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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: Kidney infection with normal urinalysis?


Author:
Jaye Taylor
[Edit]
Date Posted: 11:41:07 08/05/04 Thu
Has anyone out there ever experienced having a kidney and/or cyst infection in the presence of a normal urinalysis? I have been feeling poorly, as if I am generally ill, for quite some time with frequent and cloudy urine. When my primary doc did a urinalysis, it was completely normal. She said that it is impossible to have a kidney and/or cyst infection that does not show up as abnormalities in the urine. I have heard from other folks that this is not the case - that it IS possible to have such an infection even though the urinalysis is normal. Does anyone have any information to share? Thanks!
Replies:
Subject: Hi. New PKD person


Author:
Andrea
[Edit]
Date Posted: 12:37:16 03/22/05 Tue
Just wanted to say hello.

I am 32 and was diagnosed with PKD about a month ago. My kidney functions numbers are still normal. I was diagnosed because I had high blood pressure and was sent to have a kidney ultrasound. Blood pressure is under control now.

My mom also has PKD so I was not surprised I had it. She is 57 and is now starting to get tested for a new kidney. They are saying she will need it in about 3 years.

I just wanted to let everybody know, particular those of you that are younger that my mom has had a very great life and she still is leading a great life. She comes over to help with my daughter, she goes to football games, participates in church activities, etc. She has known she has had this disease for about 20 years and has not let it get her down. She does get tired and has back pain from time to time but she loves life.

I am planning on seeing a nephrologist this summer and if my kidney's are still in good shape, will consider having another baby. My daughter is my joy and if she has this disease I believe they will have better treatment for her or her possible siblings.

Take care and I look forward to getting to know you guys,
Andrea
Replies:
Subject: PKD and fibrocystic breast disease


Author:
Sharon
[Edit]
Date Posted: 16:48:36 03/27/05 Sun
I was wondering if any other women out there have been told there is a link between PKD and fibrocystic breast disease? I have had many breast cysts in the last three years. Just recently changed family doctors and when I went in for my yearly check up he commented that it wasn't suprising that I have both. I had never really made any connection between the two and am not totally convinced there is one, but I'm just wondering if anyone has any information or input on this.
Replies:
Subject: Hi.NewPKD person


Author:
Anne
[Edit]
Date Posted: 04:49:09 03/26/05 Sat
Andrea, what a joy to read your posting tonite.I too feel like you do.I am 58 and had it longer than I have known(rather cared to find out) about.I have two children, grown up now, only one has it and she knew many years ago about it as was born with other renal problems.I do pray and hope your child/children will not get it. and good for your Mum, glad to see it has not gotten you down.Anne
Subject: treatment


Author:
CJ
[Edit]
Date Posted: 20:28:06 07/20/04 Tue
Just wondering if anyone knows if there has been progress in developing drugs to halt the growth of cysts in the kidneys. Seems like I read something several months ago but haven't seen or heard of anything else. How close is research getting in curing this horrible disease?
Replies:
Subject: Polycystic Kidney disease


Author:
Yolanda Etosh Cruz
[Edit]
Date Posted: 22:48:23 03/18/05 Fri
Just about 4 weeks ago am been diagnois with pkd, I did not know what pkd was, until friend and co-worker look it up on the computer internet and several doctors explains it me in the hospital, this explain the back pain and abdomin pain I was recieving, I just cannot understand, why the dr's did not find this within the lyr, I've going to the er hospital
for some reason or another. I try finding out if my mother know of anyone within our family had been diagnois with same disease, she had stated that my uncle have kidney stone as child, now, my brother has kidney failure and some how I want to beleive that this maybe from my father side in which we both inherited something different and somewhat the same, this has sadden me to know that I cannot help my brother, but just keep praying and hoping, I understand and expected what is happening with me and pray that my daughters do not suffer this as well, or maybe my grandchildren whom are not even here but in god good grace. anyway here for those out there whom have the same PKD keep the faith, an for any Dr's whom read this can you send me some more information,in just
weeks my condition has change, my kidney has gotten larger then its even been in its 4 weeks ago,. I've have an appt. with a Kidney forensic specialist, but that on the 28 of march, can you send me something now.

With sincere thanks, YEC
Subject: just lots of cysts or PKD?


Author:
Anna
[Edit]
Date Posted: 07:41:56 08/13/04 Fri
Hi all,

1 month ago I was diagnosed with lots of cysts in both kidneys. (I mean, hundreds of them. Smallers are 1 mm, biggest is 2,5 cm now.) Doc said I had multicystic kidneys, and it is not a bad diagnosis, no transplant will need. Kidney function:normal. No high blood pressure. No oedema. Urine: negative. Negative family anamnesis.
Kidney sizes are in normal range.
What do you think? Please, answer, If you have advice or anything!
Love: Anna (Europe)
Replies:
Subject: polycystic kidneys


