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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: post transplant kidney removal


Author:
rae
[Edit]

Date Posted: 17:38:38 04/20/08 Sun

Just wondering if anyone has had a transplant then, at a later date, had pk diseased kidneys removed? I have lived with the disease for 28 years, received a perfectly matched kidney from my brother and now await the nephrectomy.

Thank you for any information and good luck to all.

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Subject: My newborn son has pkd


Author:
Fred Lohr (Need Support)
[Edit]

Date Posted: 17:58:40 04/07/08 Mon

Im looking for people who have passed trough similar situations that i can talk to. My son was born with pkd, 6 weeks old now. I think they are about to take out his kidneys and put him on dialasys. If anyone is out there that has passed through this, please, respond.

Fred/

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Subject: Homeopathic cure for polycyctic kidney ??


Author:
No name (help)
[Edit]

Date Posted: 03:52:04 04/02/08 Wed

I was desperately browsing net for cure for polycystic kidney. In one of the sites homeopathic medicine apis 3x has been recommended. Has anyone ever taken this medicine? It will be really helpful if anyone can share the results. Its written that it helps in dissolving cysts.

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Replies:
Subject: Lost


Author:
Marsha (confused)
[Edit]

Date Posted: 16:20:25 03/22/08 Sat

I just found out Friday, 03/21 that I have several cysts on both kidneys. My doctor believes it is ADPKD, and I will be having a sonogram on Monday to see if there are cysts on any of my other organs. I am too young for this! I have no idea what this means for me!

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Replies:
Subject: pain in both kidneys


Author:
Bob
[Edit]

Date Posted: 00:10:39 03/19/08 Wed

It has been a while since I've posted, sorry. My problem is I found I had PKD 5-6 years ago, starting to have bad pain in both kidneys, urinating alot. Lower legs swelling when I travel on planes or driving. BP usually 140/90. Could anyone clue me in maybe on what's going on? Thank you. Worried, Bob in WV.

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Subject: Polycystic kidney


Author:
mona (help)
[Edit]

Date Posted: 00:50:52 03/13/08 Thu

I have polycystic kidney and recently came to know abt some research using a chinese herb having triptolide, any update on the progress as the paper is nearly 1 year old now.

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Subject: Re: New PKD Resource


Author:
Sheila (Stressed and depressed)
[Edit]

Date Posted: 16:23:04 02/07/08 Thu

Hi
I have 3rd stage PKD and am considering deroofing to eliminate the pain. Do you know if deroofing shrinks the kidney, thus getting relief from pain. I have maybe 5/8 cyst that are large enough to remove but the pain is horrible. I've had the CT Guided Drainage done a number of times, that last approx. two weeks and the pain is back. My doc has suggested pain meds and muscle relaxers 3 times a day. I think it would be tough to function taking all that med. Any info will be greatly appreciated.
Thanks
Sheila

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Subject: Doctors report transplant breakthrough


Author:
Beth
[Edit]

Date Posted: 12:04:00 01/26/08 Sat

Doctors report transplant breakthrough

By ALICIA CHANG, AP Science Writer Thu Jan 24, 7:52 PM ET

LOS ANGELES - In what's being called a major advance in organ transplants, doctors say they have developed a technique that could free many patients from having to take anti-rejection drugs for the rest of their lives.
ADVERTISEMENT

The treatment involved weakening the patient's immune system, then giving the recipient bone marrow from the person who donated the organ. In one experiment, four of five kidney recipients were off immune-suppressing medicines up to five years later.

"There's reason to hope these patients will be off drugs for the rest of their lives," said Dr. David Sachs of Massachusetts General Hospital in Boston, who led the research published in Thursday's New England Journal of Medicine.

Since the world's first transplant more than 50 years ago, scientists have searched for ways to trick the body to accept a foreign organ as its own. Immune-suppressing drugs that prevent organ rejection came into wide use in the 1980s. But they raise the risk of cancer, kidney failure and many other problems. And they have unpleasant side effects such as excessive hair growth, bloating and tremors.

Eliminating the need for anti-rejection drugs is "a huge advance," said Dr. Suzanne Ildstad, a University of Louisville immunology specialist who had no role in the work.

"It still needs some fine-tuning so that everyone who gets treated gets the same consistent outcome ... It's not the holy grail of tolerance yet," she cautioned.

The results do not mean that it is safe for current transplant patients to go off their medicines. Doing so could lead to organ rejection and even death, doctors warn. And Sachs said the treatment will not solve the country's organ shortage.

In the 1990s, Sachs showed the treatment could work in a kidney recipient who was a good genetic match. The woman, who had an organ and marrow transplant in 1998, has not needed anti-rejection drugs for a decade.

The new study involved five people who got kidneys from parents or siblings who had slightly different tissue types from the patients. Since many kidney transplants are similarly mismatched, there is hope more people might one day be spared immune-suppressing drugs.

The breakthrough has changed the life of a Los Angeles man who was one of Sachs' patients.

Derek Besenfelder was born with a genetic kidney disease. After a year on dialysis, he decided to enroll in the experiment and received a kidney and marrow transplant from his mother in 2005. He took anti-rejection pills for eight months, but then was weaned from them. He has been drug-free for two years.

"I wanted to be off the drugs as soon as possible. I had this huge bloated face and didn't feel comfortable going out in public," said Besenfelder, 28, who works as a communications director for a Beverly Hills plastic surgeon.

Doctors have experimented with giving marrow before, during or after organ transplants, while also tinkering with patients' immune systems to prime them to accept the new organs.

Sachs' treatment involved weakening each kidney patient's immune system with intravenous drugs several days before the transplant. After the transplant, the patient got an infusion of marrow from the donor to create a new immune system.

The stem cells from the marrow reprogram the body by allowing new immune cells to grow that don't try to attack the donated organ.

