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Author Topic: Frank is going on Hospice  (Read 9889 times)
Dianejt
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« on: August 05, 2010, 06:06:29 AM »
We went to see the Doctor Tuesday evening and he told Frank that he felt the chemo would just make him suffer more & that the cancer spread into the pelvis is too extensive to cure.  He took the news very well as I'm sure he was also feeling like he is fighting a losing battle. He said last night that he is ready for hospice to come in. Frank has suffered with this for way too long. I never thought I would feel like I wish he would die, just to end this suffering. We have been married 33 years & I cannot imagine my life without him but I cannot imagine him living just to suffer.
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
billybags
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« Reply #1 on: August 05, 2010, 06:32:52 AM »
Dianejt, this is so sad, I really do not know what to say to comfort you, only that I will be praying for both of you.
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Des
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« Reply #2 on: August 05, 2010, 06:36:24 AM »
My heart is breaking for you...

This is SO sad to hear.

You are in my thoughts and prayers.

hugs
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
lola
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I can fly!!!
« Reply #3 on: August 05, 2010, 08:12:04 AM »
I am soooooo sorry,  :grouphug; :grouphug;
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monrein
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« Reply #4 on: August 05, 2010, 10:08:29 AM »
Diane, I just want to tell you how compelling your compassion and love for Frank is and how much it shows in your courage to face this tough time with him.  As hard as this is right now and will be in the immediate future, I'm so happy that Frank has you and that you've had each other for 33 years.   Big hugs to you both.   :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
glitter
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« Reply #5 on: August 05, 2010, 12:20:33 PM »
I'm sorry you have to go through this-I am glad he has you. My thoughts are with you both.   :grouphug; :grouphug;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
MooseMom
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« Reply #6 on: August 05, 2010, 12:46:26 PM »
That Frank feels that he is ready for hospice should give you some modicum of comfort.  You now know that you can support him in his decision, and this will make it all easier for you (thought still not "easy" at all).  You will be surrounded by people who are trained to ease his suffering.  Watching your loved one suffer is agony..there is no other word for it, and I want BOTH of you to be spared this.  It is important to keep Frank as comfortable as possible; he doesn't deserve to suffer any longer.  He is so lucky to have you.  Please keep us updated.
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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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Cattitude
« Reply #7 on: August 05, 2010, 03:21:39 PM »
 :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.
galvo
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« Reply #8 on: August 05, 2010, 03:51:28 PM »
 :bestwishes;
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Galvo
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« Reply #9 on: August 05, 2010, 05:57:14 PM »
 :grouphug;
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natnnnat
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WWW
« Reply #10 on: August 05, 2010, 06:19:46 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.
Jean
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« Reply #11 on: August 06, 2010, 12:24:07 AM »
Diane, so sorry to hear this. I am grateful that you are going to have some help caring for Frank. Nothing else to say, except I am sorry and hang in there baby.  :grouphug;
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One day at a time, thats all I can do.
okarol
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« Reply #12 on: August 06, 2010, 12:42:41 AM »
Very sad news.  :'(
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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
paris
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« Reply #13 on: August 06, 2010, 01:16:09 AM »
I  am so very sorry.   I will keep you both in my thoughts and prayers during this transition time.   And prayers of acceptance and comfort for you, Diane.    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
glitter
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« Reply #14 on: August 06, 2010, 04:44:56 AM »
Hi- I woke up thinking about you two- have an extra hug, I wish I was there to hug  you in person.. :grouphug;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
Marsh
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« Reply #15 on: August 06, 2010, 07:02:24 PM »
So sorry to hear this! :grouphug;
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Dianejt
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« Reply #16 on: August 06, 2010, 08:11:15 PM »
According to our local hospice you may not be on TPN or dialysis if you go on Hospice. All treatments must be stopped. Tonight Franks nephew came to visit. He is a ER/Critical care Doctor in NYC. All through the past few months I have been in close contact with him about all the surgery's & complications.

He was very much thinking that Frank is not at the point to go on Hospice. He thinks he still is strong but the pain is taking over him. He feels that they are just going to pump him up with Morphine so he will not be suffering. He said he feels that if we get a "Pain Specialist" Doctor they would be able to control his pain and make the next few months Quality time. He is not going forward with Chemo treatment but if he can have pain free time before the cancer progresses more it would be wonderful.

We are still meeting with the Hospice nurse tomorrow to see what they say. There is a "Bridge " program pre Hospice that might be what we need at this time.

I am hopeful that this new plan will work to give us more time. I know he will be gone soon enough but to have a few extra months, that are pain free (or as close to) would be heaven. I will keep you posted.
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
glitter
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« Reply #17 on: August 06, 2010, 09:28:12 PM »
I didn't know that about dialysis. I hope a pain specialist can give you some more time together that is pain free....having time to say all the things you want is a good thing, I am hoping you two have more,more,more time. If I was a praying person- I would- but the best I can do is think hard in your direction, I wish it could help.

Please let us know how your both doing. :grouphug; :grouphug;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
Darthvadar
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« Reply #18 on: August 07, 2010, 04:54:04 AM »
Thinking of, and praying for you both....

Hope you find the right course of action for you both....

Love...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Mizar
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« Reply #19 on: August 07, 2010, 05:29:21 AM »

  Peace and Calm Thoughts, to Both of You, as You make these Decisions. It's a Difficult time. I will be Thinking of You.
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