04/10/00 20:04:13| Name: Rich Simmons | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes-don't know | What's your age/gender?: 52/male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Fishkill, NY | Is it alright for others to e-mail you?: yes |
Comments:
| Name: Dorothy Barron | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 21% | What's your age/gender?: 53/f | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Kentucky | Is it alright for others to e-mail you?: yes |
Comments:
I've been told I need to start thinking about dialysys and a kidney transplant. Would like to have others thoughts if they have been through or are going through this. Thank you.
| Name: Vanessa Bott | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/100% | What's your age/gender?: 17/female | Are you on Dialysis/what kind?: not yet |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: California | Is it alright for others to e-mail you?: sure |
Comments:
I got PKD from my dad. He soon will be on Dialysis. It's really hard for me to see my dad so tired all the time, but there is nothing I can really do about it. Ever since I found out that I had PKD I have been a good girl by eating and drinking right. I hope there is a cure for PKD before I have to go on Dialysis.
| Name: Christine West | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: Yes 42% |
| What's your age/gender?: 48/Female | Are you on Dialysis/what kind?: No | Do you have a kidney transplant?: No |
| Where do you live? List state, area or country: 14 Caspian Court, Woodcroft Farm, Adelaide, South Australia, Australia | Is it alright for others to e-mail you?: yes |
Comments:
I have known about my PKD for 15 years. It appears that I may be a "spontaneous mutation" (I've always been a spontaneous person, but I'm not too sure about being a mutant!!!) and I have managed to keep my PKD at bay until recently. My creatinine and urea levels have begun to be of concern and I'm keen to do as much as possible to maintain my current comparatively healthy status for as long as possible. I work full-time (in hospital administration - ironic isn't it) and have two daughters aged 11 and 15 so my life is pretty busy. I've noticed lately that I seem to be getting tired more easily than I used to, so I've been having vitamin B12 injections to try and give me a bit of a boost. I'm under the care of a wonderful specialist and have a pretty healthy lifestyle, so I'm trying to maintain a positive attitude and control this disease instead of letting it control me. I look forward to sharing information and ideas with anyone who would like to contact me and would also like to say how much I appreciate all of the information which I have been able to obtain from the various websites I have visited. It's wonderful to have the technological advantages of instant communication available as in the past it has been very isolated and accessability of infomation has been relatively limited here. Once again, I would be happy to talk to anyone who would like to contact me.
Kind regards,
Christine West
| My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: not yet--several family members have and I'm looking for info | What's your age/gender?: female |
| Is it alright for others to e-mail you?: yes |
Comments:
I have had several family members diagnosed with pdk and so has my husband. I was checked several (10) years ago, looked fine. Same with my hsuband. Do you know any stats thay may help me. We have a two year old and want to keep as up to date as possible. Let me know anything you can as soon as you can.
| Name: Pat Lubben | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 40-50%? | What's your age/gender?: 55/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Wonder Lake,IL | Is it alright for others to e-mail you?: yes |
Comments:
pkd foundation is having a convention in Illinois in June I think. any info?. It's June 9-11 in Oak Brook, west side of Chicago. It's $125 if you're a member.
also may have to start taking epogin shots per dr. anyone taking them now and has it made you feel better or are you sorry you started them?
| Name: bernadette | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: don't know if i have it |
| What's your age/gender?: 29, female | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: pittsburgh,pa 15206 | Is it alright for others to e-mail you?: not yet |
Comments:
i'm not sure if i have the disease, but it is widespread on my father's side of the family. last year my 19 year old cousin died from it. this year i found out another cousin has it & her doctor wants her to terminate her prgnancy because the stress of going through labor may cause a blood vessel in her brain to burst. most of the people in my family who have died from pkd had brain anuerysms (hope i spelled that right). i am very scared. not only for myself, but for my 6 year old daughter as well. i'll keep
praying for an end to this disease. god bless you all.
| Name: Kelly Tucker | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, 46% | What's your age/gender?: 36/Female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Arkansas | Is it alright for others to e-mail you?: Yes |
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| Name: Theresa Roberge | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, notsure how much function | What's your age/gender?: female , 39 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Cedar Park (Austin) TX | Is it alright for others to e-mail you?: yes |
Comments:
I have known I have polyystic kidney for several years. My doctor just said I need to be on a low protein, high carb diet and I found this page looking for information.
| Name: Mycool | My URL: Visit Me |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: GB |
| Is it alright for others to e-mail you?: NO |
Comments:
Hello. I am here to check how this all works first!
