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Author Topic: 2013 IHD "Let's get together in The UK!"  (Read 91857 times)
okarol
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« on: June 07, 2013, 01:50:01 AM »

Discussion of meet up proposed for UK.  :2thumbsup; :2thumbsup; :2thumbsup;
« Last Edit: June 07, 2013, 01:51:33 AM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
lainiepop
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« Reply #1 on: June 07, 2013, 05:33:32 AM »

Im in the UK :)
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Sugarlump
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« Reply #2 on: June 07, 2013, 11:56:03 AM »

Hi lainiepop Would Cambridge be accessible for a weekend?
    I think London would be too expensive but Cambridge has some reasonable hotels and a great place to wander around.
    Also it would help if you indicated when you are available for a get together...

 :waving; Hello all you English people on here!
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
lou
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« Reply #3 on: June 08, 2013, 10:13:13 AM »

Would love to meet up!  :2thumbsup; (I'm in Devon)
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lainiepop
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« Reply #4 on: June 08, 2013, 01:00:20 PM »

Whereabouts in Devon r u lou? My parents live in Plymouth, that s where we had the tx op. I'm in Dorset now, Bournemouth by the sea :)
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
lou
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« Reply #5 on: June 09, 2013, 02:59:47 PM »

Hi lainiepop, im in Exeter so we are not massively far apart!  :)

I had my transplant 3 years ago in Bristol when I was 29, so we are not far apart in age either are we? Hope all is going well with you, would love it if we could all sort some type of meet up xx
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lainiepop
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« Reply #6 on: June 10, 2013, 01:15:25 AM »

Hey Lou i did my degree at Exeter uni and still pop in there on Way to and from Plym  sometimes!

l was 31 in march  ;D

x
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
cariad
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« Reply #7 on: June 11, 2013, 02:23:18 AM »

 :bump;
Come on, we have more Brits than this on here! Don't be shy!

Since we already have a proposed venue (thank you, Sugarlump), what dates work for everyone? July, August? Any thoughts? Any particular day of the week that works best for most? Richard has to book his plane ticket, so I'm sure he'd appreciate us getting back to him with a date ASAP! :rofl;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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deniferfer
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« Reply #8 on: June 11, 2013, 08:46:58 PM »

I would love to go to the UK meet up but I be all the way over in California. Plus I have never been on a plane but why not take 10 hour flight for my 1st flight, go big or go home right?  :rofl;
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
Sugarlump
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« Reply #9 on: June 19, 2013, 12:01:12 PM »

Suggest we take a vote on her September 2013 or April 2014???
Which suits people best?
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
Poppylicious
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« Reply #10 on: June 27, 2013, 03:46:06 PM »

Just putting this out there ...

I'm not one for meeting people due to being shy and just generally feeling like people are judging me for whatever reason.  However, I've been thinking about this whole UK Meet idea and wondered how UKians would feel about the following proposal: Kidney Research UK do a seven or eight mile walk in London, usually on the second Sunday in July.  I did it with Mumsy in 2010 and have been itching to do it again but for various reasons I haven't.  Would anybody else be interested for next year?  I know it's a long time in advance but I thought it might be cool-ish to meet each other and raise money for a charity which is close to our hearts kidneys at the same time. Anybody who didn't want to do the actual walk could cheer us on from the sidelines and afterwards we could go for a meal (or just have a picnic!). We'd also have the option of some people meeting on the Saturday evening if they wanted (and with enough notice we'd have no trouble finding somewhere cheap to stay.) 

We could even advertise ihd.com on our t-shirts ...

Anyhoo, just an idea I've been mulling over on the bus to work for the last couple of mornings.  We're an apathetic bunch at the best of times so I won't expect much response!! And obviously I reserve the right to back out in horror and scarediness at having to meet real people.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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« Reply #11 on: June 28, 2013, 01:07:42 PM »

Just putting this out there ...

I'm not one for meeting people due to being shy and just generally feeling like people are judging me for whatever reason.  However, I've been thinking about this whole UK Meet idea and wondered how UKians would feel about the following proposal: Kidney Research UK do a seven or eight mile walk in London, usually on the second Sunday in July.  I did it with Mumsy in 2010 and have been itching to do it again but for various reasons I haven't.  Would anybody else be interested for next year?  I know it's a long time in advance but I thought it might be cool-ish to meet each other and raise money for a charity which is close to our hearts kidneys at the same time. Anybody who didn't want to do the actual walk could cheer us on from the sidelines and afterwards we could go for a meal (or just have a picnic!). We'd also have the option of some people meeting on the Saturday evening if they wanted (and with enough notice we'd have no trouble finding somewhere cheap to stay.) 

