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Charlie B53
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« Reply #25 on: June 08, 2016, 07:49:29 AM »


Met the the Detox Dr Pharmacist Lady, we had a long visit and discussed many things.   Symptoms are getting better but it is still very difficult to go to sleep.   Addition of benadril equiv and meletonin may be some small benefit.  I am trying it and will know better in a few more nights.

I was given a choice whether to continue decreasing in steps taking a month at each step.  I expect each one to be much like this firstone.  Hopefully the OTC's will help with sleep as that is the worst part for me, daytime I can try to stay busy, sweat it out and distract myself.   The other option she gave me was to cut it all off all at once.  Total immediate withdrawal could be disturbingly hard.  There is a med for that, I forgot the name, started with an 'S' and can only be prescribed by a psychiatrist.  She has already talked to him, he is willing to see me and write the prescription after he evaluates me.    I said I would pass.  Stay with the decreasing doses and just deal with it as I am doing now.

It's a bitch, but I will get through it.

Had a gout attack that lasted most of the week which gave an added thrill to my crankiness.  Much better this morning.  Thankfully.

I so hope any of you regularly taking pain meds to watch your use carefully.  Try to NOT use if at all possible as dependence sneaks up on you.  Granted we feel that we are using them responsibly, and we are, but the addiction is still there.   And it sure is a shock when that day comes your Dr says you have to cut back.

Time to disconnect from my Cycler, weight, do BP's and fill out my log book.

Take Care,

Charlie B53
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SutureSelf
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Hey there!

« Reply #26 on: June 08, 2016, 04:51:14 PM »


Met the the Detox Dr Pharmacist Lady, we had a long visit and discussed many things.   Symptoms are getting better but it is still very difficult to go to sleep.   Addition of benadril equiv and meletonin may be some small benefit.  I am trying it and will know better in a few more nights.

I was given a choice whether to continue decreasing in steps taking a month at each step.  I expect each one to be much like this firstone.  Hopefully the OTC's will help with sleep as that is the worst part for me, daytime I can try to stay busy, sweat it out and distract myself.   The other option she gave me was to cut it all off all at once.  Total immediate withdrawal could be disturbingly hard.  There is a med for that, I forgot the name, started with an 'S' and can only be prescribed by a psychiatrist.  She has already talked to him, he is willing to see me and write the prescription after he evaluates me.    I said I would pass.  Stay with the decreasing doses and just deal with it as I am doing now.

It's a bitch, but I will get through it.

Had a gout attack that lasted most of the week which gave an added thrill to my crankiness.  Much better this morning.  Thankfully.

I so hope any of you regularly taking pain meds to watch your use carefully.  Try to NOT use if at all possible as dependence sneaks up on you.  Granted we feel that we are using them responsibly, and we are, but the addiction is still there.   And it sure is a shock when that day comes your Dr says you have to cut back.

Time to disconnect from my Cycler, weight, do BP's and fill out my log book.

Take Care,

Charlie B53

Just as with palliative care and hospice care,  there is confusion between being dependent on a medication to being addicted.   Dependence and addiction are two very different things. They should not be confused with each other as dependence for a prescribed drug doesn’t necessitate that a person needs to seek help but makes a person function better. However, an addiction of any kind needs a person to seek help and get treated for it.

Difference Between Dependence and Addiction
• Categorized under Health | Difference Between Dependence and Addiction

Dependence vs Addiction

Addiction or dependence to anything is not something any person wants. Due to medical reasons many people have to take drugs which are necessary for better health and the functioning of their bodies. Their bodies get dependent on the prescribed drugs, but it is not necessary that the dependence changes into addiction.

Dependence
Dependence of the body on a drug is a physical state. Dependence can be identified by the body showing withdrawal symptoms when the prescribed drug that is being used for long-term treatment is abruptly stopped or decreased. It is the way the body shows that it has gotten adapted to the intake of some drug. If the body does not receive it anymore, it shows negative reactions or consequences. These can happen with blood pressure medications, diabetes medications, painkillers, etc.

The physical withdrawal symptoms get controlled after a time. Dependence on drugs does not cause any negative effect on a person’s life or livelihood. In contrast, the usage of such drugs, which may be necessary for their well-being, the person’s life is restored and improved.