Bit of a bami, and I skid on ice!
Diane are you reading this? It me!
| Name: preston s. parkerson | My Email: Email Me | Do you have PKD? Approximately how much kidney function do you have?: yes/ don't know |
| What's your age/gender?: 42 male | Are you on Dialysis/what kind?: no | Do you have a kidney transplant?: no |
| Where do you live? List state, area or country: jacksonville, fl 32206 | Is it alright for others to e-mail you?: yes |
Comments:
I was misdiagnosed 10 years ago. I am or was a histologist, working with xylene, alcohols, and formaldehyde, the worst was the xylene ( which persons with nervous, liver or kidney disorders should not work with). We had to have regular check up's for liver and spleen. The doctor thought my liver and spleen was enlarged and ordered scans for these organs and found 3 cysts on my liver. I had elevated blood pressure, 170/130 and refused blood pressure medication, only because I don't do any drugs. I was not diagnosed with PKD until 5 years later when I had this extremely painful mass underneath my left rib cage. The doctor ordered a ct scan of abdomin which revealed I had advanced stage APKD. I am now taking blodd pressure medicine, Lotril 5/20, which is doing a great job regulating b/p. My kidneys are enormous and I rupture them frequently, mostly left side. I was involved in an automobile accident almost 4 years ago which damaged my left kidney and also left me with 9 damaged vertebre's, of which 3 are pressing on my spinal cord. I have had numerous gout attacks which I take colchine 1.6 mg twice daily and ms cotin 15mg twice daily for pain. I have a father who recently had a kidney transplant, doing well until they removed his original kidneys, and one side won't heal properly. His mother died of PKD at age 52. I have a sister and a brother who have been diagnosed with PKD and 3 who have not. I am the oldest of 9, with 16 neices and nephews. This disease is genetic and I worry alot not for me, but for all these I hold so very dear. I don't think that I can do the dialysis thing or transplant, only because I know too much. So thats life in a nut shell, any comments.
| Name: wayne | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: YES ? | What's your age/gender?: MALE/ 57 | Are you on Dialysis/what kind?: NO |
| Do you have a kidney transplant?: NO | Where do you live? List state, area or country: NEW JERSEY | Is it alright for others to e-mail you?: YES |
Comments:
| Name: SHELLY | My URL: Visit Me | Do you have PKD? Approximately how much kidney function do you have?: YES 14% |
| What's your age/gender?: 34/F | Are you on Dialysis/what kind?: YES NOT SURE | Do you have a kidney transplant?: NO-WAITING |
| Where do you live? List state, area or country: OHIO | Is it alright for others to e-mail you?: NOT YET |
Comments:
STILL WAITING FOR MORE INFO ON MY CONDITION.I'VE ALSO HAD HEART SURGERY AT AGE 32 AFTER ATTACK AT AGE 28.LOOKING INTO IF CAUSED BY DIABETES OR IF GENETIC.
| Name: randy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes 50% | What's your age/gender?: 30 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: standish me. | Is it alright for others to e-mail you?: yes |
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| Name: Dave Moorhouse | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Dont know | What's your age/gender?: 41 Male | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: London England | Is it alright for others to e-mail you?: Yes |
Comments:
No effects on me other than high blood pressure at the moment.
| Name: Fernand Kneip | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 30% | What's your age/gender?: 48 male | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Luxembourg (Europe ) | Is it alright for others to e-mail you?: Yes |
Comments:
Since 1977, I know that I've PKD. Since 1997 my situation gets worse very rapidly. In December 1996 my creatinine level was at 1.8 mg/dl. Today, it's at 3.17 mg/dl. I'm interested to talk to somebody about this dramatic & fast change. Did anybody notice a
similar tendancy in only 3 years ?
