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Author Topic: My pain  (Read 9763 times)
Athena
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« Reply #25 on: August 21, 2015, 04:04:03 AM »

Thanks to everyone for all the caring thoughts. I thought we would have more time , but time ran out. 
To all you on dialysis , please keep fighting this awful illness. Your loved ones would miss you terribly if you lose the battle. I am so lost I cant think of going on. I hope I can .

No words can possibly ease your pain and sense of devastating loss right now Obsidianom however for those of us who continue to fight this awful illness and live life to the fullest, we very much need a special person like you to be around. You are honestly like an oasis in a desert in this battle for life and irreplaceable. We need you.
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Vt Big Rig
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« Reply #26 on: August 21, 2015, 05:32:06 AM »

My deepest sympathies Dr O. In the short time I have been on this site your information has been helpful and your obvious dedication and love for your wife inspiring.

She left this world certainly knowing how much you cared.

God Bless.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Rerun
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Going through life tied to a chair!

« Reply #27 on: August 21, 2015, 08:56:47 AM »

I am so sorry for your sudden loss.  May family and friends surround you at this time with love.

                     :pray;
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Jean
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« Reply #28 on: August 22, 2015, 04:50:44 PM »

Dr. O, I am so very sorry for your loss. I am grateful that your dear sweet wife had such great care. Take the necessary time to grieve, I have lost both my parents, a wonderful husband and my first born son. Take my advice please.
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One day at a time, thats all I can do.
obsidianom
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« Reply #29 on: August 23, 2015, 05:01:27 AM »

Thank you all again for all the heartfelt messages. Other then my wife I didn't have any family around where we live . I am at my mothers out of state now as I couldn't bare to be alone in the house looking at all the memories and the medical machines we had.  In a way this place and all of you have become another family to me over these past 2 -3 years.
What is also hard beside losing the love of my life is suddenly not having all the work to do that I had to take care of her. I never wrote much about it but for 10 years she has been on a feeding tube and had many medical issues before dialysis. So for 10 years I gave my whole life over to taking care of her and only working part time. The last 3 plus years it became intense while on dialysis almost 20 hours per week.  I had to do all the housework, dress her, clean her , wheel her around and do even the simplest things for her . Yet she never lost her will to live or her mind.  She was always there with me to talk to and be next to. We were never more then 10 feet apart over the last few years.
I had a rigid schedule starting at 4:30AM every day , 7 days per week to take care of her. Each day was all out to get everything done. Now suddenly its over abrubtly with no warning and I don't know what to do with myself. I find myself pacing a lot. 
I hope to be able to return here to help again soon.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #30 on: August 23, 2015, 09:36:13 AM »

Dr. O - Once again, my sympathies.    Those of us on dialysis can only hope that our loved ones miss us as much when we pass (or, rather, hope that they do not to spare them the pain).   I often find the though of leaving my wife alone more worrysome that dying.

Your advise and commentary on IHD has been most helpful, and gave me the motivation to push hard for nocturnal (I start in 26 days) so I can stop flogging my fistula.  I hope you can find it in you to continue to drop in on us.
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kitkatz
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« Reply #31 on: August 23, 2015, 01:47:23 PM »

Take your time and mourn your wife.  Let things come as they will right now and give yourself some time
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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
Michael Murphy
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« Reply #32 on: August 23, 2015, 02:08:04 PM »

Your pain is there because you found a true life partner.  It will get better but  and in time the memories become more important as the wonderful person who shared your life will still be there in your memories.  Take the time to truly morn what you have lost  but remember to celebrate what you had.  Many go through life without the remarkable partner you had.  She was a substantial part of your life and I believe she will still be part of your future.  Her love helped you become the caring person you are today and that love will help you go on to be the caring person you are.
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caregivertech1
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« Reply #33 on: September 07, 2015, 09:29:39 AM »

Just learned about your loss, Dr. O. My wife and I offer the most sincere condolences possible. The dialysis community, especially this board, IS a family and has benefited immensely from you and your wife being a part.  As you know my wife's health greatly improved when you took an interest in the way were dialyzing with Nxstage. Hang in there, Dr. O. and we all hope you continue to hang around this board.
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willowtreewren
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My two beautifull granddaughters

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« Reply #34 on: September 07, 2015, 12:15:20 PM »

I, too, just learned of your heartbreak. Please take care of yourself now. Your IHD family is still here and still thinking of you.

