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Author Topic: Isn't it irksome ...  (Read 41573 times)
Poppylicious
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« Reply #25 on: February 28, 2011, 09:32:21 AM »

Thanks Looney!

Kay - I was nuked last Tuesday and had to stay still for a whopping twenty minutes.  It's not so bad but they make you drink lots and lots of water in preparation and so my bladder was fit to burst by the time it was over.  And the toilet was waaaaayyyy down the corridor! 

Two stone is definitely do-able!  I think I need to lose about another stone (or just over).  Do you use anything to help you?  I'm a WeightWatchers gal myself, although I have lost a lot and it is getting harder.

Feel free to ask me anything ... I'm assuming that you'll go through the exact same process down in Sussex as I'm being subjected to in East Anglia; it will be interesting to know if there are variations in different parts of the country.

Good luck!

 ;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 #26 on: February 28, 2011, 09:53:57 AM »

Hey Poppy another flatland native I hail from East Anglia too.
I got told last year by the Transplant Surgeon I needed to lose a stone and stay fitter as they were tightening up the transplant list requirements.
I and a friend went to Rosemary Conley classes, diet plus weekly aerobics class. Didn't think I would but quite enjoyed it, bit of a giggle and I lost nearly 2 stone quite readily.
As you will see from my post I had second transplant in Dec10 so having a break til fully recovered and kidney working fully too.
Good luck.
 :boxing;
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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 :)
Sugarlump
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« Reply #27 on: February 28, 2011, 10:06:50 AM »

Also Poppy they offered me Orlistat.
Avoid at all costs has terrible side effects.
Wonder if your transplant surgeon same as mine!!!!
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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 :)
chook
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« Reply #28 on: February 28, 2011, 09:33:49 PM »

Go Poppy. :clap; :clap; :clap; All the best with the weight loss and hopefully, the donation of a kidney.
My hubby tested to be a donor for me and was told he was predisposed to kidney stones and that ruled him out - he has NEVER had one kidney stone! He weighs 110kg (around 17 stone) and his neph said his weight wouldn't have been an issue. We're in Australia. However, the transplant team I see every year said the weight would have been an issue as the surgery would have been difficult for him. I still wish he had got the green light!
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
Poppylicious
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« Reply #29 on: March 02, 2011, 09:20:33 AM »

Also Poppy they offered me Orlistat.
Avoid at all costs has terrible side effects.
Wonder if your transplant surgeon same as mine!!!!
Ha.  We have oodles of Orlistat in the cupboard from when Blokey was using it.  When I was first losing weight I used Alli.  I have to admit that during a recent episode of frustrating non-weight loss I used some of the Orlistat (I'm not sure it's allowed what with it being a prescription only drug; it's double the dose of Alli) and it made no difference at all.  So I didn't use it again the next week.  I don't think I consume enough actual fat for it to work.  *shrug*

If I say I'm being seen at A in C (with the neph Dr. P) does that make sense to you?  I'm being intentionally secretive, obviously.  I like to keep some things on the quiet when on a public forum!

 ;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 #30 on: March 03, 2011, 03:32:56 AM »

 ;) I'll send you a pm
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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 #31 on: July 14, 2011, 12:58:42 PM »

I'm tiptoeing back into this thread to announce that Blokey and my left kidney will become very intimate in the middle of October. 

I'm now tiptoeing back out of this thread because I don't want a fuss.

 ;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.
Pam
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« Reply #32 on: July 14, 2011, 01:51:21 PM »

Congratulations!!!!! That news deserves a big fuss!
Pam
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jbeany
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« Reply #33 on: July 14, 2011, 02:25:35 PM »

Okay, fine, Poppy.  None of these, then... :bandance; :bandance; :bandance; :bandance;  Or these... :yahoo; :yahoo; :yahoo; :yahoo;  Not a single one of these.... :cheer: :cheer: :cheer: :cheer: :cheer: :cheer: :cheer:  Not so much as a cheerful little drinkie in your honor, like these.... :beer1; :beer1; :beer1; :beer1;.

We keep it low key and not fuss then!

 ;D
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MooseMom
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« Reply #34 on: July 14, 2011, 02:32:45 PM »

oh, that is so ab fab!  You know, the wonderful thing about this is that you BOTH will have vastly improved lives!  Not only will he be able to live without dialysis, but YOU will get to live without dialysis, too!  You can both just get on with having a normal life together, so you BOTH have won the lottery!  Well done you!! :cheer: :cheer:
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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."
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« Reply #35 on: July 14, 2011, 06:41:41 PM »

... when the living donor coordinator doesn't reply to your emails?  Four to six weeks they said, when they took copious amounts of my blood ... it's been seven.  Surely the tissue has been typed by now? I want to know if I'm a friggin' match! I wouldn't mind but it's either knowing I'm compatible with Blokey so that we can get on with it, or knowing I'm not so that we can start trying for a baby.  Either way, our future is in their hands.

 >:( < angry-ish face.

Of course, she might just be on holiday this week, but even so ... tsk.

(Just needed to rant in a quiet space.)

