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Author Topic: Frank is comfortable here at home  (Read 4954 times)
Dianejt
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« on: September 08, 2010, 02:27:15 PM »
As of yesterday he is on Hospice. He refused to go Monday to Dialysis and we where told he could go Tuesday they had room for him. He told us he did not want to go again. He is so very tired of fighting, Friday his session was ok. He was pretty alert on the ride home but climbing the front stairs (we do have a ramp but he wanted to go in the front door) he said "this is getting harder." He slept all weekend not coming out of the bedroom too much. Last Tuesday Hannah started kindergarden. He kept saying he wanted to be up & in the kitchen so he could see her off on her first day of school. We have a nice picture of them but I forgot how to upload it on here.  Now he is very much sedated. He has not conversed much today, only asking to wait till later as I was cleaning him up & changing the bed. His eyes are very watery & not in focus and he is hard to respond to me. From what I've heard he is slipping into a Ureamic coma, which they say is a very peaceful way to go. I am worried that since he did receive TPN (3 liters) over the weekend that his lungs will fill up. I wish he would have gone for that last treatment on Monday to at least remove the fluids.  I don't want his death to be hard. A new medicine patch has been ordered to help with secreations.
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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
MooseMom
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« Reply #1 on: September 08, 2010, 03:00:09 PM »
I wish I had the words...

If you have any concerns at all (ie regarding his lungs), please find someone who can give you information that will reassure you.  I hope you are receiving all of the support that you and Frank deserve. :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."
Darthvadar
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« Reply #2 on: September 08, 2010, 03:14:56 PM »
I'm thinking of and praying for you both......

Those we hold most dearly never truly leave us... They live on in the kindnesses they showed, the comfort they shared, and the love they brought into out lives...

May you have courage during the coming days....

May God bless and protect you....

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....
kellyt
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« Reply #3 on: September 08, 2010, 04:55:56 PM »
I have no words, either.  Only tears.  I pray for peace for Frank and for you.   :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
paris
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« Reply #4 on: September 08, 2010, 05:05:19 PM »
Diane, my heart is aching for you.  These are the days that it is harder to be the caregiver.   I will be praying for you both to be surrounded with love, peace and calm.    I admire the grace you have during all of this.   Frank must feel very loved and cherished.   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
carol1987
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« Reply #5 on: September 08, 2010, 05:06:25 PM »
Thinking of you...... :grouphug;
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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...)
Sunny
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Sunny
« Reply #6 on: September 08, 2010, 05:15:11 PM »
This must be difficult beyond words.
I truly feel for you and your family. Hospice is a very good program that will make things easier so I hope it will help your situation.
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Sunny, 49 year old female
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cariad
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« Reply #7 on: September 08, 2010, 06:11:40 PM »
Diane, I am so sorry. Love and peace to you and Frank.
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Jean
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« Reply #8 on: September 08, 2010, 07:07:58 PM »
Diane, again, I am so sorry for this that is going on in your life.I wish you calm and peace, and for Frank too.
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One day at a time, thats all I can do.
boswife
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us and fam easter 2013
« Reply #9 on: September 08, 2010, 08:45:51 PM »
My heart and prayers are with you.  Bless your hearts dear ones and may Gods blessings help you through this.  With love
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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
Mimi
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For any who do not like me I use - prayer.
« Reply #10 on: September 08, 2010, 10:21:21 PM »
Diane, my mother went to live with the Lord under similar circumstances.  The mode she used to end her journey was to stop eating.  She had a cerebral hemmorage that left her whole left side
gone and she did not want to live that way.  Hospice was very good to her and to us, her family.  They saw to it that she did not suffer
and that she was cimfortable.  It would be a lie for me to say that it was easy.  It was not.  However, iit was a comfort to us to know
that she left us in the way she wanted.   I pray that you will get this same comfort while watching over Frank as he leaves you.  Any questions you have over his feelings can be answered by the Hospice workers or his personal doctor.  My heart bleeds for you and
I pray that the comfort you need, and the comfort Frank needs, and of course the family, will be forthcoming to you.
You all are in my heart and prayers. 
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
billybags
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« Reply #11 on: September 09, 2010, 04:33:31 AM »
My prayers are with you both.
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Dianejt
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« Reply #12 on: September 09, 2010, 05:06:32 AM »
I was able to change my profile picture to the last one taken of Yaya (Frank) & Hannah on her first day of school. This event seamed to be the last goal he had. How precious is that!
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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
monrein
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Might as well smile
« Reply #13 on: September 09, 2010, 05:32:49 AM »
What a beautiful picture of them both!   I send you hugs and strength and want you to know how much I admire your courage and calm under these terrible circumstances.  I wish you all peace.     :grouphug; :grouphug; :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
Dianejt
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« Reply #14 on: September 09, 2010, 05:39:36 AM »
Quote from: monrein on September 09, 2010, 05:32:49 AM
What a beautiful picture of them both!   I send you hugs and strength and want you to know how much I admire your courage and calm under these terrible circumstances.  I wish you all peace.     :grouphug; :grouphug; :grouphug;

