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Author Topic: Sleeping Pills post transplant  (Read 17626 times)
Chris
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« on: July 09, 2008, 01:41:22 AM »

Anyone using sleeping pills post transplant?

I just can't fall asleep at night until after 5 am then just sleep for a couple hours, mostly due to needing to get things done or go somewhere. A couple months post transplant I didn't fall asleep at all for 5 days and the center put me on  Ambien. Not sure if it was from caffeine withdrawls, but it didn't work that well and switched to something else I can't remember. They gave me something in the hospital recently, but forgot to ask what it was and for a prescription.

So what do you use or have used and what is your experience with sleeping pills? I know that they are a short term solution till the body adjust, but also thinking I am a natural night person. It's 3:41 am and I am wide awake, if I lie down, I will be fidgity
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Romona
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« Reply #1 on: July 09, 2008, 04:49:00 AM »

I tried Sonata and didn't have good results. Ativan worked ok.  Since I was diagnosed with narcolepsy and was given something to keep me alert during the day, I was sleeping better at night. This week I have had trouble. It is like someone is randomly poking me with a pin.
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Chris
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« Reply #2 on: July 09, 2008, 05:09:44 AM »

I haven't been to sleep yet and now I can't. Was going to get my monthly labs done, but forgot what time I took my pills. I haven't tried Ativan, but no idea if I can take that due to med reaction.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
pelagia
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« Reply #3 on: July 09, 2008, 06:00:44 AM »

You might be a night person. My husband doesn't seem to need all that much sleep - gets by on 6 hours a night just fine.  He always has trouble getting back into any kind of a sleep routine after he's been in the hospital. He took ambien for a short time after the transplant, but I don't think he's taken any in a few of weeks now.

Are you doing the things they typically recommend for enhancing ability to sleep?  No caffeine in afternoon/evening; get some exercise, but not strenuous late in the day; don't watch TV in bed; have a routine
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
keith
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« Reply #4 on: July 09, 2008, 06:06:30 AM »

i was told by my transplant team that i can take Tylenol pm
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rsood2004
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Me and my baby Kyle

« Reply #5 on: July 09, 2008, 06:36:11 AM »

I'm pre-transplant and never knew not sleeping was a side effect of dialysis! I used to be able to fall asleep at the drop of a hat anywhere(got into trouble for that a time or two) :shy; My doc gave ambien 5mg and it works for the most part. Now that I am not working I figure I will just sleep during the day tomorrow cuz all the 80's shows are on at 1-5 am! Fresh Prince, Home Improvement, Golden Girls, Roseanne etc. Love that crap no thinking needed. Ha ha tee hee
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Laurie
“I am not afraid…I was born to do this.”
“There is nothing wrong with being afraid---but there is nothing more wrong than allowing that to be your master.”
“What we do for ourselves dies with us. What we do for others and the world remains and is immortal.”-Joan of Arc
stauffenberg
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« Reply #6 on: July 09, 2008, 11:32:05 AM »

Chris, what is your prednisone dose?  A continuing high dose of prednisone is the most likely cause of your difficulty sleeping.
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Chris
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« Reply #7 on: July 09, 2008, 06:28:04 PM »

I'm not on Prednisone and never was. Have been on CellCept and Prograf all this time.

I didn't go to sleep yet today, but maybe I will later due to frustration. Some idiot (cleanest word I can think of) hit my vehicle and took off without leaving a not or anything. So my pride and joy now has a dent in an odd area and scratches from right rear passenger door to about half way of the pick up bed. I'm so pist off about this. Now I have to come up with my deductable to get my vehicle fixed and so far I may have to use a portion of my student loan to do that. I would like to keep my vehicle nice looking for more than one year, but I swear this blue color attracts people to hit me. It is now my bad luck color if I get another vehicle.
I don't feel tired yet either, feel like punching someone for their ..........looking for a word that fits well   :rant; :boxing; : :banghead; :banghead; boxing; :Kit n Stik; :Kit n Stik; :Kit n Stik;







EDITED:Fixed smiley tag errors-kitkatz,moderator
« Last Edit: July 09, 2008, 08:20:30 PM by kitkatz » Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
stauffenberg
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« Reply #8 on: July 10, 2008, 11:23:58 AM »

There was a study once conducted which showed that green cars are involved in accidents at a higher rate than any other color of car.  The theory was that since green is a soothing color, it lulls other drivers into ignoring it.  My car is red.

Something to keep in mind regarding sleeping pills post-transplant is to avoid the over-the-counter herbal remedy, St. John's Wort.  It was found some years ago to cause the immunosuppression in transplant recipients to fail, with disastrous consequences for their graft.
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paris
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« Reply #9 on: July 10, 2008, 12:00:36 PM »

Chris, I am sorry about the hit and run.  Some people have no integrity!   We had a red car and I felt it was like waving a red flag in front of a bull---everyone aimed straight for it.  We even had horses "nibble" on it while in the Smoky Mountains.  Horses teeth leave big scratches!  Did they think it was an apple? :rofl;   No more red cars for me.

