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Author Topic: This Isn't Life  (Read 9909 times)
Simon Dog
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« Reply #25 on: March 04, 2018, 11:00:24 PM »

My dog was coming downstairs with me every night after wife went to bed.   Was in a 3 car accident yesterday - minor damage to my car, other two cars almost certainly totaled,, caused by 85 year old woman headed westbound veer into eastbound lane.  We both have some pain; wife's is far worse than mine.

That dog will not leave her after she goes to bed.     This must be part of the ancient dog/human compact.
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Rerun
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Going through life tied to a chair!

« Reply #26 on: March 05, 2018, 09:28:28 PM »

SD, your dog knows when someone needs more TLC.  Fur babies are the best.

Kate07,  Maybe you can help me.  I am going blind.  I just can't imagine what I'm going to do if I really go totally blind.  My eyes seem worse everyday.  I have Glaucoma.  Do they have homes for blind people?  I know I could not live by myself.  Like how are you understanding our posts?  Does your computer read it to you?  I can't stand that monotone computer voice that Steven Hawking has.  or Steve Gleason.  "NO WHITE FLAGS"!
Well I have a white flag.  If I go blind I'm Quitting dialysis.  I know God won't put you through more than you can handle... but with Dialysis we get to choose.

Glad you joined us.  Let us know how you are doing.   
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cassandra
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When all else fails run in circles, shout loudly

« Reply #27 on: March 06, 2018, 12:18:35 AM »

Hi Rerun is medical marihuana available where you live? I've always understood cannabis to be able to halt the progression of glaucoma.


Love, luck, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Simon Dog
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« Reply #28 on: March 06, 2018, 07:17:14 AM »

There are numerous treatments for glaucoma.  My 90 year old MIL has had a severe case for years and, in addition to drops, she has a drain in one eye to relieve pressure.    Get thee to the best specialist you can - not just the local guy who can treat it.   I am near Boston so I use Mass Eye & Ear - a huge specialty hospital that is way above any local level MD.
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Charlie B53
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« Reply #29 on: March 06, 2018, 07:35:53 AM »


My Wife has Diabetic eye problems PLUS Glaucoma.  She has had numerous eye procedures to remove the cloudiness from 'bleeds', multiple lasar treatments to reduce the blood vein growth.  I can't understand how she manages to sit still and let the Dr's stick those needles into her eyes.  Both of them.

For a while I was getting pot and ordered a bag of the large empty pill capsules.  I ground the pot in one of my coffee grinders into powder, filled the capsules and gave her three a day spaced out throughout the day/night.  She never seemed to feel any effects of the pot, never got ''High'.

She asked one of her eye Dr's about it and was told it couldn't hurt anything but due to the laws in this state it was still illegal.  No medical marijuana laws here yet.

The glaucoma finally got bad enough she had to have a drain placed in her right eye.  It works perfectly.  An added benefit is the pressure in her left eye has also reduced.  Seems there is some symbiotic action, improvement on the one causes improvement on the other.  Dr's don't know why that is.

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Rerun
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Going through life tied to a chair!

« Reply #30 on: March 06, 2018, 08:11:02 AM »

I've had the drain placed and it didn't do anything.  I've had the laser and nothing.  Finally they did a new procedure and it stopped the progression but too little too late.  Somedays are worse than others.
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Riki
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« Reply #31 on: March 06, 2018, 12:20:46 PM »

Rerun, I've been legally blind since I was 17 (I'll be 40 in May *yay me*), and not being able to see very well has not stopped me at all.  I have retinal degeneration, and my field of vision geets smaller every day.  I've found a lot of ways to adapt to the world around me.  I walk with a white cane, and I did try a few years ago to get a guide dog, but I got sick and put it on hold.  I have accepted the fact that one day, I will not be able to see anything, but I refuse to let it stop me.  I have learned how to listen to the television, and I use a lot of dictation and text to speech software on my computer and phone.  That being said, I don't think I could live on my own, and I honestly don't know what I'd do if anything happened to my mom, but I don't know if I'd stop dialysis because I didn't have my eyesight.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Charlie B53
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« Reply #32 on: March 06, 2018, 06:00:43 PM »


Wow Rerun,, I am surprised to hear that the drain did not work for you.  I imagine that there is some % of people that fail to benefit from it but again I would have thought that % to be quite small.