Addiction
Addiction is a physical as well as a psychological state or dependence. Physical addiction is treatable by detoxification, but the psychological addiction is far more difficult to treat and is an ongoing struggle for the person addicted. It is a condition where the person is compelled to satisfy his needs regardless of the negative consequences.

It has been observed that some people are predisposed to addiction or vulnerable to addiction due to social influence, biological, and psychological reasons. Due to an addiction, not only the body but also the person’s productivity is reduced. The social functioning of the person is disturbed; total livelihood of a person is affected by being addicted to a drug or other substances.

Addiction can be identified by:

A person’s drug-seeking habits or cravings for other addictive substances.
Preoccupation with trying to get the abusive substance even though the body is being harmed by it.
Misusing the substance for pleasure or intoxication.
Withdrawal symptoms shown after stopping the intake.
Disturbed normal life and functioning.

Summary:

1.Dependence on a medication or drug is a physical state; addiction on a medication or other substances is a physical as well as psychological state.
2.Physical dependence may decrease after some time; addiction keeps getting worse in the absence of treatment.
3.Dependence on a drug is sometimes necessary for the improved functioning of a person. For example, medication for a blood pressure patient makes his life better with the medication. Addiction is the abuse of drugs and other substances, and it makes the life worse as the person doesn’t stop taking them even if their life is being affected negatively.
4.Addiction needs to be treated; dependence does not require treatment.

http://www.differencebetween.net/science/health/difference-between-dependence-and-addiction/

Maybe you have increased dosage to experience a high as opposed to therapeutic reasons and have become addicted to the point of your pain meds negatively affecting your life.  You said your wife decided to go stay with your daughter.  You say she bailed on you - she might say she's taking care of herself and getting away from a bad situation.  Plus, you mentioned loading up on sweets, but "forgetting" to take your insulin. Not good signs. 

Taking care of the physical symptoms without treating the psychological aspects is only getting half treatment and doesn't resolve underlying issues.  Counseling would be good.  At the least, consider attending a few Narcotics Anonymous meetings for perspective and to help get through the rough spots.   And again, a palliative care specialist is trained to determine the difference between dependence/addiction and to help patients come up with alternatives to help.  In many situations it doesn't have to be all or nothing to lead a less physically painful, comfortable life. 

Good article from the NY Times:

http://www.nytimes.com/2016/06/07/health/opioid-limits-older-patients-pain.html?action=click&contentCollection=health%C2%AEion=rank&module=package&version=highlights&contentPlacement&_r=1

BTW - the "S" drug the MD mentioned - probably either Suboxone or Subutex

http://mentalhealthdaily.com/2015/06/11/subutex-vs-suboxone-whats-the-difference/

http://www.treatment4addiction.com/treatment/drug/buprenorphine/suboxone-vs-subutex/
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I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
3.0 calcium/2.0 potassium bath
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« Reply #27 on: June 09, 2016, 07:15:39 PM »

Glad you are staying strong and keeping firm on this, Charlie B53! Sounds rough but hopefully coming on here and putting it all down into words helps. I use to write letters but would never actually send them. A doctor told me that was an excellent idea, putting things down in writing like that, even if I didn't mail them. Guess it was good getting stuff out whether anybody knew about it or not. 

Good thing you have plenty to keep busy with. Don't forget to relax a little, too. I know this sounds silly but one way I relax and get my mind off things and all without having to leave home, is watching birds out a window with a pair of small binoculars. Some birds are interesting and when you learn their habits, they're antics are pretty amusing. Even if only for a few minutes I find it to be a great escape. Living in an apartment tho I have to be careful when I bring out the binoculars...don't want neighbors thinking I am spying on them.     :o
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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.
Charlie B53
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« Reply #28 on: June 09, 2016, 08:46:06 PM »



I haven't been 'high' since Sept 1981.   Period.

I average maybe one beer a year.    I don't care for alcohol except for cleaning parts or fuel.

Dau lives 90 miles away, her and her Mother talk on the phone at LEAST once a day.   

Wife is off work for the summer from school, Dau is also on her summer break, she drives a special ed school bus.   They spend days together EVERY summer.

I am dependant on meds for pain control due to chronic pain caused by permanent muscle and bone damage, injuries.

Didn't I say, I DON'T get high.  Narcotics do not relieve pain, they merely make you so stupid you no longer care about the pain.   The synthetics tramadol and fentenyal do NOT give me any high, but they do make a significant reduction in percieved pain.

