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Author Topic: We lost my wife Patty  (Read 1111 times)
jcanavera
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« on: July 30, 2018, 10:19:53 PM »

Today my wife Patty passed today from a sepis infection.  She was on dialysis for a little over 4 years, most of it on peritoneal dialysis using a Baxter cycler.  Patty was subject to frequent UTI and yeast infections.  What complicated things for her was a history of afib which unfortunately was triggered by anti fungal drugs.  She had one from December last year that she could not clear.  The reason was that once diagnosed, her urologist noted that a bladder wash with the anti fungal dissolved into the wash could take care of the problem.  She nor any of her associates would do the procedure.  The problem was it took us 5 months to find a doc who would do the procedure.  We would make an appointments with a new doc we would wait weeks to get in, only to find out that they did not do the procedure.  When finally finding her final doc who did, we asked him why and  he noted that insurance will not pay for the procedure.  He would only be reimbursed for an office visit.  In essence he lost money on her visit for the bladder wash, but he noted he makes plenty of money in other areas of his urology practice.   The problem was it took so much time to get treated, her bladder became inflamed and eventually may have become a haven for bacteria.  She started bleeding and upon entering the hospital developed sepis which took her down after 7 days in the hospital.  Due to the high bacteria count her heart apparently began to fail and this morning her blood pressure plummeted and she lost her heart beat.  After 5 restarts with CPR, it failed again and the docs could not restart her. 

Her dialysis went well but it was the lack of urine output failed to keep the bladder flushed.  Unfortunately the lack of medical care to address the issue lead to the infection and her ultimate demise.  While dialysis was no walk in the park, it was truly the lack of medical care that took her.  What was particularly disturbing was that none of the docs would give her any help to find someone who would treat her.  It was always we don't do this procedure and we don't know who does.  It was finally her primary care who found someone, but the damage was done which lead to her demise today. 

Jack
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: July 31, 2018, 12:45:13 AM »

O Jack I'm so sorry to hear you have lost your wife.  Your story is distressing, I can't even begin to imagine how you feel.


Wishing you love and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kristina
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« Reply #2 on: July 31, 2018, 05:53:18 AM »

Hello jcanavera,
I am very sorry that you have lost your wife because of such terrible distressing medical oversights which should have been dealt with straight away as soon as they appeared and I send you my sincere condolences from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kickingandscreaming
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« Reply #3 on: July 31, 2018, 07:04:40 AM »

Oh, what a tragic story.   :(I'm so sorry for your terrible loss.  It is a lesson for all of us.  Take good care of yourself.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
MooseMom
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« Reply #4 on: July 31, 2018, 07:46:25 AM »

Dear Jack,

You've been a member of our community for quite a while now, and we have appreciated all of your posts about your wife and her PD treatments.  I know your knowledge and experiences have been helpful, and I hope that from time to time, you will return to IHD to see if you might be able to answer some queries from new members.

I know I should feel sad about your wife's story, but truly what I am left with is deep, deep anger.  I am absolutely dumbfounded that any physician would discuss for what and what not he would be reimbursed.  The very idea that money and insurance was part of the calculation is more than merely disturbing. 

I am going to stop here before my anger makes me say something I might regret.

I am so very sorry for your loss and also for the circumstances surrounding it.
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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."
GA_DAWG
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« Reply #5 on: July 31, 2018, 12:42:57 PM »

So sorry to hear this. It is tragic enough to lose a loved one, but to know it was because of ineptitude in our system makes it exponentially worse. It makes you wonder where the disconnect is. Is it the doctors, the insurance companies, the politicians who allow it, the hospitals? In the end though, it always comes back to one thing, greed.
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SooMK
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« Reply #6 on: July 31, 2018, 01:39:38 PM »

I am so sorry. This should never have happened.
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SooMK
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Transplant April 2014
Jean
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« Reply #7 on: July 31, 2018, 04:17:16 PM »


My daughter is now facing somewhat the same thing. She had been hospitalized at one hospital for about 7 days, was released, went to see her specialist and immediately admitted again, altho to another hospital.  Both of them said she had a massive infection in her one breast. This time, she went back to her specialist who took a biopsy and sure enough, it is Cancer, not only her one breast will go, but both of them, plus, it is in her lymph nodes now. Had they found it the first time she was hospitalized chances are it would not have gone to her lymph nodes. My daughter and her partner are suing the two first hospitals but if this goes too far, no amount of money will bring her back. I and all of my large family are all devastated. It is all I can do to function. I do know how you feel.
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One day at a time, thats all I can do.
Michael Murphy
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« Reply #8 on: July 31, 2018, 04:36:30 PM »

This is why I belong to large doctor ran medical  group.  The medical records are seen by every doctor who treats you and every year they thin the herd.
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Charlie B53
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« Reply #9 on: August 01, 2018, 08:03:01 PM »


Deepest condolences on the loss of your Wife.

Terribly sad how the medical system failed her.

There are simply no words to express the grief.
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iolaire
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« Reply #10 on: August 01, 2018, 09:54:20 PM »

Sorry for your loss.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Rerun
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Going through life tied to a chair!

« Reply #11 on: August 02, 2018, 06:10:24 AM »

I'm so sorry for your loss.  I thought we had "The Best Medical Care in the World".  We still have "Affordable Health Care Act"   Mmmm Hmmmm Affordable for them.  They keep THEIR costs down.

Again I'm so sorry.
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Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #12 on: August 02, 2018, 11:06:53 AM »

Oh, Jack, I am truly sorry for your loss, and the grief and anger you must now endure. Thanks for sharing this horror here - I hope it may help another dialysis patient facing a similar situation.
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #13 on: August 04, 2018, 12:43:10 AM »

My sympathies to you.

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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
kitkatz
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« Reply #14 on: August 05, 2018, 04:25:21 PM »

I hope the universe will help you and your family during your time of grief.  :grouphug; :grouphug;
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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
PrimeTimer
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« Reply #15 on: August 08, 2018, 11:05:14 PM »

You have our condolences. So very sorry to read this. Terrible shame. Hope you find peace with your family.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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