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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: Tolvaptan or OPC 31260


Author:
Antonio Calvi
[Edit]
Date Posted: 11:52:06 03/09/05 Wed
Is there anybody aware that Otsuka a Japanese pharmaceutical with branches in US and Mayo clinics are trying to develop a new drug named Tolvaptan that could help people like us with PKD? According to my understanding this new drug could reduce the cysts and stop their reproduction, but at this stage it is in experimental phase, I beg you my friends that if this drug results positive and goes to the FDA for approval write to them for a quick approval since it could save many lives, thanks and god bless you!!!!!!
Replies:
Subject: Strep Infection?


Author:
Diane
[Edit]
Date Posted: 16:32:57 03/24/06 Fri
About a week ago I saw my doctor. I was having abdominal pain. He ran a urinalysis and today he called telling me I have a low-level strep infection. How did he tell I had that from urine? I had no throat pain. I asked him if it was related to the PKD and he said that it's "unusual." I'm just overwhelmed. I feel so lost.
Replies:
Subject: Pain


Author:
No name
[Edit]
Date Posted: 13:35:21 03/13/06 Mon
I have been recently diagnosed with PKD in January. It was diagnosed incidentally after having an MRI for my chest pain. My doctors are saying that my chest pain has nothing to do with my PKD. Has anyone have or had experience with chest pain? Also for the past 2 months I have been experiencing side pain and headaches. Can anyone describe the type of pain they might be experiencing and how you generally feel day to day. My kidneys are not enlarged and have good kidney function. Thanks
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Subject: Can a person live on dialysis without both kidneys


Author:
No name
[Edit]
Date Posted: 07:38:55 03/31/06 Fri
My brother was told recently that he will need to start dialysis next week. They also told him that they will have to remove both of his kidneys. Can he live for a long period of time like this if he doesn't find a match. We have aunts, uncles and cousins willing to see if they are a match. My mother, other 2 brothers and I can't give one of our kidneys because we have pkd also.
Replies:
Subject: Cold Meds


Author:
Denise
[Edit]
Date Posted: 21:13:21 03/23/06 Thu
Can anyone tell me what kind of cold medication & allergy medication we are able to take? Thank You
Replies:
Subject: pain from pkd


Author:
No name
[Edit]
Date Posted: 21:29:20 04/03/06 Mon
Has anyone gone through pain management to get releif from kidney pain. What did they do and how has it helped. I have tried darvocet and ultram that my nephrologist prescribed but no relief. My kidneys are very large and I only have 25% function. Please let me know if helped and what is involved.
Replies:
Subject: Is decafeine safe for PKD?


Author:
Pink
[Edit]
Date Posted: 16:15:46 03/24/06 Fri
Hi all,

I just wonder is decafeine safe for PKD?

I am in rather normal- high blood pressure. My kidney function is 100% but I would like to control my food intake and also cafeine. I know cafeine is not good but I still like to have coffee every morning. Does decafeine mean no cafeine at all? or just a little?

Thanks
Replies:
Subject: PKD and pregnancy


Author:
Becka
[Edit]
Date Posted: 11:21:06 03/29/06 Wed
A friend's teenage girlfriend wants to have a baby and is using the fact that she has PKD as a reason to get pregnant right away. According to her, she will need a transplant in a couple years and afterwards won't be able to bear children. From what I read online, pregnancy before a transplant for women with this condition is very dangerous to the mother and baby, but afterwards is much safer. She thinks she might already be pregnant because she said she missed her period this month but from what I read, women with PKD have irregular cycles so is it possible she could even tell? I think she might be using her condition, if she even has it, to manipulate my friend. Is there any information I can give to my friend before he agrees to such an imprudent decision if the decision has not already been made? Any advice would be most appreciated.
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Subject: No Needle Sticks in Arm Veins!!


