suggestion... how about introducing ourselves??

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Postby cris » Fri Apr 23, 2004 11:47 pm

hi all
i am cris from ny and i have polycytic kidney disease along with other family members i also have fibromyalgia which complicates things and some other medical issues i am not on dyalisis yet hoping if i watch my diet i can postpone or avoid dyalisis, if thats truley possible. i am around 40% function(great for now) i have watched the board scince i became real sick with pylonemphritis last june, this new one will be a little ajustment, i have learned alot from the posts and feel not so alone. it also helps me understand what my other family members are going thru, i cannot check the board as often as before because of not feeling well and know i have missed alot of imformation. i cannot work at this time and that is a hard transition for me to accept. i also do not spell well. and a special message to cheyrl thank you for all your support i believe i will get that referal to a nemphrologist next month as my insurance changed and i had no choice but to switch dr's and i am hoping for the best. as i am having problems with my blood pressure going from low to high its not stable right now. well enough said maybe to much for the introduction post best wishes to all
Posts: 4
Joined: Fri Apr 23, 2004 10:54 pm

Postby johnsor » Sat Apr 24, 2004 12:09 am

Russ... located in Northern Illinois:

Received a revelation in March of '96 that I had 5% kidney function during a Dr. visit (blood pressure related appointment) and immedietely went to CAPD. My native kidneys were never biopsied, so their demise was never determined. My younger sister without hesitation gave up a kidney in Sept. '96. Things went well until April of 2001 when my creatinine began to slowly move upward until the transplant failed in April of 2003. The nephrologists could not make a determination for the transplant failure. This time some hemo dialysis until May '03 when my youngest son (23) became my second donor. Two surgeries, three hospitalizations after the second transplant and things seem to now be moving along very well. Work in logistics for a confectionery corp.
Posts: 69
Joined: Fri Apr 23, 2004 4:03 pm
Location: Northern ILLINOIS

Postby Dionne » Sat Apr 24, 2004 2:35 am

Hi Everybody!

I'm Dionne. Right now I am 7 weeks and four days post transplant. I'm finally feeling REALLY WELL, after a rough 4-5 weeks. I have a 17 year history of SLE (lupus), and developed lupus nephritis/CRF soon after that. So, I've known for quite a while that I would eventually need a transplant. I started the transplant process in May, 2003 and began dialysis in December, 2003. I was fortunate enough to find a donor (living, non-related).

I'm 37, married and the mother of two daughters (ages 5 and 10). My husband, whom I met about the same time I was dignosed with SLE is my biggest cheerleader.

I currently work in public relations, but have taken a leave of absence from my job right now. Since the transplant, I've been contemplating making a career change and really evaluating things. I guess getting a new kidney will do that to you. Anyhow, even though I don't always get a chance to post, I read most of the posts. I've met some really great people here who have been extremely supportive.

It's nice to meet you all...again!! :wink:
Posts: 18
Joined: Sat Apr 24, 2004 1:55 am
Location: Pennsylvania, USA

Great Idea!

Postby Canadian Christine » Sat Apr 24, 2004 7:49 am

My name is Christine (that of course was a no-brainer :lol: ). I live just outside of Toronto ON. I am an insurance broker, specializing in commercial insurance. I have 2 sons, Tom (14) & Greg (11). My husband is Stewart. We used to have 2 siamese cats named Misty (blue point) & Tigger (seal point). In a twist to the weird, they both developed renal failure! We inherited my Grandpa's cat Audie in Sept of last year & we have a golden retreiver named Bear.

I have been living with kidney disease since I was an infant. Had corrective surgery when I was almost 7. Was pretty well free of problems through my teens & early 20's. Then I had children & have had chronic kidney issues since. My right kidney had to be removed in June 2002 & I have been having issues with my left kidney since!

Interestingly enough, both of my son's have/had kidney issues. Tom has a dual collecting system in his left kidney & he had bladder issues which have resolved themselves. Greg had level II/III renal reflux in both kidneys but it resolved when he was 7. We are very familiar with kidney disease in this household!

We enjoy camping, boating, hiking & travelling. Both boys love going to amusement parks, even though Greg won't go on the big rides. However, he can probably tell you all of the technical aspects of each ride. Even though I have a PICC line for my IV antibiotics, I still ride all the roller coasters myself! I especially like the ones that go upside down. The more times, the better. Guess that's because I refuse to let my kidney issues completely control my life.

I love this board, as you are all wonderful in providing support, understanding & information. I don't know what I'd do without it. I'm glad to know you all :D .

Canadian Christine :-)
Canadian Christine
Posts: 4
Joined: Sat Apr 24, 2004 4:57 am
Location: Toronto GTA, Canada

Postby Gil » Sat Apr 24, 2004 3:39 pm

Gil is my real name and I'm 63 (last time it was 62 :( ).
I live in Michigan (came to the US in 1986).

I'm married to Penny, the best in the WWW, 25 years and counting.
I wouldn't be here today without her love and support.
One son in college just finished 3rd year, may legally get drunk but doesn't.
2 married daughters from my previous life, 34 and 28. No grand kids yet.
And a 10 year old cat.