Wife does already have permanent severe vision loss as I suspect her first eye specialist waited too long, allowed the pressure to get too high before referring Wife to the other Dr for the drain.  Bordering on malpractice but that would just be a whole can of worms.  And the only ones that make any money out of that are the attorneys.  It wouldn't help us any.

Wife is about to get another type of 'drain'.  This one from her brain to her abdomen.  Water on the brain, see if I can spell it right, hydrenchepelilltus.  Or something near that.  It really makes her strange.  Appt for more testing on the 15, then we will know what and when.  Fingers crossed and LOTS of Prayers.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #33 on: March 07, 2018, 12:30:42 PM »

Hi Charlie water on the brain is Hydrocephalus. I had that after a brain haemorrhage when 18, had/have a drain going to my heart sack. I hope your wife gets the drain soon.


Love, luck 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
GA_DAWG
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« Reply #34 on: March 08, 2018, 09:32:36 AM »

Riki, don't know if it would help in any specific case, but I read recently of doctors being able to clone new eyes from stem cells. Also saw a Cathoolic priest talking about having it done.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #35 on: March 08, 2018, 09:42:57 AM »

For those worried about blindness: I saw a documentary about ten years ago about the development of a real life Geordie Visor. This is basically a pair of electronic glasses that are wired up to your brain to help the blind to see. At the point in time that the documentary was made they were almost useless (a person using them would still see badly enough to be legally blind). They simply split the area of vision into six rectangles which were either dark or light. So if someone walked across in front of you, you would see a dark shadow move across your vision. However the scientists reckoned it would take about twenty years to develop a pair of glasses that gave the wearer good vision. As I said, that documentary was about ten years ago, so if you can hang on another ten years they should be here.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Riki
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« Reply #36 on: March 09, 2018, 08:26:48 AM »

Riki, don't know if it would help in any specific case, but I read recently of doctors being able to clone new eyes from stem cells. Also saw a Cathoolic priest talking about having it done.

My eyes are fine. It's the retinas that are degenerating.. *G*
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Whamo
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« Reply #37 on: March 19, 2018, 12:46:01 PM »

 :secret;  Katie,  I get it.  I've been there.  I was so constipated for awhile I wanted to die.  When I was FOS from binders my belly got really big during PD treatments and I wanted to end it all.  After two years of hemo and four of PD I've learned to adapt, and I'm still learning.  My favorite protein meal is egg white powder and blueberries topped with whipped cream.   I just started taking 5,000 units of vit D3.  I am eating more fiber in my diet (fruits and veges) instead of grains.  I drink water with bubbles in it instead of soda.  I do Jane Fonda's low impact aerobics level one (free on youtube).  I also have learned to like my new PD machine.  I just ordered some niacin and folic acid.  I may be on the machine ten hours a night, and almost an hour during the day, but I still enjoy the morning sun, a hug from my wife (even though she's in Italy now on vacation), and watching my stock portfolio.  I do miss sex, surfing, and going out at night.   
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Charlie B53
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« Reply #38 on: March 20, 2018, 05:25:41 AM »

Riki, don't know if it would help in any specific case, but I read recently of doctors being able to clone new eyes from stem cells. Also saw a Cathoolic priest talking about having it done.

My eyes are fine. It's the retinas that are degenerating.. *G*

Wife has diabetic eye problems and glucoma.  Lost at least 80% of her right eye already.  I am Praying once the water on the brain thing is resolved with a drain that her left eye will clear back to near normal.  Sucks waiting so long to get anything done.  You'd think I was still in the Army.  That old "Hurry up and Wait".
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irvinsen5
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« Reply #39 on: May 17, 2018, 07:18:44 PM »

Good luck! You're in my thoughts.
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