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Author Topic: Just gor my 3rd call!!!  (Read 6650 times)
Pam
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« on: July 08, 2011, 03:33:19 PM »

I just got a call from Henry Ford. They have a kidney. They have to do a biopsy to nake sure it is viable. If it is I am first in line and could be on my way tonight.
I'm running around like crazy  and for sure not thinking straight. What do I take etc etc.
I know I'm not much of a poster but this site has saved my sanity many times .
Pam
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MooseMom
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« Reply #1 on: July 08, 2011, 03:34:50 PM »

Got my fingers and toes crossed for you!!
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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."
jbeany
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« Reply #2 on: July 08, 2011, 03:50:27 PM »

Hurray, Pam!!!!!

Okay - deep breath here.  You need loose clothes, comfy slippers, some light reading.  A strapless bra or a halter bikini style top that ties behind your neck is the only kind of bra you can put on with an IV on.  If you aren't comfy walking up and down halls without support, these are better than no bra at all. 

A white noise machine or a small fan.  Cell phone/laptop/camera - and don't forget the chargers/batteries.  Bring a small extension cord.  The plugs are never in a good place for keeping chargers in easy reach. Leave the laptop in the car until you are truly awake!  Pack a pen and a small notepad and/or post its. 

Pack a nail file and clippers - these seem to be impossible to find in a hospital.  Tweezers are good too (at least if you have Greek ancestors and annoying chin hairs like I do.)  A small magnifying mirror is a great idea.  Chapstick is a must.

About 15 dollars in small bills to leave with your stuff in your room - some hospitals have a "courtesy cart" with candy and mags that comes directly to the patients.
Take off all your jewelry and leave it home.  Bring a case for your eyeglasses.  Bring sunglasses as well - you may be lucky enough to walk outside.  Pack a small tube of sunblock for this as well.  The meds will make you burn easily.

 Write out a list of everyone who will need to be updated and their contact info, and make sure who ever is going with you has it.  If the list is long, designate phone chains - so your support crew can call 10 people and dozens get the message.
Transfer all your id, insurance cards, some extra cash and a credit card to a small wallet that can be easily transported by your family.  Don't leave this in the room.  I have a little one that holds that as well as my cell and keys - much easier for my sister than dragging my entire purse.  My contact list went in it as well.

Good Luck!
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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.

boswife
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us and fam easter 2013

« Reply #3 on: July 08, 2011, 04:29:02 PM »

 :yahoo;  :clap;   :yahoo;  hope your already on your way and please do get back with us   :pray;   :cheer:
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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
Brightsky69
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« Reply #4 on: July 08, 2011, 04:54:23 PM »

So exciting! :clap;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
Jelena
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« Reply #5 on: July 08, 2011, 05:30:17 PM »

Really really REALLY hope this is The ONE!!! Fingers and toes crossed! :yahoo;
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Jelena
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will of the healthy makes up the fate of the sick.

« Reply #6 on: July 08, 2011, 05:33:53 PM »

Good Luck!!!  Jbeany gave some excellent advice!!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #7 on: July 08, 2011, 06:00:21 PM »

 :bandance; :bestwishes; :bandance;

Hoping hoping hoping that this is you BIG call and we next here that you are producing the golden liquid!  :2thumbsup;

 :yahoo; :yahoo; :yahoo;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Sax-O-Trix
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« Reply #8 on: July 08, 2011, 08:15:30 PM »

Good luck!!!  Keep us informed:)
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Preemptive transplant recipient, living donor (brother)- March 2011
Pam
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« Reply #9 on: July 08, 2011, 09:31:33 PM »

I just got another call from Hospital, The kidney was a perfect match, but after they did a biopsy and looked at all the pictures they decided it was not viable for transplant.
This was my 3rd call in 3 mos. How does any one handle the up and down of this? I think all of my hair has finally turned gray. I haven't ate since 4 so I'm going to eat and don't care if it's allowed or not, then going to bed, Tomorrow is a new day.
Thank you every one for all of your good wishes.
Pam
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galvo
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« Reply #10 on: July 08, 2011, 09:35:30 PM »

Bummer!
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Galvo
MooseMom
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« Reply #11 on: July 08, 2011, 09:36:07 PM »

I think eating whatever you damn well please would be a great pick-me-up after another disappointment.  Perhaps the best way to handle the ups and downs is to recognize that you are at the top of the list, that it's better to get three calls in three months than no calls in three years.  There's every reason to be hopeful and optimistic, so just hang on, get some sleep and yes, tomorrow is another day. :cuddle;  I hope your next call will be the lucky one.  I know it's disappointing, but you'd be even more disappointed if you got a duff kidney.  Wait for a really good one!  You deserve the best!
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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."
jbeany
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« Reply #12 on: July 08, 2011, 09:45:38 PM »

 :grouphug;

Hang in there - the right call will be coming.
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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.