Author:
Lorelle
[Edit]
Date Posted: 17:57:56 03/05/06 Sun
You may never need dialysis, but 50% of PKD patients will. Just in case you ever do, it is critical that you protect your arm veins for creation of a natural A/V fistula. PKD patients should NEVER, NEVER, NEVER, let anyone stick a needle in their arm veins for any reason!! Every single stick creates scar tissue and could significantly affect your life span later. Having veins for creation of a natural A/V fistula may add many years and a quality of life far beyond what you can currently imagine. If you protect your veins and never need them for dialysis you have lost nothing. If you need them and can't use them for dialysis it will be a catastrophe! From the National Kidney Foundation:
"...Preservation of Veins for AV Access

A. Arm veins suitable for placement of vascular access should be preserved, regardless of arm dominance. Arm veins, particularly the cephalic veins of the nondominant arm, should not be used for venipuncture or intravenous catheters. The dorsum of the hand should be used for intravenous lines in patients with chronic kidney disease. When venipuncture of the arm veins is necessary, sites should be rotated.

B. Instruct hospital staff, patients with progressive kidney disease (creatinine >3 mg/dL), and all patients with conditions likely to lead to ESRD to protect the arms from venipuncture and intravenous catheters. A Medic Alert bracelet should be worn to inform hospital staff to avoid IV cannulation of essential veins.

C. Subclavian vein catheterization should be avoided for temporary access in all patients with kidney failure due to the risk of central venous stenosis.

Rationale Venipuncture complications of veins potentially available for vascular access may render such vein sites unsuitable for construction of a primary AV fistula.

Patients and healthcare professionals should be educated about the need to preserve veins to avoid loss of potential access sites in the arms and to maximize chances for successful AV fistula placement and maturation. Subclavian vein catheterization is associated with central venous stenosis.20,26,102 Significant subclavian vein stenosis will generally preclude the use of the entire ipsilateral arm for vascular access. Thus, subclavian vein catheterization should be avoided for temporary access in patients with kidney failure. ..."
http://www.kidney.org/professionals/kdoqi/guidelines_updates/doqiupva_i.html#doqiupva7
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Subject: Tolvaptan


Author:
No name
[Edit]
Date Posted: 08:34:22 04/04/06 Tue
to mico of the philippines. Hi, i am Peter of the Philippines too. i have tried to reach otsuka thru its agency recruiting patients for trial. email address is bkester@mmgct.com. Her name is Barbara Kester. If you have a nephrologist maybe you tell your nephrologist to be listed in their site. We should also contact otsuka philippines too. tel. 8449266

you can reach me at pidroo1968@netscape.com. maybe we can discuss this and look for a nephrologist to be our supervising doctor for trial
Subject: Polycystic Kidney Disease(5months in utro/unborn child)


Author:
Jacqueline
[Edit]
Date Posted: 03:39:20 04/01/06 Sat
does anyone know of the stats on unborn children who have polycystic kidney disease? Any know treatments? 5 months along in pregnancy and baby was diagnosed with this disease? HELP? Thank you!
Replies:
Subject: cyst unroofing


Author:
No name
[Edit]
Date Posted: 06:09:31 03/30/06 Thu
I am a 48 year old female with PKD. I live in Illinois. I went to Mayo Clinic(Rochester) for my unroofing. They first tried draining a few cysts a neddle, which gave improvement, but temporary. I had my surgery a week ago Tomorrow. My left kidney only. At this point I am feeling pretty good, still a little sore at incision sites. But I do feel right now, the heavy, fullness on my left side is much better, and my lower back pain is relieved. Will wait awhile before I condsider doing Right side. My surgeon was Urologist George Chow. No bed side manner, but I also had NO complications(i.e.-urine leak)So that's great!
Replies:
Subject: combined liver & kidney transplant anyone?


