnosed me with an inter ear infection and gave me something...... then in a week it was worse... dizzy and throwing up.  He gave me patches to put behind my ears for equilibrium.  In a week I still wasn't feeling well so he sent me to an "Ear Specialist."  That guy took one look at me and said..."Did anyone do blood work on you?"  I slurred...."noo"  He sent all his patients home and escorted me to the lab.  That was a Friday.  He got the blood and send me home. 

I'm sure for protocol reasons he call the first idiot with the results.  Creatinine of 10, bun of 180 (something like that).  Well, it was the weekend!!!  PARTY TIME.... no time for me so he didn't call us.

By Sunday my husband could not wake me up.  He tried to give me orange juice and I threw up in bed.  He called that doctor... "Oh, we think it is her kidneys you need to take her to Spokane to emergency (2 1/2 hours away)."

I wanted to sue his ass, but just like you I was told "it doesn't matter how your kidneys failed you can't do anything about that now... let's just look toward the future."   OH AND  they would not list me until I had forgiven that doctor.  Something to do with my mental health.  So I TOLD them I forgave him.  Well there went any lawsuit I'm sure.



« Last Edit: February 22, 2007, 03:04:21 AM by Rerun » Logged

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« Reply #14 on: February 22, 2007, 03:29:39 AM »

With only reading the first post, I wanted to say that it is easy to get mad when we know things could have been different. I feel that same way about my own circumstances since I could have easily had my original kidneys working 100% today!!  :banghead;

but then with kidneys shit happens and you can't hold a grudge forever but move foreward and learn as much as you can and become incharge of your own care! Never assume the doc is looking into it all or knows it all! Too bad we learn this the hard way and not soon enough to prevent some of the things that happen to us! I know how you feel to a certain extent!  :cuddle;


Your story makes me now worry about my mother who they told only has 50% function (she says they said that is in each kidney but then my city's hospital said they can't tell  you individual percentages which makes me wonder if it is total).
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« Reply #15 on: February 22, 2007, 05:08:20 AM »

I have to agree with Jbeany that it's strange that at 75% kidney function you were showing symptoms. It could be that the  diagnosis from the biopsy was completely wrong and there was far less kidney function than 75%. I don't know how you'd prove that because even if you got the records for a second opinion, I would Imagine you'd still have to obtain somehow the biopsy material from which the diagnosis was made and then have it re-tested.   
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« Reply #16 on: February 22, 2007, 06:19:11 AM »

I'm very sorry for your experience. I had a bad experience learning of my renal failure also. I had a horrible migraine headache and went to the emergency room of our local hospital on a Monday. My blood pressure was something like 230/130. The doctor at the ER gave me something to lower my BP and told me to see my regular doctor. I called for an appointment, and couldn't get in to see my doctor until Thurs. His office was in a town about 25 miles away. Wednesday evening, I started having horrible migraines again. I went to the ER again, and they did the same thing as before. Thursday I saw my doctor, and he gave me a prescription for BP. It didn't work. Friday after office hours, and I was unable to phone him, I went a third time to ER. The weekend went okay until Sunday. This time, I told my wife to get me out of here and send me to a larger city about an hours drive away. After being in the ER for about 30 minutes and doing some tests, they put me in a room. I stayed there for 12 days. They later told me that I had renal failure. I had no idea what that was, but I found out. The neurologist told me that my kidneys where damaged due to high blood pressure probably for an extended period. I requested and got all my medical records. I found that my blood pressure had been high for a long time. I saw my doctor for several years, and saw him at least monthly, and sometimes more often. I had bad arthritis. He always took my blood pressure, but never treated me for it, or indicated it was high. Another doctor told me that while mine wasn't extremely high, it was high enough that it should have been treated. I also had allergies. I was taking Claritin, and I was having trouble with my allergies. The doctor changed me to Claritin D. I'm told that the decongestant often causes spikes in some patients blood pressure. That was when my migraines began. When it got to the ER records, I found that the ER doctor put in his records "possible renal failure." He never told me! My wife said that the doctor told her that I might have a kidney problem. She said that as far as she knew, it could be an infection or something. I saw a lawyer in a large city a good distance from home, to be sure there were no conflicts of interest. He wanted $5000 to start my case. I gave him the money, and he did his initial investigation. His results were not optimistic. He concluded that my renal failure was also possibly due to the allergy medications I had taken. He would pursue the case farther if I wanted, but it would be expensive. I decided to get the remainder of my retainer, and cut my loses. Later, I talked to my divorce lawyer, and he told me that he felt I had an excellent case, and I should see another lawyer. My case should not cost me anything, and should have been done on a contingency basis. I only had a year to file, and it had been over a year. (statue of limitations) I was angry for the lack of care I was given, but moved on. Sometimes you just have to. I've had several incidents were medical care has been substandard in my lifetime. I live in a small rural town, and it's hard to find a good doctor. The good one's often don't accept new patients, or move to a bigger city where their business is more lucrative. Some are incompetent, and others are just too busy, with too many patients. No different than finding a good lawyer or mechanic. Of course, medicine isn't an exact science either. That's why they call it practicing medicine. If you pursue a malpractice case, be sure to see that it is on a contingency basis, and I wish you the best of luck. If you find that you can't get any satisfaction, as I did, it seemed best to let it go for me, and move forward, with the best attitude I could muster. My situation couldn't be improved, and holding my anger wasn't helpful to me.

