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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: Paired Exchange -


Author:
AGF
[Edit]

Date Posted: 03:48:41 06/23/04 Wed

Hello,

My husband has PKD. A month ago, in a routine visit with his nephrologist we found out that his function had declined rapidly after years of slow unremarkable change and that the will need a transplant soon. He has never been on dialysis, and we are quickly trying to adjust and learn what we can. His sister agreed to be a donor, but she is B and he is A. I have been looking into the paired exchange programs, but is frustrating how there is no coordination. Our hospital does not do paired exchange and has little interest in helping us contact other programs, though they would take over his car post transplant if he is transplanted out of state. We are looking at Johns Hopkins, the Mayo Clinic, and I read that the hospitals in Ohio have linked their lists. Is anyone working with any of these programs? Do they make you go through the whole transplant evaluation and testing facility by facility? Is there any board or list that coordinates people who want to participate in a paired exchange?

Thank you!
Replies:
Subject: Need some hope


Author:
Karen
[Edit]

Date Posted: 11:38:58 06/20/04 Sun

HI. My 6 month old son was diagnosed yesterday with ARPKD. He is in the hospital now and we don't have too much information yet as to what the next step will be. His blood pressure is extremely high so he is on IV meds and oral meds currently to control it. Our world has been turned upside down with this news and I would just like to know if anyone could offer us a little hope? Thank you.
Replies:
Subject: I will be crazy


Author:
Wanda
[Edit]

Date Posted: 19:25:30 06/16/04 Wed

My dear and precious mother read the radiologist notes that said she have prominent kidneys and polycystic kidneys and/or hydronephronic. What mean that? We dont have parents with PKD so, if possible she have it? She only have lower back pain. Im very sad, please give information. My mother is too young, only 44.
Replies:
Subject: Deroofing and Draining


Author:
Linda
[Edit]

Date Posted: 11:19:57 06/02/04 Wed

Please help me in making some decisions regarding deroofing, aspiration and drainage of cysts. Mine are very large (my neph estimates that kidneys and liver are appproximately 30 lbs)and cause constant discomfort and pain. He advises against any procedures to reduce their size and is vehemently opposed to liver resection.

Will any of you out there who have had procedures please share your stories with me?
Replies:
Subject: pain in right flank


Author:
stacey
[Edit]

Date Posted: 07:28:11 02/22/03 Sat

I have pkd. I am 30 years old. I have been having right flank pain for 2 weeks now, not severe pain, but a aggrevating throbbing pain. I went to my doctor 4 days ago and he did blood work and a ct scan and my blood work and urinalysis was fine. My ct scan showed the same results as it did 6 months ago. So, he told me that he doesn't know what is causing the pain. Has anyone ever had this symptom? If so, what is causing it? I am really thinking about going to another doctor.
Replies:
Subject: B+ Kidney


Author:
No name
[Edit]

Date Posted: 12:33:51 05/01/04 Sat


Hello i'am 42 years old and would like to donate one of my kidney's to someone who is in need.
I have read so many stories about people on waiting list's so i would love to help someone.
So please get intouch.either on here or my email waddington36@hotmail.com
Replies:
Subject: Low Phosphorus Carbonated Water?


Author:
Kat
[Edit]

Date Posted: 21:00:07 03/30/04 Tue

My Dr. just told me I need to lower my phosphorous level. Last year I gave up soda and switched to San Pelligrino mineral water (which I just found out is 705 ppb... high, I think) , or other carbonated mineral water. I am trying to find out which carbonated water has low phosphorous. I also want to know the difference between mineral water, soda water, tonic water, club soda, or other possibilities of carbonated water, and which is better for me to drink.
Replies:
Subject: PKD


Author:
Shannon
[Edit]

Date Posted: 08:57:40 06/03/04 Thu

I am 30 years old, was diagnosed with PKD 3 years ago after having my 4th child. Since then the pain has gotten worse each year. I had asperation done about 8 months ago. The last 2 months the pain has gotten really bad. My Dr. is contacting a surgeon to see what they can do for me. I am currently taking Fentandol Patch & Voixxo for pain relief. I am also on High Blood Pressure Medicine. If anyone would have any suggestions on what works best for them to cope with their pain and discomfort, I would like to hear from you.
Replies:
  • Re: PKD -- Molly, 20:45:59 06/06/04 Sun
Subject: Possible PKD


Author:
Colleen
[Edit]

Date Posted: 12:28:02 02/27/04 Fri

My daughter went in for a renal ultrasound about 2 weeks agot. The findings came back with a cyst in her left kidney about 1/5 inches. She is 4 years old. She is not experiencing any symptoms. The doctor has ordered another renal ultrasound to see if there have been any changes.

Far as my husband and I know, no one in our family has died or been diagnosed with PKD.

Is it possible this can be PKD?


