Meeting other patients ...

[CW]

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  ). We will see how it pans out.

Thx

[Jean]

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.

[chiromac]

Sounds like a great idea, I would enjoy meeting some people from the St. Louis area also. 

[CW]

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.

[jeannea]

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.

[Riki]

I always thought it would be kind of neat to have mini meetups in different places, cuz we can't all get to Vegas..

[geoffcamp]

So is this Vegas meet a regularly scheduled event?  Anyone else here live in south Florida?

[MaryJoe]

I like the idea of regional mini-meets.  I think it's worth persuing.

[dublin]

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.

[KatieV]

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.

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!

[CW]

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

[Chris]

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.

[Jean]

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.

[cariad]

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). 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.

[geoffcamp]

I would LOVE to travel to the UK!!  But someone has to marry me to get dual citizenship so I get dialysis!!!!  LOL

[Rerun]

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!   

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

Rerun, Moderator   

[kit78]

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.

[Chris]

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.

[MooseMom]

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.

[CW]

Alright NorCal ( northern california) folks
Anyone in the bay area?

[cariad]

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. 

[cariad]

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!!!

[geoffcamp]

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!   

Rerun, Moderator   

Thx for the guidelines. I've had my number up since I joined, probably not a good idea. I'll be removing. G.

[Wildrose]

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. 

[Jean]

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.