Again, I wish you luck.
« Last Edit: February 22, 2007, 08:48:01 AM by Triker » Logged
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« Reply #17 on: February 22, 2007, 07:04:59 AM »

 OH AND  they would not list me until I had forgiven that doctor.  Something to do with my mental health.  So I TOLD them I forgave him.  Well there went any lawsuit I'm sure.

WOW...I am constantly astonished by the stories I read here of the power wielded and used inappropriately by the personnel at transplant centers! It reminds my of a newspaper cartoon I cut out decades ago. Ziggy is standing in front of his TV and a voice coming from the speaker says "We interrupt this programming just to show you how powerful we are."

My own diagnosis was other-worldly...in brief.....29, no symptoms other than "feeling tired", bouts of nausea that came and went, leg cramps at night. I was diagnosed from a "wellness" blood test at work in 1989, which although they were looking at people's cholesterol and triglycerides as a baseline to join a health program, showed my BUN at 130, creatinine of 13 and hematocrit of 18. I was hospitalized and started PD a month later. No known cause.....I had a great neph; he got my previous medical records because he had never encountered a case like mine. Couldn't find anything and still don't know what exactly caused my kidney failure. Sometimes I think I'm paying a price for illegal drug abuse in my teens.......the "official" theory is some type of autoimmune response to pregnancy as everything was fine up till then and during. I got physicals every year after that, but who suspects anything from my symptoms?

George you are right to question what happened and getting your medical records may or may not answer your questions. I can tell you that for a long time, I was consumed with thinking that somebody, somewhere should have been able to see that i wasn't well. Even after two docs had looked at my records, I still looked for blame and in my case, there just wasn't any. I turned that energy over to learning everything I could about my options now and in the future and everything about my treatment and my access and if I became unhappy with a doctor, I either told them or found a new one. My best advice to you would be to remember that you are the customer, you have the right to go somewhere else and to change your course of treatment if you are unhappy. I have been on in-center hemo for 18 years now, and have been blessed to be able to keep working and to raise a fabulous daughter on my own after hubby bailed (after 1 yr of dialysis, wimp). So I encourage you George...knowledge is your power!
« Last Edit: February 22, 2007, 07:09:52 AM by mrhecht » Logged

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« Reply #18 on: February 22, 2007, 07:53:25 AM »

at that time my doctor said i could go anything from 5-15 yrs as i was
This is exactly why I'm such a fan of the IHD site - my neph said if I could maintain my current level of kidney function, I would not have to have dialysis, but the "if" isn't very reassuring (my function continues to fall bit by bit, is at about 35 right now), and if it suddently goes flat, I want to know all I can in order to make decisions about treatment that will be right for me.  My thanks go out continually to everyone on this site - I've learned from all of you, and been reassured by all of you, and feel well-armed to do battle when the time comes.

Anyway, I'm so sorry for the way you have been treated.  No matter whether you pursue the legal issue or not, be sure and get all your records - you are the only person you can absolutely count on to look out for your own best interests, so you need to have all the information you can have!  I wish you all the best!
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« Reply #19 on: February 22, 2007, 08:05:30 AM »

I was diagnosed with PKD at the age of 22. Fast forward to 19 years and now needing to see a nephologist
for rising blood pressure. Under this "doctor's" care for 10 years faithfully going to all checkups and blood work.
Now it is 2003 and I have pain and told to go to the ER. I go to my "doctor's" ER because that way he can
see me.  After 6 hours in the ER and many tests I can hear the Resident talking to my doctor on the phone.
They tell me NOTHING!  They want to admit me but since my "doctor" can't take the time to see is 10 Year
Patient, I'm not staying!  I go home still in pain and with no answers.  A few days later I decide to have my
10 years worth of bloodwork results sent to me.  Guess what?  I'm anemic for 6 of those 10 years and never
once did that A-hole discuss this with me, discuss nutrition or give me educational material about my care.
JUST TAKE THE MONEY and give substandard care.  I immediately found another doctor who turned me
around physically and did the best SHE could to delay dialysis as long as possible for me.  I think the main
theme here is NEVER TAKE ANYTHING FOR GRANTED.  I'm sorry that you became ill and I know how angry
you are.  Just know that you are not alone.  Just try to cope with this new lifestyle as best you can and
good luck.
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« Reply #20 on: February 22, 2007, 09:49:44 AM »

When I was a baby my mom would tell her doctor something was wrong with her baby. He actually yelled at her saying that she was a "over-worrying first time mother with nothing to worry about" and would just pinch my cheeks and tell my mom I was healthy. My mom was from Poland and didn't know the proper wording so she said I was spitting up when I was having projectile vomiting and was not gaining any weight. Still any GOOD doc would have realized something was wrong when a little baby is NOT gaining weight right? Not this doc. This doc instead accused my mom of poisoning her new baby (me) by not boiling the bottles long enough. This doc actually had my mom crying on the phone. What made it worse is my mom's mom had just died only a couple years earlier when she was 17 so she didn't have her mother to turn to and felt all alone. My dad wasn't of much help as he didn't know much about children neither and thought the doc is supposed to know what he is talking about.

