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| | |-+  Gutted- we are so close to TX!
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Author Topic: Gutted- we are so close to TX!  (Read 4079 times)
Artlenock
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« on: October 10, 2012, 12:34:07 PM »

My poor BF, he is on dialysis three times a week after crash landing in April  :o

Then last month he had a nasty infection/flu and was bedridden for week. I cared for him at home, my employers were pretty good about it.

We were finally given the TX date last week - 25Th October.

We both work full time so I've applied for special leave (unpaid) and he has arranged with his too for the time off.

He's been so tired lately, sleeping a lot, now at dialysis tonight they tell him his red cell count is low which could jeopardise the TX.

I'm in bits ! :-(

How am I supposed to hold it together when he returns from dialysis tonight? My eyes are all red and he'll probably tell me off for crying, of course he'll be angry and upset if they postpone it and his Mum will already be nervous as she is the donor and this just delays things further, I'm so upset and got all ready for it. I don't think I can face going to work tomorrow I will just break down I feel distraught.

Sorry to go on, I have no real support here, my family are at the end of the phone but  I don't think they really understand what living with this is like. I can't see us both working full time forever and I am scared what the future holds for us, especially financially, there are talks of wage cuts in the Gov dept I work for and he seems to be getting sicker, though bless him he is desperate to be well enough to carry on working.

Whoops this too long! Thanks for reading and letting me get this off my chest !
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: October 10, 2012, 02:14:52 PM »

 :cuddle; :cuddle; Has he been getting procrit or epogen for his hemoglobin?
I hope he can keep his transplant date. So sorry, it sounds like such a stressful time.
Thank God he has a donor. That's the best - hang in there.
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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 #2 on: October 10, 2012, 02:19:20 PM »

 :grouphug; :grouphug; :grouphug;
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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 #3 on: October 11, 2012, 10:47:06 AM »

*huggles*

How are things looking today, Artlenock?

I used to hate it when Blokey rang me or texted me from dialysis with bad news.  It made me a complete wreck because there was nothing I could do from so far away and then nine times out of ten he'd come home fairly happy because he'd had time to reflect on the bad news, or talk to a nurse/doc about it and put things into perspective. I'd still be panicking!

I hope the transplant can go ahead on the 25th.

*huggles* again.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
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Everything was beautiful, and nothing hurt.
boswife
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us and fam easter 2013

« Reply #4 on: October 11, 2012, 11:35:16 AM »

 :grouphug; and  :cuddle;  I hope today is better and things have changed some..  It's definatly a roller coster ride for a while with the downs sometimes feeling too much to bear.   :pray; for you for better day. 
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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
lou
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« Reply #5 on: October 11, 2012, 12:27:04 PM »

 :cuddle; sending big hugs. hoping things are looking better today xxx
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Artlenock
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« Reply #6 on: October 12, 2012, 06:41:38 AM »

Thanks for your kind messages  :thx;

Today was the HTA (Human Tissue Authority) meeting and some more tests.

It went well, even though he has low HB they will do the op and give him a transfusion after the TX, so things looking a bit more positive. Phew!

I hope that any infection has cleared by then, the dialysis unit have ten days to get him in shape  :boxing;

This rollercoaster is just getting started....good to know I can come here when it's getting too much
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Leanne
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« Reply #7 on: October 14, 2012, 07:14:30 PM »

Good luck with the transplant!  Hoping everything goes great!
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
Artlenock
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« Reply #8 on: October 17, 2012, 02:13:44 AM »

Thanks for all your support peeps.

I am sorry to say that the TX has been postponed from 25th Oct to 15th Nov.

They want to combat this infection and raise his low hb ( 8 !)

Obviously it is a huge emotional rollercoaster right now and I feel exhausted, he is signed off from work to get well before the op and I am still holding it together and working (just) . Hopefully when he is reveiwed on 13th he will be well enough to receive his Mum's amazing gift  :2thumbsup;

Fingers crossed for the new date !
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Poppylicious
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« Reply #9 on: October 19, 2012, 05:00:09 AM »

Sorry it's not going ahead on the original date ... but at least it's still going ahead.  Sending lots of positive infection-busting vibes your way! 

*huggles*
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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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