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Author Topic: Help! a stroke has entered the picture!  (Read 6046 times)
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our community

« on: September 18, 2009, 09:47:00 AM »

Yesterday, Victor had a stroke and I was told that this event will likely eliminate him from the transplant program.  His limbs were not affected however there is cognition and swallowing issues.
     This is very early in the healing process and I am aware that many of the paramedical fields can do amazing things.  After having a head injury I can personallly vouch for that.
     My greatest concern is for Victor's future.  I was fully prepared to help manage his dialysis routine however this new development is outside my box. He has a impaired gag reflex and this translates to him not being able to drink water or chew foods.  He is able to eat pureed food only.  The preparation of this is something I would not be able to do and it cannot be taken lightly as he is very much underweight as it is.
     What do I do from here - any suggestions, strategies etc. would be very much appreciated.
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This will be me...... Next spring.... I earned it.

« Reply #1 on: September 18, 2009, 09:57:08 AM »

Sorry to hear about the stroke.   I know you have been working hard towards transplant and I have been inspired with your progress.    I don't have answers but I have hope for you both


IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
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« Reply #2 on: September 18, 2009, 10:04:34 AM »

My heart and prayers go out to you and Victor

-Christmas '03 get news of esrd
-June '08 start hemo
-Thanksgiving '08 pd surg
-Feb '09 Stop hemo and manual exchanges
... start cycler
Setp 3 '09 On UNOS list (27th b day)
Dec 09 peritonitis
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« Reply #3 on: September 18, 2009, 10:28:09 AM »

I am so sorry to read this.  You have been working so hard for his transplant.  I will keep you both in my thoughts.   :cuddle;

It's not what you gather, but what you scatter that tells what kind of life you have lived.
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« Reply #4 on: September 18, 2009, 11:00:02 AM »

Oh dear...

What a dreadful struggle for you and Victor....

I don't know what advice to offer you, but could the dietitian help with advice on food, and how to give it to Victor safely.... Could PEG feeding (tube into his abdomen) be a temporary option until he gets stronger... At least he'll get all of the nutrients he needs, and it's very easy enough to administer with a little instruction...

Please know that I'm thinking of and praying for you and Victor...

May God bless and protect you both....



Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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Might as well smile

« Reply #5 on: September 18, 2009, 11:02:52 AM »

So sorry to hear this.  I've no advice but send hugs and all best wishes.  :grouphug;

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
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My two beautifull granddaughters

« Reply #6 on: September 18, 2009, 11:20:06 AM »

So sorry to hear this.  :'(

I'm sending hugs and hope for some help with your situation. You have been working so hard toward helping Victor.

 :grouphug; :grouphug; :grouphug;

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. :)
Bill Peckham
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« Reply #7 on: September 18, 2009, 05:28:07 PM »

One thing we all know is that connecting with people going through similar challenges makes a huge difference. My Mom had a stroke about a year ago - I was her care partner for about two months. She didn't have much in the way of impact from the whole thing, aside from what was caused by the bed rest, but during that period I saw there was a large community online of people dealing with stroke.

After my initial look I didn't end up connecting but I'm sure the information is there. I wish I could give you more - I deleted the folder of bookmarks.

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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