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Author Topic: Doctor mention it may be time for Hospise to come in  (Read 9263 times)
Dianejt
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« on: July 29, 2010, 05:03:25 AM »

Franks surgeon called last night (he also called on Sunday night) to see how Franks feeling. I told him how dialysis wipes him out, we talked about the appointment he had last week with the Gastrolygist who is dealing with Franks bowel fistula's. Franks albumin is not rising (1.6) & the fistula are not healing. His cancer has spread to the pelvic area & next Friday he has appointment with oncologist. Dr Blute feels that maybe it's time to call in hospice rather that put him through more treatment that probally will not work.
The closer he get to his dry weight the skinnier he gets, to the point of bones showing. I think I was disillusioned by the water puffiness.  My life is falling apart & now it time to tell him. He has been such a fighter through all this. My heart is breaking.
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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
galvo
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« Reply #1 on: July 29, 2010, 05:35:16 AM »

I am so sorry for your troubles.
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Galvo
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« Reply #2 on: July 29, 2010, 06:04:57 AM »

Sorry to hear this.   Please know you both are in my thoughts and I pray that you both become at peace with whatever needs to be done.




 :grouphug;
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Des
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« Reply #3 on: July 29, 2010, 06:24:19 AM »

May you carry your load with ease amid sweetness.
May you know when to surrender and do so with grace.

 :flower;
I am thinking of you both.

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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)
Darthvadar
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« Reply #4 on: July 29, 2010, 07:04:09 AM »

Oh Dear, Diane....

I was rather afraid that this might happen.... Please know that I'm thinking and praying for you and your darling husband....

We're all here to support you through thick and thin... I've had and continue to have great support here...

Please keep us informed...

Lots of 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....
billybags
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« Reply #5 on: July 29, 2010, 07:12:26 AM »

Dianejt, My heart goes out to you both. The doctor sounds like he is being honest with you, I would not like to make that decision. Frank has been a fighter and you have fought along side of him, how do you tell some one you love that this is the way things are turning out. Dianejt you will find the strength, you will be there with him all the way. My prayers are with you both.
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natnnnat
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« Reply #6 on: July 29, 2010, 07:23:33 AM »

Whatever happens we are here for you and Frank. 
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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.
paris
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« Reply #7 on: July 29, 2010, 08:29:14 AM »

I wish I had something wise and comforting to say.   We are here for you and will be keeping both of you in our prayers.   I pray that God will wrap His loving arms around you and hold you during this part of your life journey.    :pray;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
monrein
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Might as well smile

« Reply #8 on: July 29, 2010, 09:10:43 AM »

Diane (and of course Frank too), I'm so very very sorry that you must face this.   :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
cariad
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What's past is prologue

« Reply #9 on: July 29, 2010, 09:32:03 AM »

Diane and Frank, I am thinking about you both, wishing there were something I could do. We are all with you in spirit.
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aharris2
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Volcan Pacaya, Guatemala

« Reply #10 on: July 29, 2010, 09:46:44 AM »

Diane, We are sorry that Frank is so sick and that you two have to face this.  We sincerely hope that you are not at this juncture, that Frank's oncologist has more promising news.

Should you opt for Hospice, will they allow Frank to continue dialysis if he wants to? (This is a question that must be asked of them.) Please remember that the choice to call in Hospice is Frank's and yours, not the doctor's.

Our prayers are with you.

Rolando and Alene
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
glitter
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« Reply #11 on: July 29, 2010, 10:18:13 AM »

I am so sorry you two have to deal with this, I know your sorrow must be immeasurable. My heart is breaking for you both, I hate this bastard called cancer that takes the people we love.

If its time for Hospice, don't delay- they will help you make him much more omfortable then you can do on your own. My Mom recently had hospice, and they let her control what treatment she did and didn't want, they will respect your wishes about dialysis I am sure.
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: July 29, 2010, 10:47:45 AM »

Diane - all I can do is send you HUGS and let you know that we are here for you.  :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
cookie2008
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« Reply #13 on: July 29, 2010, 01:28:43 PM »

 :grouphug; :grouphug;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
Jean
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« Reply #14 on: July 29, 2010, 05:16:45 PM »

Diane and Frank,
I am so sorry it has come to this. But, if it is necessary then call them. They can be a source of great help and comfort to you and as stated earlier, can help you care for Frank easier too. I am just crying as I type this, I feel so badly for both of you. We are here for you both.
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One day at a time, thats all I can do.
MooseMom
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« Reply #15 on: July 29, 2010, 08:24:49 PM »

Having just gone through a somewhat similar situation with my own mother, I believe that there is a time when the priority must shift from fighting the good fight to easing suffering.  You and Frank need to do whatever it takes to ease his suffering.  It is a decision the two of you must make together.  I am sure that Frank will tell you what he wants, and I know you will honor his wishes.  That's what love is.

I am praying for you both to find solace.  I am so very sorry this is happening to the two of you.  I wish we could all be of more practical help, but know that you have our unending support. :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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