A concerned mother.
Replies:
Subject: Trying to find answers


Author:
Tim
[Edit]

Date Posted: 18:20:11 05/31/04 Mon

Hi,
My name is Tim. Iam 37 years old and was diagnosed 3 1/2 years ago with PKD. At the time I was having problems with kidney stones and that was when the cysts were found. My GP has never treated anyone with PKD. So he and I both have had to use the net to get information. There are no other doctors in my area with any more knowlege than he has on this subject. When first diagnosed my kidney function was normal and the stones were the cause of my pain. Now I still have some small stones but am in pain almost everyday all day long and am tired of taking pain pills all the time. My cysts are getting bigger all the time and my kidney function is at about 1/2. I have blood in my urine all the time which no on can explain. Sorry if I ramble but I am scared and don't know where to turn. What can I expect as thing progress. Please Help.
Replies:
Subject: financial or medical assistance badly needed for kidney transplant patient


Author:
s.venkata ramana
[Edit]

Date Posted: 04:48:51 03/11/04 Thu

From: S.Venkataramana DATED: 11/03/04
Door no 18-241, Hill Mount No-4,
Simhadripuram, (PO) H.B. Colony,
VISAKHAPATNAM-530022,
(ANDHRA PRADESH)
PH NO- +918912534158.
Cell : +919849294620
E-mail : ramanasvenkat64@rediff.com
My bank A/c : 061-016697-006, H.S.B.C
( Suryabagh, Visakhapatnam, A.P state, India )

Respected Sir / Madam,
Sub:Financial or Medical Assistance For Post Operative Medication for Post Transplant Kidney Patient badly needed.

With due respects let me introduce myself I, Sorampudi Venkata Ramana , was affected with chronic Renal Failure as per investigations conducted by Sunderam Medical Foundation, Chennai and Apollo Hospital,Chennai in the year 1999. I was advised to undergo Renal Transplantation for longer effective life, particularly as I was aged 36 years only at that time.
With my poor health I had to discontinue my job and has been staying with my old retired father who had spent all his savings for the prolonged medical treatment of my mother who also suffered from chronic renal failure. She expired two years back. I was on heamo-dialysis for about 2.1/2 yrs.In the meantime my father and myself have been making efforts to raise necessary funds for my renal transplantation. My erstwhile employer, who have always been sympathetic to me, have provided around Rs.50000/- and my relatives, my brother and sisters have helped me with around Rs 2.5 lakhs. A kind-hearted philanthropist known to my uncle helped us with a donation of Rs.1 lakh. I could also mobilize a grant of Rs.30000/- from Prime Ministers Relief Fund vide letter no.82 (11514)/2000-PMF.
With the help of the resources as above, I ventured to plan for my renal transplantation, the donor being a very kind hearted lady known to my brothers family purely on a voluntary basis, at Madras Medical Mission Hospital at Chennai.After necessary preparatory tests, and approval by the authorization committee, Directorate of Medical Education Chennai, constituted by Govt.of Tamilnadu for implementation of transplantation of Human organs Act 1994,
renal transplantation operation was successfully performed on 19/11/2002 at Madras Medical Mission Hospital, Chennai. For postoperative care I was placed under the treatment of Dr.Georgi Abraham , Consultant Nephrologist at the same Hospital. I was on the right course of recovery under his able treatment.
My present problem is how to meet the expenses of my post-operation medical treatment in future as it involves administration of highly expensive medicines like ‘Neoral’ Cyclosporine, ’Cellcept’ etc. As per the advise of the doctor, the first month may involved an expense of Rs.45000/- and subsequent months involved less and less expenses depending on the progress of my recovery. Already eight months have passed since I underwent kidney transplantation and at present my medical bill has come down to Rs 25,000/- per month ( Around US$ 600 per month ) and my recovery has been considerably improved with the periodical tests and able advise from Dr T . Ravi Raju, a consultant specialist in Nephrology at Apollo Hospital, Visakhapatnam who incidentally also is the Professor & Head in Nephrology Deptt in Andhra Medical College (KGH) , Visakhapatnam. The Doctor told me that I have to continue taking particularly two medicines life long i.e "Cyclosporine" NEORAL and "cellcept" which are expensive drugs in terms of Indian currency. The present dosage as per doctors advice is 225 mg of Neoral and 1250 mg of cellcept per day along with other medicines. The dosage might come down slowly depending on my recovery and progress .I am also trying for a job here as I am confident of my ability as well as health condition for which doctor also agreed .But all these efforts may not fully put me in a position to meet my medical expenses without the help from humanitarian and Kind hearted persons like you . I seek and appeal for help preferably by way of providing medicines to me mentioned above periodically or alternatively financial help, which will certainly bestow me a second lease of long sustained meaningful life and I shall ever be grateful to you and the ‘God Almighty’ in you for such help. We have almost exhausted all the known sources of financial help and my father may not be able to help much, though he is still working on part time jobs of small means. Any documents related to operation & hospitalisation will be furnished on your request.
I wish to establish a trust for renal patients at vizag with the humanitarian help and assistance frompeople like you.
With regards, Thanking you
Yours faithfully,
S.Venkataramana
Encl:
Copy of Certificates and discharge summary from the Concerened Doctors and Hospital authorities will be enclosed for your referance if required..
Replies:
Subject: Insurance


Author:
Jen
[Edit]

Date Posted: 00:42:32 10/14/03 Tue

I'm 24 and now uninsurable because of PKD. I never see anything about places that help people with healthcare and disability. Is there any information out there that can help? I really want to see if I am eligable for disability but am afraid that I'm not 'far along' enough to get it even though my life has been turned upside-down. Or even where to go to for help. Please, any information would mean so much to me!
Replies:
Subject: Symptoms of Polycystic Kidney Disease


Author:
Marie McMillan
[Edit]

Date Posted: 10:53:45 01/19/04 Mon

Hi, my name is Marie and I was diagnosed with PKD when I was 18. I didn't have any symptoms until I was 21 when I had been having headaches for a while and when my blood pressure was checked it was high. I was put on medication and led a normal life. I continued to have headaches but nothing major. As the years wen on my blood pressure increased and so did the medication. After I had my third child when I was 29 my blood pressure would not come down so the medication was increased yet again. I am now on atennelol 100mg daily, amplodopine 10mg daily and captopril 100mg daily.