Author:
diane
[Edit]
Date Posted: 18:15:47 09/04/04 Sat
HALLO my name is Diane I have had PKD for 17 years but I was born with it my dad has it or had it as he has had a transplant also his dad and a few more generations also his sisters one is still alive at 70 my children also have it and when thinking about that I feel like crying .. my stomach is getting bigger by the day and every week someone says whan is the baby due and even the doctor at the renal unit said this also. When you thing this disease is bad just think it ISNT and enjoy your life my aunt who died recently had PKD and had good quality of life and died at 73 if anyone wants any help about the disease please get in touch bye for now.
Replies:
Subject: Just Another College Student


Author:
Beth
[Edit]
Date Posted: 17:59:45 03/05/05 Sat
I just want to say that it is nice to know that there are other people out there that are dealing with the same things that I am. I am 19 and was diagnosed a year ago with PKD. Both of my siblings and my mother have the disease. I have watched my mother go through so much and she is my inspiration to keep going with this disease no matter what. She always told me that if she never gave up, then her girls would see the courage she had to deal with the disease and that courage would continue on with us if we should have the same situation. My oldest sister has twin two year olds and found out she had the disease when they were only 7 months old. My other sister is handicapped and mentally retarded with the disease. This is always a concern of mine due to the fact that should she need a transplant, she would more than likely never recieve one because her position is not seen as beneficail to society. My father has watched my mother go through what she has knowing that he could have donated a kidney to her, but he is saving his incase any of his daughters should need one. My mother had a transplant 12 years ago and it has finally decided to fail. She is on dialysis now and also on the transplant list. We are hopefull, but I am frightened. I was 8 when she had the last one and I really didn't understand what was going on. Now I just wish I was that innocent 8 year old again. Having this disease has changed my life. It makes me cherish everyday that I have with the people around me. I am currently a junior in college and just like every other college kid on campus. I always tell people that start to feel bad for me when they find out I have this disease, that I would rather have this disease, then be told I have cancer. I have one of the best doctors and I trust him. He gives me hope that I will have a great future and live a long life. He is always telling me not to be afraid of having children someday, because there might be a cure by then. I told myself a long time ago that if I found out that I had this disease before I had children I would chose not to have any of my own. I would not want to put this disease into another family, I want it to stop with me. Bottom line I have hope and I keep going everyday and I hope that by running across this one night and not meaning to, that I can give at least one person a little bit more hope or reason to not give up or give in to this disease.
Replies:
Subject: aneuryms


Author:
No name
[Edit]
Date Posted: 10:29:58 03/07/05 Mon
I am 33 years old and i have been suffering from migraines for many years. about 7 years ago my doctor sent me for a s-scan and they couldnt determine if there was anything in my head because I couldnt use the iodine that is used during the process of scanning because I am allergic to it.
Meanwhile, I have been seen by a few doctors who seem to be hesitant to send me for a c-scan and seem to want to conclude that I suffer from migraines and nothing more. How can I "demand" that a c-scan or preferably an MRI be performed on me, as they have to be authorized by a doctor in order for my insurance to pay for it. My migraines are out of control. I have hot sensations through out my head sometimes and I feel faint. My head is very sensative to the touch and I can only use one certain pillow to lay on, because everything else is uncomfortable. The pain is still there even after I take Tylenol or Advil. I want the doctor to understand that this is my life and I want an MRI performed and not to be labeled with Migraines. THis is a very sensitive issue for me. I do not want to die from an aneuryms because I have 4 children who depend on me. This is why I want to know for sure that these are just migraines. I have had 2 family members (aunt and cousin) who have died from aneuryms. I'd like to hear from someone out there who understands my situation and can advise me. thanks a million..
Replies:
Subject: Friend just diagnosed, here were her symptoms, advice please


Author:
Corn
[Edit]
Date Posted: 12:29:29 01/04/05 Tue
My friend was just diagnosed with PKD. She didn't feel badly, except for being very tired. But her doctor felt this lump and it turned out it was the first sign of the disease.
Her mother has it and is nearly to the point of needing dialysis. I have read (but NOT told my friend) that up to 50% of people with PKD may have kidney failure by age 60.
Please, can anyone give me realistic info on this disease. I am worried sick because she is one of my best friends, a single mother of 5, and a wonderful person. She doesn't need this on top of everything else and I'd like to support her as best I can but I don't want to give her false hope either.
With a grossly enlarged kidney, what treatment options are there and what can she expect? Thanks.
Replies:
Subject: low back pain


Author:
stacey
[Edit]
Date Posted: 11:37:58 01/14/05 Fri
hello, i am 32 years old and i have pkd. i still have full function, creatine level 0.8 and bun a little elevated at 24. I have multiple stones on both kidneys also. I have been having spasms in my right kidney and now i am having low back pain. i had a urinalys done, dr. thought i had a bladder infection, but urine is normal. Has anyone ever had these symptoms before, if so, what was the diagnosis? Any info would be appreciated. Also, I feel drained.

thanks,
stacey
Replies:
Subject: Looking to know of Supplements NOT advised for kidney patients, Magnesium, Vitamin C