I hate that you can't sleep. It is hard not to envy those who just fall asleep and then wake hours later.  I started taking Ambien a couple of years ago; just occasionally.  Now, it doesn't help. Dr. says to increase the dosage.  I sleep a couple of hours and then watch tv -- Oprah is on at 3 am.  I am finding interesting programs on at odd hours.  Any one else hooked on "Deadliest Catch" and " Ice Roads"?   :rofl;   I hope you find some solution. :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
rsood2004
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Me and my baby Kyle

« Reply #10 on: July 10, 2008, 12:09:56 PM »

Paris, Deadliest catch and ice roads r two of my favs! We don't even leave the house on the nite's they r on!
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Laurie
“I am not afraid…I was born to do this.”
“There is nothing wrong with being afraid---but there is nothing more wrong than allowing that to be your master.”
“What we do for ourselves dies with us. What we do for others and the world remains and is immortal.”-Joan of Arc
angela515
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« Reply #11 on: July 10, 2008, 12:47:18 PM »

I take Ambien 10mg. However, I have been taking them for like 5 years, so now my body is kind of becoming used to the dose, so sometimes I have to take more than 10mg, I am waiting for Ambien CR to be approved by my insurance.

Ambien has worked wonderfully for the last 5 years and I love it. I have tried Lunesta before, that don't work for me, and even if it did I would not take it because of the side effect of a wierd metallic taste in your mouth that lasts the whole next day so nothing tastes good at all.

:)
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Chris
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« Reply #12 on: July 10, 2008, 09:16:59 PM »

I forgot to ask for something with the internal doc I saw at my tx center due to going over all the test performed last week, going over what  the bone specialist doctor told me, being referrred to a cardiologist due to caratoid artery scan and to get an ok for knee surgery, but did get something for pain. Luickily I got a sameday appt with the cardiologist there, who ordered more test and a monitoring device. Then went to neurologist and mentioned that I forgot to ask my internal doc for something, so he prescribed something that I haven't looked at yet. However he didn't know if it was tolerable with my meds and told me to ask my pharmacist. Not much confidence there about this prescription. So I call my internal doc back to ask her. I was told to comeback up and wait till a nurse could talk to her after she saw her patient. Get up there and no one talked to the nurse and the nurse comes out to ask what I was looking for. She eventually comes back to tell me the doc won't prescribe anymore meds to me due o all the new ones I have been given today and that the pain killer would help. Problem, neve went to the pharmacy on way home. It was getting dark and it was about to down pour, which it did a few minutes after walking inside. Wish I had it though because I woke up in more pain today and I don't know what I did to cause it since I did my usually exercises at physical therapy. Skipping physical therapy sounds like a good idea right now so I can get my meds.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Robby712
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« Reply #13 on: July 12, 2008, 04:56:19 PM »

I've been taking 10mg Ambien for a year or two now.  Problem is, when I take them more than a couple nights in a row it doesn't really work and I become more hyper than tired.  (also I've experienced the full range of effects from increased appetite & extroversion to Hallucinations & insomnia rebound)...waiting for CR to be approved myself...don't pop the pill to much anymore and when I do it's usually one and a half or two.

Otherwise I usually don't fight it.  If I lay there for 30 minutes and know I'm not going to go to sleep I usually get up and read a book or watch TV or play around on the internet until I get tired...sometimes it takes FOREVER.  I'm a teacher and in the summer I don't have anything to do so it's not like I'm wearing myself out at work anymore...so the 5am-12pm thing happens quite often.

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Chris
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« Reply #14 on: July 12, 2008, 09:04:16 PM »

I was prescribed Prosom for insomnia and Norco for pain. Trying them both together tonight. Norco didn't start to help till 5 am this morning when I took it at 10 pm the night before, Friday. Couldn't sleep much, just gave me a  buzzed feeling like I had a couple beers or something. Although that feeling wasn't bad especially throughout the day today, just laid in bed after having more lab work done thru the morning.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
angela515
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« Reply #15 on: July 14, 2008, 07:15:49 PM »

I've been taking 10mg Ambien for a year or two now.  Problem is, when I take them more than a couple nights in a row it doesn't really work and I become more hyper than tired.  (also I've experienced the full range of effects from increased appetite & extroversion to Hallucinations & insomnia rebound)...waiting for CR to be approved myself...don't pop the pill to much anymore and when I do it's usually one and a half or two.

Otherwise I usually don't fight it.  If I lay there for 30 minutes and know I'm not going to go to sleep I usually get up and read a book or watch TV or play around on the internet until I get tired...sometimes it takes FOREVER.  I'm a teacher and in the summer I don't have anything to do so it's not like I'm wearing myself out at work anymore...so the 5am-12pm thing happens quite often.