I'm not sure you would call it calm, I think it is being Numb.
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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
dale88jr08
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« Reply #15 on: September 09, 2010, 06:22:42 AM »
Diane,
 I understand your pain, to see your loved one suffer through dialysis and you know that it isn't working for them is just agonizing. Hospice is the route to go and they will make sure that he doesn't suffer. I wish that I had used hospice with my dad instead of trusting that the Dr. would follow through on his promises to me. I know your pain, I feel it still whenever I think of my dad. I was with my dad the entire last 36 hours of his life, holding his hand, telling him how much I love him, what a wonderful dad he was to me....Be there for Frank, he will know that you are there, he will hear your voice, he will feel your love...I hope that when his time does come that it will be peaceful and calm. My heart goes out to you...Here is a hug, I hope that it helps.  :grouphug; :grouphug;
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carol1987
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« Reply #16 on: September 09, 2010, 07:32:04 AM »
Such a beautiful photo.............
I can't find the right words... just know that so many are praying for you..........
 :grouphug;
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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...)
Marina
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God Bless my donor family!! :)
« Reply #17 on: September 09, 2010, 08:54:05 AM »
((((((((((((Diane)))))))))))))))

at  such  difficult  time,  there  are  no  words  to  express  what we  feel,  all we  can  do  is  offer  (((((((((hugs)))))))))))))  and prayers!   :cuddle; :grouphug;
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
billybags
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« Reply #18 on: September 09, 2010, 11:29:53 AM »
That is a picture to treasure. It is an awesome thing to see your grandchildren go off to school for the first time. So glad Frank was there to see her go,
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Sunny
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Sunny
« Reply #19 on: September 09, 2010, 02:59:16 PM »
This is a beautiful picture. A very special day for them both.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
glitter
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« Reply #20 on: September 09, 2010, 03:50:20 PM »
 Dianejt, I am sorry this is happening to you...
(((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))
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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 #21 on: September 09, 2010, 05:13:30 PM »
Diane, I'm so sorry about Frank.   :grouphug;
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texasstyle
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« Reply #22 on: September 09, 2010, 05:34:47 PM »
I probably don't have the proper words to comfort you, but know that I AM feeling for you (and Frank). A friend of ours recently made the same decesion. I think he was just so tired. Our friend went peacefully actually. Kinda slipped into a coma also. They had something for the secretions as well. I was suprised to see that in your posr because that is only the 2nd time I'm hearing that term. I always felt that  if somone makes such a decesion, that's truly what they want. I know that doesn't make things any better for how your feeling right now. I am slowly learning though in life, sometimes we have to put our own needs and wants aside and it's a difficult thing to do. My prayers are with your family. Hugs to all of you. I'm sorry
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caregiver to husband using in-center dialysis 4 years
Sluff
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« Reply #23 on: September 09, 2010, 06:15:21 PM »
Diane, I am sorry. Not sorry for what you and Frank are going through so much as I am sorry that after all you both have been through, that it has to come to a point where anyone feels that this is the best choice they can make after a lifetime  of giving to society. It is sad. Please know you and Frank will be lifted up in prayer. Frank for a peaceful transition and you the strength, peace and courage to accept Franks decision and the path that the Lord has led you both.
We are here for you.
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