Author:
Sheryl Howitt
[Edit]
Date Posted: 15:34:38 01/16/05 Sun
I am looking to know what supplements are harmful to kidneys. I found a site on the web "diagnose-me.com that states Magnesium and Vitamin C should be avoided. THINGS THAT ARE HELPFUL ARE FOLIC ACID 5 MG DAILY, VITAMIN E, OMEGA-3 FATTY ACIDS AND SOME HOMEOPATHIC REMEDIES. I was diagnosed with polycystic kidneys 15 years ago and have recently had an increase in creatine levels and other symptoms which are causing concern that my kidneys are now failing. I have been taking high doses of Magnesium for 2 years.
Has anyones' Doctor given them a list supplements, medications, foods etc to avoid if you are early stage PKD?? I find I am quite surprized that this preventative info is not made more readily to patients, or maybe it is yet just not in my case thus far.
Thanks!!!
Replies:
Subject: Newly Diagnosed.. Lots of Pain


Author:
StevenRN
[Edit]
Date Posted: 15:03:25 01/31/05 Mon
I was just recently diagnosed with PKD. The MRI showed "multiple cysts" on the right and left kidneys. The largest on ther right is 11cm's and the largest on the left is 6.5cm's.
My nephrologist says I should not be having any pain; but I do on the right side only. Sometimes it's excruciating, other times it's a dull pain.. just enough to let me know it's there.

I do not have any liver cysts and my kidney function appears to be normal (other than having to urinate a lot). Does anyone know why my nephrologist would tell me I should not be having pain? He wants me to see a neurologist for sciatica and I refused. I know kidney pain when I feel it.
Replies:
Subject: harmful medications


Author:
denise
[Edit]
Date Posted: 09:32:44 01/28/05 Fri
I am 44 yrs old, diagnosed w/pkd 3 yrs ago, Does anyone know if birth control pills have any affect on kidneys? also echinacea? I take echinacea if i feel the flu or cold coming on. It works great. But I dont want to take it if it's hurting my kidneys or liver. Thanks for any info.
Replies:
Subject: new diagnosis


Author:
Concerned husband
[Edit]
Date Posted: 10:06:13 02/11/05 Fri
We're brand new to this disease. My wife, who is 39, was recently diagnosed with PKD and has many cysts on her kidneys and a large cyst on her liver. She does have discomfort quite a bit. We have young daughters and are aware of the heredity factor. We're looking for advice on diet and any helpful supplements (we know some supplements can be harmful). Any sources of information/books or advice anyone can suggest? Thank you.
Replies:
Subject: Genetic Testing and PKD (Memphis, TN)


Author:
Kompressor
[Edit]
Date Posted: 04:59:08 02/24/05 Thu
My wife just turned 40 and was recently diagnosed with PKD. She has bilateral cysts and they range from 1 to 4 cm in size. Kidney function is still good...>80% right now.

We cannot find any member in her family that has had PKD. Mother, father, and sister no problems. Grandparents and Great-Grandparents all lived very long lives with no kidney issues.

I want to get genetic testing done to totally confirm that she has been diagnosed correctly.

Any suggestions are greatly appreciated.
Replies:
Subject: I am afraid of what this disease has in store for me


Author:
No name
[Edit]
Date Posted: 15:12:59 07/15/04 Thu
I found out a year ago that I had cysts on my kidneys. I was in a lot of pain and bleeding. I was told there is nothing I can do. I feel like I should be doing something.I have been limting caffine and avoiding contact sports. What else should I do? I also have two girls, we do not know if they have PKD. I am afraid.
Please think of me in your prayers today
Replies:
Subject: sex drive


Author:
No name
[Edit]
Date Posted: 23:54:26 09/24/04 Fri
I have a guy friend who has a PKD.. he's wondering if his sex drive will be affected by this disease? is impotency a possibility here? pls let us know.. tnx...
Replies:
Subject: New ARPKD mom


Author:
No name
[Edit]
Date Posted: 17:24:10 02/18/05 Fri
I have just given birth to a beautiful baby girl who is now 8 weeks old and has been diagnosed with ARPKD. She seems to be healthy and is gaining weight. Does anybody have any info on newborn progression of this disease and what should I be feeding her when she starts to eat solid foods? Any help at all would be greatly appreciated!!
Replies:
Subject: is it time??


Author:
Debbie
[Edit]
Date Posted: 10:59:58 10/20/04 Wed
diagnosed with PKD 2 yrs ago. Lately been have pain in abdomen, ultra sounds, catscans done. have doubled in size on one kidney. discomfort increasing( they say cuz i am so tiny) but not to the point that doctor had mention removing kidney. its to early and yes i have cysts with one that is causing discomfort but to remove kidney? shouldnt he see about draining cysts? anyone out there have this done, if so please feel free to email me and let me know how its done..also if anyone has a remarkable doctor in the tampa bay area please let me know.
Replies:
Subject: Fired from my job, because I have PKD


Author:
Terry
[Edit]
Date Posted: 17:22:16 02/08/05 Tue
I am in renal failure and I was recently fired from my job do to my illness. I am seeking legal advise to see if I have any legal recourse. I now have no income and no insurance and must begin dialysis and hope to someday have a transplant. Does anyone have some advise?
Replies:
Subject: Daughter w/ PKD


