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Author Topic: Husband's dr appt  (Read 11394 times)
MooseMom
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« Reply #75 on: July 20, 2012, 05:47:56 AM »

Not unlike Barry, I'm having a hard time accepting all of this, too.  I am just devastated.  I am so sorry that the next year will be filled with treatments and the anxiety that goes with waiting for test results. 

I wish you both peace and love and hope.  I'm still hoping that he will get his miracle.

We are here for you both, paris. :grouphug;
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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 #76 on: July 20, 2012, 02:05:00 PM »

I'm really sorry that it's taken me so long to contribute to this thread Paris, but please know that I'm thinking of you both and sending many *huggles* (not that they do much good!) your way.

Much love ... ♥
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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 #77 on: July 20, 2012, 06:30:46 PM »

Paris, more than anything I want to wish this away....

Even if you are staying strong on the outside, I'm crying.

You are one amazing person, and neither you nor Barry deserves this. I am just so very sad. Hugs to you, to Barry and to all of your family. Lean on them, and lean on us.

Words are so inadequate.

 :grouphug;
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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. :)
lmunchkin
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« Reply #78 on: July 20, 2012, 07:02:20 PM »

 :pray; :pray; :pray; :pray; :pray; :pray;
lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
monrein
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Might as well smile

« Reply #79 on: July 20, 2012, 08:27:59 PM »

 :grouphug;  Paris, I hurt for you all and wish I could whisk away some of your burden.  I'm flooded by images from Vegas, of Barry patiently carrying load after load of stuff from the car to your suite, driving to the restaurant for breakfast and just being there with and for us all.  You are such a special family and I send you thoughts of strength... :cuddle; :cuddle; :cuddle; :grouphug;
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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
Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #80 on: July 21, 2012, 02:25:38 PM »

I want you to know that I am praying for you and the family.  I know how stressful it can be.  Take it one day at a time.   :grouphug; :grouphug; :grouphug; :grouphug;

I know when Victor was down with his injury sometime I took it one second at a time....okay that second was good, this next one is coming....then it was a minute at a time...okay made it through that minute without losing my mind...all right now it has been five minutes.....I have not run screaming from the room yet... good for you!  It was taking it slow one thing at a time.


« Last Edit: July 21, 2012, 02:33:06 PM by kitkatz » Logged



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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #81 on: July 21, 2012, 06:59:52 PM »

 :grouphug; :grouphug; :grouphug;
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« Reply #82 on: July 21, 2012, 11:28:21 PM »

I am so deeply sorry to hear all of this. please know that you and your husband are in my thoughts/prayers.  :grouphug;
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okarol
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« Reply #83 on: July 22, 2012, 01:30:29 AM »

 :( Love you paris
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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
galvo
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« Reply #84 on: July 22, 2012, 03:12:08 AM »

My thoughts are with you, paris!
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Galvo
lmunchkin
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"There Is No Place Like Home!"

« Reply #85 on: July 22, 2012, 08:58:44 PM »

Thinking of You & Barry and looking upward.  Love to you both.

lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
lmunchkin
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"There Is No Place Like Home!"

« Reply #86 on: July 25, 2012, 06:40:14 PM »

Still checking in on you Paris!  Know you have your plate full now, but wanting you to know that Im thinking of you!

lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
okarol
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« Reply #87 on: July 25, 2012, 06:42:45 PM »

 :waving; Hey paris, hope you're ok,
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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
MooseMom
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« Reply #88 on: July 25, 2012, 07:25:21 PM »

We're all here for you and Barry. :cuddle;
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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."
paris
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« Reply #89 on: August 18, 2012, 04:41:41 PM »

I miss you all so much.  This is just so unreal.  Keeping track of my stuff kept me busy, but now with Barry - I have moments of being overwhelmed.   As I have mentioned before, he doesn't like to look at results, paperwork, labs, etc.  So I am walking around with the results of the 1st pet scan and he doesn't want to know anything about it.   As long as the lesions look better, it makes him feel like it is all working.  I truly hope so.  He has had new ones form, but maybe the drugs are slowing it down some.  He only knows about the tumors and lesions he can see on the skin.  He doesn't know that there are many throughtout his lungs, some  2-3 inches. All the soft tissue in the abdoman hasdozens of tumors, but none are on the other organs, just the lungs.  His  mouth reacted to the last drug and he can't have another round until all the sores are healed. It felt like the inside skin was burnt. He could only eat through a straw or drink a little soup.  He is eating better the past two days.  He missed one treatment, but it looks like his mouth will be good for Monday's.   Going to the ER with a 101.6 fever was no fun. He had 3 days of round the clock antibiotics and a total of 4 units of blood. His white count was .3 .  It is now back up to 3.   I like it when the decimal point is on the right side instead of the left!   

His hair is falling out. It is such a reminder of what is going on.  He knows he won't be back at work.  I think he has set Jan. 11th as his retirement. He had lots of sick/vacation time and co-workers have donated 2 more months to him.  He has great people he works with.  He will have a 100 days of treatments and rest until the next petscan.  That will be the end of October. We haven't gone any where since summer began.  Just to the hospital and occasionally I have to get groceries.  Every once in a while, I just want to run away. We have been dealing with major health problems for about 10 years now.  I'm really not complaining -- I do know many are facing much worse. 

I need to make being here a top priority.  I need my safe place where others know what is going on.  BTW, friends tell him how good he looks!  He has lost almost 70 pounds, hair is getting spotty - but he still looks good!    :rofl;   Nope, he looks like a man with Stage 4 cancer!  One good friend said he looked good for what he is going through. I will remember that phrase. It acknowledges the illness while trying to say something nice.   

Again, I miss all of you so much.  I owe some messages and I will get them sent.  I am trying to get life sorted out and organized, but so far, I am not getting it done.   Thank you for your concerns, thoughts and prayers. He needs them so much.    :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
willowtreewren
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« Reply #90 on: August 18, 2012, 04:48:22 PM »

Just sending lots and lots of

 :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :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. :)
AnnieB
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« Reply #91 on: August 18, 2012, 06:55:24 PM »

There is something called "Magic Mouthwash" which is designed to help those who develop mouth sores from chemotherapy (if that is what caused the problem). You can check out what the Mayo Clinic has to say about it; http://www.mayoclinic.com/health/magic-mouthwash/AN02024/ .
I feel for what you are going through. Sometimes the treatments my brother-in-law went through were pretty rough, and my sister was his primary caregiver. She felt she had to be strong for him, but often she felt really exhausted (and not able to show it, but had to keep positive for him even when most stressed out). Like everyone else here, I will be praying for both of you.
 :cuddle; :cuddle; :cuddle;
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« Reply #92 on: August 18, 2012, 07:39:20 PM »

 :grouphug;
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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.
kitkatz
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« Reply #93 on: August 18, 2012, 07:53:15 PM »

Love to all of you. I try to send something to you once a week in the mail.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
okarol
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« Reply #94 on: August 18, 2012, 08:27:44 PM »

I am happy to see you posting Paris. I agree, we get so much from this forum. And you have given so much to many people here. We can walk this path together, holding each other up. Love you, please tell Barry I said hello.
 :grouphug;
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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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Cattitude

« Reply #95 on: August 19, 2012, 08:29:22 AM »

 :grouphug; :grouphug; :grouphug;  We're here for you.
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YellowRose
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« Reply #96 on: September 08, 2012, 11:20:28 PM »

Thinking of you & praying for you both.
- Rose
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Dec 1993 start with CAPD
May 1995 1st transplant
Jan 2007 start with CCPD
April 2011 start with Hemo
Sept 2012 2nd transplant
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