As the years went on I guess he did run tests but it was always after putting on medication to deal with the urinary infections so he never found anything. It wasn't til I was 9 years old with a BP of 230/180 and going blind in my right eye (I seem to recall it was the right one - I remember sitting in class and not being able to see the board but I never said anything to the teacher, but instead covered one eye and continued copying the work from the chalkboard). It just happened I had an appointment with some doc or the eye doc. I don't recall much of my childhood so most of this is what I heard my mom say (I was hoping she would tell her story on my forums but no one from my family has bothered to contribute). Anyway, it was the eye doc who found so much pressure behind the weakest point in my body - the eyes - and he told my mom that he thought I had a brain tumor and that I had to be admitted right away. I was put into ICU (Intensive Care Unit) and I remember being so weak and tired and just wanting to sleep. I had never been so weak in my life even since then with low Hemoglobin even! I tried to say hi to my Godparents when they showed up and I couldn't even make any words come out of my mouth but fell asleep again instead. I had all these wires attached all over my body to all these monitors and machines beeping. It was really scarey as a kid. I guess eventually they found out I had renal failure. I remember through the many stays in the hospital from that time til the start of Peritoneal dialysis when I was 16 they brought in a lot of kid's kidney books to explain to me what I was going through. When I went on dialysis they took out one kidney and the adrenal gland on top of it and then when I had my transplant they took the other kidney out and the adrenal gland on top of it. The Nephrologist at that time said that I should have still had my 2 fully functioning kidneys at that time if it was not for the doc I had as a baby who died by then.  My mom has never pursued suing as she is "from the old country and people just don't do that as it was just a mistake and he must be forgiven"  ::)
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
stauffenberg
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« Reply #21 on: February 22, 2007, 11:14:42 AM »

To answer Donna's (Meadowland's) earlier questions: yes, autoimmune diseases do run in families, since there are several genetic traits which make people more susceptible to an autoimmune transformation of their immune system in response to the right kind of stress.  I for example have the DW23 human leukocyte antigen group, which is known to predispose people to autoimmune diseases of all sorts.

An autoimmune disease can attack a new kidney just like it did the two original ones, but this is less likely to happen because 1) the patient is heavily immunosuppressed during a transplant, and this suppression of the immune system also suppresses the auto-immune attack; and 2) many forms of auto-immune disease burn out after a single flare up and never return.  Thus for Wegener's vasculitis, for example, the chances of a second attack recurring after a transplant are only about 25%.

Cell therapy might some day help treat autoimmune dispositions of the patient's genetic make-up, but it is probably still 50 years before there will be a clinical application of stem cell therapy generally available.
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« Reply #22 on: February 22, 2007, 01:35:00 PM »

Thanks so much to everyone for sharing.  I am currently making rounds to anyone who may have a file on me.  Today when I asked for my records at the center she (not really sure of title) asked me if they were for another physician.  When I said that they were for me, the lady asked me what for.  My body expressions immediately took over and then I replied, "because I want them".  What difference does it make?  I have to pay 25 cents per page so maybe they would have been free if they were going to another doctor? She then asked if I wanted my labs.  Nooooo.  Why wouldn't I?  Aren't they a part of my records?  Well, they will have them for me Monday.

I want to make something clear here.  I don't want to have my feeling or emotions judged, especially by someone whom I have just met and has not been given an opportunity to learn who I am.  That said, I am not angry, or mad at anybody, or looking to point a finger.  Think about this.....Whenever you point your finger at someone there are three pointing back at you.  I don't believe in it, period.  What I am doing and feeling is what I should have done years ago and been proactive rather that reacting to everything.  If my care could have been better, then my learning all that I can about it, and what happened, and understanding it, there are bi-products of those actions.  Some of you may learn with me and if there was a person who I trusted with my health, and they truly dropped the ball, then I can drop the hammer.
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goofynina
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He is the love of my life......

« Reply #23 on: February 22, 2007, 02:19:07 PM »

You go boy,  i admire and respect what you are doing ;)  Good luck with all you do and keep us posted ok, keep on keepin' on my friend...  :2thumbsup;
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angieskidney
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« Reply #24 on: February 22, 2007, 02:52:42 PM »

I should have done years ago and been proactive rather that reacting to everything.  If my care could have been better, then my learning all that I can about it, and what happened, and understanding it, there are bi-products of those actions.  Some of you may learn with me and if there was a person who I trusted with my health, and they truly dropped the ball, then I can drop the hammer.
I would love to promote all doctors checking for renal reflux in children and taking repeated urinary infections very serious in any youth. I have learned from my experiences but don't know how to help others. I admire what you are trying to do! Good luck to you!  :2thumbsup;
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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