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CW
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Yeah .............That's me!
« on: April 21, 2013, 11:34:30 PM »
I would like to meet patients near me ... Nothing formal, no expectations, just meet, chat maybe coffee whatever. I dont see or talk to enough patients, people who understand the challenges of being a patient. Some years ago i set up a map for patients here but the provider for the free map site shut down so no easy way to locate patients. I think for anyone interested in meeting other patients (outside of a big meet like las vegas meets etc.) could post locations in a regional section of the site. Just batting around some ideas looking for input if something gels then i will present any workable ideas to our wonderful beautiful and talented admins/mods (im told flattery works  ;D ). We will see how it pans out.

Thx
« Last Edit: April 21, 2013, 11:35:48 PM by CW » Logged
*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
Jean
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« Reply #1 on: April 22, 2013, 12:55:30 AM »
Great Idea and I hope it works. I mean, I hope you get lots of people. I would love to go to a local support group and just get to know each other and chat. I am still in 4th stage, but know this cant last for ever. I would be happy to help with the paperwork if you need some one. I am located in Riverside, Ca.
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chiromac
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Dr. Larry (Chiropractor)
« Reply #2 on: April 22, 2013, 05:02:30 AM »
Sounds like a great idea, I would enjoy meeting some people from the St. Louis area also.  :waving;
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Dr. Larry (Chiropractor)

My life has been drastically changed and I want to get back to the living my life.

I ♥ have ♥ the ♥ most ♥ beautiful ♥ DAUGHTER ♥ in the ♥ world☆•*¨*•.¸¸❤❤¸.•*¨

Back Surgery
Diabetes
Had reaction to Byetta and my Kidneys shut down
Diabetic retinopathy (Countless shots to both eyes & Laser Treatments)
Cataract Surgery on both eyes
Diagnosed with ESRD
Multiple Heart Bipass Surgery
AV Fistula
Dialysis - In center 3 days a week 4:15 at a time
Neuropathy
On Transplant List and Hoping
CW
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Yeah .............That's me!
« Reply #3 on: April 23, 2013, 02:54:45 PM »
Bumping as site was not able to access site for about a day and a half, unsure if it was just me or if few others saw this.
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
jeannea
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« Reply #4 on: April 23, 2013, 03:00:00 PM »
I would be interested in meeting people if it would be ok to include someone who is recently transplanted. I'm in the Philadelphia suburbs.
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Riki
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« Reply #5 on: April 23, 2013, 04:56:34 PM »
I always thought it would be kind of neat to have mini meetups in different places, cuz we can't all get to Vegas..
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
geoffcamp
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« Reply #6 on: April 23, 2013, 05:44:34 PM »
So is this Vegas meet a regularly scheduled event?  Anyone else here live in south Florida?
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
MaryJoe
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« Reply #7 on: April 24, 2013, 05:30:44 AM »
I like the idea of regional mini-meets.  I think it's worth persuing.
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dublin
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« Reply #8 on: April 24, 2013, 11:06:18 AM »
Quote from: Jean on April 22, 2013, 12:55:30 AM
Great Idea and I hope it works. I mean, I hope you get lots of people. I would love to go to a local support group and just get to know each other and chat. I am still in 4th stage, but know this cant last for ever. I would be happy to help with the paperwork if you need some one. I am located in Riverside, Ca.
hi would you mind telling me what is 4th stage and nx stage i am on dialysis for 16 months now seems like forever but i never heard of the 2 above words i cant really use a computer and i type with 2 fingers i am just wundering if you dont want to answer thats fine realy anything you ask the doc she just says get of dialysis as soon as you can because its not good for you thats all she saya i kid you not. I hope i am not insulting you by asking questions thanks very much. :thumbup;
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KatieV
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« Reply #9 on: April 24, 2013, 12:28:26 PM »
Quote from: dublin on April 24, 2013, 11:06:18 AM
hi would you mind telling me what is 4th stage and nx stage i am on dialysis for 16 months now seems like forever but i never heard of the 2 above words i cant really use a computer and i type with 2 fingers i am just wundering if you dont want to answer thats fine realy anything you ask the doc she just says get of dialysis as soon as you can because its not good for you thats all she saya i kid you not. I hope i am not insulting you by asking questions thanks very much. :thumbup;

The stages refer to how far along your kidney disease has progressed.  You would need dialysis or a transplant at stage five.

Stage 1 with normal or high GFR (GFR > 90 ml/min)
Stage 2 Mild CKD (GFR = 60-89 ml/min)
Stage 3 Moderate CKD (GFR = 30-59 ml/min)
Stage 4 Severe CKD (GFR = 15-29 ml/min)
Stage 5 End Stage CKD (GFR <15 ml/min)

NxStage is hemodialysis at home.  It gives you more freedom than in-center as you can choose when you dialyze.  You can check it out and see pictures of the machine at http://www.nxstage.com/.  Many patients do ~3 hours 5 times a week.  I am doing nocturnal (while I sleep) NxStage and do 6 days a week for 8 hours.  It is more like a natural kidney (48 hours a week versus 15).  I had access issues recently and, while working with my nurse, had in-center treatments.  I definitely felt the difference!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
CW
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Yeah .............That's me!
« Reply #10 on: April 24, 2013, 01:13:46 PM »
Well to address some questions