The patients took anti-rejection drugs but were weaned several months later.

Four of the five patients developed a hybrid immune system — where recipient and donor cells live together in the body — for a short time. They were able to stop taking anti-rejection drugs and had healthy kidney function two to five years later.

In the one case that failed, the patient had a second kidney transplant and has been on medications since.

Some researchers such as Ildstad believe the "home run" breakthrough will come when more people respond to the treatment and keep the mixed immune system permanently.

Transplant pioneer Dr. Thomas Starzl of the University of Pittsburgh said donor cells appeared to persist in the bodies of the successful transplant recipients even if those cells were not readily detected.

As promising as the treatment is, Sachs said it won't solve the country's organ shortage problem. Nearly 98,000 people are on the waiting list, according to the United Network for Organ Sharing.

The study was funded by the Immune Tolerance Network, an international consortium of federal and advocacy groups. Sachs plans a follow-up study involving 15 to 20 patients at Massachusetts General and other hospitals.

In the same issue of the New England Journal, Stanford University doctors reported successfully inducing tolerance to a donor organ in a man who was born with one kidney.

Larry Kowalski, now 50, received a matching kidney and marrow from his brother in 2005 and was weaned off drugs six months later. He has been off medications for two years.

Unlike the Massachusetts General cases, doctors said Kowalski has maintained an immune system from his own cells and his brother's. The research was funded by the National Heart, Lung and Blood Institute.

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Subject: Chicago Area Nephrologist


Author:
Meredith Cunningham
[Edit]

Date Posted: 23:16:36 01/22/08 Tue

Hi Marie -

I saw your posting this evening and I wanted to try to reach you.

Please email me at chicagochapter@pkdcure.org, or call: 847-949-2454.

I would be happy to share the list of local docs who have been utilized by chapter members and have had personal & positive encounters with these docs. The PKD Foundation can not endorse any docs/hospitals, but we can share the information collected by our members.

I look forward to your reply.

Meredith Cunningham
Chicago PKD Chapter Co-coordinator
chicagochapter@pkdcure.org
847-949-2454

>Hello!
>
>My husband is in very advanced stages of PKD. He
>doesn't really like the nephrologist he has been
>seeing.
>
>He said he would really like to see an excellent
>nephrologist, maybe from Loyola or another teaching
>hospital.
>
>We live in a western suburb of Chicago, we are about
>10 miles southwest of Schaumburg.
>
>Any ideas? Thank you!

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Subject: tolvaptan uk drug trial


Author:
No name
[Edit]

Date Posted: 03:56:49 12/21/07 Fri

Hi
anyone in the UK interested in enrolling in the UK tolvaptan drug trial can contact
Dr Daniel Zehnder or his researh assistant Nicolas Aldrigde as they are now actively enrolling.
their details are :

d.zehnder@warwick.ac.uk
nicolas.aldridge@uhcw.nhs.uk

Dept of Nephrology
University Hospital Covenrty and Warwickshire NHS trust
Clifford Bridge Road
Covenntery cv2 2dx
telephone :02476 968 589

Mike

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Subject: I'm Releasing an Album Chronicling my Kidney Failure.


Author:
Elijah Ebenezer Wyman
[Edit]

Date Posted: 20:36:11 11/25/07 Sun

Hi there,

My name is Elijah Ebenezer Wyman, and I'm 22 years old. Almost 2 years ago I found out I had a rapidly progressing form of IGA Nephropathy. I've been incredibly blessed and had a kidney transplant on June 6th of this year.

Anyway, I'm a singer/songwriter and through the whole ordeal I've been writing music that chronicled being sick, and young, and not knowing what was going to happen from one day to the next with my health. I'm release the album now, it's called Butterfly Needles.

There are a few songs from it posted on my myspace page from the album. I would love for you to listen to them. Also, if you enjoy them and you are dealing with kidney failure or considering donating a kidney to a friend or family member, I'd love to send the whole album to you for free. If you really feel like what you hear, you can purchase the album at www.GrindingTapes.org which is the label that is releasing it. It also happens to be run by my awesome friend who gave me his kidney!

Cheers to living donors and abolishing prednisone!

Kindly,
-eli.

www.GrindingTapes.org
www.myspace.com/elijahwyman

p.s. Please only ask for this album for free if you really have a kidney disease or are considering donating. Otherwise I like to sell them. Thanks!

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Subject: abdominal pain


Author:
No name
[Edit]

Date Posted: 06:05:43 11/14/07 Wed

I am a 31 year old PKD patient and am experiencing abdominal pain. Also - I can feel my kidney on my left side by palpating my abdomen. Can anyone else palpate their kidney in their abdomen? I am 5'4 and 126 lbs.

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Subject: Special Juice given to me by my Chiropractor


Author:
Vicki
[Edit]

Date Posted: 02:00:57 10/30/07 Tue

This is my first message on this forum. I've been looking for something like this. I have PKD I've known for years. My mother and her sister and brother are now deceased due to PKD related issues. My younger son has PKD as well. I am from a large family of 9 kids. I believe we've all been checked. Two are confirmed having PKD myself and my sister one of my brothers might have it his Dr. tells him alot of people have cysts and live all there life. I've heard that one before, Anyways I live in the Jacksonville, FL area and I am very interested in starting a support group/Walk for PKD. Also I would like to pass on something my Chiropractor up in VA told me. And that he knew of several patients that actually came off of Dialysis after drinking a mixture of carrot/redbeet/cucumber (juice)all three done by a juicer. Organic is best of course but you can use the traditional in your local grocery store. I have seen great results with my numbers last time I went I was at 80% I'm due for my 6 mo check up here soon in Dec. My GFR had gotten down to 55% before juicing. I'm not saying or promoting any kind of cure. But for me I've searched for many years for something and this has given me a lttle hope. I'm just passing along what was given to me. I can give out his name and # if anyone would like to verify the information I've given here. ALthough I dont think he would appreciate his phone line be tied up. Maybe the person who owns this site can verify what I've written here if need be. This Dr. is very much into nutrition. So when he told me this information I was excited. Now he did not know exacly what type of Kidney disease these people had that caused there kidneys to fail. But my thinking was what do I have to lose it's inexpensive to try with the exception of purchasing a juicer which I got mine at Walmart for $59.00 money well spent. In closing if anyone is in this area and is interested in a possible support group or intrested in starting a walk for PKD please let me know. My e-mail address is vicki.marie@hotmail.com