I am now 33 and have been having constant headaches, I suffer from chronic fatigue and I am continually having back pain. I take 8 x 500mg tramadol for the pain.

My doctors have told me that my kidney function is normal and that my blood pressure is well controlled with medication and more or less have told me that I should not have these symptoms and that I must be depressed. I have explained that I was not depressed as I have 3 young children that I want to do things with and I want to get up in the morning. I feel slightly depressed now as the doctor doesn't listen to me and my life has totally changed, I have been unable to go to my work for the past 20 months. I have had to apply for ill health retirement but the criteria is very strict.

I am looking for anyone out there who might be able to help me. I need people with the same symptoms as myself to write to me in order that I can take this to my specialist. I should also note that my father and grandfather both died from the disease aged 38 years. I was very young but my mum has told me that my father suffered from chronic fatigue but they were unaware that he had PKD. When I was at my work, I would come home in a different pair of shoes as my feet and legs would be so badly swollen. I have said to the specialist how can these symptoms be in my mind.

Anyway if there is anyone out there who can help me I would greatly appreciate it.
Replies:
Subject: hello im new and i have pkd


Author:
tycene
[Edit]

Date Posted: 19:23:27 05/18/04 Tue

hello im here in iowa ihave pkd im 33 and my daughter katie was diagnosed about a year ago she is 13 doing good she does have high protien levels and function is great i on the other hand havent seen my docter in about a year because of high costs i experience pain and kidney stones my function the last time they checked was ok though.i get tired alot and do lot of lifting where i work i work full time i do get depressed alot and wonder why this happened my mom karen also has pkd so we all 3 have a bond in common i just katie is doing ok and has many helth children someday.
Subject: cysts in PKD cases


Author:
sj
[Edit]

Date Posted: 22:48:10 03/04/04 Thu

though PKD is all about cysts but what exactly r these cysts and how harmful they r. is it possible to know the rate of growth of cysts. i have heard that sometime these cy burst then what happens. i m detected with PKD for last 7 yrs. things r not that bad but cysts r increasing in size and kidney size is increasing.
Replies:
Subject: ACE inhibitors


Author:
Anna
[Edit]

Date Posted: 12:57:46 04/16/04 Fri

I'm currently on Lotensin and need to up the dosage or switch to something different. Based on what I've read, there is reason to think that ACE inhibitors may have an advantage over other classes of hypertensive drugs for PKD patients. Anyone know if ARA's or ARB's (Angiotensin II Receptor Antagonists or Blockers) have the same benefit? Do they have less side effects?
Replies:
Subject: Sport activities with PKD


Author:
No name
[Edit]

Date Posted: 00:04:37 10/14/03 Tue

I am a 34 year old with PKD. Currently, my kidney function is OK. Since early age I am envolved in all kinds of sport activities. Recently I am only doing minimal sport activities including running (few miles), swiming and general strength exercises (e.g. push-ups).
Was anyone with PKD recommended to limit his sport activites or to avoid specific areas due to PKD?
Replies:
Subject: PKD pain


Author:
Molly
[Edit]

Date Posted: 01:50:50 02/28/04 Sat

I am 37 years old and was diagnosed with PKD over a year ago. The past 4 months I have been in pain that sometimes is so bad I can't describe it. I have 3 cysts in my right kidney, 3 in the left (2 were recently unroofed because of their size) and too many to count in my liver. Both organs are functioning normally. I had an aspiration (to the left kidney) done in December that really didn't help matters so the unroofing procedure was completed a week ago. The past 2 days, my pain in my left flank has returned and I am very fustrated. I am so sick of taking Vicodin every day! Am I cursed to live with this pain the rest of my life? I know I don't suffer alone and would appreciate any feedback from anyone that knows what this is like. You just can't get any info out of a book about the pain and I am getting terribly concerned at this point. I do realize that I could be having complications from the surgery and this will be addressed with my doctor however doctors don't get as honest as other people with the disease. Can I expect to have constant pain until my kidneys fail or the time comes to get a transplant? Would appreciate any comments. Thanks!
Replies:
Subject: Advise on having children


Author:
Julia
[Edit]

Date Posted: 06:51:49 03/30/04 Tue

Hi, I am probalby posting a redundant question that has been posted here before but I guess I need to post it anyway.

I have recently found out my fiancee (male) has AD-PKD and that if we were to have children they would have a 50% chance of getting this disease. This weighs heavily on my mind and I am concerned that it would not be fair to have a children under these risks. Another concern I have is that hypertension runs in my family and I understand that that can exacerbate the disease.

I am interested to hear from others with PKD, if they decided to have children or not and what they did to come to terms with this decision. Also, I am not sure how serious this disease can be, is it something I should feel this concerned over or not. My fiancee is not presenting the disease but others in his family have had problems as early as early childhood with their kidneys.