All are welcome patients, care providers, spouses, transplant recipients, pre dialysis and so on and so forth. The meets are whatever the participants want them to be, regular, one time, big or small that is the point.... make it whatever you want. I just want a central place on the site for people to go so each region can organize their own mini-meets
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
Chris
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« Reply #11 on: April 24, 2013, 01:35:15 PM »
We had a mini meet in Chicago area in 2011 and it was great. We had people in different stages and treatment options. If you can go to one, it is great and so was Vegas. The way the mini meet was set up at the time was by making a post to see if anyone was interested and then planning started on the thread once a central location was agreed upon.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Jean
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« Reply #12 on: April 30, 2013, 01:24:47 AM »
Really I dont even know where to start!!! I am in Riverside, which is close to Corona, San Bernardino, Loma Linda, Yorba Linda, Rialto and Redlands. All within a 45 minute trip. If I knew who wanted to attend I could keep track of who it is and find a place we could meet. My regular e-mail is livingstongenie@aol.com. Put I love IHD in the subject line so I can identidy you. And we will see where this goes.
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cariad
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« Reply #13 on: April 30, 2013, 01:45:21 AM »
I've met quite a few IHDers, one even came to visit me in hospital when I was barely coherent (hooked up to a chemo IV). :waving; I'd welcome the chance to meet more. Wasn't there going to be an English meet? I'm no more than a couple hours by train from almost anywhere in the country. I live across the road from the train station, too. :)
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
geoffcamp
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« Reply #14 on: April 30, 2013, 03:34:55 AM »
I would LOVE to travel to the UK!!  But someone has to marry me to get dual citizenship so I get dialysis!!!!  LOL
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
Rerun
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« Reply #15 on: April 30, 2013, 08:40:19 AM »
Okay, some rules.  Do not post your address. (Dah)  If you meed PM (Personal Message) each other or post a "Public Place" to meet.  No telephone numbers on this site.  Just PM that info too.  Meet in a Public Place before just inviting some person to your house.   Hope people have fun with this.  We do not want to be in the news like Craigslist!   >:D

I'm in Spokane, WA  PM me if you want to meet.  I've met Jean in Spokane once.  It was fun.

Rerun, Moderator   :police:
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kit78
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« Reply #16 on: April 30, 2013, 03:24:53 PM »
I'm in Kane County Illinois...right at the corner where Lake, McHenry and Cook counties all come together.  Would love to meet others on Dialysis or transplant ... anyone associated with Kidneys or Liver. All are welcome.  Just let me know.
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
Chris
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« Reply #17 on: April 30, 2013, 09:22:01 PM »
Quote from: kit78 on April 30, 2013, 03:24:53 PM
I'm in Kane County Illinois...right at the corner where Lake, McHenry and Cook counties all come together.  Would love to meet others on Dialysis or transplant ... anyone associated with Kidneys or Liver. All are welcome.  Just let me know.

Now I have to look at a map. I didn't or remember  that Kane County connected with Cook County. I know it does with DuPage and I think Will County.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
MooseMom
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« Reply #18 on: April 30, 2013, 09:49:03 PM »
Yep, Kane sits right next to Cook.  My husband is a city attorney in Elgin, and it's a pain in the hat because Elgin straddles Kane and Cook.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
CW
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Yeah .............That's me!
« Reply #19 on: May 01, 2013, 12:05:14 AM »
Alright NorCal ( northern california) folks
Anyone in the bay area?
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
cariad
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What's past is prologue
« Reply #20 on: May 01, 2013, 01:39:32 AM »
Quote from: CW on May 01, 2013, 12:05:14 AM
Alright NorCal ( northern california) folks
Anyone in the bay area?
I wish!!! You're about 14 years too late to run into me in that divine part of the world.  :(
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
cariad
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What's past is prologue
« Reply #21 on: May 01, 2013, 01:50:04 AM »
Quote from: geoffcamp on April 30, 2013, 03:34:55 AM
I would LOVE to travel to the UK!!  But someone has to marry me to get dual citizenship so I get dialysis!!!!  LOL
Well, you'll better your odds of finding that British lass if you come here on holiday first. Forget American healthcare pricing, I imagine dialysis costs are actually somewhat sane here, but a dialysing traveler like Bill Peckham would have a better idea. I think the airfare is more prohibitively expensive than dialysis.

I wish it were so easy that you marry a citizen, they give you dual citizenship. Maybe it worked that way before any of us were born. Then again, up until the early part of the 20th century a woman who married a foreigner would automatically lose her American citizenship, so I'll accept the modern laws.

Come on over, Geoff!!!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #22 on: May 01, 2013, 10:05:32 AM »
Quote from: Rerun on April 30, 2013, 08:40:19 AM
Okay, some rules.  Do not post your address. (Dah)  If you meed PM (Personal Message) each other or post a "Public Place" to meet.  No telephone numbers on this site.  Just PM that info too.  Meet in a Public Place before just inviting some person to your house.   Hope people have fun with this.  We do not want to be in the news like Craigslist!   >:D

Rerun, Moderator   :police:

Thx for the guidelines. I've had my number up since I joined, probably not a good idea. I'll be removing. G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
Wildrose
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« Reply #23 on: May 31, 2013, 11:06:26 PM »
I would be interested in meeting other local D patients as well. I'm in Seattle, WA. I've found that in center hemo is not friendly. For example when I was on PD there was home D support groups, but nothing for in center D patients. No idea why that is but its not fair.  :lol;
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
8/7/12 - 24 hr urine test shows improved kidney function. 3.47 creatnine - Dr reduced hemodialysis from 3x's to 2xs a week.
Jean
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« Reply #24 on: June 01, 2013, 12:43:36 AM »
We had a mini meet in Riverside, 2 years ago. We just had some grilled hot dogs and I made a potato salad, after cooking them for 4 hours of course. KitKatz brought the Dogs and the Buns, YL guy brought some hummus and an enormous piece of flatbread. very tasty. Paris sent a beautiful embroidered blanket and Kit Katz supplied us with "raffle" gifts. We had the best time and YL guy was such a help, he even let me feel his "thrill". A couple of my girlfriends in stage 3 dropped by and learned a lot. One other couple came with the drinks, danged if I can remember their names. It was small, but we all had a good time.
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