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Author Topic: Very bad news today  (Read 7325 times)
tito
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« on: April 09, 2010, 03:30:06 PM »

I started on PD about 8 months ago. It's been going pretty well - I feel better.

Then, I developed severe pain in my legs. I was diagnosed with AVN, will probably have to have one or both hips replaced.

But, today, the earth caved in. My lovely, special, beautiful wife, my world, my best friend, has lymphoma. I don't want to live without her. And she's worried about me.

I'm scared, we don't know what kind it is or what's happening. She's out with her friend at dinner and I can't see the keyboard for the tears. Help.
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galvo
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« Reply #1 on: April 09, 2010, 03:33:53 PM »

I can but offer you my thoughts and prayers.
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Galvo
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« Reply #2 on: April 09, 2010, 03:39:05 PM »

Tito, what a very sad time.  Please remember to keep talking to your wife about your fears, your hopes, your love for her etc.  You are both in my thoughts.   :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
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(2 1/2 hours X 5 weekly)
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Living donor transplant (sister-in law Kathy) Feb. 2009
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Second trx doing great so far...all lab values in normal ranges
MooseMom
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« Reply #3 on: April 09, 2010, 04:16:20 PM »

I bet the world feels surreal to you right now, like there has been some tectonic shift yet no visible signs of any.  When will you find out more about your wife's condition?  When will you get the chance to ask some questions and get some answers?  In the meantime, we are here for you and will do our best to support you through this very trying time.
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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."
Rerun
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« Reply #4 on: April 09, 2010, 04:26:39 PM »

Wait and see what kind it is and what stage.  You guys will get through this too; together.

Best wishes and keep your chin up.

                                                      :cuddle;
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Mizar
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« Reply #5 on: April 09, 2010, 04:45:00 PM »


 Just wanted You to know, that People, You don't know, are Thinking about You at this Moment.  Take Care.
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RightSide
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« Reply #6 on: April 09, 2010, 05:20:55 PM »

I'm sorry to hear about your wife.  I know you're feeling as scared for her as she did for you when you got kidney failure.

But today, neither disease is the end.  Heard of Fred Thompson, the "Law and Order" actor and Republican politician?  In 2004, he was diagnosed with a non-aggressive form of lymphoma.  He never got really sick from it.  He was treated for it, and it's still in remission, the last I'd heard about it.

So try to wait until your wife's lymphoma is classified and staged.  You never know.
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okarol
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« Reply #7 on: April 09, 2010, 05:44:16 PM »

I am sorry to hear about the AVN, and about your wife. That's a lot to deal with (on top of everything else.)
My mom has non-Hodgkin's lymphoma. She was treated with chemo. They say they can't cure it but they can control it for a long time. I hope she is as fortunate. Please take care.  :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.
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She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
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Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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looneytunes
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« Reply #8 on: April 09, 2010, 06:33:37 PM »

Oh Tito.  I'm so sorry for both of you.  It is so tough to stand by someone you love dearly and realize that you might lose them.  There are so many kinds of lymphoma and some are very responsive to treatment, some aren't.   My SIL is battling a very rare form of it right now.  I will be hoping that your wife has a form that is highly treatable.  My heart goes out to you both and you will be in my prayers. 
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"The key to being patient is having something to do in the meantime" AU
Jean
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« Reply #9 on: April 09, 2010, 07:21:32 PM »

So sorry to hear this Tito. What a blow. Please know we are all here for you and care what happens to you and your wife both.
God Bless you both.
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Mimi
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« Reply #10 on: April 09, 2010, 10:07:56 PM »

So sorry to hear Tito.  You and your beautiful wife willl be in my thoughts and prayers.


Mimi
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Joe Paul
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« Reply #11 on: April 10, 2010, 02:36:04 AM »

Tito, you and your wife will both be in our thoughts and prayer. Its said the tunnel is always darkest before the light. Please hang in there....
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"The history of discovery is completed by those who don't follow rules"
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del
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« Reply #12 on: April 10, 2010, 05:51:28 AM »

I will be thinking about you.  :grouphug;
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Red from Canada
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« Reply #13 on: April 10, 2010, 08:19:12 AM »

Tito, What a tragic turn of events!  You will both be in my thoughts and prayers. Try to keep your chin up.
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Brightsky69
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« Reply #14 on: April 10, 2010, 09:02:38 AM »