Thanks for any information you could give me.
Replies:
Subject: Restricted Carbohydrate Diet and PKD


Author:
Gary Halpern
[Edit]

Date Posted: 12:43:21 12/05/03 Fri

My wife's father had been diagnosed with PKD about 15 years ago. He never told my wife. She too has it and needs to checked every six months for cysts. My question is-with the successes of low carbohydrate diets lately, can she restrict her carb intake, eat more eggs, meats, chickens and fish(higher proteins) and not worry about her kidneys... We know many who have had success with restricted carbs and wonder if if would be OK for her.
Replies:
Subject: 11 year old with ADPKD


Author:
Kim
[Edit]

Date Posted: 06:51:57 02/02/04 Mon

My 11 year old daughter was recently diagnosed with ADPKD after rupturing a cyst playing soccer.
She is asymptomatic, but her kidneys are very enlarged with many cysts, particularly on the left side. She is now on enalipril and doing well on this med. Her physicians believe she is a spontaneous case, as this disease has never been present in our families. We have not been able to find much information on the expectations for children diagnosed with ADPKD. Does anyone know of research on this disease in children? Also, we would appreciate replies from those who were diagnosed as children and how they are doing now as adults. Our daughter was initially restricted in her physical activity, but her doctors have now encouraged us to allow her to play most sports, including soccer. Any comments of physical activity would be appreciated. We are hesitant to allow her to do this as we don't want her to rupture a cyst again. Thank you.
Replies:
Subject: is there n e one like me?


Author:
Lauren
[Edit]

Date Posted: 08:27:25 12/29/03 Mon

i am 12 years old and have the adult PKD.no one in my family ever had it though. i am a cheerleader and gymnast. my doctors want me to quit cheerleading because i might get hurt. i dont want to though. cheerleading is my life. and is there n e one my age that wants to talk to me? i feel like im the only 12 year old with it. thank you ~LaUrEn~ :-)
Replies:
Subject: looking for help


Author:
No name
[Edit]

Date Posted: 08:20:31 03/12/04 Fri

Hi everyone -

My mother in-law will be visiting the US in about a month. She currently lives in Colombia and was diagnosed with PKD about 10 years ago. However, she has not really received that much information about the disease from her doctors and was just told recently that she may want to think about lowering her salt intake.

I was wondering if anyone could suggest a good doctor in the northern florida region. I am hoping that we could obtain more information about her particular needs from a doctor here.

Thanks in advance for any help.

Christina
Replies:
Subject: New Dialysis


Author:
Laura S.
[Edit]

Date Posted: 15:19:38 03/11/04 Thu

Below is the web address for a new survey for people on dialysis. It focused on new products that help manage chronic kidney disease and asked about the most concerning aspects of kidney diease and dialysis. I'm glad to know that this type of research is being done. Have fun!


http://hpolsurveys.com/w20731a.htm
Replies:
Subject: Bloating


Author:
Gwyne
[Edit]

Date Posted: 21:50:37 12/11/03 Thu

I forgot to mention in my last post, I've been experiencing bloating alot lately. Not the period type either. And if I eat, hardly anything, I get badly bloated and feel almost like I have indigestion. I eat small portions and it still feels this way. Is this part of PKD? I'm finding out more information on this board than I have anywhere online so far.

Thanks!
Replies:
Subject: 4 surveys PKD and PLD


Author:
Diane
[Edit]

Date Posted: 11:06:43 02/21/04 Sat

Hello everyone
  I have PKD and PLD. My name is Diane and I used to be from Virginia but now live in Hawaii. I have a website about PKDiet called http://www.pkdiet.com. I would like to post answers to these surveys to the website.


These (2) are about kidney cysts

How is your kidney functioning? If you have no kidney cysts do not take
this survey.
http://www.pkdiet.com/polls.htm


What do you eat?
http://pld.freepolls.com/cgi-bin/polls/002/poll_center.htm


These (2) are about liver cysts

Do you have polycystic liver disease?
http://www.pkdiet.com/polls.htm
The very last choice on the liver poll will bring up a blank selection.
Should you choose to select this one it brings up liver cysts unknown
if kidney cysts. For some reason it leaves the selection blank and
until you vote and view results, only then will it show that you have
selected:
liver cysts unknown if kidney cysts

To vote go to:
http://pld.freepolls.com/cgi-bin/polls/004/poll_center.htm
hold down the scroll bar until it is blank, then click submit vote,
then view results.


How old were you when you first diagnosed with liver cysts? If you have
no liver cysts do not take this survey
http://pld.freepolls.com/cgi-bin/polls/001/poll_center.htm


Thank you very much for choosing to  participate,

Diane
Subject: Confused


Author:
Irish Rogue
[Edit]

Date Posted: 11:30:26 10/30/03 Thu

Hi there! First ... I'm sorry for this being so long ... and second I also posted this on the other message board ... so I apologize for double-posting this. I wasn't sure if everyone visited both ... and I wanted to hear from anyone and everyone. :)

I just saw a new nephrologist today and I'm feeling totally confused. I don't know whether to jump for joy or be cynical ...

I was diagnosed with PKD nearly 15 years ago at age 19. I had an MRI taken at that time ... with 18 cysts on one kidney and 21 on the other. I've had very high blood pressure since 13 ... so, while hearing that I had PKD was a shock, it seemed like a reasonable answer since no one had any idea *why* my blood pressure had ever been so out of control.

Years go by ... various tests taken ... all show cysts on the kidneys ... fast forward to now. I'm having female issues and we (once again) found out my blood pressure was sky high (190/150). I had a sonogram done yesterday which showed cysts on both ovaries ... and my doctor suggested I see a well-respected nephrologist that she trusted ... just to get his "take" on the situation.

So today ... I meet this very kind doctor. Here's where I'm lost ...

He says just because I have multiple cysts on my kidneys does NOT mean I have PKD. He says he's nervous about slappping that "label" on me ... although I pointed out to him that I've had this "label" for nearly 15 years. He says that PKD is almost entirely genetic ... and if I can't show that my parents or other family members have it ... then he questions whether or not I have PKD or just a "cystic disease" that is on my kidneys, ovaries, liver, etc.

He then went on to explain that I would STILL have to be checked, I would STILL have to be careful with what I ate, drank, etc. ... so I'm thinking ... aren't we just arguing symantics at this point?