Thanks

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Subject: Nephew with PKD


Author:
Janet
[Edit]

Date Posted: 13:29:36 10/16/07 Tue

Hi all,
My 24 yr old nephew probably has PKD. I say probably, and this is the reason for the posting here, is that he is under the care of the U.S. Veterans Hospital health-care system.

When he was 16, his family doctor found cysts on 1 of his kidneys and was told to get checked every year. Well, he didn't. A month ago he went in with a hernia, had an ultra-sound, and masses were found on both kidneys. They ordered a CAT scan and his regular doctor wasn't confident enough to make the diagnosis, so he was sent to the kidney specialist. Today he had his appt, and the specialist said he most likely has the disease, but threw in that it could be cancer as well. And then they told him to come back in a year.
My question is this:
Are all doctors this nonchalant about this disease? Is this the kind of disease that doctors don't worry about until it's in the end stages?

My niece is beside herself with worry. I told her to call that doctor back and demand a diagnosis. They had asked about genetic testing and were told the US govt does'nt do that and would have to pay out-of-pocket for it at Stanford. (that must cost a billion dollars!)

I just e mailed my niece and nephew this group's website, along with about 5 others. I made my neice promise me she would contact a group, to help with questions and concerns. Until she or he does, however, I hope it's OK if I try to find out info to pass along.

Has anyone here been treated this way by Veterans Doctors? Is this normal? Any suggestions on how to get a proper dianosis?

Thank you very much,
Janet

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Subject: my e-mail


Author:
Aprill Elston
[Edit]

Date Posted: 01:12:47 10/14/07 Sun

I forgot to include my e-mail address
roozhone@yahoo.com

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Subject: update


Author:
Aprill Elston
[Edit]

Date Posted: 01:07:58 10/14/07 Sun

I'am desperate to get back to my life and refuse to accept this disease as the defining characteristic of my life. So, I have spent a great deal of time reading/researching and being my own case study. I have read many books and just as importantly kept a health journal - documenting how I feel, what I eat, daily activities and things of that nature. I also began a vegan diet due to the mounting literature that pointed out the vital roll A PROPER diet plays in our overall well-being. Heres WHAT I KNOW.
First, I should tell you that since my last entry my liver has grown - I am being placed on the liver transplant list. My liver is down in my pelvic area and occupies roughly 75-80 percent of my abdomen, and is LOADED with cysts. Childbirth tickles in comparison to the pain I sometimes feel. I'am always experiencing some type of pain so in turn I'am always "on something". Being "drugged up" so-to-speak is not conducive to being an active parent, working, driving, walking - living! However, I simply REFUSE to not live my life. I end up suffering from the early part of the morning 3-4 a.m. to anywhere from 12 noon or 3-4 o'clock p.m. Somedays its an all day affair. This happens because I decide - if I'm not experiencing any flu-like symptoms - to do normal everyday things. For Example, too much stair climbing means a whole lot of pain the next day. Too much walking also means trouble the next day.
WHAT I KNOW is that 1) a person with Polycystic Kidney and Liver Disease (one, the other, or both such as I) NEEDS to pay close attention to what they eat. 2) Find your "peace"! - mine is music. and 3) Surround yourself with information; I have even found very helpful information in a cancer cleansing book. Know exactly what you are dealing with so that you can help your physicians deal with and treat your condition.
I have so much more information: personal stories and findings. I am open to e-mail from someone else that is dealing with this, perhaps we can share and help one another.

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Subject: Re: Tolvaptan or OPC 31260


Author:
Joe
[Edit]

Date Posted: 19:17:08 10/09/07 Tue

>Is there anybody aware that Otsuka a Japanese
>pharmaceutical with branches in US and Mayo clinics
>are trying to develop a new drug named Tolvaptan that
>could help people like us with PKD? According to my
>understanding this new drug could reduce the cysts and
>stop their reproduction, but at this stage it is in
>experimental phase, I beg you my friends that if this
>drug results positive and goes to the FDA for approval
>write to them for a quick approval since it could save
>many lives, thanks and god bless you!!!!!!

Reply;

Please check the PKD Chaity website for info.
Also, the PKD Foundation website is very good.
Tolvaptan is marketed by Otsuka Pharmeceuticals. This is another line of contact

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Replies:
Subject: PKD research


Author:
volunteer
[Edit]

Date Posted: 18:28:41 09/15/07 Sat

The Mayo Clinic is conducting a study on hypertension and PKD. Perhaps participation will help us all? The Cleveland Clinic is participating in the study. Contact the HALTS study coordinator at the Cleveland Clinic by calling 216-444-4680.

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Subject: Being labeled High Risk


Author:
No name (Have been preparing myself)
[Edit]

Date Posted: 23:06:01 08/14/07 Tue

Hello,

I suspect I have PKD. I have not confirmed it yet, and I will get to the reasons below.

I am 40. My father has PKD. He is about 58. He received a transplant about 5 years ago. At about 40, he had to have his kidneys removed. He has dealt with infections, low-power, days in the hospital, etc, but is doing well overall.