Author:
Therese
[Edit]
Date Posted: 01:56:05 07/02/04 Fri
In April 2002, my then 17 year old was diagnosed w/ PKD. We knew there was a chance for her to get it. I have always been open w/ her about it. Her father (deceased at 44, 7 years ago) and his mother (deceased at 56) were diagnosed w/in 4 years of their death. Asymptomatic prior to that. In my initial research on the web, I was shocked to read that most folks are diagnosed (as a result of "some" type of pain that brought them to ER or doctor) between the ages of 35-50. Karla and I both thought she was having an appendicitis attack; but when I saw the ultrasound for myself that morning, I knew exactly what it was. I was heartbroken; she was only 17. The following weeks were hard--in/out of hospital, trying to accept this disease at such a young age, and trying to stay motivated to finish high school all at the same time. She did it though. Fast foward to now. When I came across this site/message board, it was comforting to see that it is not so all uncommon to be diagnosed w/ adult PKD at such a young age, and the advice/suggestions and support is tremendous. This is the reason for my message. I am writing for advice/suggestions in helping Karla w/ the emotional aspect of this disease. Since her diagnosis, Karla has felt like there is no reason to pursue anything, "I'm gonna die anyway....what does it matter, etc." (You get the point, but she feels her 'death sentence' -as she puts it- is too close to pursue college or to have aspirations, goals) I remind her she could die in a car wreck tomorrow. I steer away and try to help her steer away from indulging in self-pity. I don't discount her feelings at all. I empathize with her, knowing the bottom line is that she is "all alone" w/ this disease, no matter how much support and love we give her. We maintain a day-to-day positive attitude, but I can see her going thru another bout of deep depression, and I am running out of ideas to help her pull herself out of it. She does not want to see a therapist or support group; she stopped her anti-depressant about 3 months ago because she does not want to take a bunch of pills, she refuses to talk about her disease w/ family or friends, she refuses to learn more about it (the positive side of research/cure), etc. I hope I have painted a clear enough picture for any of you who may have some words of wisdom on how I may be able to help Karla get outta this rut and look to the future and look forward to the future. She knows only what to expect w/ regard to the hardship of this disease, which is painful. I see her losing her grip at times, and I worry she may become self-destructive. She's always been a confident, knows-what-she wants kinda person, and her loss of motivation is breaking my heart for her. What can I do?
Replies:
Subject: scanning for aneuryms


Author:
michele
[Edit]
Date Posted: 09:49:19 09/16/04 Thu
HI,MY NAME IS MICHELE ,IM A NEW MEMBER .I JUST WONDERED IF ANYONE CAN GIVE ME SOME IMFORMATION ON SCANNING FOR ANEURYMS.I HAVE SUFFERED WITH PKD AND PLD FOR 7 YEARS . I WAS SCANNED 6 YEARS AGO AND WAS CLEAR . JUST RECENTLY I HAVE BEEN GETTING MIGRAINE TYPE HEADACHES , I SPOKE TO MY DR BUT HE SEEMED UNSURE IF I SHOULD BE RESCANNED . MY GRANDMOTHER DIED AT 51 FROM AN ANEURYMS (IM 38). HOPE SOMEONE HAS SOME IMFORMATION THANKS.
Replies:
Subject: Are any PKD chat rooms working..????????????


Author:
Steve Seeboth
[Edit]
Date Posted: 20:34:33 01/19/05 Wed
I have tried to get into all of the chatrooms listed on the links with zero luck.

Is any body running these things?
Replies:
Subject: PKD Alternative medicine


Author:
No name
[Edit]
Date Posted: 15:07:54 10/10/04 Sun
Hello, I was accidentally dignosed with PDK thru and MRI and I was wondering what anyone might know about herbal medicines such as mushrooms and/or supplements.

I have three types of supplements which were recomended to me by a naturalist see what you think..

Thymex, Cholacol II and Lact-Enz.
All are dietary supplements, any comments?

Thank you..
Replies:
Subject: PKD.com


Author:
No name
[Edit]
Date Posted: 05:58:37 09/17/04 Fri
Hello,

I'm Bart D. and the webmaster of http://www.PKD.com

I created this site with the purpose of offering some information on PKD.

I found out that this website offers a wealth of information and has a great community too.

If you're looking for people with the same problems, questions, desires, fears,... like many of you have, please check out our forum.

thanks for your visit and feedback.

Regards,
Bart

www.PKD.com
Replies:
Subject: What to do for PKD pain


Author:
No name
[Edit]
Date Posted: 19:21:14 07/06/04 Tue
Hello. I have 2 daughters, ages 22 & 24, who have PKD. Their father also has it, as does several members of his family. My 24 year old has experienced more pain and problems than my 22 year old. The pain is really what is making her life miserable at this point. Her kidney function is good, but she has had cysts burst and has experience a great deal of pain. She was in the hospital a couple of days ago and was given some morphine. She left with some vicodin and has been taking that since. My question is - what are others doing for pain? Has anyone found a particular medication or treatment that is particularly helpful with kidney pain? Thank you all for any information you can offer.
Replies:
Subject: PKD linked to Pseudomonas Infection??