I am so sorry.  :'(
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Transplant June 11, 1991 (1st time) my mom's kidney
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cloud393
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« Reply #15 on: April 10, 2010, 09:23:52 AM »

My prayers are with you and your wife.  I agree with some of the other posts, hang in there and see what type and what stage she is at.  On the other hand, I sympathize with the way you feel.  I would be the same way if we got that kind of news about my husband.   :pray;
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May you live as long as you want and never want as long as you live.
billybags
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« Reply #16 on: April 10, 2010, 10:40:05 AM »

Tito, Thinking about you both, hang in there.
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tito
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« Reply #17 on: April 11, 2010, 03:30:34 PM »

Thank you so much. Prayers and positive thoughts, even from people you don't know, have been proven to help. A lot of our fear has come from not knowing - we will find out more this week. We are so, so fortunate to be living in Boston. Our hospital is Brigham and Woman's - Dana Farber. If they can't do anything, nobody can.

Thank you again for the words of encouragement. They have meant a lot to me this weekend. Patrice is out teaching a yoga class at the studio she owns.

I can't believe that the second thing Patrice told me (after "Ï have some bad news...") was that she couldn't donate a kidney to me and how badly she felt. What a woman, what a mensch.

Hitler couldn't kill her father and prevent her birth. We'll make sure lymphoma doesn't get her.
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kitkatz
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« Reply #18 on: April 11, 2010, 07:53:24 PM »

When the ceiling caves in, it really caves in.  I wish you both luck.
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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 #19 on: April 12, 2010, 07:06:35 PM »

 :grouphug; :grouphug; :grouphug;

I am so sorry to hear the news about the news you and your Wife are dealing with. My thoughts and prayers go out to you both.  :pray;
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1970 Born with ureters in wrong side of bladder. Reflux for 4 1/2 years. Sever scarring.
1974 Surgery to fix birth defect and abdominal hernia.
1989 - Diagnosed with Hashimoto's Hypothroid
1991 - Diagnosed with Primary Adrenal Insufficiency (Addison's Disease)
Nov 2009 - Listed for Transplant at Shands (Gainesville, FL)
1970 to 2010 40 years of CKD
Mar 2010 PD Catheter placed
April 2010 PD Started, Baxter Cycler
Nov 2011 Dialysis is taking it's toll. But, I am still here kicking death's ass! Tired...So very tired...But kicking!

Have SEVERE PTSD from Medical Related Trauma in Childhood (took me 3 years to get listed because of it)

Do what you can, with what you have, where you are.  ~Theodore Roosevelt
Poppylicious
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« Reply #20 on: April 13, 2010, 11:17:29 AM »

Your wife sounds like a most amazing woman, tito.  Thinking of you both.

*hugs* 
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- wife of kidney recepient (10/2011) -
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« Reply #21 on: April 13, 2010, 04:57:42 PM »

Oh crap, I am sooo very sorry that your world is falling apart.   :(  I remember 4 years ago when my mother was diagnosed with a very rare cancer.  I cried and cried for days thinking I was going to lose her.  She went to a great doctor, had her treatments and is cancer free.  They can do so very much for your wife nowadays. 

My thoughts and prayers are with you both. 
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
RightSide
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« Reply #22 on: April 13, 2010, 05:51:14 PM »

Thank you so much. Prayers and positive thoughts, even from people you don't know, have been proven to help. A lot of our fear has come from not knowing - we will find out more this week. We are so, so fortunate to be living in Boston. Our hospital is Brigham and Woman's - Dana Farber. If they can't do anything, nobody can.
Speaking as a fellow Massachusetts resident, I agree.

I hate the cold weather, the snow, the poor roads in Massachusetts.
But there is one good thing about Massachusetts:  It has one of the finest medical complexes on earth.  And you have that going for you and your wife.

Take care.
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carla13
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« Reply #23 on: April 16, 2010, 11:45:36 AM »

I can't imagine how you must be feeling. I hope that your wife gets the best medical treatment possible and comes out the other end. I hope that you also get the treatment you need and get a transplant so that you can be at your best to support her through this difficult time.

My thoughts are with you.

carla
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cdwbrooklyn
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Positive Thoughts equal Positive Energy

« Reply #24 on: April 16, 2010, 01:58:19 PM »

Sorry to hear what you and your wife are facing.  God is the answer to all our problems.  He is known not to give you more than you can bear.   Talk to him and have faith.  My prayers go out to you and yours.   Keep your head up!!!  :pray;
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
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