My father and I were separated for more than 25 years. In 1999, I met him again. I mention this to clarify why I am looking into PKD now. I have only known him for 8 years.

After researching his disease, I determined that I could be affected. So I watched my symptoms and dealt with the worry and such. Once, back in Feb. 4, 2002, my urine was coffee-colored for a day. Then nothing else happened for a long time. It happened again last month. Other symptoms that have occurred sporadically over the years: have had shooting pains that seem to run from my bladder upward into my body; my BP is slightly elevated at about 125/90 or so regularly; I have been unexplicably feverish (hot, achy, low-power) for a day, and seem to get better the next day; I occasionally have feelings of a white hot needle being pushed into my right kidney and also into my right inner hip joint.

Based on what I have learned over the years, my symptoms could be very early. But, my question is not for a diagnosis.

I am concerned about being labeled "high risk". I have heard many stories from co-workers, family, etc, afflicted with various conditions, suddenly finding it difficult to get assistance from insurance and such. The term "pre-existing condition" pops into mind, especially when changing insurance companies. Looking at my father, he was partially supported by his wife's insurance and by public programs (Medicare?)(at least when he was on dialysis).

My question to the forum is, what can I do now, to prepare for my eventual diagnosis, if I turn out to be positive and it's official? What are some of those things that some of you wished you had done early? And, is my caution with merit or am I worrying too much because it is too early and assistance is not so elusive? If my health were to cause me to lose my job, would it be harder to get insurance again?

Just so you understand me, I am a problem-solver by nature, and want to be sure I take the best steps I can. I have somewhat accepted what might happen to my life, and am trying to be ready. However, I don't expect for life to stop --- not at all.

Thank you for any input.

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Subject: hemorrhagic liver cyst


Author:
No name
[Edit]

Date Posted: 20:14:18 08/05/07 Sun

Has anyone else had one of these? I got a weird and rather severe pain on the right at the waist, which was worse when laying down, and radiated to my right shoulder. I couldn't sleep at all. No other symptoms except pain - no fever, etc. My doctor ordered an MRI which revealed a 6 cm cyst filled with blood on my liver. The dr. said that the shoulder pain was because the cyst was pressing on the phrenic nerve. I've had liver cysts ever since I was diagnosed with PKD 7 years ago, but only had one other episode of severe abdominal pain that was never diagnosed because it got better on its own. This one got better over a few days, and I am not now needing pain meds, but I still have pain when I sneeze. Has anyone got an idea how to prevent this in the future? The doctor just treated the pain and was relieved that there was no infection.

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Subject: best cold medication?


Author:
No name
[Edit]

Date Posted: 16:21:08 07/24/07 Tue

Anyone know what a good over the counter cold medication would be if you have PKD? What about an over the counter pain medication?

thanks

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Replies:
Subject: PKD & Renal Artery Stenosis (FMD)


Author:
Vicki
[Edit]

Date Posted: 10:30:45 07/12/07 Thu

Hi. I'm 46 and was diagnosed last year with both ADPKD2 and renal artery stenosis caused by fibromuscular dysplasia(FMD). The doctor diagnosed FMD because I do not seem to have blocked arteries anywhere else and because I'm under 50 and female. The only PKD symptom I've had so far is hypertension and my family history indicates that I probably won't have any problems until much later in life, if at all. As for the FMD RAS, I had an angioplasty done on the renal artery last year (no stent - don't need one if it is FMD). Between that and a 30 lb. weight loss (on purpose), my blood pressure meds have been reduced slightly.

Having both of these conditions seems to be rare and unrelated according to the research I've done on the Internet. The only articles I can find are about patients in their 70s or 80s who have both, or very young children. Does anyone else out there who is middle-aged have both diseases?

Also, my great-grandmother died of a stroke at the age of 40. She had PKD but was in her 8th month of her 8th pregnancy. Is it possible that she either had a brain aneurysm that caused the stroke or the same form of renal artery stenosis that I have (an aneurysm was forming just after the narrowing of the artery)? I am going to mention it to my kidney doctor next time I see him.

I am one of seven children and except for one brother who died last year of unrelated causes, I am the only one who has been diagnosed with PKD. I am happy about this -- I wouldn't want any of my siblings to have it, but the only other people in the family who have it (my mother and a cousin) don't like talking about it. I'm hoping you guys will be willing to talk.

Anyway, thanks for listening!

Vicki

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Subject: Getting Closer to Dialysis


Author:
Andrea
[Edit]

Date Posted: 10:27:15 07/08/07 Sun

I've had PKD for about 15 years and in Jan. 07 I reluctantly registered on a transplant list. I say reluctantly because I was in denial that anything was really wrong with me. When I registered my creatnine level was 3.9. Within the last three months my levels are now at 5.2. My doc seems to be very lax about my levels and everything I've read says at my function percentage, I should be getting ready to have an access put in for whatever type of dialysis I would prefer. Am I just being paranoid? I really like him but wondering if I should be more pro-active regarding my PKD? I’m also worried because I know I should be thinking about my future and start to do some things I may not be able to do when I go on dialysis, but again, I still think I’m in denial. Is that normal?

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Subject: SEVERE FULL LEG CRAMPS AND SWELLING IN LEGS MORE IN THE RT LEG


Author:
MELANIE S. (DEPRESSED AND NO WHERE TO TURN)
[Edit]

Date Posted: 03:24:36 07/04/07 Wed

Hi, I have had PKD for 27 years i am 45 and have no insurance and have started having small urine output and severe full leg cramps with swelling in both legs and more in the rt. My blood pressures are getting very high and no meds am i on... I guess I'm asking is, could this be the kidneys starting to fail? I had 70% function 10 years ago and have not had treatment since. Not to many doctors for free out there lol My husband is on PD and i am his fulltime caregiver and my body seems to be giving out on me. I am tired all the time and can not sleep anymore.I have gained 40 lbs in the last 3 months. Just wondering if anybody else went threw this?