Author:
Sheryl
[Edit]
Date Posted: 14:19:21 03/19/06 Sun
Have polycystic kidney disease and polycystic liver disease.
I am 43 years old and am now on the waiting list for this multi-organ transplant. Feeling quite overwhelmed with this prognosis and hope to talk to someone who has been through this. Apparently there is a very good prognosis for those having liver transplants due to polycystic disease as compared to other liver diseases. Never thought that this would be in the cards although I anticipated the eventual need for a kidney transplant. Thanks for your help!
Sheryl
Replies:
Subject: kidney size and blood tests


Author:
no one special
[Edit]
Date Posted: 05:46:44 03/23/06 Thu
hi, do any of you know what are the sizes of normal kidneys? also, what are the normal readings of creatine and bun of blood tests? thanks!
Replies:
Subject: PKD and hearing loss?


Author:
tara
[Edit]
Date Posted: 09:06:18 03/13/06 Mon
I was diagnosed with PKD in 1995 when I was pregnant with my first child. I have not seen a nephrologist yet but think I need to after reading this board. I also have cysts in my liver. I have frequent headaches and have had hyperthyroidism. Does anyone here also have hearing loss? I am almost legally deaf and was told that my kidney disease caused it because the kidneys and cochlea are formed at the same time gestationally. Also, my son who is 10 has headaches and hearing loss, do I need to take him to see a genetist to test him for PKD? His ultrasounds don't show cysts but I understand it might not show up until he is older. Can anyone recommend a nephrologist in Northwest Indiana? Neither my son's pediatrician or my Dr. seem to know anything about PKD. Thank you.
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Subject: Kidney transplant


Author:
Jerry Phelan
[Edit]
Date Posted: 15:22:19 03/19/06 Sun
My husband has esrd, is on dialysis but also had a ruptured colon and now has a colostomy. He has a brother and sister who are potential living donors but was told to have the colostomy reversed before getting the transplant. He tried to have the reversal done last may but it failed resulting in much infection and very severe complications. He still would like to try to have a transplant but feels that trying to have the colostomy reversed first is too risky. Are there any transplant facilities that would consider him?
Subject: Skin Discoloration in Ab Region


Author:
No name
[Edit]
Date Posted: 14:22:14 03/09/06 Thu
I have PKD and I've been experiencing localized pain on my left side, directly under my ribcage. This has been for about 2 weeks. LaI had two days of bad pain followed by 2 days of no pain. Then a bruise appeared that looked like a donut in that same area. The pain returned and was excrutiating last night. I almost went to the ER. But then it went away. The same donut-shaped bruise re-appeared this morning.

Does this sound like it could be something related to the PKD? My neph's nurse told me to go to my GP. It's on the left, so I'm wondering about my pancreas/spleen?
Replies:
Subject: Patient Assistance Funds


Author:
Barbara Lafferty
[Edit]
Date Posted: 18:14:09 11/07/05 Mon
I am 33 years old and disabled from my Autosominal Dominant Polycystic Kidney Disease. I have 2 children, ages 13 and 3 and am having trouble keeping up with my living expenses, especially since my ex-husband decided to stop paying his child support. Does anyone know of an organization, foundation, etc. that assists PKD patients that are not yet on dialysis but are disabled from their PKD? I found several places that help PKD patients but they require that you must presently be on dialysis. Much abliged and keep the faith.
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Subject: Need some advice


Author:
Larry
[Edit]
Date Posted: 04:28:21 11/09/05 Wed
Ok folks I need some advice. I’m a white male 51yo 220lb Creatinine 3.4-3.6 and GFR 19-20
My nephrologist says I am years away from transplant or even dialysis, but my insurance company
is saying something totally different. They have contacted me about considering getting a fistula and getting on
the transplant list. I have gone through 2 de-roofings and an umbilical hernia surgery and now have another
umbilical hernia, that neither my nephrologist or primary care doctor will even consider fixing at this stage
I was considering my options between peritoneal and hemodialysis. What are your opinions?
Replies:
Subject: Text book of PKD