Diagnosed with PKD in 1962, started dialysis in 1984. 2 failed transplants in 1984 and 1986. :cry:
My third transplant in Aug-31-2001 works better than my doctors could imagine. :)
No more prednisone. 2x1 mg Rapamune and 3x500 mg Cellcept, that's it.

For living I develop software for controlling machine tools.
I have a dual degree in electronic and mechanical engineering.
I'm self employed and work from home, thanks to the Internet.

Hobbies: many, but mostly music - classical and oldies, Latin and early rock. I enjoy restoring old recordings.
And my work is my hobby too..... and it keeps me busy..... :idea:

Love, Gil
Last edited by Gil on Sat Apr 24, 2004 3:46 pm, edited 1 time in total.
Posts: 43
Joined: Fri Apr 23, 2004 11:17 am
Location: Michigan, USA

Postby Christy Zootman » Sat Apr 24, 2004 3:43 pm

Hi! I'm Christy and I have iga nephropathy. I had gone through my transplant evaluation last year when my kidney function dropped to 19 percent. It improved a bit, so everything is on hold. I do have a donor--my son-in-law. Several of my grown daughter were willing to donate a kidney but, our transplant hospital will not allow a woman of child bearing years to donate a kidney unless they are done having children. We have 7 children.(Two still at home) My husband is a pastor and we live in a very rural town. We have a grocery store in our town and it is so tiny that 1 can of coffee was on the shelf. (not just 1 kind) It is a big change for me--a girl raised in the suburbs of Chicago.
Christy Zootman
Posts: 2
Joined: Fri Apr 23, 2004 5:12 pm

Postby Vanessa » Sat Apr 24, 2004 7:06 pm

HI I am Vanessa,

I am 31 years old. I live near Norwich, Norfolk, England. Diagnosed with Reflux when I was 18 & was told I MAY need Dialysis 10/15 years into the future. I went onto CAPD when I was 23 in 1996. I was on Dialysis for over 4 years & got my transplant in Jan 2001.

I am married to a wonderful man who is my rock & due to my Donor families generosity, my husband & I have since become parents to twin boys Thomas (Tom) & Oliver (Oli) in May 2003. They are so amazing, we feel so blessed.

My transplant was damaged during my C-section But after a brief wobble it seems to be doing O.K ( touch wood).

Life for me is very busy, but it is also fantastic.

God bless you all & thanks for sharing your amazing stories.x
Posts: 3
Joined: Sat Apr 24, 2004 6:39 pm

introducing myself Hello ;) Elaine

Postby Elaine » Sat Apr 24, 2004 11:09 pm

Hi im Elaine mum to Rachael age 16 who has fsgs/nephrotic syndrome. I also have 13 yr old twin girls too and a very caring hubby too. I am a Staff Nurse with 25yrs nursing experience which comes in handy!! :o
I am a main carer for Rachael who is on APD overnite peritoneal dialysis for past 15 mnths. She was activated on transplant waiting list few weeks ago but has been suspended until possibly a bi-lateral nephrectomy in hope of getting bak on transplant waiting list in uk. :roll: Life is very busy in our home with many ups n downs of a rollercoaster ride, and long for the day when Rachael will hopefully have a successful transplant and regain some of her youth bak. :D one day.............

updated 23Feb 2006

Ended up on haemodialysis for 16 mntsh after severe bout of peritonitis damned leak in bags!!!! faulty bags! :shock: :roll: :o . Still rollercoaster has fistula formed Jan 2005 overcame many issues with neddles etc.

Well transplant call did come 'the gift of life' 23/Sept 2006 - which we are so greatful to the donor and their family.Stayed in hosp 14days op went well n recovery etc creat down from 970ish to 110ish :D yeyyyy

Rach is doing very well 5mnths post transpant today :D Good to see Rach regain some of her teen youth back. Rach is at 6th form studying A/s levels at mo.Made such adifference to us all as a family much less stress
& pressure etc.

Heres to the future......

Elaine Rach & family xxxxx :D ;)

Transferred to adults at Southmead Bristol just before xmas, and settling in all well at mo touch wood ;)

best wishes Elaine :wink:
Last edited by Elaine on Thu Feb 23, 2006 2:41 pm, edited 1 time in total.
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west


Postby preciouslove0902 » Sat Apr 24, 2004 11:25 pm

Hello everyone :lol:!
My name is Miriam and I live in Michigan. I was diagnosed with FSGS when I was 19 years old. I started dialysis when I was 24 years old and now I am 19 months post transplant. I have really learned a lot from this web site and I wish to continue meeting people and learning new things and hearing success stories.

God Bless,
Miriam :D
Posts: 8
Joined: Fri Apr 23, 2004 7:30 pm

Postby Nula » Sun Apr 25, 2004 2:02 pm

Hi my name is Nula and Im 21. I have been Diagnosed with chronic Pyelonephritis. Not sure whats going to happen yet as the doctors seem to have forgtton me :roll: .