Has anyone else ever been told they have multiple cysts ... but the doctor isn't "sure" it's PKD? This is the first time I've been told this ... and, while I'd be EXTREMELY relieved to hear I don't have it ... by him saying, "You may, or may not, have PKD ... I'm just not willing to put that label on you," I just feel like I'm "left hanging."

Help! Anyone heard this before?

IrishRogue
Replies:
Subject: Research on benefits of massage therapy and PKD


Author:
Andrea Swanton
[Edit]

Date Posted: 14:11:09 02/02/04 Mon

I know that this forum is designated specifically to persons who suffer from PKD but I am doing a pathology research paper and presentation on the disease and positive effects of massage therapy.(if there are any) I've searched just about the whole internet and thought I would just ask. I have a good friend who suffers from this condition and wanted to learn more about it and what I could do as future massage therapist to ease pain etc.
Is there any reason that anyone knows about where massage therapy would hurt patient? I would love to hear from anyone who knows for sure.

Thanks so much!

Andrea Swanton
Student of Wellington College of Remedial Massage Therapy
Winnipeg, Manitoba
Canada
Replies:
Subject: Transplant


Author:
Shelley
[Edit]

Date Posted: 12:01:49 01/16/04 Fri

I was wondering if anyone out there has had a transplant and what I should expect? I have just been told that my kidney function is at 23% and that we will be starting the process for transplant. I am currently waiting to hear from the transplant group to get my donors tested. I have at least 4 wonderful people who have volunteered to donate to me. I am scared because my Mother had a transplant and then the anti-rejection meds reacted with her and she passed away 9 months after the transplant. That was less than 3 years ago so it is way too fresh for all of us. Thanks for any advice or help you can give me.
Replies:
Subject: prednisone


Author:
John
[Edit]

Date Posted: 12:45:21 06/15/03 Sun

I'm told by my most exellent nephrologist, that people are now given much less prednisone after their transplant than they used to be. Is there anyone here who has had a transplant about a year or two ago and is not exibiting the side effects of prednisone?
Replies:
Subject: creatine


Author:
KAT
[Edit]

Date Posted: 19:30:27 02/03/04 Tue

HI MY NAME IS KAT AND I AM 33 YEARS OLD AND HAVE HAD PKD SINCE I WAS 17.THE ONLY THING THAT I AHVE HAD IS BACK PAIN. I WENT BACK TO THE DOCTOR TODAY, AND MY CREATINE USED TO BE ABOUT 1.0, AND NOW IT KEEPS GOING DOWN IS THIS NORMAL? WHEN I HAD LABS DONE THIS TIME IT WAS 0.6.I REALLY DON'T KNOW MUCH ABOUT THIS ILLNESS. MY DAD PASSED AWAY IN AUG 2002 DUE TO PKD, AND OTHER THINGS.SO I WOULD LIKE AS MUCH INFO ON THIS THAT I CAN GET.
THANKS,
KAT
Replies:
Subject: hi


Author:
Donna
[Edit]

Date Posted: 19:28:04 05/31/03 Sat

I feel very alone in knowing I have PKD - well some Doctors say I do & some say I don't. From reading all the info on line about PKD I beblieve I do. Have all the symtoms except high BP. When I was told (after a year of not knowing)my doctor said that my family should be tested So I asked my mom to ask to family if they could do an ultra sound for me. Well that was months ago and still not everyone in the family has got one done. One sister said sorry but I don't want to know if I have it--stated that she's very healthy. Haven't gotten much support I guess you could say
My mom was there for me for lots of months while I was in and out of hospitals & I'm very thankful for that & one of my sisters did call and say that shes going to start a walk up in Ca & raise some money to help find a cure. I will also raise money for the cure-will walk here in CO -- I've emailed Oprah several times now in the hopes that she'll do a show on PKD I have found that not alot of people have heard about this disease. Do you think I should ask again for the family to be tested? Guess it doesn't matter one way or another I will still have it. Does anyone out there have PKD without having family history of it? thanks for reading!!!
Donna
Replies:
Subject: a question reguarding symtoms


Author:
tina
[Edit]

Date Posted: 12:46:53 07/03/03 Thu

i was diagnosed with pdk in 1986 i do not know what my function is. my creatine is a little elevated i also have high blood pressure. i have gotten many infections over the years some that landed me in the hosp and i also am starting to get kidney stones my question is has anyone ever had like a fluttering effect or like the kidneys are spasaming in some way id relly like to know this. thank you for any reply
Replies:
Subject: New to PKD, having pain and nausea


Author:
Gwyne
[Edit]

Date Posted: 21:36:34 12/11/03 Thu

Hi, I'm 33 and just found out this summer that I have multiple cysts on both kidneys and one on my liver. I thought I had a kidney stone/infection and went to the emergency room one night with a high fever, vomiting and awful kidney pain. They did a CT and no stones. I later had a renal doppler that showed all of the cysts. I'm now beginning the symptoms of all that again....pain...sick feeling, etc. Why is it doing this? Is a cyst rupturing and causing an infection? The doc I went to last time acted like it was no big deal but gave me antibiotics for the next time it would happen and stressed that I needed to start them as soon as possible. It was very unpleasant last time and I don't want to do this every few months. Is there anything I can do with diet or herbs that can help?
Replies:
Subject: PKD liver cysts


Author:
No name
[Edit]

Date Posted: 06:32:17 07/02/03 Wed

My liver is now quite enlarged due to PKD-related cysts. I know they usually do not cause problems but I am interested in what problems they COULD cause.I am particularly concerned because of the size of my liver.
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Subject: Tracing PKD through the family tree


Author:
Jeanette
[Edit]

Date Posted: 08:40:49 12/30/03 Tue

I am 31 years old & I was diagnosed with ADPKD at the age of 19. My mother & grandmother died from complications of PKD at 33yrs & 49 yrs. I have been interested in Geneaology & doing research for 7 years. I am interested in corresponding with those who have ties to the state of VIRGINIA & the following Surnames: ALEXANDER, CARTER, MARTIN, & SCHOOLS. Thank you.