Author:
Tricia
[Edit]
Date Posted: 16:24:51 08/02/04 Mon
My son is 12 years old and was diagnosed with PKD early this year. (There is a strong family history on his fathers side). This summer he came down with a pseudomoas infection in his kidney & blood. After the meds, it came back again in just his kidney. Just trying to figure out if this is coiindicence or if the infection is linked to PKD.
Replies:
Subject: FREE e-book on Chronic Disease Management for patients/caregivers


Author:
SSB
[Edit]
Date Posted: 00:23:17 07/16/04 Fri
Please visit http://www.stormpages.com/sbhagwat/

READ ONLINE or FREE DOWNLOAD of "It's Your Life - A Practical Handbook for Chronic Ailments", written by a primary caregiver with over 13 years experience, with chronic renal failure, hypertension, heart disease and other chronic diseases.

I hope that you find the book useful and recommend it to other chronic disease patients/caregivers.
Replies:
Subject: support seek


Author:
Eva
[Edit]
Date Posted: 20:03:46 11/17/04 Wed
Hello, my husband has PKD. He is treated for high blood pressure and has occasional pain in his kidneys. His father is on the transplantation waiting list.
We recently moved here from England to USA and I am wondering if there is a support group around Stamford, CT.

Having read the messages on the board it seems clear that symptoms and progress of the disease varies. He is a very negative person by a nature and I thought he might benefit from a group session, even just to listen as he is not that comfortable with sharing. Do you know a group around us?
It is a bit difficult for me to stay positive as I (apparently) don’t have a clue what I am talking about. Please help me to comfort my husband when he needs it. Thank you, Eva
Replies:
Subject: Iowa PKD Support Forum:


Author:
Karen
[Edit]
Date Posted: 22:10:04 11/04/04 Thu
Iowa PKD Support Forum:

http://pub4.bravenet.com/forum/332741220

If you are in the Iowa area and need support, please come and post. We are all in this together ;) *hugs*
Replies:
Subject: Size of cysts


Author:
Jo
[Edit]
Date Posted: 00:29:08 08/13/04 Fri
I am 29 years old and have a family history of PKD. My first renal ultrasound at age 20 showed cysts in both kidneys, about 1/2 to 1 inch diameter. I recently had an ultrasound showing the largest cyst on my left kidney is about 2 inches by 2 inches (or 5.9cm by 5.3cm). Just wondering the rate of growth of fellow PKD's cysts, and onset of other symptoms. I currently have no symptoms.
Replies:
Subject: Advice


Author:
nicole
[Edit]
Date Posted: 17:29:34 09/20/04 Mon
My boyfriend has PKD he was about 7 years old when he found out.He is 28 years old now and shows no symptoms as of yet,his mother has been on dyalsis for about 10 years for the PKD. My boyfiend and i learned that one of our twin daughters also has the cysts.What i was wondering about is when do the symptoms start to progress and become painful.I am very worried about both my one daughter who has the PKD but also her twin because we are not sure if she to will get this disease.I am also wondering if any of you have any advice on how to get my boyfriend to the doctor to get rechecked he hasn't gone in about 9 years I know he is very scared about the whole thing but so him i beacause i don't wnat to lose him to the PKD without him at least trying to get treatment. PLEASE ANY ADDVICE WOULD BE APPRECIATED. i am alone and feeling very helpless in this matter i would love more info on PKD thank you so very much.

Nicole.
Replies:
Subject: Daughter newly diagnosed with ARPKD


Author:
Marianne
[Edit]
Date Posted: 12:58:25 07/12/04 Mon
Hi,I have a 13yr old daughter newly diagnosed with ARPKD.our world has been turned upside down!Any advice,guidance would be so much appreciated.I am a lost mom and want to help my daughter in any way I can!Thank you so much!
Replies:
Subject: lidney versus low back strain


Author:
No name
[Edit]
Date Posted: 14:53:17 08/03/04 Tue
I am having back pain-has been going on for 2 weeks. I have a "bad back" and it started at work (I'm a nurse). Usually this doesn't last this long with rest,etc. I have never had kidney pain and don't know how to tell the difference. I do have PKD. Most of the time it is dull achy and increases when I sit. Is kidney pain different in specific ways?
Replies:
Subject: afraid of what disease has in store for me


Author:
kim
[Edit]
Date Posted: 19:44:24 10/15/04 Fri
i also have polycystic disease-you should not take any medication with ibuprofen-very hard on kidneys
Subject: husband has pkd


Author:
raven
[Edit]
Date Posted: 09:26:33 10/13/04 Wed
my man was diagnosed and has been used as a guinea pig -he has little pain-hundreds of cysts on both kidneys inside and out -few burst 4 years ago-no one did anything till last year after kidneys failed a long time previously -they asked us to come to new clinic that has been so bad w/ help he has now given up fighting and i have a small set of 5 yr old twins --moved across country to get help now we have lost family,friends, and all support please help w/ any ideas
Replies:
Subject: re: 0 positive donor


Author:
Beth
[Edit]
Date Posted: 20:12:53 07/19/04 Mon
I took this message down because over the years I've had too many people who want to sell their kidneys, etc. for me to feel comfortable leaving it up. If anyone wants to donate a kidney or liver, Johns Hopkins has an "Altruistic Donor Program" and if it's too far away, they could probably could refer you to a closer program.