Cherish the many lovely and loving memories you have.

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. :)
obsidianom
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« Reply #35 on: September 08, 2015, 03:22:51 PM »

Thank you all for your kind thoughts.
My wife died 3 weeks ago tonight (on a Tuesday) and every Tuesday is very painful.  I keep reliving waking up and finding her beside me cold and silent.
Even though I realize there was probably nothing that could have saved her, I keep wondering if I could have done something different that day as she felt sick all day. Dialysis was difficult as her blood pressure kept dropping . If I had known she was so ill perhaps I could have done something. In a way I feel guilty that I didn't do more.
 I have cried every day for 3 weeks and its not getting any easier.  WE were together all the time for 35 years and I just cant wrap my mind around never seeing her again. She was my whole life and for the last 10 years I took care of her almost full time.  I miss that. She gave me a reason to live.
  Sorry if I sound whiny but I have never hurt so badly as I do now.
  For all you care givers, do all you can now and appreciate you still have your loved one. Life is so precarious . It can end so quickly .  For all you on dialysis , keep taking care of yourselves. If you go you will leave behind a lot of pain in your survivors.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
PrimeTimer
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« Reply #36 on: September 08, 2015, 07:48:32 PM »

When I think of loved ones that I've lost, a lot of thoughts (and pictures and conversations) run through my mind. In some instances, death may have been avoidable and so I've lived with a lot of "what if I had done this, or done that.." Well, we've all heard it, that time heals all wounds but darn it, I just don't think that is true. At least not in all cases. I just don't. Sure, the pain lessens over time but never truly goes away. Perhaps one reason for that is because we truly want to keep people with us. Even when we can't.   
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
PrimeTimer
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« Reply #37 on: September 22, 2015, 06:49:00 PM »

Thinking of you and hoping for better days ahead...
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
BobN
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« Reply #38 on: September 23, 2015, 12:17:08 PM »

Ob, I just read this for the first time, so sorry it took so long to respond.

Please accept my deepest condolences on your loss.  You are in Donna and my thoughts and prayers.

From your writing, your wife sounded like a courageous woman and we know first hand the sacrifice that a home patient's partner has to make.  You are to be commended for that, and I'm sure you did it out of love and devotion.

You have helped many people on this great site with your timely medical advice and your sense of humor.  I hope you will continue to participate.

God Bless.
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www.bobnortham.com
Author of The ABC's of the Big D: My Life on Dialysis
Bob's Prescription for Living With Dialysis:
Follow Your Recommended Diet and Especially Watch Your Potassium, Phosphorous, and Fluid.
Stay Active - Find a Form of Exercise You Like and DO IT!!
Laugh Every Chance You Get.
big777bill
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« Reply #39 on: September 24, 2015, 09:18:13 AM »

 It grieves me to hear of your loss, I'm so sorry. There is nothing I can say to ease the pain. You will handle the pain easier with time as you get more used to it. But there is no such thing as closure. At times the pain will be just as bad as it is at first. God is good and he will get you back on track. My deepest sympathies are yours,  God Bless you and keep you safe. 
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
Charlie B53
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« Reply #40 on: January 19, 2016, 11:25:54 AM »


I am ashamed at myself for missing this thread for so long.

I hope the Dr will accept my late apology as well as my Prayers the He may come to 'terms' with his grief.  Understands how that even all the measures, effort, and care he has given for his Wife that ultimately our Maker is the final authority.  When to call each of us home.  It truly is not our will, but His will be done.

Bless the time that you had to share.  That was time well spent. 

Remember also you have time yet, use it to continue your mission.  Continue teaching, sharing your knowledge and experience with those that need yet to learn.

Continue to share your memories of Her.  Let Her continue to live in you and help yet guide you.

Take Care,

Charlie B53
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