Jeanette
Replies:
Subject: I believe I have pkd


Author:
No name
[Edit]

Date Posted: 20:21:45 12/19/03 Fri

I believe I have pkd, but have not been officially diagnosed because I no longer have insurance and cannot afford to go to the dr. My symptoms began with severe headaches, then I began experiencing numbness of my face, neck and eventually throughout my entire body in various places. What I hadn't thought of at the time was how I was constantly having hot and cold flashes...not like the hot flashes I had when I'd had my hysterectomy. I kept saying my thermostat was out of whack. I finally became so ill with heart palpitations and a strong hard pounding heart which sent me to the hospital because my dr thought I was having a heart attack, that I could not even walk unassisted. No drs. in the area could give me an answer. Went to Mayo's and had all sorts of testing done (this was when I still had insurance) and all they came up with was low potassium. Dr. said it was probably kidney related and gave me potassium pills and was told to follow up with dr at home which I did. My renin level was at 9 and indicated it was elevated but I have no idea what normal is so have nothing to compare it to. There was also some protein and casts and the test indicated the urine microscopy was abnormal. Since I can't get any more testing done due to no insurance, I haven't been able to find out anything else. I have noticed that when I stop taking the potassium pills, I start getting all the same symptoms as before, therefor I realize the low potassium level was not a temporary problem but one that is ongoing. I have begun have pain in my kidney area on both sides that seems to be getting worse by the day. Does this sound familiar to anyone else out there?
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Subject: Removal of Kidney's


Author:
Mary
[Edit]

Date Posted: 13:08:25 01/15/04 Thu

Has anyone ever had the polycystic kidneys removed after transplant? I am almost 15 years post transplant and my mothers kidney functions well.

My other kidneys are very large and becoming more painful every day.
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Subject: polycystic kidney disease


Author:
No name
[Edit]

Date Posted: 21:11:16 10/30/03 Thu

I have been experiencing a lot of pain in my right side, around the kidney area. A C.T. scan showed that I had a cyst in my liver, and one in my kidney, as well as two small kidney stones. (that was in Aug.) I was told that the pain is not from the cysts or stones. I just had another ultra sound done, C.T. to follow, and they found another cyst in my liver. Now they are telling me that I shouldnt be having any pain with what I have. 2 liver cysts, 2 kidney stones and one kidney cyst. I am feeling very stupid right now, the pain im in is very real. Am I crazy or are the doctors im seeing crazy?????? I just want to find out if I have polycystic disease. Or is the pain im having all in my head.
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Subject: I.V.F treatments for PKD patients


Author:
No name
[Edit]

Date Posted: 23:43:59 12/30/03 Tue

Hi,

I am searching for any information about I.V.F treatments for PKD patients. This should be treatments done on 'tube baby' to determine (by genetic test) whether it has PKD and thus be able to select the healthy 'tube-baby' and than conceiving a healthy baby (after pregnancy).
I know that technically these type of treatments are available but I am not aware of any success stories and possible location for execution.

Appreciate any of your responses.
Replies:
Subject: BIG problems with the diet suggested at the provided link!


Author:
S. Sikora
[Edit]

Date Posted: 08:23:14 01/08/04 Thu

There are some problems with that diet -- frankly, I'm shocked this would be recommended to someone with kidney problems!

Here are the problems:

1) It is suggested that whole milk be consumed. Dairy is not only high in protein (too high), but high in cholesterol (bad for blood pressure!). Fortified soy milk would have been a MUCH better suggestion.

2) White bread! Nutritionist Adelle Davis wrote, "...almost all commercial bread is made of highly refined flour loaded with chemical softeners, whiteners, agers, fresheners, preservers and mold- and fungus-growth preventers. Even breads labeled "whole-wheat," unless purchased from a health-food store, often contain most of these same chemicals." She's right... and she wrote that in 1947!! It's still true, and it's still bad for you!
Whole grain bread is the best bet.

3) Diet cola! Not only does it contain no nutritive value, but it is loaded with phosphorous! (Bad for you!)
Additionally, diet colas tend to dehydrate... something PKD patients can't afford. Water is recommended.

4) Chicken! While some people believe chicken to be safe, it is not only high in animal protein (something to be avoided for someone with kidney problems), but the meat also contains the steroids and antibiotics administered to that chicken during its "production." On top of that, the risk of harmful salmonella and campylobacter bacterium is too high. Better to stick with tofu!

5) Coffee, tea and wine! Both coffee and tea contain caffeine, something you are to consistently avoid if you suffer from PKD.
Better to suggest decaffeinated coffee (and only that decaffeinated by the Swiss Water Method or CO2; the chemical decaffeination process leaves behind unhealthy chemicals) and herbal teas that do not contain caffeine.
Alcohol is a toxin. While wine is small quantities should be fine, everyday consumption should be discouraged.

The person who designed that diet should be shot!