http://www.hopkinsmedicine.org/Transplant/P
Replies:
Subject: Interstitial Cystitis Support Group


Author:
Linda
[Edit]
Date Posted: 18:57:14 09/21/04 Tue
I just wanted to let everyone know that I have a support group for ic and other related illnesses. You are welcome to join.
If you have any questions, please feel free to email me.
Linda caliqueenbb@aol.com
http://health.groups.yahoo.com/group/interstitialcystitischronicpain/
Subject: Denial and Acknowledgement of Having PDK


Author:
dan
[Edit]
Date Posted: 02:14:40 09/09/04 Thu
I was diagnosed with PKD five years ago.With many cysts up to 15 cm. I am 40 something, with two children. My Father and Siblings also have PKD. I'm having a hard time internalizing the fact that I have PKD. Writing and sharing here is a first step. That acknowledgement is key so that I can create the healthiest environment for my body. I'm lowering my stress levels my giving over more responsibility to my family, eliminating "some" of my volunteer work. I am overweight at 191 pounds. I've started to lose weight and have been excercising regulary. I have some occastional pain but have been fortunate thus far. Since my PKD is so silent, I've had a hard time acknowleging it on a daily basis, which is necessary to keep me motivated to get intothe best shape possible for what is to come.
Thank you for listening to me. G-d bles you.
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Subject: Sudden kidney swelling


Author:
No name
[Edit]
Date Posted: 15:41:00 09/15/04 Wed
I'm still writing for my 21 yr old daughter. What makes a kidney swell up all of a sudden and basicly stay that way? There are no blocked ureters. She has just had the infection episode. Function is normal. What can be done about the swelling? Ilene
Subject: Transplantation


Author:
Bzoodie
[Edit]
Date Posted: 22:28:39 08/25/04 Wed
I have a question about a dialaysis for a PKD patients.
The physician suggested that the patient (a family memeber) have to remove a kidney if she wants a dialysis.
I am not sure that is it true? She is very worry about this.
Hope to have some advice soon, Thanks
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Subject: Research Study


Author:
Linda
[Edit]
Date Posted: 11:12:33 06/30/04 Wed
I am about to enter a great study on ADPKD being conducted at Emory University School of Medicine. It is a genetic analysis to facilitate understanding of this disease at the cellular and molecular level. I am thrilled to participate and hope, in some small way, to be part of a cure. Thanks to this site for giving me the information and links to be able to help.
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Subject: Finding a kidney


Author:
No name
[Edit]
Date Posted: 07:02:53 03/09/04 Tue
I was thinking about emailing my friends and extended family to let them know about my PKD condition. I am in need of a living donor and am seeking the "O" blood type. If I at least give people some information then possibly they could be tested for a kidney match if they decided they wanted to help me. Does this seem to be an okay thing to do? What do you all think?
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Subject: insurance coverage


Author:
Mercedes Hall
[Edit]
Date Posted: 11:38:55 02/23/04 Mon
My 28 year old daughter has been diagnosed with PKD. What health insurance options are available for her? So far, I have found no company who will insure her. Thank you for your help.
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Subject: tissue swelling yet normal BUN / Creat. no protein in urine


Author:
Nurse C.
[Edit]
Date Posted: 18:39:15 08/25/04 Wed
I have PCKD of a known 12 years. I have HTN. I have had for the past month swelling of my abdomen / rt. leg / rt. arm. / rt. side of face. Now, My left leg and left arm are having areas where build-up of pockets of fluids are collecting.
My CAT scan last week of the abd.showed my cysts in kidneys and liver. Report said I had a 7cm x 7.5 cm cyst on the the top of the right kidney / no hydronephrosis / no fluid in my abd..
My question - I read the cysts of PCKD grow from the nephrons and take up kidney mass ??why do I have a cyst on top of my Kidney pole? I have much flank pain and at times, numb feet.
Sound like anyone else
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Subject: Feeling tired often


Author:
Shelley
[Edit]
Date Posted: 05:09:28 08/19/04 Thu
I just came from my doctors office and mentioned how after working a lot of hours and being busy the 2 weekends in between that I was tired and her response was I don't understand why you are tired. I was wondering if other people feel tired most of the time. I do take Epogen injections biweekly and it has made me feel better, but sometimes I get tired out. My current kidney function is between 20 and 21%. Thanks for any comments on this issue.
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Subject: ? Regarding weird, new symptoms


Author:
Patti
[Edit]
Date Posted: 22:28:24 07/31/04 Sat
Hello:
I'm 42 years old and have been dealing with PKD for 21 years now. I have the usual complications--renal stones and elevated BP; however, lately I've been having weird, new symptoms and I'm not sure whether these are normal and just the natural progression of PKD.

Never ending right flank pain that worsens at night (my kidneys feel like they are water logged at night). I wake up in terrible pain.

Numbness and pins and needles in my feet, hands and right side of my face. Sometimes, I itch terribly too. Seems to itch most in the body parts where I experience the numbness.

