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Polycystic Kidney Disease Message Board
This message board is for people with Polycystic Kidney Disease to share information, talk about their problem and give support to one another. Feel free to post whatever you'd like to talk about.

NOTICE: Please don't try to sell your kidney on this message board. I disagree with it besides also living in the U.S. where it's illegal so I will take it down. If you want to donate a kidney, I think that's wonderful but please don't post it here. There's been too many suspicious posts where the person seems to be wanting to sell their kidney under the guise of donating so it seems better not to allow any. Instead, try contacting John Hopkins "Altruistic Donor Program" and if it's not convenient to your area, they could probably could refer you to a closer program.

http://www.hopkinsmedicine.org/Transplant/Programs/InKTP/altruistic.html


PKD Information Page
Subject: Re: kidney size and blood tests


Author:
No name
[Edit]
Date Posted: 18:11:59 01/04/07 Thu
>hi, do any of you know what are the sizes of normal
what kidney debris>kidneys? also,My son one of kidney has debris, and, oneof his kidney is 5.9 and other is 6.1?is that normal
Subject: Healing this


Author:
No name
[Edit]
Date Posted: 17:10:58 12/05/06 Tue
A short time ago I was diagnosed PKD

I would love to read opinions from other people, about the info I have collected so far. Thanks, in advance, for taking the time to read this.


The cientific researches are now working in two kind of cures:

-The xenotransplants
* It would offer the possibility of transplant before the renal failure
* There are a lot of economic interests on getting that to work ( this would be not only kidneys,but hearts, ... The most advanced researches predict they will start to work with tests on humans on 3 years from now
* It could make retrovirus appear... (bad fact) already been researched
* More info: http://www.pittsburghlive.com/x/pittsburghtrib/s_441762.html

- Stop the cysts growth
* Recent success with mice, show it could be done
* The problem with it by the moment is that the drugg used to do so, depresses too mutch the inmune sistem, so more work on that is required.
* More info:
http://www.sciencenews.org/articles/20061125/fob4.asp


Now, I have studyed hypnosis for a long time, and I think there are some evidences that the cysts growth could be stopped, and even reversed, by a good use of hypnosis.

I will go from the soft to the hard material I can remember now:

-Dr Escudero, a spanish doctor, uses hypnosis to make his patients feel no pain by his surgery ( A documentary about him was made, and shown on discovery channel, feel free to check the links )
http://wdr.escudero.com/discover.htm
http://www.dsalud.com/numero6_1.htm

-You can reduce your blood pressure, just by listening to the audios provided by this program:
http://www.transparentcorp.com/products/np/
(this has been proven to be better even than the pills, and you can test yourself if you dont believe that, they give a 15 day free trial)

- Richard Bandler, one of the bests hypnotists in the world, states in one of his seminars (you can buy em or find them otherwhere...) that he has seen several cures throught hypnosis... even from cancer... and he attributes the miraculous healings by believers in god, to the powerfull autosugestion they give themselves

- Emile Coue, wrote a book, about the healings he saw on his live, inspired by the suggestions he gave his patients, he mentions even a paralisis cure ( I suggest you read his book)

- It has been proven that hypnosis can cause some effects in our bodyes as some drugs would, even can make us feel drunk, etc etc...

- Placebo effect...

- And here is a link to a cancer healing by using hypnosis:
http://www.dsalud.com/numero54_3.htm

This list could go on, and on...

I hope you have concluded so far, that hypnosis can change your mind, and your body.
It usually happens that, once after the diseased has been transplanted, de cysts start to leave and dissapear.

So my question so far is... could that disapearing, or at least the stop of the gowth got by thoose new drugs, be induced by hypnosis, relieveng us that way from the slow process until the renal failure?

Where should I post this info so some Docs can think about it? Thanks =)
Subject: Re: New Diagnosis and Having Pain


Author:
Another PKD patient
[Edit]
Date Posted: 19:00:01 12/03/06 Sun
I am a 16 year old ARPKD patient. I constantly have kidney pain too. I have been told that it is my cysts popping. You shouldn't worry about your boys too much because you have the adult form of PKD ADPKD (autosomal dominant poly cystic kidney disease). Your boys will not experience symptoms for years probably not until they are 18 or much much older. For fatiuge I would suggest you get your iron and red blood cell levels checked out. I was constantly anemic for over 10 years and until my nephrologist put me on a synthetic blood hormone (synthetic because the real ones like epo and procrit made me bruise all over). If you were just diagnosed with it now chances are you will be fine for years and years especially since they said you have an ok kidney function. Talk to a nephrologist about pain management too.


~ good luck
Subject: creatinine levels and gfr


Author:
jiimy
[Edit]
Date Posted: 20:39:56 09/22/06 Fri
hi everyone.
a few months ago my creat level was normal. in late june was 2.7, now in late sept its low 3.2 or 3.4.
gfr is now 26.
i feel yucky as i have the past nine yrs anyway, got hit in my car last week but not sure if that has caused any problems other than more pains.
going to the neph on oct 5. dont relish the idea of dialysis.
does anyone else with PKD have this . im 55.
feel free to post or email me.
thanks all.
oh, i was diagnosed in 1991 with this, i also have a slightly herniated L5 disc in my low back that has dealt me fits.
Replies:
Subject: Just had a new procedure to cure PKD pain done.


Author:
Steve
[Edit]
Date Posted: 21:23:26 11/30/06 Thu
I have had pretty bad pain from my PKD for about 4 years now, tonight I am typing this pain free, I don't know how to act. I had 2 deroofing procedures done at the Mayo in the last year with poor results and was about to give up when I was referd to a new DR. She gave a me a complete workup and introduced me to a thoraxic surgeon who is doing a nerve ablation procedure to cure pain from pancreatitis, they decided to try it on my pain and I had the operation on Nov 9th. I was discharged after 1 day, and recovery only took about 2 weeks. My DR told me I am the first person to ever have this done for PKD pain, and she is so happy with the outcome that she is writting a grant to the PKD Foundation.


I would be glad to discuss this with anyone who has pain issues. E-mail me if you want any info.
stavrosteve@yahoo.com
Replies:
Subject: Roscovitine slows cyst growth


Author:
No name
[Edit]
Date Posted: 21:17:48 11/25/06 Sat
An experimental cancer treatment, called roscovitine, being developed by Cyclacel Pharmaceuticals, Inc., may hold promise for treatment of polycystic kidney disease (PKD. Scientists at Genzyme Corp. tested roscovitine in mice with PKD and found that it helped slow the progression of kidney damage. The study was published in the November 22, 2006 issue of Nature.

http://www.sciencenews.org/articles/20061125/fob4.asp
Replies:
Subject: mm


Author:
alessandra
[Edit]
Date Posted: 10:10:30 12/01/06 Fri
Well in february of last year i was diagnosed with PKD along with my little brother. We had multiple cysts ranging to 3-5 in diameter and a kidney of mine was bigger than my other one.i would have chronic pain constantly.then da pain went away for couple of months.in september i went to the hospital for a ultrasound check up .when the specialist was doing the ultrasound she surprisingly found i had no cysts, then they checked my brother and he didnt have none either.they checked us for a long time.and they were confused because in the first ultrasound in february they confirmed that we had pkd .but in this second test they found nothin.but now in november i have been expeperiencing pain that i used to have when i had pkd.
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