S.
Replies:
Subject: Re: Creatinine Level/Diet


Author:
Jerri Davis
[Edit]

Date Posted: 18:21:57 11/29/03 Sat

>>You can find some information on PKD diet on the
>>following URL: http://www.hdcn.com/inslidef.htm (look
>>at the bottom on the page).
>
>There is a very good diet program (1 minute download)
>for protecting pkd kideny function at
>http://www.andrew.cmu.edu/~sorensen/sample.htm
>It is also the third Diet and NUTRITION link on the
>PKDFoundation (www.pkdcure.com) patient resources
>webpage: Creating A Healthy Menu- a computer program
>for kideny patients and everyone else
>(kideny-healthier levels of protein, phosphorus,
>sodium)
>A leading risk in PKD heart and circulatory disease so
>cutting down cholesterol and adding heart-health foods
>like soy or fish is often recommended. You can dowload
>that program and follow the other renal/pkd diet and
>nutrtion links- but check all menues with your doctor
>/ currrent medications etc. Lots of people don't know
>how good it is to take control of diet and protien
>intake early on. You know early so you can find out
>how to adapt your diet. Best of luck to you.
Replies:
Subject: PKD


Author:
Deborah Butler
[Edit]

Date Posted: 09:31:58 09/14/03 Sun

I had my first kidney infection when I was 11. I have many cysts on both kidneys and my liver. I had both ovaries removed because of cysts. Last March I became ill. I was recently diagnosed with a hiatal hernia. After reding some of the entries on the PKD website I am beginning to think my illness is dure to my PKD and not my stomach. My doctor has me on Protonix because Nexium gave me such bad headaches, but neither medication has helped much. I am retaining fluid badly. My feet and ankles are so swollen it hurts to walk. I feel ill every time I eat,, or even drink water. One person wrote that she was turning green. I have noticed a greenish tint to my skin, but thought it was my imagination. My heart seems to beat very hard all the time. My blood pressure has always been good, but lately the bottom number has been going up. Can anyone relate to any of my symptoms? I am seeing a nephrologist next Wednesday, September 17. Are there nephrologists that specialize in PKD? If so, any good ones in Wisconsin? Any helpful information would be appreciated.
Replies:
Subject: family


Author:
No name
[Edit]

Date Posted: 12:54:04 12/12/03 Fri

Hi
I'm finding myself very alone today--my girls (teenagers) have been extremely mean to me. They say I just lay around and feel sorry for myself & that I use my PKD as an excuse not to do things. I try my hardest to be happy, upbeat, ect. but also find myself saying why me? My pain is there and the blood in the urine also more often than not just to name a few things. Is it one of those terrible diseases that people who don't have it just will never understand what your going through? I haven't been back to the doctor in some time now -- I guess just alittle tired of being told so many different things. I really should make that appt. today!! Happy Holiday Season To All!!!
Replies:
Subject: My Mom


Author:
No name
[Edit]

Date Posted: 17:53:07 10/18/03 Sat

Hi my Mom has just been diagnosed with PKD she is in her mid 50's. I am scared to death. We are waiting for the MRI results to determine what kind of mass is on both of her kidneys. They will do a biopsy to determine what the masses or cysts are cancer, tumor or what? I just wanted to know does anyone have any advice or know the best physicans who specialize in this area. They have retired to Henderson, NV. Please someone advise. Thanks and God Bless!!!11
Replies:
Subject: Life insurance/long term disability


Author:
Heather
[Edit]

Date Posted: 12:33:40 09/17/03 Wed

I was just wondering what people do regarding life insurance and long/short term disability. I can't seem to get past the initial medical form that asks about that question ("do you or a family member have kidney disease"). Do I "fudge" the form? I don't have any symptoms as of yet (normal creatine and low(er) BP. Anyone have any suggestions??

Thanks!
Replies:
Subject: RAPPAMUNE


Author:
LAUREN
[Edit]

Date Posted: 03:01:52 10/22/03 Wed

2 AND ONE HALF YEARS ONLY TAKING 4 RAPPAMUNE A DAY FEEL GREAT
Replies:
Subject: Back pain/sciatica


Author:
Debbie
[Edit]

Date Posted: 07:01:53 10/11/03 Sat

I am currently experiencing back pain that does not seem to be directly from the kidney. It is a little lower than the kidney on the right side and extends down to the upper buttocks It seems to be consistent with sciatica or some other nerve problem. Has anyone ever experienced this and could it be due to my very large kidneys putting pressure on a nerve. Fortunately, I will be having a transplant in the next 2-6 months and they will take one kidney out at the same time - hopefully that will help. Debbie
Replies:
Subject: Do you think they'll find a cure soon??


Author:
No name
[Edit]

Date Posted: 20:51:28 08/12/03 Tue

HI,
My brother was recently diagnosed with PKD. He is 21 years old. I am really sad about this because our family does not have a history of it so I don't know what to expect.
I have read many articles on the internet about new treatments for PKD being tested on humans. Does anyone know or have a guess at how close they are to a cure or at least a way to slow the progression of cysts?
From what I have read, there are many worse diseases than PKD, does anyone else agree?
Replies:
Subject: Multicystic Disease


Author:
Wanda
[Edit]

Date Posted: 06:39:17 09/16/03 Tue

My daughter was diagnosed with a multicystic Kidney Disease when I was seven months pregnant. She is now 12 yrs old but I worry that she might suffer from an aneurysm. She has had very bad headaches in the past but has never suffered from high blood presure. Can someone please reply and give me some imput.