Left arm aches and I lose strength in it. Today, I started having muscle tremors that would last for up to 5 minutes. My muscles would twitch in regular intervals. Now, my arm aches more.

Nausea and a feeling of being seasick--kind of feel dizzy and queasy. This is intermittent. However, it seems to occur more and more lately. I've been losing weight because I don't feel like eating.

Painful swallowing or feeling like I have something blocking my throat.

These symptoms are new to me and they seem to be occurring more regularly lately. I don't know if I should follow up with my doctor or not. Seems like whenever I go to the doc, he seems to get irritated because he tells me that I'm not "sick enough" yet to be seen on a regular basis (He's a nephrologist). So, as a consequence, I've only seem a nephrologist 6 times in 20 years. Most of the time, I visit the urologist when dealing with kidney stones.

What kind of medical care regimen is normal?
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Subject: What about protein in your diet ?


Author:
No name
[Edit]
Date Posted: 07:02:11 07/13/04 Tue
Hi All.

I’ am a 37 year old male in SA. I was diagnosed with PKD about 7 years ago. My current creatinine level is at 233. My doctor suggested that I become a vegetarian and leave out all meats, fish and poultry.

I know that one must limit your protein intake but is uncertain if I do change to a vegetarian what about the proteins intake?

A lot of vegetarian dishes contains protein, are they classified the same as from animals?

Any help will be appreciated, Thanks
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Subject: Will ultrasound show cysts in children?


Author:
Bonnie
[Edit]
Date Posted: 20:26:58 07/10/04 Sat
Hi,
My husband has PKD. We have two children, ages 11 and 8. Our pediatrician recommended that our oldest child have a ultrasound to screen for the PKD. Our child has not had any symptoms of PKD. I've read that an ultrasound cannot completly rule out the disease until at least age 20, because the cysts may not be large enough to see. Is it worth getting the ultrasound now, knowing that if the kidneys are clear now, it may not rule out the fact that she may have the disease? I don't want to get false hope if the ultrasound was clear. Thanks.
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Subject: Soy Protein Isolate


Author:
Marc
[Edit]
Date Posted: 13:13:13 08/01/04 Sun
Hello everyone,

I'm new to the Board. I'm 36 years old with PKD, creatine of 4.6 and deteriorating. I have seen various studies over the past few years showing that use of soy protein isolate slowed the progression of PKD in rats. I just saw on the web that they "have developed a method to treat polycystic kidney disease (PKD) using a saponin-enriched alcohol extract from soy protein isolate." Has anyone heard of this and know if it available or are doing clinical trials? Or has anyone tried to take soy protein isolate in supplement form, and if so, what have you used? Just curious if anyone out there has tried anything along these lines. Thanks!
Subject: SCARED!!!1


Author:
CASSIE
[Edit]
Date Posted: 22:57:47 12/16/03 Tue
HI MY NAME IS CASSIE I AM 13 AND MY MOM HAS PKD. MY GRANDPA DIED A YEAR AGO AND HIS BIRTHDAY WAS DECEMBER 24TH. IT IS GETTING CLOSER TO CHRISTMAS AND IT IS REALLY HARD TO BELIEVE THAT MY GRANDPA WON'T BE HERE. MY MOM DOSEN'T WANT TO HAVE CHRISTMAS CAUSE OF EVERYONE IN OUR FAMILY. YOU KNOW WHAT I AM SAYING? OK I THOUGHT YOU WOULD UNDERSTAND,BUT THAT IS NOT IT MY MOM HAS HAD PKD SICENCE SHE WAS 16 AND IT IS STARTING TO GET WORSE. I CAN TELL SHE IS IN PAIN BY THE WAY SHE ACTS,BUT SHE TRYS TO HIDE HER PAIN. MY MOM WORKS ALL THE TIME AND SHE IS ALWAYS TIRED. WHEN KIDS TALK ABOUT THEIR PARENTS AT SCHOOL I JUST KINDA IGNOR THEM CAUSE I DON'T LIKE TO GET UPSET. I ALWAYS GET UPSET WHEN I TALK ABOUT MY MOM CAUSE I MA SO AFRAID THAT SHE IS GONNA DIE AND I JUST DON'T WANT HER TO DIE. YOU KNOW WHAT I AM SAYING? OK THOUGHT YOU DID. WELL HEY YA'LL I BETTER GO! PLEASE IF YOU WILL PLEASE WRITE ME BACK AND HELP ME OUT! JUST SOMEONE TO TALK TO WOULD BE NICE:)

THANKS!!!
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Subject: increased echotexture of kidney


Author:
raj kumar dewangan
[Edit]
Date Posted: 00:44:10 07/20/04 Tue
i am a patients of polycystic kidney.In my recent ultraosonography increased echotexture of kidney is observed.wheather this occurs due to increase in cyst size or due to stonge blood pressure medication. i take 10 mg benzapril morning and 10 mg evening and 50 mg losartum potessium.kindly advise me in this regard
Subject: Drinking water