Author:
Jesse
[Edit]
Date Posted: 10:56:56 12/20/05 Tue
I am a 30 yr old female with PKD. I was 5 when it was found. I have had procedures so far to help with pain and cyst size. The last one was a bilateral cyst decortication. But it has only been 6 months and I am having pain again. I feel like sometimes it is all in my head but I know it really hurts. I have nobody to talk to that has this and no where to go to meet people like me. I am nothing of the text book or case studies. Nothing I have been through I can ask others about to compare. I can look things up on line but they never put in any of the things I have done at the ages I have. I started having problems at 13 and now it fells like I am just waiting for something to happen. My doc. gives me three years untill I have to have a kidney trans. But he isn't sure it will even be that long. If anyone out there knows of any groups or confrences or anything I can do to speak to and maybe compare. I keep notes for my seven yr old that also has this. thanks to anyone that can help.
Replies:
Subject: pain


Author:
tycene
[Edit]
Date Posted: 19:42:29 01/04/06 Wed
does any one take pain meds for pain i do i feel like its all in my head when i go for my checkups the doc doesent understand why i have tremndous pain.
Replies:
Subject: Looking for CT nephrologist


Author:
Stew
[Edit]
Date Posted: 07:26:09 01/12/06 Thu
I've known about my PKD since I was 35 (I'm now 46)and have been relatively symptom free. Just the other day I was diagnosed with a kidney infection, which I know is a complication of PKD, and decided that it's time I start seeing a nephrologist.

I live in Southbury, CT and am looking for a nephrologist within 45 minutes of where I live.

My Dad has PKD (he's had a kidney transplant for 12 years) and I know that, eventually, all of my health decisions are going to focus around my kidneys and PKD. In addition to being experienced with treating PKD, I need a nephrologist who will treat me like someone who is capable of understanding test results and dealing with PKD head-on.

If anyone can recommend a nephrologist in my area, I would appreciate it.

Thanks.
Replies:
Subject: kidney stones


Author:
Vicki
[Edit]
Date Posted: 16:01:52 02/12/06 Sun
I have been diagnosed with medullary sponge kidney disease
my problems are infections and kidney stones. The last 7 months have been the most difficult of my life in May 05 a kidney stone became stuck in my ureter went in for same day surgery my urologist removed it in July 05 same thing happened only this time it was both ureters in September 05, November 05 and January 06 and just this week the same thing happened so far my insuranc has paid every one of these same day operations. My urologist said between both kidnys I have over 30 stones I have talked with him about removing the stones on my lef side because but he said that the risk of major problems is to great. Has any one ever been in this situation?
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Subject: pkd and brain aneurysms


Author:
No name
[Edit]
Date Posted: 13:30:07 02/15/06 Wed
in may of 2005 i had a brain aneurysm and was in icu for a week, i then had test run and found out i had pkd. I have several relatives in my family that have this, three that have had kidney transplants. Two days after my aneurysm my cousin had on also, and he also has pkd. I went to the specialist and she said that she really did no know why I was there, that her father had pkd and has had no problems and that I should no worry, because mine would probaly not give me any problems till I am in my 80,s. I would just like to know if anyone else has had this problem. Thank you
Replies:
Subject: polycystic kidney disease


Author:
Michele
[Edit]
Date Posted: 15:46:23 02/16/06 Thu
Hi
My name is michele and i have pkd. I would love to talk to others who are in the same situation. Iam 49 and at this time doing well. i stil have a normal creatin level. I hope I get a response. Today is 2-16-06.
Replies:
Subject: Peeling scar tiisue


Author:
Wen
[Edit]
Date Posted: 02:13:10 02/18/06 Sat
I'm not sure if I am in the right place - please feel free to tell me so.

I have been in an dout of the hospital for about amonth now. Currenlty it is 5:00 Am and I am just waking up from the last round of pain medications given to me in the Er on FRiday night.

Each time I go in, they focus on everything BUT my kidneys - saying that if it were a kidney problem, it would show in my urine. But here is the thing - it never did when I was small.

I had surgery on my kidneys at aaage 6 and spent years trying to find out what was going on - now the surgeon who did the surgery had "lost" my records.

A few yers back I learned that my kidneys had scar tissue on them and one Er doc told me that it appeared to be peeling and causing pain.