| Name: ian du plooy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: 100% | What's your age/gender?: 34 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: heilbron south africa | Is it alright for others to e-mail you?: yes |
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| Name: Nancy | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes ? | What's your age/gender?: 47 white female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: Texas-Ft. Worth | Is it alright for others to e-mail you?: Yes-but please limit to a few |
Comments:
I'm actually looking for new ideas & information that others may possibly have found. I'm still in reasonably good health so far(except aches & pains & high blood pressure). Sometimes I get pretty scared about the whole thing but have a good attitude on
maybe I'll be the one that doesn't progress to dialysis or a transplant. My father died at 63 in 1977 and was on dialysis for 3 years. I just recently(in the last year) found out I had it, we thought the mother had to be the one to pass the gene. So any
new info, support or otherwise would be greatly appreciated. Thanks for you time & the effort you put in to help others. Sincerely, Nancy
| Name: Mickey | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes, don't know yet | What's your age/gender?: 43 female | Are you on Dialysis/what kind?: No |
| Do you have a kidney transplant?: No | Where do you live? List state, area or country: south central PA | Is it alright for others to e-mail you?: yes |
Comments:
I was recently diagnosed with PKD. I have had constant back pain for a year. My doctor could not figure out what was causing it until I was hospitalized for another reason. An ultrasound was ordered and that's when it was found. I have another ultrasound in three months so my kidney doctor can check the progression. This is a great site. No one I have talked to outside of my family has ever heard of this disease.
| Name: Tamie Spinetti-Kelly | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/ 50% | What's your age/gender?: 42 female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: hayward, california | Is it alright for others to e-mail you?: sure,email PLEASE |
Comments:
i found out in january of 97 that i have PKD. I hate this disease I'm now in alot of pain and taking alot of pain meds 3 x a day....least I'm happy that my 2 brothers dont have this disease,PLEASE email me anytime or IM me,put me on your aol buddy-list have a good one xxxooo :)
| Name: melanie mcgiurk | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: no i suspect | What's your age/gender?: i am female age 26 | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: dublin ireland | Is it alright for others to e-mail you?: yes |
Comments:
i think i have pkd. i don't know what to do. maybe i'm just over reacting.
| Name: Bonnie Brand | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes/unsure | What's your age/gender?: 50/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: east Perth,W.A. | Is it alright for others to e-mail you?: yes |
Comments:
I haven't meet or talked about P.K.D. to anyone but my family and doctor and I think it would be good for me to meet people with the same problem.
I was a member of The Kidney founation years ago but with all my travels etc. It's been awhile. I'm Canadian and am really enjoying this beautiful city and the rest of australia that I have visited.I am looking forward to getting involved with the kidney foundation and meeting people with the same disease.
| Name: Phillip Ivey | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes | What's your age/gender?: 41/m | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: oklahoma | Is it alright for others to e-mail you?: yes |
Comments:
I would like to talk to other people about the
problems they are coping with
| Name: judy comer | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes - don't know | What's your age/gender?: 48 - F | Are you on Dialysis/what kind?: no - kidneys functioning |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: southern Illinois USA | Is it alright for others to e-mail you?: YES! |
Comments:
I would like to correspond with other PKD patients in my age group. I am very interested in anyone who lives in the midwest.
| Name: Saleh Yaseen | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: Yes I reached end stage | What's your age/gender?: 46 male | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: I had, Sep. 99 | Where do you live? List state, area or country: Ohio | Is it alright for others to e-mail you?: yes |
Comments:
I was diagnosed in 81 and reached end stage renal failure in summmer 99. I had my transplant at about 10% kidney function. I am willing to answer any questions from paitients and other concerned relatives.
| Name: Dale H. Thompson | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes50%(+ -) | What's your age/gender?: 51/m | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Dexter, Maine | Is it alright for others to e-mail you?: yes |
Comments:
I discovered that I had PKD in 1989. So far I have lost my mom and a brother from this disease. Those of us (siblinss) that have been tested all have PKD. My mother was on dialysis for about 15 years and to the best of my knowledge I have one aunt on my mother's side of the family who never had PKD, or at least to this point it has not shown up.
Thank you for this page. I found a lot of useful information.
| Name: Lorie | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: yes, just found out | What's your age/gender?: 35/female | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: Ga | Is it alright for others to e-mail you?: yes |
Comments:
Was just informed 2 days ago that I have PKD and I am also recovering from by-pass heart surgery.
Looking forward to meeting others with PKD.
| Name: daniel corino | My URL: Visit Me | My Email: Email Me |
| Do you have PKD? Approximately how much kidney function do you have?: still undergoing tests | What's your age/gender?: 27/m | Are you on Dialysis/what kind?: no |
| Do you have a kidney transplant?: no | Where do you live? List state, area or country: nutley,new jersey | Is it alright for others to e-mail you?: yes |
Comments:
im scared!