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Subject: 4 year old son with ADPKD


Author:
amazinw3 (scared)
[Edit]

Date Posted: 20:16:05 06/25/07 Mon

Hi, My 4 year old son found out he had adpkd last July 06 just by falling and bursting a cyst. The doctor assured me that i wouldn't see any problems with this disease until he was in his 40s its been almost a year and i am scared because three months ago the cyst on his right kidney where just over 1 cm now the biggest one is almost 3 cm and the other one is 2 cm his kidney is only 7 cm big and the other one has 4 cyct that are about 4 cm all together and that kidney is 8 cm big, this week they put him on an ace inhibitor for protein in his urine does any one know how long i am looking at before he needs further help?

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Subject: Bilateral Ureteral Jets


Author:
nancy (confused)
[Edit]

Date Posted: 12:43:23 06/14/07 Thu

Has anyone heard of bilateral ureteral jets and a small urinary bladder postvoid residual?

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Replies:
Subject: LOTS OF PAIN!!!


Author:
Shannon
[Edit]

Date Posted: 12:57:26 06/12/07 Tue

Hi, I am 38 yrs old. and over the last several years my right kidney has caused so much pain. they have tried laser and drainage of the cycts. But it did not work.. I have secondary depression because of the pain. The levels are from a 7-10 almost everyday. I have been on every pain med out there. Does any one else have this problem? If you do what helps you with the pain.

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Replies:
Subject: Blood in urine


Author:
Robin
[Edit]

Date Posted: 11:44:08 06/06/07 Wed

i have known i have pkd for about 5-6 years. no real problems with pain or creatin(sp) tests etc. 9 days ago i had severe pain in low back and blood in urine. i went to the hospital and since then was released to my dr( i was on vaca) to await more tests. My question... the last time this happened the blood cleared up right away but this was 10 days ago and still bleeding. i was wondering if this could just be from the hematoma? my doc is waiting for this to clear alittle before doing another ct scan to check a mass that seems to have him concerned. thanks.
robin

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Subject: Halt PKD study looking for people - was e-mailed this and am spreading the word


Author:
Beth
[Edit]

Date Posted: 17:03:59 06/05/07 Tue

I am the study coordinator for the Halt PKD Study at the University of Kansas Medical Center. The study is sponsored by the NIH, and the principal investigator is Dr.
Winklhofer.

The study is for people who have PKD and high blood pressure. We are seeing if taking a combination of an ACE inhibitor and an ARB (both antihypertensive medications) is better than taking an ACE inhibitor alone at stopping the progression of PKD. The ACE inhibitor and the ARB that we use are FDA approved.

Depending which arm of the study a person qualifies for, the study lasts 4-6 years. The visit schedule is approximately every 6 months for the first 2 years and then yearly. We supply all the blood pressure medication, a home blood pressure cuff, labs, and doctor visits.
Unfortunately, we are not able to compensate for travel expenses.

If you or anyone you know might be interested in contributing to the body of knowledge for PKD research, would you please have them contact me. I would be happy to answer any questions they might have and get them started in the Halt PKD study.

Thank you,

Pam Lanza RN
planza@kumc.edu
University of Kansas Medical Center
913-588-8983

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Subject: liver cysts


Author:
No name
[Edit]

Date Posted: 19:34:42 06/01/07 Fri

I have a new Primary Care Provider who is particularly "test happy" and have recently had a liver ultrasound because she thought my liver was too big. Well, I knew before that I had liver cysts, but it seems this time the cysts are bigger than ever, and the largest appear to have blood in them. The ultrasound report says "innumerable heterogeneous hepatic cysts". I have no pain from these cysts, only occassional back ache in the area of my left kidney only (which my neph believes is because the cysts are so large they are putting pressure on structures internally). Should I be at all concerned? I didn't think I needed the ultrasound in the first place, because I already knew I had lots of cysts. I've been diagnosed with PKD for about 6 years, I'm 49, and my kidney function is normal. Also, she is concerned about leakage in two heart valves, the mitral and the tricuspid. Should I be concerned? Again, no symptoms, and the ECHO indicated that my heart function was within normal limits.

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Subject: total exhaustion and all over body aches


Author:
No name
[Edit]

Date Posted: 12:20:16 06/01/07 Fri

Hi. I have known that i have pkd for about seven or eight years. I am now at 25% function and am a lot of meds for blood pressure and othet complications. I also take 60mg of long acting morphine once a day but still ache all over and am cold all the time. I would have thought that taking the strong medicine that I wouldn't ache all the time. I have stopped doing a lot of things that I used to because I am so tired and stiff it is hard to move. Does anybody else have this problem or it just me. Does anyone else have trouble with being cold
even when it is hot outside and aches and pains all the time.

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Replies:
Subject: fetal polycystic kidneys


Author:
viki
[Edit]

Date Posted: 20:48:49 05/30/07 Wed

i am 26 weeks pregnant and ultrasounds have recently shown that my unborn child has polycystic kidneys.i would like to hear from anyone that has dealt with this,thankyou

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Replies:
Subject: Blood in Urine


Author:
David
[Edit]

Date Posted: 06:02:42 05/29/07 Tue

Hi Im a 40 yr old guy with PKD, recently started to have some swelling (cycts growing). No other complications to date, until yesterday when I started peeing blood. Im guessing a cyst broke, how long should I go before the blood should stop? I've gone 6 times and its still there.
I dont have any systoms, and no pain.
Should I go straight to a doctor, or give it anotherr day or so?
PS I dont have insurance, and so I dont want to have to go to a doctor unless neccessary.
Thanks for any help
-David

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Replies:
Subject: When will PKD treatment be available?