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« Reply #13 on: July 09, 2011, 01:00:21 AM »

 :cuddle; It is a rollercoaster of emotions. Hoping your gift comes soon.  :cuddle;
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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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« Reply #14 on: July 09, 2011, 01:40:26 AM »

Hope you slept some of the nonsense away and things look better day Pam.  There is nothing like a good sleep to fix the drabs.  You have good cause to be "over it" after three let downs.
JBeany, that's a cracking list.  I must write it down or bookmark it.  :thumbup;
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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.
Pam
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« Reply #15 on: July 09, 2011, 05:19:44 AM »

Thanks again everyone. I had a good cry, ate some amazing lasagna and had a good nights sleep. the sun is shining and its another day!
Next time I will do something different though. I will not tell anyone about the call. If it happens I will let them know at the last min. not much sense in putting friends and family through all that stress.
Pam
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Jelena
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« Reply #16 on: July 09, 2011, 06:46:05 AM »

The way my husband and I dealt with situations like yours is that we were actually glad the transplant didn't happen because the kidney was not a good one and we decided it was much better in the long run to wait for a good and healthy one that will last for a long time and make recovery easy and with as few bumps in the road as possible. Our three calls were 6 months apart each, but it was well worth it! Hang in there, a real good kidney is out there and you will get it, you are so close!  :cuddle;
PS It's a good idea to tell as few people as possible next time. We did that this last time and called only the people whose support we felt we needed. It may sound selfish, but in these situations you just have to do what is going to make you feel better. You don't need extra stress. At least that was our experience. Hope your next call comes soon and that it will be worth the wait!!!  :thumbup;
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Jelena
willowtreewren
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« Reply #17 on: July 09, 2011, 09:54:55 AM »

Pam, I'm so sorry,

BUT

you know that your time is coming soon!  :2thumbsup;

 :grouphug;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Jie
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« Reply #18 on: July 09, 2011, 11:59:19 AM »

Three calls in three months! It will not take long for the forth call, and you are probably on the top of the list.
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carol1987
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« Reply #19 on: July 09, 2011, 02:34:43 PM »

I know it is so hard... but you want the kidney you get to be a good one!!!  Hang in there!!!   :cuddle; :cuddle; :cuddle;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Pam
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« Reply #20 on: August 06, 2011, 06:55:26 PM »

Ok at 6:30 I got my 4th call. I am standby for this kidney. I haven't told any family members. They've already been through this 3 times. I knew everyone here would understand though. I probably won't know anything until midnight. Nothing to eat or drink and I'm starved!!

I have a bag packed but for all who have been through this do I take my own meds and insulin or not. I always forget to ast my coordinator. Will update when know something.
Pam
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okarol
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« Reply #21 on: August 06, 2011, 07:06:53 PM »

Wow! Will be keeping good thoughts for you.  :cuddle;
I would bring insulin/meds. You may end up waiting even if called in so it would be a good idea. Be careful not to let you BS get too low.  :waving;
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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 #22 on: August 06, 2011, 08:33:37 PM »

Yes, take the meds.  Better safe than sorry, even if they always say you don't them when checking into the hospital.  For those of us with long drives there and home, they forget you might need them when you check out.

Good luck!   :cuddle; :cuddle; :cuddle;
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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.

Ang
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« Reply #23 on: August 06, 2011, 09:58:42 PM »

unfortunately this one was'nt for you, gives you a chance for a pretend dummy run in relation to 

what to pack,who to call , what needs doing etc etc etc, when the right kidney comes your way.
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live  life  to  the  full  and you won't  die  wondering
jbeany
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« Reply #24 on: August 06, 2011, 11:04:55 PM »

Ang!  Back up and read Pam's last post, right above Karol's.  She's on call #4 right now! 

Everybody cross your fingers for her!!!!! 
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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.

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