A fresh bump, cut, scrape, hurts, so it isn't as if I am numbed.  I have full control, that I never had with the narcotics.

I cannot explain how, but it does make a huge difference.
But Thank You for the very good post spelling out the huge difference between addiction and dependence.    I have become dependent, and the Dr wants to reduce that to a minimal dose.  This will take time, and I will deal with the withdrawal symptoms until I become adjusted to it.

I don't really have any choice.
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kristina
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« Reply #29 on: June 10, 2016, 12:52:45 PM »

Hello Charlie,
I feel very lucky that I have never experienced any addiction etc. and I can only imagine what a difficult task you have taken on,
to first admit to the addiction and then to face it and rigorosly approach to "get rid" of the problem... 
... and you are congratulated for your bravery to face it and to "get rid" of it ...
... and I send you my wholehearted good-luck-wishes
from Kristina. :grouphug;
« Last Edit: June 10, 2016, 12:57:10 PM by kristina » Logged

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« Reply #30 on: June 10, 2016, 01:13:25 PM »

Quote
I don't really have any choice.
Sure you do.   You could go see da boyz in de hood and get a fix.
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Charlie B53
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« Reply #31 on: June 10, 2016, 02:59:43 PM »


I never thought of myself as being 'addicted'.   I was 'medicated' by my Dr to help control my pain and remain fully functional, without any 'high' or fuzziness that I used to get when Dr prescribed traditional narcotic pain meds.   

I have simply become 'dependent' on the synthetic meds to control chronic pain.

Dr says they have changed standards and no longer want anyone to be using at my current level.  Ergo, Detox.  Once my dependency has been reduced to a minimal level the pain relief will be effective again.  It will just take time to readjust.   Granted,, I will have 'some' symptoms, not just from the drug withdrawal, but the increase in percieved pain, until I become ?? accustomed or aclimitized to my 'new' status// not a good word but maybe gets the point across.

I thought I was OK before.  Granted, maybe I was getting too used to that level of medication and was ready for a small increase to relieve my constant pain.   But it was still at a functional level.  With limitations on movement, it hurts.  A couple of joints, and muscles, are trashed.  Dr's want to rebuild my R knee and replace the L ankle.  I elect not to.   They still get me around, and have done so since I broke them in 74.   They are mine, I intend to keep them.  I no longer leap tall buildings in a single bound, and I am not faster than a speeding bullet, anymore.  I once was stupid enough to think I could, almost.  I was much younger then.   I've put on a few pounds since then.


I will get by.  I always have, so far.   It just takes me a little longer cause I am slower than most, now.

So I am 'dependent'.  It can, and will be controlled.   It's just a PITA. but doable.

That first week to 10 days is a Bitch.   And I will have three more of these steps coming.   This could be a long Summer.   I may have to stay inside in the A/C, on-line reading.

Or find me a big A/C unit to cool off my Barn!    I seriously doubt I will even try that, no insulation it would drive the electric bill out of sight, and no way could I afford that.
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Simon Dog
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« Reply #32 on: June 10, 2016, 03:09:38 PM »

Quote
Dr says they have changed standards and no longer want anyone to be using at my current level.
This statement makes me wonder if you are being put through your ordeal because it is medically best, or to protect to MDs license from a DEA jihad.
« Last Edit: June 10, 2016, 03:45:09 PM by Simon Dog » Logged
kickingandscreaming
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« Reply #33 on: June 10, 2016, 03:40:10 PM »

Interesting article here: http://www.nytimes.com/2016/06/14/health/pain-treatment-er-alternative-opioids.html?utm_source=nextdraft&utm_medium=email&_r=0
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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
Charlie B53
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« Reply #34 on: June 11, 2016, 09:35:17 AM »


Trigger point injections can be a good thing, but in some cases they have serious draw-backs.   For the rotator cuff tear in my left shoulder they work beautifully, immediate relief and sometimes last for many weeks, sometimes months, depending on my level of activity.     For the nerve impingement of the right testicle, not so well.   That is a very difficult injection to give, it has to be spot-on or it shuts down the whole right leg.  Spot-on I have hours of total lack of the throbbing pain and gut wrenching cramps.  The draw-back is once it wears off, it is like the nerve is seriously madder than before.  I believe the hydraulic shock of the injection 'bruises' the nerve.  While tranquilized it is no problem.  But once that medication wears off the nerve begins screaming in response to the fresh irritation.