We could even advertise ihd.com on our t-shirts ...

Anyhoo, just an idea I've been mulling over on the bus to work for the last couple of mornings.  We're an apathetic bunch at the best of times so I won't expect much response!! And obviously I reserve the right to back out in horror and scarediness at having to meet real people.

 ;D

I like the idea  but not sure I could walk 8 miles at the moment.
Gives me a target to aim for I guess but yesI like the idea a lot...  :waving;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
cassandra
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« Reply #12 on: June 30, 2013, 03:45:12 AM »

I'm up 'North' from Southport, count me in,

              :yahoo;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cariad
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« Reply #13 on: June 30, 2013, 01:12:46 PM »

Just putting this out there ...

I'm not one for meeting people due to being shy and just generally feeling like people are judging me for whatever reason.  However, I've been thinking about this whole UK Meet idea and wondered how UKians would feel about the following proposal: Kidney Research UK do a seven or eight mile walk in London, usually on the second Sunday in July.  I did it with Mumsy in 2010 and have been itching to do it again but for various reasons I haven't.  Would anybody else be interested for next year?  I know it's a long time in advance but I thought it might be cool-ish to meet each other and raise money for a charity which is close to our hearts kidneys at the same time. Anybody who didn't want to do the actual walk could cheer us on from the sidelines and afterwards we could go for a meal (or just have a picnic!). We'd also have the option of some people meeting on the Saturday evening if they wanted (and with enough notice we'd have no trouble finding somewhere cheap to stay.) 

We could even advertise ihd.com on our t-shirts ...

Anyhoo, just an idea I've been mulling over on the bus to work for the last couple of mornings.  We're an apathetic bunch at the best of times so I won't expect much response!! And obviously I reserve the right to back out in horror and scarediness at having to meet real people.

 ;D
I would be happy to do the walk, though I don't think I would raise much money, if any. Unless we do it as a team venture and ask for donations on IHD/FB/elsewhere? Most everyone I know is overwhelmed by the sheer number of fundraising events that they are invited to or asked to contribute to, so I'd hesitate to ask for more than a few quid. We should discuss further assuming there's enough interest.

I empathize with the social-phobia or anxiety or whatever it is, but I assume that if people are going to back out that they'll send a PM or something. I just don't want to get all the way to London to find that everyone else has bailed. I think an 8-mile walk would do me a world of good, and I could probably convince my family that it would have the same effect on them.  :)
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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
lou
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« Reply #14 on: July 01, 2013, 01:59:03 AM »

Poppy i think that's a lovely idea! As long as its a walk not a run im in! xxxxx  :cuddle;
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« Reply #15 on: July 01, 2013, 01:32:42 PM »

I would be happy to do the walk, though I don't think I would raise much money, if any. Unless we do it as a team venture and ask for donations on IHD/FB/elsewhere? Most everyone I know is overwhelmed by the sheer number of fundraising events that they are invited to or asked to contribute to, so I'd hesitate to ask for more than a few quid. We should discuss further assuming there's enough interest.

Oh, we could definitely do a group page for fundraising if we went ahead with it.  That way you don't even have to ask for donations if you don't want to and nobody else would be any the wiser.  It does get a little overwhelming with the amount of fundraising activities that go on these days.  I work with someone who has two charities she will contribute to and if you're not raising money for them she just doesn't donate.  I like her style, but I always feel (guilt-tripped into thinking) I have to donate to everything!

I empathize with the social-phobia or anxiety or whatever it is, but I assume that if people are going to back out that they'll send a PM or something. I just don't want to get all the way to London to find that everyone else has bailed. I think an 8-mile walk would do me a world of good, and I could probably convince my family that it would have the same effect on them.  :)

Oh gosh, once I'd actually committed I wouldn't back out!  I'm not that bad!   :o  :P

Poppy i think that's a lovely idea! As long as its a walk not a run im in! xxxxx  :cuddle;

 :2thumbsup;

I like the idea  but not sure I could walk 8 miles at the moment.
Gives me a target to aim for I guess but yesI like the idea a lot...  :waving;

Do you need a piggy-back?!  You can wait at the finishing line with CAKE!!