 ;D

Poppy,

Communication is very important not only during workup, but after a transplant as well.  If you are not receiving adequate communication now, its likely not to get better unless you do something about it now... Why not give the coordinator a call?  Your coordinator more than likely gets hundreds of emails dialy. If you have a problem after your transplant, you are not going to want to let them know by email, you are going to want prompt response....Not to say you will have an association with the coordinator after. This is your right to know the results....
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Sax-O-Trix
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« Reply #36 on: July 14, 2011, 09:10:30 PM »

 :clap;:clap; Congrats to you and your DH! :yahoo; :yahoo;
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Preemptive transplant recipient, living donor (brother)- March 2011
texasstyle
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« Reply #37 on: July 14, 2011, 09:37:54 PM »

That is great news that you might be a donor! Stress can keep the weight on. In my opinon, if you want to lose the little bit of weight you need to you have to really watch HOW MUCH your eating more so than excersing. That's how it works for me.
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caregiver to husband using in-center dialysis 4 years
Jean
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« Reply #38 on: July 16, 2011, 08:18:51 PM »

Oh boy Poppy, such wonderful and exciting news. I am happy for both of you. ( I am not fussing )
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One day at a time, thats all I can do.
chook
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« Reply #39 on: July 18, 2011, 07:08:46 PM »

Just one little  :cheer:
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
Poppylicious
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« Reply #40 on: August 26, 2011, 07:32:51 AM »

The Living Donor Lady rang me at lunchtime and offered us the option of having the transplant done a month earlier. This is very much open to last minute cancellation; they'd be doing two live donor transplants on one day and an emergency cadaveric transplant would (obviously) take precedence over us (as the second couple) if the operating theatre was needed.

Um, no!  I'm not psychologically prepared!  And I'd be even less prepared for it being cancelled.  No, we'll keep the definitely 100% going to happen October slot please.

Silly?  Maybe. 

 ;D

(53 days - I counted.)
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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.
edersham
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« Reply #41 on: August 26, 2011, 10:41:48 AM »

Its certainly you and your donors decision to make based on what makes you most comfortable. I faced a similar decision. The difference was I was doing poorly on dialysis and the surgery was scheduled to be the first of the day.  We chose the earlier date because I wanted the hell off

 of dialysis as soon as possible. The earlier date cost me several  thousand dollars of lost wages because of the periodic nature of my job but all went well medically. Your situation may be very different however so good luck to you and your decision.

Ed
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boswife
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us and fam easter 2013

« Reply #42 on: August 26, 2011, 01:57:37 PM »

ohhh my goodness gracious.... just chatching this and sooo excited!  (and jbeany your halarious)  And so i dont have to celebrate too loudly, i'll just jump in, or sneak in  on jbeanys post...  Im so happy for you and pretty sure i'd be on the sticking to the 'original' plan as well.... unless! they were to call and say RIGHT NOW!! then that would save the pre-stress alltogether ... 
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
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« Reply #43 on: August 26, 2011, 03:04:10 PM »

Holy Hannah...no fuss intended...how did I miss this transplant news bulletin?  I'll tell you how...too much tiptoeing in.  That's fantastic Poppy and we'll be right there with you all the way.    :flower;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
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Poppylicious
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« Reply #44 on: September 19, 2011, 02:33:01 PM »

I've tiptoe'd in again (I know, I shouldn't tiptoe, but I honestly don't want a fuss) to declare that I'm feeling ever-so slightly fragile this evening.  I wouldn't normally advertise but I've written a blog post about it (link below in my sig; the dialysis one) and I don't want to keep festering over it. 

I suppose I just want someone (yes, you ... the one person who's reading this!) to give me some much needed *huggles* and tell me that it's normal to feel this way, everything will be okay, and in thirty days it will all be just a memory (albeit with added pain) ...
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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 #45 on: September 19, 2011, 08:13:25 PM »

Awww girl, I would be frightened too. I was a wreck before Jenna's transplant, I was in absolute agony secretly worrying something would happen to her or her donor. I cannot imagine what it would be like going into surgery MYSELF and someone I loved was too.
Will you ever be totally at ease? Probably not til the anesthesia takes effect.
You've had months to think about this and I'll bet it's stressful.
BIG HUGS for you. :grouphug; :grouphug; :grouphug;
 In my opinion there is no greater calling that a living donor.  :bow; :bow; :bow; I admire you and I hope the next 4 weeks go well and you can get ready and feel at peace.
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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
jbeany
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« Reply #46 on: September 19, 2011, 11:13:41 PM »

 :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;

Courage doesn't always roar.  Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.  ~Mary Anne Radmacher
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Poppylicious
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« Reply #47 on: September 21, 2011, 07:32:39 AM »

Thank you, lovely ladies.  I feel a tad better/peaceful even though we received our letters today confirming times and wards for the actual op, plus pre-op arrangements for the week before!

I imagine I'll just get used to feeling all over the place over the next few weeks.  I'll survive!

 ;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 #48 on: September 21, 2011, 05:39:17 PM »

You will survive but in the meantime here are many big reassuring hugs  :grouphug; :grouphug; :grouphug; :cuddle; :cuddle; :cuddle;
and some of these are in order probably, too.  :bow; :bow;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #49 on: September 21, 2011, 06:18:16 PM »

Thank you, lovely ladies.  I feel a tad better/peaceful even though we received our letters today confirming times and wards for the actual op, plus pre-op arrangements for the week before!

I imagine I'll just get used to feeling all over the place over the next few weeks.  I'll survive!

 ;D

Don't hesitate to let them know you are anxious. I've even had valium prior to dental work, I get myself so worked up. Get the good drugs, early and often!  ;D
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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
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