Author:
Jack Alexander
[Edit]
Date Posted: 12:20:17 10/17/03 Fri
The PKD site advises drinking lots of water to "flush" the kidneys. A renal nurse I know says drink the minimum water, just as neessary to slake thirst, so that kidneys won't be "overworked". Anyone have info?
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Subject: life expectancy information


Author:
Kimberly
[Edit]
Date Posted: 14:46:49 07/15/04 Thu
I was wondering if anyone knows where I can read what the stats are for people(like me) with PKD?
Thanks! Kimberlylq@aol.com
Subject: Daughter with /pkd


Author:
Alma
[Edit]
Date Posted: 14:27:13 07/06/04 Tue
Hope I can give you a little encourgament, My family is in the 6th generation with this terriable diease, but all is not lost. Try to get her to go to a kidney Specialist. First he will go over all of the ways that it can effect you emotionally and if he is good he will get her blood pressure as low as needed , put her on a red meat free diet. have her exercise. I am much older than she by a long shot but was at only 25% function, had friends ready to give kidneys and after 6 mos. with the proper diet and all I have gone back up to 36% .Outside of the things I mentioned the only things that he does for me is make me drink a glass of water a day with a teaspoon of soda in it and I take a shot of aldregen as needed, togather it keeps me going and I am 67 years old and been living with it 14 years. So get Karla to a good doctor and have them go to work ,I have found when you go to a clinic with others you get support , that is where the shot time comes in and have been told the shot can help keep you functioning for awhile, I too felt like I had a death sentence and have told the doctor I will go fighting to stay off of that machine. Good luck and may God bless.
Subject: Need Advice


Author:
Rob
[Edit]
Date Posted: 06:00:53 06/24/04 Thu
I am a 44yo male who has been diagnosed with pkd for about 10 years. about a month ago at my last neph visit, he said my creatinine level was at about 17 percent, about 18months prior to that i was at 33percent. He briefly mentioned that at my next visit he would discuss possibilities of transplant before dialysis. I am not current with information about my disease since I thought it would be quite a while until i was in need of dialysis or transplant. Now after starting to read up on all of this, i am concerned that my neph is not doing more at this time. He scheduled me to come back in 6 months and i no talk about going to find out about transplant options or testing yet. Am I wrong or should more be done at this stage I am at?
Replies:
Subject: PKD and the South Beach diet


Author:
Chad
[Edit]
Date Posted: 09:44:28 06/20/04 Sun
Hey all, I'm Chad, and I'm new to this forum. I am 32, and was diagnosed with PKD 3 years ago. So far, my kidney function has been holding steady and my blood pressure is under control with the help of medication.

My question is, my wife has recently decided that she would like to go on the South Beach diet (which is somewhat Atkins-like, but not nearly so rabid about eliminating carbs). I agreed to go on it as well as a show of solidarity. However, I'm sort of concerned about the possible health implications of such a diet given my PKD. Does anyone have any insight into this?

Thanks, and best wishes to all!

-Chad
Replies:
Subject: 9yo with ADPKD


Author:
lynnejanet
[Edit]
Date Posted: 19:43:20 06/05/04 Sat
Hello all. My husband has ADPKD, diagnosed about 6 years ago, when he was 30. Our 9yo has had symptoms for some time (intermittant pain on urination, with no infection; "inflamation" of the urethra; blood in urine; pain in his back and stomach) and has been treated for the symptoms, but not much testing has been done. Our family doc has insisted that ADPKD can not be present in children under 10, despite solid anecdotal evidence from my husband's family that it HAS been. Anyway, the doc agreed to an ultrasound this past week. The films haven't been read yet by the radiologist, but I was there when it was done, and saw what seemed to be many cysts (I've seen by hub's films). The technologist measured 2 in his right kidney, 2 in his left and 1 in his liver. I know I'm jumping the gun, because I'm no doctor, but I'm sure the US will come back to a diagnosis of PKD.

Now (finally) my questions. Should we tell my son? I have always been honest with him about everything his dad has gone through, but I don't want this to become something that he worries about. I also don't want to face his anger at a later date, if we decide not to tell him right away. Forewarned is forearmed, I think, but he is only 9.

Second question: he has always had difficulty regulating his body temperature and fluid levels. Every summer he has at least 2 episodes of heat exhaustion (lethary, vomiting, high body temp) despite us watching him like a hawk and pushing fluids. COuld this be related to the PKD? I understand that the kidneys regulate eletrolyte levels and sodium levels, so it makes sense to me.

Thank you all for your advice.

lj
Replies:
Subject: How are you all doing?


Author:
Joanie
[Edit]
Date Posted: 10:12:27 05/06/04 Thu

I'm 38. My blood creatine is excellent - no sign of uremia. My blood pressure is beginning to rise (150/100) and I've had to increase my blood pressure meds.

I just had an ultrasound yesterday, due to flank pain and constant feeling of bladder inflammation (interstitial cystitis?). They found liver cysts, bladder cysts, kidney cysts > 3.5". No obvious cause for the discomfort.

I worry. I worry about the disease getting worse, about dialysis and other unpleasant realities I'll have to face.

Please share your story with me. I need to hear of the healthier, and the less healthy.

Thank you in advance for the support.
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