Author:
Krista
[Edit]

Date Posted: 12:05:31 05/15/07 Tue

Hi, everyone. I am 24 years old and have ADPKD (as does my father, brother, aunt, etc). I found out a few months ago that I had inherited PKD, and my father, who is 67 with a transplant, says that I will have options that he never had. I hope this is true. Does anyone know when the earliest date of PKD treatment will be available? For example, Tolvaptan and other drugs like that?

I feel like we are so close to finally getting treatment, but it feels so far away too!

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Replies:
Subject: drug spams


Author:
No name
[Edit]

Date Posted: 10:45:05 05/14/07 Mon

several of the drugs that have been spammed are detrimental to people with poor kidney health.

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Replies:
Subject: Just learning about PDK


Author:
Teri (in alot of pain 90% of the time)
[Edit]

Date Posted: 13:46:01 05/10/07 Thu

I am 38 and just found out that I have PDK. I am one of the lucky ones that has no family history and had a gene mutate. I am trying tolearn all I can about PDK. The Dr I was refered to doesn't know that much about PKD.If anyones knows where I can find a GREAT DR please let me knoww. I live in WV and am willing to travel to find the care and treatments that I need. Thanks for all your time.

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Replies:
Subject: PKD and Gall Bladder Surgery


Author:
Diane
[Edit]

Date Posted: 21:27:57 05/01/07 Tue


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Replies:
Subject: trading a chair one day a week


Author:
No name
[Edit]

Date Posted: 16:17:13 04/25/07 Wed

Would anyone be interested in trading a chair on a friday afternoon or a saturday in Rochester, New York for a chair in Syracuse, Watertown or Oswego, New York???? I'd be so grateful!

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Subject: what about the other type dialysis? the one that goes in the belly?


Author:
jimmy
[Edit]

Date Posted: 12:06:01 04/25/07 Wed

once the shunt is healed over, how many sticks can that handle?
wouldnt the in home one be better in some cases?
ive heard bad about both and u dont knbow who to believe.
i read at article that because of the high cost involved that most on site hemp units reuse 80% of the items used in therapy including many aids patients.. could this be true and most ,almost none are under federal supervision..
23% in america die from unspecific causes compared to on 11 % in most other countries, all because of something. its not peoples imagination. this stuff is for real. something isnt adding up on all this because its too often about money. all dialysis clinics are under state supervision and most of them have no clue what is good or bad. almost all clinics are privately owned because they knock down the bucks on this. :(

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Subject: what type dialysis is best?


Author:
jimmy
[Edit]

Date Posted: 17:02:03 04/24/07 Tue

what type dialysis is best?
i have heard bad about both but does anyone know anyone that is actually on it?

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Replies:
Subject: almost left a short novel about me and my PKD


Author:
~chatty~
[Edit]

Date Posted: 12:23:50 04/23/07 Mon

Almost did, but I erased it.

Basically, I didn't know I had it (PKD) since I got it from my father and my parents divorced and stopped having contact when I was 3. I had a hemmoraged brain aneurysm when I was 25, they found out the reason for my anuerysms (4) was the PKD. Before then I didn't know what either were. I've gained weight since getting out of the hospital (about 10 years ago) but especially in my mid section. About 7 years ago I was told I had 70 percent function in one kidney and 30 in the other. My husband wasn't with me when I had the aneurysms and found out I had PKD. I don't think he really knows what he or I am in for. He doesn't think it would effect my mid section but I just looked at a photo on the internet of a PKD kidney and figured I would ask about it here.

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Replies:
Subject: BETH ... what is your status now?


Author:
jimmy
[Edit]

Date Posted: 01:15:50 04/20/07 Fri

beth, you said they turned you down? and you think why was the reason?
i know this is personal stuff but it seems we are all in this together.
and why has none of my doctors even mentioned this drug?

:(

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Replies:
Subject: message board re: child to parent donors


Author:
aron
[Edit]

Date Posted: 19:14:04 04/14/07 Sat

hey all. my mom has pkd and i'm thinking about giving her a kidney--i'm 28 she's 60. a few months ago i was on a message board that dealt primarily with children who donated to their parents. i can't seem to find it now, and i would really like to convince my mom that it's common for children who have not inherited the disease to give a kidney to their mom or dad. anyone know of message boards that deal with this issue? in addition, any input from people on here would be appreciated. it seems like there are two schools of thought...some say how could my mom ever let me donate to her, while others say of course she should accept assuming i'm healthy (ultra sound negative, ct scan pending). anyways thanks in advance for your help!

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Replies:
Subject: Tolvaptan ?


Author:
jimmy
[Edit]

Date Posted: 17:34:15 04/13/07 Fri

the trials for Tolvaptan ? how can someone get on this trial?
is it still open? my doctor never mentioned it at all and basically nowhere other than here. surely it helps or people would say something negative. so far it seems to help. am i right?

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Replies:
Subject: Tolvaptan Trials


Author:
Deidre Siegel
[Edit]

Date Posted: 11:01:34 04/04/07 Wed

I started the Phase III of Tolvaptan on March 1, 2007.
So far, other than being really thirsty and urinating like Niagra Falls - I feel totally fine.
Would love to hear from anyone that's in this trial.

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Replies:
Subject: AIMEE.. do you know anything about the chinese tea?


Author:
jimmy
[Edit]

Date Posted: 18:14:39 04/03/07 Tue

aimee, have you heard anything about this herbal tea mentioned earlier? why has no one else mentioned this?
it seems maybe its a hoax..
:(

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Replies:
Subject: Chinese Herbal Tea May Lead to Treatment for PKD


Author:
No name
[Edit]

Date Posted: 10:52:06 03/08/07 Thu

Anyone know where to find this tea?

http://www.yale.edu/opa/newsr/07-03-05-02.all.html

New Haven, Conn. — A treatment for polycystic kidney disease(PKD), a leading cause of fatal kidney failure worldwide, has been identified by a research team led by Yale biochemist Craig Crews, according to a report in the Proceedings of the National Academy of Sciences.