I have experienced all it's side effects as well. For me I experienced them all from day one, all the way to now. I get the increased appetite, which sucks now because my immunosuppresives both also increase my appetite... which then in turn really makes losing weight for me an impossible to reach goal. I get hallucinations but not very often at all. I also get insomnia rebound... which sucks since I take more than the dose on the bottle nowadays so it's not like I can just get it refilled and not have to rebound.. I have to go weeks before I can refill and once I run out, I already know the next few days to a week I won't be sleeping. I am a single mommy and so I am hating summer when I run out of my pills because I can't just chill and do nothing, I have to be full alert and run around all day. :(

I also experience amnesia. If I am on the phone with someone before my Ambien kicks in, I will wake up with the phone either in my hand or in my bed somewhere, the TV on and lamp on, glasses on... and whoever I was talking to will tell me I started talking funny and not making sense, but I don't ever remember doing that. A few month's ago on a Saturday morning/afternoon I didn't just forget what happened while talking to someone, I woke up to go shopping at Walmart as me and my mom do every Saturday and I slept all the way to the store, went my own way and shopped as I always do, slept all the way home.. then asked my mother to please watch my kids because I needed to lay down and I woke up at 5:00pm. When I woke up at 5 I did not remember waking up that morning, I didn't remember going to Walmart or sleeping in the car, and I didn't remember what I bought or how much I spent and had to find my receipt and see what I bought and what I spent. That was bad, but it was my own fault because the night before I took more than I usually do because I hadn't been able to sleep but a few hours the 3 days before that since I didn't take my Ambien for those 3 nights because I needed to get up very early and went to bed very late due to stuff going on and you can't take your Ambien if your going to be getting a few hours sleep. So, I learned my lesson not to take how many I did again.

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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Robby712
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« Reply #16 on: July 14, 2008, 10:35:01 PM »

Yep Angela, after experiencing the effects of ambien I've often wondered how the heck it is actually legal/safe to take.  I wonder if 50 years from now we'll look back and say 'Wow, remember when everybody took that?  We were crazy!"  Much like when you used to be able to obtain opium over the counter or when Coca-Cola used to have trace amounts of actual cocaine in it (I still think it was a mistake changing the recipe)

Oh well.  As long the profit from selling it far outweighs the price paid in lawsuits from accidents it'll be available for all to enjoy!
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Chris
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« Reply #17 on: July 15, 2008, 05:39:44 PM »

Well taking the sleeping pill and pain killer definitely now makes me sleep. Problem is it makes me sleep pretty much the next day too. I have been sleeping till 1 pm and when I do get up I am still tired and fall asleep if I sit down. Pain killer doesn't make the pain go totally away either. I tried staggering the pills by taking the sleeping pill earlier than the pain killer, but still was sleeping till 2 pm. Thinking about taking pain med sooner and then the sleeping pill. I took the sleeping pill and I get drowsy within 30 minutes. So it is good and bad that I am taking these two meds. Just get my knee surgery done and over with and stop screwing around with all these darn test! >:( :rant;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
angela515
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« Reply #18 on: July 19, 2008, 04:33:37 PM »

Love my pain killers and love my sleeping pills....  :bow; To all who invented them.  :beer1;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Chris
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« Reply #19 on: July 19, 2008, 05:06:53 PM »

I should have taken them last night. I was up till 4 am lying in bed. The computer was off too!
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Romona
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« Reply #20 on: July 19, 2008, 07:16:58 PM »

Can you split the pill? Some of the stuff I took they told me to try half if a whole one was too much. Some pills can't be cut because of the way it is absorbed.
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Chris
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« Reply #21 on: July 19, 2008, 07:47:10 PM »

Can you split the pill? Some of the stuff I took they told me to try half if a whole one was too much. Some pills can't be cut because of the way it is absorbed.

Unfortunately no on the sleeping pills. They are only 1mg and very small. They are like a mini sweet tart candy shape. My pain killers could be easily split in half since it has a break line.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Romona
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« Reply #22 on: July 20, 2008, 07:34:42 AM »

I hope you find a happy medium. It stinks to be tired.
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Robby712
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« Reply #23 on: July 20, 2008, 12:32:50 PM »

I need to pester my neph to get some of these pain pills you speak of.  I've been having lower back pain lately (better since the chiro, but still not gone) and it keeps me awake at nights even if I do take an ambien...

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Chris
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« Reply #24 on: July 20, 2008, 04:18:22 PM »

Well I complained to my local gp doc about my back pain who then ordered an MRI. It showed I have 2 herniated disk and a stress fracture in the lower vertabrae. Had other test done and found out I have osteomalacia, which also doesn't help for pain. Bu last night I forgot to take my sleeping pill and even with the pain med, I still stayed up to 5 am. The 2 together knock me out all night and part of the day long. If the pain has been there for more than 2 weeks tell the doc to have test done, MRI's, bone scan, and orgot what else they did seperate from my knee problem.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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