Thank you

A very concerned mother.
Replies:
Subject: can someone give me some info


Author:
Tina
[Edit]

Date Posted: 03:27:18 11/03/03 Mon

hi my son was born with the folloing condtions at birth which he had sugery for at birth he is now 11yrs we have bean told by the hospital that he will have problems in his late teen but do not no to what degree .the things he had are ANTENATAL HYDRONEPHROSIS PREVIOUS BILATERAL URETEROSTOMIES RIGHT NEPHRECTOMY LEFT RENAL TRACT SCARRING can anyone tell me what the long term out come of having this is also can any one tell me what the folloing means and if these leves are normal gfr 58mls/min/1.73mts serum glucose 4.8 serum osmolality 293 gfr 59mls/min/1.73mts
Subject: Cyst in left overy


Author:
pummey
[Edit]

Date Posted: 06:29:19 11/02/03 Sun

I am 32 years old married lady.From last year I am taking alopathic treatment on infertility( My PRL level is high- 32).In last month during ovulation study suddenly in sonogrphy DSoctor found that there is 33mm cyst in left overy.
And also 10 mm fibroid in fundus.
Is there any solution on it or i have to undergo operation?

Please i need solution from u I whant to pragence .
Subject: PKD concerns


Author:
No name
[Edit]

Date Posted: 18:08:52 09/26/03 Fri

My daughter is dating a 17 year old who has PKD. His blood pressure is being controlled with meds. I don't want to sound stupid or trivial, but we are taking him to disney/ universal studios with us, but i know so little about this disease. Is it safe to go on high speed thrill rides? I read that adrenaline can speed cyst developement. i am reluctant to ask him his limitations as he is very touchy about being treated differently than any other 17 year old. any response will be greatly appreciated.
Replies:
Subject: Hoping for friendly voices


Author:
Claire
[Edit]

Date Posted: 21:41:23 03/22/03 Sat

I'm 31 years old but I have known my entire life that I have PKD and my kidneys were a ticking time bomb. When I was born, the doctors found the cysts in my kidneys with a sonogram but didn't believe the results and did exploratory surgery to confirm the diagnosis. Since then, I have lived with the scar, but tried to live a normal life, defining myself as "asymptomatic". This past December my mom, who is 56 and also has PKD, went into ESRF and is now on dialysis. At this point it looks like I have one kidney that is so enlarged it may have to be removed. I hate the idea of being defined by this disease, but it seems to be taking over my life. My husband and I have decided not to have children so that we don't risk passing this on to the next generation - I envy the women with PKD who have decided to go ahead and have children anyway - they seem to be the eternal optimists - but I just can't justify it for myself. If any of you have dealt with this overwhelming depression and gotten over it, please share your insights with me - I would like to be able to get past this.
Replies:
Subject: Does this sound like PKD?


Author:
Lisa
[Edit]

Date Posted: 16:00:31 07/16/03 Wed

Hello... I've been doing lots of research on the net and I'm not sure if I've just scared myself or if I'm neurotic and just making something out of nothing. I went to the ER 9 days ago for abdominal pain. A CT scan revealed that I had a kidney stone, and one small bilateral cyst on both my left and right kidney, and a cyst on my liver and a cyst on my ovary. Is it possibly that I have PKD with only 2 cysts on my kidneys? When I went to the doc she was being overly bright saying "not to lose any sleep" over my CT scan. She did schedule me to have ultra sounds which I had today. And I have an appt with a urologist on Monday. I have had lots of UTI's in the past, no significant high blood pressure, but now with the kidney stones, history of UTI's, kidney and liver cysts, I'm convinced I have PKD. But then I think that two little cysts compared to hundreds on folks with PKD seems like I'm blowing something way out of portion. I can't seem to find what the "standard" number of cysts are for a diagnose of PKD. Please shed some light on your diagnose so that I can compare. Thanks! Lisa
Replies:
Subject: Daily Cyst Pain


Author:
Robin
[Edit]

Date Posted: 11:28:56 09/15/03 Mon

I am 42. I was diagnosed with PKD 20 years ago after numerous bouts with UTIs that immediately moved to my kidneys. I have been on BP meds and diuretics (propanolol/inderal and maxzide)for years and my BP is good. My kidney function rivals that of healthy females for my age. My problem? There are 2:
one is simple vanity-my abdominal area is HUGE and struggling to accomodate tons o'cysts-several of which are 6-8 inches in diameter in both kidneys (which are twice normal size, anyway)and a grapefruit size one on my liver.
There, I admitted it. Shallow self aside...I have been in constant pain (varying degrees-some throbbing and annoying, some where I want to strangle the next person who speaks to me). There is now rarely a day when I don't experience some kind of physical pain. Just some days better than others. I have been prescribed ultram for daily issues. Darvocet for more intense pain. Three weeks ago, had a bad bout of pain. Saw my primary care doc-urine showed no bacteria or blood (as is typically the case for me). She gave me a shot of toradol and sent me home to rest with the Darvocet scrip. My specialist said I had to be the one to gauge the level of pain I was willing to "live with" before he would suggest subjecting myself to aspiration of cysts which could lead to infection of the kidneys. There has never been any talk of deroofing or denervation and such that I read about on the board and PKDcure info.So.....can anyone share information about the pain they deal with daily and how they manage it? I am a manager in an internal consulting arm of a well known insurance company. I am expected to conduct myself professionally and unemotionally in my business dealings. Again, some days better than others. I am in pain now as I write but the ultram takes some of the edge off. Oh yeah, and my heating pad is my best friend. (one at the office and one at home). Thank God in heaven above that I was blessed with the most understanding husband a girl could hope for. He, too, is very concerned about the ever increasing downtime for me as I deal with this pain.
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