Has anyone here ever experienced peeling tissue in the kidney? I am trying to find out if this could again be the source of my pain - but dont know the lingo or anything to get anyone to take me seriously!! Its all so frsutrating. LLately I just feel like the pain is all in my head - since no one can tell what what IS wrong - ARGH!
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Subject: Herbal Medicine


Author:
zara
[Edit]
Date Posted: 22:24:50 02/19/06 Sun
Has anyone out there with pkd tried herbal medication? If so please share your stories. I have pkd, I am 32yrs old and found out more than 10yrs ago. I've only had thus far two painfull experiences. The first time I had to go to the ER because of the pain, I got a shot of demeral and slept for hours and they gave me tylenol with codeine.The second time I stood in bed for a week and with each passing day it would get better, i got a rx. for tylenol with codeine from my boss (an N.P.) but thankfully didn't need to use it. I just took OTC tylenol and stood in bed. It help but unfortunatly I lost a weeks pay.
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Subject: Questions about my kidney ultrasound


Author:
Tom
[Edit]
Date Posted: 02:20:49 02/21/06 Tue
Hi folks!

My name is Tom and recently had an ultrasound of my kidneys for possible diagnosis of PKD. I'm 39 and in good health but I noticed that my urine is sometimes very foamy and it has a strong odor. My blood pressure is also a little high but other than that I have no symptoms. My father died at 44 from PKD as did one of my uncles. Hence why I needed to get my kidney's checked out. Here is the medical report:

Renal ultrasound: 2/7/06

Sonographic findings: there is a family history of polycystic kidney disease.

The right kidney measures 11.4 cm x 6.1 cm x 5.1 cm
The left kidney measures 11.5 cm x 5 cm x 5.1 cm

There appears to be mild cortical thinning bilaterally but there is normal parenchymal echogenicity.

There is no hyrdonephrosis, masses or nephrocalcinosis.

Bilateral ureteral jets are noted.

The bladder is normal as visualized.

Conclusion: mild bilateral cortical thinning.

So there you have it. I didn't see anything about cysts but I'm still not fully convinced I don't have PKD. I'm also a little concerned aout the "mild cortical thinning" that was found. What exactly is that and does it have anything to do with PKD? Should I seek a CT or MRI scan to better see what my kidney's are doing? Thank you for reading and for any advise. Take care!
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Subject: low grade fever after dialysis


Author:
nancy
[Edit]
Date Posted: 18:27:50 02/22/06 Wed
I have been on dialysis for about six weeks, I go three days a week and after each session I develop a low grade fever. They have done blood tests and all came back nective. Has anyone else have this situtation? I have one kidney and looking for a six enigene match for a transplant. I'm frustrated by the fevers, it make recovery difficult.
Replies:
Subject: PKD and Chronic pain


Author:
Sandy
[Edit]
Date Posted: 00:40:32 02/26/06 Sun
I am 42 year old female with pkd. I had 35 cysts removed by deroofing just over a year ago. Now I am out of work due to the pain from the kidney area. Only my left kidney is causing the problems. I currently take kadian 2x daily and lots of blood pressure meds, also take perocet for the break thru pain. Pain is always in the same spot and goes from a dull ache to sharp stabbing pains. Sometimes just getting out of bed or out of a car is a challedge.
I have good days and bad days. I have to be careful not to do to much. If I overdo it my side tells me by hurting more. (I live around a constant 5 out of 10 for pain level) (I can not sit for 4 hours in a chair, let alone going for a full day of work for 8)
I run out of gas quickly and can't sleep well. I also have problems with memory and focusing.
Looking for others in the same boat.
Sandy
Replies:
Subject: PKD and kidney stones


Author:
Martha
[Edit]
Date Posted: 11:02:19 02/27/06 Mon
Hi, My husband is 50 years old and has PKD. He is in constant pain and always tired. His kidneys are not only full of cysts, but also kidney stones. The last couple of weeks he has been passing one or two stones. Does anyone else have this problem and how have you "managed" it? We have been told that the surgeries that they usually do for stones are not safe. Any ideas would be great. We are currently using strong pain meds, water...
Replies:
Subject: Polycyctisc and Chronic? the same or different