Over 12 million people worldwide suffer from PKD, a genetic disorder that causes uncontrolled growth of cells lining tubules in the kidneys, and results in the formation of many, large fluid-filled cysts in the kidneys.

“Unfortunately, aside from kidney transplantation, there has been no cure for PKD, nor has there been a suitable drug treatment to slow its progression,” said Crews, associate professor of chemistry, molecular, cellular & developmental biology and pharmacology. “We hope that is about to change,” he said.

The mesh of Traditional Chinese Medicines (TCMs), current advances in chemistry and fundamental processes of developmental biology and health are a research focus for Crews. According to him, a roadblock in the path to TCMs as a source for new medical treatments is lack of understanding the biology and chemistry of how they work.

Triptolide is a potent, biologically active compound isolated from the medicinal ‘Thunder God Vine’ Tripterygium wilfordii Hook F. The TCM tea Lei Gong Teng made from this plant has been used for centuries, as a therapeutic against cancer, inflammation, and auto-immune diseases. Crews and colleagues showed that triptolide causes cell growth arrest in certain cell types.

Normal kidney tubule cells have a built in switch for regulating their growth — two proteins, PKD1 and PKD2, located on a bristle-like cilium that bends in response to fluid flow across the cell. During kidney development, cells destined to line a kidney tubule grow and divide until the tubule is formed, as sensed by fluid flow in the tubule. Fluid flow bends the primary cilium, giving a signal to stop cell growth. PKD is caused by a mutation in the PKD1 or PKD2 gene causing the cells to miss the “stop growing” signal, allowing them to keep growing, and thus generating a cyst.

In collaboration with Stefan Somlo, M.D., Chief of Nephrology at Yale School of Medicine, who discovered the PKD2 gene, triptolide was tested in a mouse model of PKD. Both fewer and smaller kidney cysts formed in mice lacking PKD1 when they were treated with therapeutic amounts of triptolide.

“Our research shows that triptolide, an active ingredient of the TCM Lei Gong Teng, markedly decreases cyst formation in a mouse model of this most common genetic lethal kidney disease,” Crews said. “Our results offer a novel therapeutic approach to this deadly disease and highlight the potential of TCM as pharmaceutical sources.”

Other authors on the paper were Stephanie J. Leuenroth, Dayne Okuhara, Joseph D. Shotwell and Zhiheng Yu at Yale and Glen S. Markowitz at Columbia University. The research was funded by National Institutes of Health and by a postdoctoral fellowship from the American Cancer Society.

Citation: Proceedings of the National Academy of Sciences (early online March 5, 2007)

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Replies:
Subject: AIMEE i didnt know you are on the trial


Author:
jimmy
[Edit]

Date Posted: 19:54:44 03/05/07 Mon

hi aimee, do you feel this medicine is working?
is it possible that i might stay at my current 20% ?
2 weeks ago i went to a new primary and told her my recent blood work and she told me to find another nephrologist and it seemed to me that she was in doubt i might have to go on dialysis so soon. but just reading my blood work how can there be any doubt?
:(

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Replies:
Subject: PKD and heredity


Author:
James
[Edit]

Date Posted: 23:30:26 03/02/07 Fri

I'm male and 40 years old. My father died of PKD at age 44. His father also had the disease. I don't have PKD but is it still possible for me to pass it on to my children considering that my father and grandfather had it?

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Replies:
Subject: For anyone in the Tolvaptan Study - how's it doing?


Author:
Beth
[Edit]

Date Posted: 17:14:20 02/28/07 Wed

I got a letter from the Mayo clinic that they're starting the phase III trial of the study and wanted to know how it worked for people in phase II.
Did your function get better, stay the same, get worse? How were the side effects? I just read the consent form with all the listed scary potential side effects in it so I'd like to know if you thought it was worth it. Any info greatly appreciated!

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Replies:
Subject: Blood work


Author:
Sue
[Edit]

Date Posted: 15:14:46 02/14/07 Wed

I have PKD. I have no insurance, I work in a clinic and they are willing to charge me at a sliding fee for blood work. What exactly is the type of blook work I need to check for kidney fuctions? CBC?

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Replies:
  • Tests -- Aimee, 19:52:14 02/15/07 Thu
Subject: awaiting ultra sound


Author:
No name
[Edit]

Date Posted: 13:37:49 02/13/07 Tue

About a week ago I was having my early morning coughing spell and coughed so hard that I thought I pulled something on my side. It was a sudden pain in my side. After about four days of side pain, I started thinking about the location and realized it was about the same area as my left kidney. I also remembered my dad had pkd. I had an ultrasound about 20 years ago when I was about 30 and they found nothing.

But the more I read about the disease the more I worried.
To make a long story longer, .. went to the doctor, he did a urine test and found no blood or infection. In june I had a blood test done and that all looked normal as far as creatitine, etc. I urinate maybe four to five times per day and two to three times at night. 52 years old.

I had an ultrasound done today, thinking it would put an end to my worrying, but they told me that it would have to be looked at by a radiologist and the doctor, and they would get back to me in a couple of days.

Anyway, the side/back pain is almost gone, icy/hot pads really seem to help.

I am wondering, just how much pain in the side (flank) would indicate a problem and does it go away if you have pkd. I mean I had pain but it was not intense, unless I sneezed , then it was pretty bad. The doctor said he thought it was a back problem.

Would it be possible for this not to show up 20 years ago and now manisfest itself, or do symptons show up pretty early?

any thoughts?

I hate this waiting!

jack

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Replies:
Subject: Re: what is the size of a normal kidney?