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Sugarlump
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« Reply #16 on: July 01, 2013, 04:32:35 PM »

@Poppy
If I am not able to walk that far by next year, perhaps someone could push me round in a wheelchair.  :rofl; :rofl; :rofl;
Funnily enough, the year before last I did a cake stall for World Kidney Day at my sisters workplace and raised £50 with a mountain of fancy
cupcakes and traybakes!
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
RichardMEL
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« Reply #17 on: July 05, 2013, 05:26:25 AM »

Poppy don't go all phobia on us!! I'm prepared to travel around the world to give you huggles... and they are YOUR trademark!! The least you could do is show up!!!  :rofl; :rofl; :rofl; :rofl;

Yep, I studied at Cambridge (down with Oxford ;) ) in 1988. I'd love to go back... bring it on!

I also agree that London is VERY costly for hotels from many years of experiences - good and bad !!!

(but some notice would be good!!)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #18 on: July 05, 2013, 05:33:58 AM »

Poppy don't go all phobia on us!! I'm prepared to travel around the world to give you huggles... and they are YOUR trademark!! The least you could do is show up!!!  :rofl; :rofl; :rofl; :rofl;

Yep, I studied at Cambridge (down with Oxford ;) ) in 1988. I'd love to go back... bring it on!

I also agree that London is VERY costly for hotels from many years of experiences - good and bad !!!

(but some notice would be good!!)
I'd go anywhere to get *huggles* from you, Richard (within reason, of course). 

 ;D

Which college did you study at? (Or are you an "I studiedin rather than at Cambridge"?!  :P) Blokey's family has connections with Cambridge University (not in the academic sense though; they've been there purely to serve!)

Transport costs into London aren't too bad if you book your tickets in advance so there's always that option if people want to do the walk but don't want to stay in the capital.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
RichardMEL
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« Reply #19 on: July 05, 2013, 06:22:25 AM »

I attended Wolfson (http://en.wikipedia.org/wiki/Wolfson_College,_Cambridge)

When I say I studied there it is both true, and rubbish lol.

We did a 3 week course there as part of an end of high school trip my school put on and luckily my parents had the $$$$ to send me as part of a group of about 25 or so of us rowdy 17-18 year olds (yes, there are stories, and no not here :) ). Anyway we studied things like Superpowe relations (this was 1988 remember), International Politics, Economics and the like. You know.. go spend time being tutored by varios University Professors in an old English Mansion, complete with morning and afternoon tea, of course! This was in December holidays for the students and University (and yes, we all slept out for the night to attend the Carols @ Cambridge - bloody hell it was cold!) and stuff like that. Amazing experience.

The big let down was that - leaving the 30+ C Australian summer for a real English winter, and the hope of a White Christmas it was like the hottest day on record or something at 15C and all the poms were out in their singlets and shorts (ugh!! LOL) and we did not have our special White Christmas.. but spent much time in old English pubs, riding the streets of Cambridge on our bikes at 2am after pub closing(as you do !), trying to not fall in the river, and doing various journeys around the countryside - places like Ely, Bath and a few other places I forget now, but all very interesting.. plus time in London(of course) and Austria/Hungry...

so I can claim to have studied at Cambridge.. I even have the poxy college scarf and a tie somewhere..... lol

I remember the cool bookshops and little places in Camb... gorgeous town.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Sugarlump
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« Reply #20 on: July 05, 2013, 12:03:38 PM »

Cambridge would be easiest to arrange accommodation and for eating out at reasonable cost. Transport easy as well.
We could have an IHD dinner (or lunch) at Bills then we could get Rich to take us punting!!!!  :rofl;  :rofl;  :rofl;
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
RichardMEL
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« Reply #21 on: July 08, 2013, 12:17:12 AM »

Me take you punting?! You have to watch your fluids.. and trust me with me at the helm (keel? whatever) you'd be in the drink for sure!! :p

Logged



3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
cassandra
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« Reply #22 on: July 27, 2013, 02:25:53 AM »

Would the last week of September in Cambridge be a good time/place?
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Sugarlump
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10 years on and off dialysis

« Reply #23 on: August 02, 2013, 01:04:02 AM »

Good for me
Premier Inn near station has reasonable priced rooms.
Bus transport in and out of town easy to use.
Dinner at Bills? Punting with Richie?
Depends on numbers who want to stay over maybe able to get good deal at a boutique hotel
(Have various offers)
Logged

10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
RichardMEL
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Posts: 6154


« Reply #24 on: August 02, 2013, 04:44:12 AM »

Sorry folks.. would love to but it's too soon and since I have Vegas booked for a few weeks later, and another trip in November mostly planned I just can't fit the UK in.. but if you hold another one next year with more notice, like in April or Sep or whatever I will really make it a priority to organise to come.
Logged



3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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