Narcotic meds don't do much in the way of actual relief.   I was so pleasantly surprised when I tried the synthetics and found measurable improvement without the opiod grogginess.

St Louis Pain Clinic had me try a cocktail of anti-siezure meds which I though had a bit of promise until the increased dosage began causing strange ???? mental effects, altered perceptions somewhat akin to LSD.   I had to taper back down until finally quitting that.

Tried using TENS units a number of times, not much success at all.      Meditation, relaxation.    It is difficult but one of the best methods is simply to try to keep busy trying to accomplish a diversionary task.   Finding a way to move my body more efficiently without using specific muscles too much.   An altered body mechanics.  Teaching myself to turn so I can use an arm or leg in slightly different angle so as not to rely on the specific injured muscle so much.

I walk gently.   Shoes wear the balls with hardly any mark on either heel.  So there is little shock to the spine as I move.   Those step-counter things to tell how far I've walked won't count, not enough 'shock' to make the counter notice I've taken a step.

Chronic pain makes one be far more careful.

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Charlie B53
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« Reply #35 on: June 30, 2016, 08:38:49 AM »


Today is Day 3 of the second step in reduction.  I am now at 50% of what was helping mask my chronic pain.

I learned a lot during the first stage.  Suffering greatly mostly from a lack of sleep for the first week I finally learned from research and my PD Nurse how beneficial benedril and melitonin can be to aid getting to sleep.   The muscle relaxers I keep in case I need them may have help a bit also.  So I was somewhat prepared for this reduction.   I had pre-loaded my week at a time pill boxes with the two, leaving out the muscle relaxer.  I may have forgotten it, but I was able to fall asleep both nights without a problem so I am not going to use them unless the need arises.

I am sort of surprised that I am not having the intense anxiety as I did in the first reduction.  This step I am experiencing much more physical pain.  Many of the broken bones, torn ligaments and muscle scarring are starting to call for attention.   NOT comfortable, but I am still able to get up and move about.   I don't think I will be accomplishing much, but I will somehow manage to make a little progress.

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cassandra
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When all else fails run in circles, shout loudly

« Reply #36 on: June 30, 2016, 12:38:20 PM »

I'm well impressed Charlie

    :2thumbsup;

I'm sorry for the terrible physical pains you're having to carry.
But you're strong, you WILL do it.

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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #37 on: July 01, 2016, 09:56:45 AM »


I posted in another thread that I had spent Wed afternoon working on the Wife's Blazer.  Son had come over to help me set the intake back on without disturbing the beads of silicone that seal both ends.  I knocw I would have smeared it and caused a leak if done by myself.

He was teasing me about how much I've slowed down and sort of made a bet how long it would take me to finish putting it back together.  I must have gotten one of my attitudes as while he left to run an errand I stayed at it and put it ALL back together.  By the time he got back we only had to change the oil, filter, add water and stir.  He was impressed.   

I didn't hurt at the time.  It's only later, in bed asleep, that the muscles and joints begin swelling.  Wake up Thursday in agony.  Not so bad today but still nothing will be done.  Maybe tomorrow.
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« Reply #38 on: July 01, 2016, 07:29:33 PM »

Sounds like you are handling things pretty well, CharlieB, kudos to YOU!  :clap;

When it comes to living with chronic pain, I had to learn to pace my bones, joints and connective tissue. Had to learn to do only 1 chore, sometimes 2 if small ones about every other day. Doctor told me to look at it like having a "reserve fuel tank" on a motorcycle and to never end up having to dip in to it and instead, always keep a good amount in the reserve tank. I was always running low but lucky for me, I use to ride motorcycles so understood the doc's whole "reserve tank" analogy. Some days we can do more, some days we have to do less. Heating pads and a warm dog laying next to you help too. A dog's natural body temp is much higher than ours. Our old Blue Heeler (may he RIP) sure let off a lot of heat so came in real handy on cold winter nites but also helped on achy days. Should have had him certified as a therapy dog.
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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.
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« Reply #39 on: July 02, 2016, 04:41:58 AM »