I am a Civil Servant but have been off work for the past year due to pain in my right kidney.
I have a very loving partner who has been very helpful over the past year and who is also my rock. Couldnt have got throught the last year without her.
I am Currently doing an Open University course in Psychology. Which is very hard :? .
I spend alot of time looking after my pets. I am a real animal lover and I have 8 hamsters, a cockatiel and a jack russell and hopefully soon a guinnie pig.

I first came onto this board a year ago and I was very confused but many members made me feel a lot better.

Best wishes to you all
Love Nula
Posts: 18
Joined: Sun Apr 25, 2004 1:12 pm
Location: Birmingham UK

Hello to everyone

Postby kim » Sun Apr 25, 2004 2:31 pm

My name is Kim. I am In Florida..US. I am 32 yrs old, married with two children. I have membranoporliferative glomerulonephritis. Was diagnosed 7 yrs ago. Not sure where it came from, but I think I had it 10 years now, since pregnant with my daughter, as I had lots of protein back then that showed up after a car accident. I am not on dialysis yet, currently on Prednisone to keep my kidneys in check.. I work full time (sometimes at chatting :wink: ) I have made some WONDERFUL friends from the board and chat. I love to read, do photography and spend as much time in the water swimming as possible. I am pretty new to the kidney issues even after having this disease so long cuz it's been (up til now) very uneventful.....but I am an open book and will reply to anything I feel I can be helpful with.
Posts: 65
Joined: Fri Apr 23, 2004 4:42 pm

Postby Andy » Sun Apr 25, 2004 7:55 pm

WOW you guys all seem so interesting!!!
Well my name is Andrea- most know me as Andy though. I have had kidney failure, since Nov 02- through Meningiccocal Septicemia. Doc's thought that Function was going to get better but had a over 19 operations and things never improved. Was on haemo for about 3/4 months and then I went onto APD for about 9 months and then Xmas day 2003 I recieved a Transplant. Through the septicemia I also suffered a Bi Lateral AMputation to my legs.
I am 18 years old, and studying for As Levels in Biology, Psychology and IT. I hope to go to university and become a Paediatric Nurse.
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand


Postby Pam » Sun Apr 25, 2004 10:37 pm

Hi all,
My name is Pam and I live in Illinois in the US. I was diagnosed with Medullary Cystic Disease in 1972 at the age of 12. My younger sister also has this and had her second transplant 8 years ago. I was on hemo for awhile and had a transplant from my oldest sister in 1973-one of the first at our center. The kidney rejected really badly and I was in and out of the hospital for about a year...on April 21, 1977 I had a second transplant from someone who died in a motorcycle accident-this kidney has been "purring" along for 27 years now. :D I am a member of The Quarter Century Club-an organization formed for persons who have had their kidney transplants for 25 years or longer.
I have had a few of the "extras" that sometimes go along with transplantation...cataracts removed, both knees replaced, but all in all I am glad to be here! :wink: I like to read, do artwork, make jewelry and have fun with my nieces and the little 20 month old girl I help care for. I LOVE the Chicago Cubs and have been a Cub fan for about 22 years. Most of all, I have to thank God for my life and the chance He has given me to live it-hopefully I can do something for someone else who might need a helping hand.
God Bless all of you!
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Posts: 866
Joined: Sat Apr 24, 2004 8:13 pm
Location: Springfield, Illinois, USA

Intro's !

Postby Nikki » Mon Apr 26, 2004 11:41 am

Hi everyone! I'm Nikki, I'm 27 and from the midlands uk. I got renal failure out of the blue aged 20 after just completing 3yrs at stage school, dancing all day everyday! A bit of a shock to say the least and still no explanation. I spent a few weks on hemo and then chose CAPD (not a good look on a stomach with a 6 pack!) and spent about a yr and a half on that while the antibody in my blood was cleared. my parents were both tested and my dad gave me a kidney 6 years ago. i won't say its been easy but I pretty much feel back to normal now, I run my own dance academy and dance in shows with healthy "normal" people!!
Its so good for us to have a board like this, there's nothing better than talking things through with people who've been there!
I'm particullaly interested in having children so if anyone has had any experiences or has any advice on pregnancy with a transplant, I'd welcome it!
Take care everyone :D
Posts: 90
Joined: Sun Apr 25, 2004 4:14 pm
Location: Midlands, uk


Postby Thumper » Mon Apr 26, 2004 11:42 am


Hi I am Thumper from Chicago Illinois. I am a 42yr old female and was diagnosed with FSGS in 1993. My createnine is currently 6.0 and my BUN is 75, cr. clearance is 11. I should have beeen on dialysis by now but, I was trying to hold out because my husband was going to be a donor until he was rencetly ruled out by his Neph for having a slightly high BP of around 134/78. I nor he really thought that was a dangerously high reading. He is a big guy. He was a football player in college. My cousin (female) was also a match and now she is undergoing all of her tests so, I am patiently waiting and praying that hers will go well. My health situation is also being followed by the Discovery Health Channel so all you guys will get to see me on t.v. on the dicovery channel about the entire ordeal. It will be about the Wilson family. Stay tuned and nice meeting all of you guys and dolls... :lol: [/b]
"Be true to thyself"
Posts: 5
Joined: Sat Apr 24, 2004 11:37 am
Location: Chi-Town


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