Author:
Dana
[Edit]
Date Posted: 15:39:19 02/27/06 Mon

My fiance was diagosed with polycyctic disease a few months ago at the hospital. he now takes blood pressure medicine and was told by his regular physician that he has chronic cysts on the kidneys. Is that the same thing as polycystic disease? His regular physician also told him he wasnt going to send him to a neurfoloigst (sp) unless he was getting other signs or symptoms? are these diagnosis bothe the same thing?please email me back.. im confused thanks
Replies:
Subject: Recently Diagnosed--q about diet?


Author:
Diane
[Edit]
Date Posted: 17:14:48 03/02/06 Thu
Hi Everyone

I was recently diagnosed with PKD. My father died from complications of this illness in 1989. I was 15 then, and my understanding of the disease and its impacts are of course filtered through memories of his deteriorating health. I'm glad to have found this board.

My doctor said that right now there is really nothing I should do--my kidneys are 15 cm and 16 cm, the largests of my cysts between 6 and 7 cm. He said that dietary changes really aren't necessary at this stage. I saw some stuff online about caffeine and sodium restrictions, but my nephrologist said that's not a big factor for me right now. I want to know what I can do. If I just had a plan I would feel more in control. My blood pressure is good. I'm a vegetarian already. Should I give up caffeine and sodium? I'm confused.

Thanks for your help.
Replies:
Subject: PKD and breast cysts


Author:
Sharon
[Edit]
Date Posted: 09:40:53 03/05/06 Sun
I've asked this question before and haven't had much feedback but will pose this question again. Do any other women with PKD have trouble with breast cysts? I started seeing a new family doctor about a year ago and he tells me there is a correlation. Any comments on this?
Replies:
Subject: Pain Medications


Author:
Diane
[Edit]
Date Posted: 20:43:12 03/06/06 Mon
Hi there. I was wondering what over-the-counter pain medications need to be avoided when you have PKD. Thanks in advance. :)
Replies:
Subject: Test's to request


Author:
Denise
[Edit]
Date Posted: 17:19:13 03/08/06 Wed
Hi, I was diagnosed with PKD & PLD about 4 yrs ago and havent been to the doctor since. I need to go now because my liver is starting to bother me and I'm having flank pain, I also have slightly elevated blood pressure (141/78). Can anyone tell me what test's I need to request from the doctor because they may not be totally up on what should be done for PKD patients. And they wont let me see a nephrologist at least not yet. I just dont know what to ask for. Any help would be appreciated. Thank You in advance.
Replies:
Subject: Worried about rate of Kidney growth


Author:
Steve
[Edit]
Date Posted: 10:02:50 03/03/06 Fri
Hi all. I have reccently been diagnosed with PKD. I am 38 years old. I went in for an ultrasound when I was 32 because I was kicked in the kidneys and they found the cysts then. (missed a block while practising Taekwondo) My left kidney had many cystys my right only 2. They thought it was PKD then but were not 100% sure. I have no known family history of it, though my dad who died at age 62 of heart failure may have had it and not known it. I had another ultrasound done 2 weeks ago because my lower back has been bothering me and my kidneys have both grown. My left went from 11.6 cm to 15.1 and my right from 10.8 to 12.7cm over the past 6 years. My neph ran tests and both kidneys are functioning 100%. This is good I know, but I am concerned about the rate of growth. My left kidney has grown 24% in 6 years. to me that is a lot but my neph is more concerned with functionality than size. I have some lower back discomfort now on the left and am worried what life will be like in another 6 years if they continue to grow like this. I have dropped caffiene from my diet starting a week ago and am trying to limit junk food and eat clean.The past 6 years I would have about 12 oz coffee every AM and ate fairly well but had my share of junk food too. I am also on Lisinopril med as I was borderline high BP. Hopefully that helps slow down the rate of cyst growth too. I like my neph so far (1st time meeting with him)but am a bit put off that this rate of growth was not addressed and that slowing it down was not addressed. We talked at lenghth about the PKD but his answer on diet and exercise was the standard "there are no studies that confirm that diet will help". We both agreed that if I wanted to cut caffiene or change my diet to fewer processed foods it can not hurt - so I have taken these steps. Anyone with more experience with PKD have any advice?
Steve
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Subject: To my friend CAREY Urinalysis