Quote
Blue Heeler

He took his breed name to heart--with a minor variation in spelling.  All dogs are healers, IMHO.  I remember back to when I had 2 dogs--both good sized.  I would lie on the floor or bed and each would position on either side of me--all snuggled up.  I remember thinking at the time that this is what heaven must be like.
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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
Charlie B53
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« Reply #40 on: July 02, 2016, 06:34:04 AM »


We had three dogs, all slept under the blanket with me.  Sadly, we lost to of them, jack the Long legged smooth short coat Jack Russel I found alongside the freeway 14 years ago to old age, and Herbie, the one-eyed Beagle we bailed out of the Animal Shelter after his 'unknown' original owner beat him in the head with a hammer for barking at night when he was only a few months old, we lost to kidney failure at 10 years old.

I never have slept so well as I did with all three of them snuggled against me under the blanket.

That was the real reason for the phrase "Three Dog Night"    The number of dogs it took to keep warm on a cold Winter night.
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Blake nighsonger
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« Reply #41 on: July 21, 2016, 09:42:25 PM »

Awesum CharlieB53 ,hope all is well and your back on track... sounds like you are. thanks
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Charlie B53
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« Reply #42 on: July 22, 2016, 06:43:15 AM »


 A few more days and my 'patch' will be reduced again.  It will be 25% of what it was just a few months ago.  I am NOT moving very well.  Not doing much constuctively but bitching, which I am getting very good at.   And taking naps, another thing I am getting very good at.  Laying still I have far less pain though even my dreams I have difficulty moving because of the pain in my joints.

I suspect a month at 25% then another month at 0 before the Dr will prescribe anything again.  Like I said when this all began,   this is not going to be a good summer for me this year.
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kristina
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« Reply #43 on: July 22, 2016, 01:08:42 PM »

Hello Charlie,
I am very impressed by your determination and I send you my good luck wishes
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 ...
Charlie B53
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« Reply #44 on: July 23, 2016, 05:12:04 AM »


Thanks Kristina,

It can be a difficult time but it won't kill me.  I may wish I were dead but I will eventually cut down some more trees, build a bridge, and get over it.   NOT.   I'm not cutting down any more trees around here unless they die, then little at a time it will go into the burn pile and the ashes then go into the garden.  Just like the leaves in the fall, everything ends up back in the garden ground except meat, that draws nuisance animals.

So I'll be slow and sore for a while yet.  The yard will still get cut, just not near so fast.  I'm NOT racing.   And it is hot here, and humid.   About 99 today, with the humidity that pushes the heat index to about 110.   That's just mean.  I will be inside in the A/C most of the day and poke my head out shortly before sunset.   Nature taught the nocturnal animals well.
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Charlie B53
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« Reply #45 on: July 23, 2016, 05:14:46 AM »


LOL   Forgot to say, I have thought about switching my Cycler times, night/day.  Run all day and try to sleep, stay up and out all night when it isn't so hot outside.

I don't think my neighbors would feel that way listening to my lawnmower all night!

At least it would only be ONE night each week, but ALL night.   lol
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« Reply #46 on: July 23, 2016, 07:19:30 AM »

Charlie, you must have great strength of will. I'm almost certain that I've never experienced anything similar, but I would hope to have the fortitude you're showing. Wishing the best for you in the next two months - may they pass quickly and as smoothly as possible.    :boxing;
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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Charlie B53
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« Reply #47 on: July 24, 2016, 08:08:31 AM »



Tomorrow will be Day One at the 25% level.  I'm not looking forward to this.

But I will survive.   I won't be getting much done, but I'll still be breathing.   May not be up and walking about much.    We will see.

Good thing I am broke all the time.   Dope on the street could work, but I am too cheap to find out.
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Charlie B53
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« Reply #48 on: October 30, 2016, 08:46:50 PM »


A little update.  Dr didn't cut me off completely.  As my last step of fentenyal ran out he prescribed methadone.  At first he wanted to give me morphine again.  I told him I would NOT take it, it just makes me sick and very fuzzy.  So he decided on methadone.

I am surprised that it does make some difference.  Not totally, but it does take off the edges and make the aches and pains much more bearable.

Saw Dr again last week, he is going to leave me as is at the current dose until at least January.
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cassandra
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« Reply #49 on: October 31, 2016, 02:28:35 PM »

Good news

    :2thumbsup;


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
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