Author:
Gary Bright
[Edit]

Date Posted: 13:36:23 02/09/07 Fri

>I need the normal kidney sizes in a chart by age if possible. Does anyone know where I can get that?
Gary
>>Just wondering if anyone out there knows what size
>>normal kidneys are.
>Mel,
>The size of a normal kidney is approximately the size
>of your closed fist. Hope you have a safe and
>uneventful pregnancy. Ginger

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Replies:
Subject: AIMEE


Author:
jimmy
[Edit]

Date Posted: 06:45:54 02/04/07 Sun

aimee, thank you,you are always so helpful on here, it is appreciated.
since i am now at 20% i feel the same as i did one year ago at 30%, should i expect it will continue going down?
how bad is dialysis?
how long might most people stay on it?
i think over the next weeks i should get into my best mental state as possible.
i feel this is a death sentence tho.
but as long as i have had this it seems i would i have been prepared.
thank you
,jimmy

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Replies:
Subject: PKD ,im now at 20%


Author:
jimmy
[Edit]

Date Posted: 15:48:49 02/01/07 Thu

hi everyone, i went back to nephrologist today and my blood test shows im down to 20% function and he told me to began to prepare mentally and emotionally to get on dialysis.
i was hoping to delay this,.
any advice will be appreciated.i just dont know what to expect, i feel kind of down about it really.
thanks,
jimmy

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Replies:
Subject: THANK YOU SO MUCH AIMEE!!


Author:
Donna (Downotout)
[Edit]

Date Posted: 04:35:37 01/29/07 Mon

Thank you Aimee for your kind reply!
I am thrilled to have 'been heard.' I appreciated your caring, and your swift response..I am greatful, and thanks to you and this site, I really do not feel ALONE now. God bless you and all of you out there.
Fondly, Donna

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Subject: THANK YOU SO MUCH AIMEE!!


Author:
No name
[Edit]

Date Posted: 04:25:48 01/29/07 Mon


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Subject: just found your messageboard! thank GOD


Author:
Donna (downotout)
[Edit]

Date Posted: 01:01:30 01/28/07 Sun

Hi all! Just discovered this site and I truly feel blessed. I've been 'alone' with my pain, and symptoms for many years; even though I've been diagnosed with PKD and PLD for a long time. I have also been diagnosed with IGM nephritis, after open-renal biopsy 20 yrs ago, and pkd was dx 10 yrs ago. I am 54 and I'm at 30% now. I am a breast cancer patient/survivor? since 2000, a mother of 3 grown children(in their 30's) grandma of 5; yet -- I FEEL SO VERY ALONE until now, reading all your replies. My bloated body, fat belly, and pain, pain, pain, from my very enlarged kidneys and liver, many large cysts on all, fatique and insomnia, and chronic kidney failure symptoms always, seem to be getting me down these days. I have learned that I will have to look into dialysis, but because of my IGM nephritis, I will not be able to have a transpant. My mother died of this PKD and cancer; and even tho my kids should realize the gravity of my illness, I feel like they don't even 'see' me in this reality, as much as you all do.I feel like finding an answer for my pain, more than anything..I live in St.Louis, any advice on pain center?

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Replies:
Subject: Re: kidney size and blood tests


Author:
Diana Goldenberg (:()
[Edit]

Date Posted: 09:57:13 01/23/07 Tue

>hi, do any of you know what are the sizes of normal
>kidneys? also, what are the normal readings of
>creatine and bun of blood tests? thanks!

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Replies:
Subject: Re: PKD.com


Author:
Peggy
[Edit]

Date Posted: 10:46:10 01/14/07 Sun

I'll be donating one of my kidneys to my husband in the next month or two. does anyone out there have experience with handling the recovery where both members of a couple have had surgery like this? we have a large support network, but i'm not sure how to organize it... thanks. peggy

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Replies:
Subject: is anyone still in a trial with tolvaptan


Author:
Tina
[Edit]

Date Posted: 06:33:13 01/12/07 Fri

I was diganosed november 2006 i am 46 years old
i have not broke the news to my 3 sons yet they are 22,27 & 28 I plan on telling them soon this year, any suggestions on how to break the news. Im very upset trying to break the news to them & trying to deal with it all my self.

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Replies:
Subject: pkd


Author:
No name
[Edit]

Date Posted: 09:39:16 01/09/07 Tue

Hello...I am hoping someone can help with this problem. My son was diagnosed with PKD at 17 yrs old, he was in a minor accident and recieved a blow to his lower back, and later that same evening began to see blood in his urine. After a trip to the ER we were on a roller coaster ride. His kidney was removed after a series of testing. When removed we were told his kidney was the size of a football and covered in cysts. He was very lucky to be alive. We were at that time advised to have all other children tested. I have a six yr. old daughter from a second marriage. Her pediatrician at the time had an ultrasound done and said that everything looked fine. That was when she was less than a yr old. The question I have is should she be tested yearly? We have recently moved and I have not been able to establish her with a new pediatrican as of yet. We now live in Wyoming and it a long distance to reach a pediatrician office. She has seemed to have lots of fevers and just sick in general, ya know, getting everything that goes around......The general practitioner that I took her to here didnt seem all that concerned about anything, or the kidney isssue with her brother. If anyone has any thoughts or information on this situation ....Please email me at rhondajacobs977@hotmail.com

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Replies:
Subject: kidney


Author:
No name
[Edit]

Date Posted: 18:16:03 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

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Replies:
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

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Subject: pain pump


Author:
No name
[Edit]

Date Posted: 04:54:19 12/13/06 Wed

My nephrologist is talking about doing a procedure to implant a pain pump into my abdomen to keep pain medication going to my kidney to help with the constant pain that I am having. has anyone had this procedure and if so what kind of results have you gotten? I'm kind of scared of this.

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Replies:
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