Author:
Sam
[Edit]
Date Posted: 12:21:45 03/02/06 Thu
Carey please check out this site http://www.emedicinehealth.com/articles/18234-5.asp-I am aware of all the other tests for PKD as,I have had all of them. But,I also know a simple urine test can detect kidney problems as,I was in 1978. But did not go on dialysis until 1999. As,I got closer to that point,I did have the other tests all done. No matter which method is used;hopefully in the end you do not have any kidney problems. Deroofing at one time was common practice;it doesn't work for very long and most people end up becoming narcotic dependent in the long run.Nice talking to you Carey. SAM
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Subject: Tired adn magnesium levels


Author:
Mel
[Edit]
Date Posted: 09:29:06 03/03/06 Fri
I am a 33 year old mother of 2. I have had issues with my magnesium levels for the last 3 years in my blood. I guess it causes fatigue as well. Does anyone else out there have issues with their magnesium levels? I guess according to my nephrologist they are seeing a connection between polycystic patients and a low level of magnesium in the blood. I am still in the average range for things but in the low average of average. My blood pressure is really low which is makes my dr. happy. I am not on any meds as of now other than the mineral slow-mag. This casues major stomach pains but I figure it is still wise to take them. Any help or knowledge anyone has would be greatly appreciated. Thanks
Replies:
Subject: Re: Deroofing and Draining


Author:
Diana
[Edit]
Date Posted: 13:12:22 01/08/06 Sun
Hey Al,
I was Medical Boarded out of the Air Force in 1991 when they discovered I had it. They said that I could finish out my last year (had been in 3 at the time) but I would not be able to re-enlist, or they could MEB me out. Anyway, I am now 38 years old and have 3 children. I have now discovered that the chances of them getting it are greater than I thought. My doctor says 75% because it is so dominant in my family. 3 out of 3 kids got it. All 3 of us are girls. I have it the worst in my family. My father made it to 57 before his kidney's failed. I pray that I will be so lucky. My kidneys are now protruding from my body. My liver is huge also.

Good Luck to you and feel free to contact me at any time.

Diana
Replies:
Subject: Explosive diarrhea since beginning dialysis?


Author:
No name
[Edit]
Date Posted: 18:26:01 01/25/06 Wed
Has any dialysis patient experienced sudden explosive diarrhea? It comes without warning. Been to numerous nephologists/gi/etc all say never heard of it...Your body has to absorb all the dialysate so it makes sense it can happen. Tested for bacteria, follow renal diet, takes meds, it is awful. Beginning to think about stopping dialysis. I can not live worrying about pooping at the mall or in a restaurant. My late sister was on hemo for 5 years and she had the same problem. She would be sitting in church and feces would just run without any warning. Colostomy was being planned and she died. I can not live with a bag filled with stool attached to my body. How can I stop this awful thing it is ruining what life I have left. Please please help PKD is bad enough, so is dialysis but the feces running out of my rectum is the worst. Please help me..
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Subject: what to wear?


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[Edit]
Date Posted: 07:35:43 06/10/04 Thu
This will sound trivial next to everyone suffering physically. To you, I apologize. My suffering at this point is more emotional. I am a small framed woman in my mid forties. I am so tired of people innocently inquiring about when I am due. I politely respond that I am not pregnant, but have polycystic kidneys.
Does anyone have any tips on what a person can wear which would minimize my abdominal area. I know I can't be the only person with this problem and hopefully someone else has found a style which helps her. Thanks, T
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