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Author Topic: Do You Sleep More Now?  (Read 3231 times)
Simon Dog
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« Reply #25 on: May 09, 2018, 10:28:34 AM »

Quote
I don't remember why they want him above 11 but they do.
Increased risk of adverse thrombolytic events when you use ESAs like EPO to boost HGB.
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lulu836
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« Reply #26 on: May 09, 2018, 01:18:54 PM »

I, too feel better at 10 or 11 but it is really dangerous for me to push for 10.5 or higher.  I did not believe this when told but after a stroke at 10.5 and another at 10.8 I decided that the doctors might be correct about limits.  My solution was to stop bending the doctors' ears with my insistence for higher values.  That decision was over 2  years ago and it has worked out well.  I was lucky that the strokes have so far been only warnings from my Higher Power.  After some lengthy physical therapy in a really nice facility my vision and physicality  are in pretty good shape.  I can even drive again.  :thumbup;
« Last Edit: May 09, 2018, 01:24:42 PM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #27 on: May 09, 2018, 01:44:56 PM »

Well, that certainly explains the cautious way the Dr. has been administering EPOs - a little bit, a little more, now 2x a month. Hubby's BP goes high at the slightest provocation. It's a tight-rope walk then, between too little red blood and a stroke. Yikes.

I've learned a lot in this thread, thanks so much for the info and advice!
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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."
PrimeTimer
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« Reply #28 on: May 10, 2018, 01:25:42 PM »

My husband has somewhat of a physical job and is fairly active. He's not overweight, limits his fluid intake, doesn't drink or smoke. Labs look good. He's also on aspirin therapy along with a BP med. Maybe this is why they take more of a risk with keeping his Hemoglobin at 11+. Once he gets over 11 they back off the EPO to just once a week. Even his Hematologist agreed with this regime.
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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.
Marilee
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« Reply #29 on: May 10, 2018, 03:05:41 PM »

PrimeTimer, I'm so glad that your hubby can take the EPO and have it well tolerated (yea!). So he take a shot once a week? We're up to twice a month, but I can imagine better results at lower doses 4x a month: Less of a rollercoaster.
Lulu836, I read recently that several big Pharma companies have developed a pill to replace the EPOs - allegedly without the same risks. I read that Switzerland already has it, that it's in the hands of the US FDA for approval. I also read that it's planned to launch in the US when the patents all expire on the EPOs. I think it was called a HIB stabilizer. It's possible this new pill will help you, eh?
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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."
coldhoist
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« Reply #30 on: July 14, 2018, 01:21:12 PM »

HD knocks me out. Within two hours after I get home from dialysis, I am in the bed. Sometimes less than that. Going to bed that early messes up my sleep pattern. I am in and out of the bed every 45 minutes on so. I wake up the next morning totally wasted. It takes until about 5-6pm for my body to recover. Then it is back to dialysis the next day and the pattern repeats itself.
« Last Edit: July 14, 2018, 01:33:57 PM by coldhoist » Logged
cassandra
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When all else fails run in circles, shout loudly

« Reply #31 on: July 14, 2018, 02:58:03 PM »

Hi coldhoist what's your pumpspeed at? And your UF rate?


Love, 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
lulu836
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« Reply #32 on: July 15, 2018, 12:03:51 AM »


Lulu836, I read recently that several big Pharma companies have developed a pill to replace the EPOs - allegedly without the same risks. I read that Switzerland already has it, that it's in the hands of the US FDA for approval. I also read that it's planned to launch in the US when the patents all expire on the EPOs. I think it was called a HIB stabilizer. It's possible this new pill will help you, eh?


My clinic stopped EPO several months ago and went to another one (don't remember the name) which they say gives better results.  To my chagrin I don't question the nurses very often about what they are putting in my line.  I trust them but that's not a good reason not to question them.
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Of all the things I've lost, I miss my kidneys the most.
kristina
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« Reply #33 on: July 15, 2018, 02:30:27 AM »

HD knocks me out. Within two hours after I get home from dialysis, I am in the bed. Sometimes less than that. Going to bed that early messes up my sleep pattern. I am in and out of the bed every 45 minutes on so. I wake up the next morning totally wasted. It takes until about 5-6pm for my body to recover. Then it is back to dialysis the next day and the pattern repeats itself.

Hello coldhoist,
Wouldn't it be a good idea for you to have your dialysis-sessions during the late evening shift and when you finish dialysis and arrive at home you slowly get ready for bed? Perhaps that could help you to achieve a less disturbed sleep-pattern?
Best wishes and good luck 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 ...
lulu836
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« Reply #34 on: July 15, 2018, 10:02:01 AM »


Hubby's BP goes high at the slightest provocation. It's a tight-rope walk then, between too little red blood and a stroke. Yikes.


@Marilee.........after getting my dry weight situated I was still having episodes of extremely high BP.  The sodium part of the HD treatment was removed totally and the BP has been reasonable and appropriate every time since.  Sodium is used to combat cramping and since I have a low dry weight and never exceed 1.5L of fluid on board I am not likely to cramp anyhow.  Lust a thought............
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Of all the things I've lost, I miss my kidneys the most.
Marilee
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« Reply #35 on: July 15, 2018, 12:16:19 PM »

The sodium part of the HD treatment was removed totally and the BP has been reasonable and appropriate every time since.  Sodium is used to combat cramping and since I have a low dry weight and never exceed 1.5L of fluid on board I am not likely to cramp anyhow.  Lust a thought............

Wow! I never knew that sodium was added to HD treatments. I'll have to check to see if there's any in the PD dialysate. Hubby's blood pressure has been high with wild swings for years (that's what damaged the kidneys): He's on 5 different daily meds to keep it under control, but it still swings now that he's on dialysis (or now that his kidneys have failed... not sure which).

Thanks for the tip about sodium in the treatment - I'll check it out.
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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."
GA_DAWG
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« Reply #36 on: July 15, 2018, 10:06:31 PM »

I never kn ew about high BP causing kidney failure, and never knew I had high BP to begin with. When I finally went to the doctor, she asked me who was treating my high blood pressure. Told her no one, I did not have high blood pressure. She told me it was 230/160 and asked what I called that. She gave me medication and sent me for blood work, which I refused for another week. By the time I had the blood work done, the lab called the doctor, did not even wait to send the results. Doctor called my wife and told her to get me to the emergency room as quickly as possible and read her the numbers to give the ER. ER was full, but they sent me straight to the back, did not even complete registration. Later that night, I got the news about ESRD. I think most people have no idea about the danger of high blood pressure.
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lulu836
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« Reply #37 on: July 16, 2018, 05:44:15 AM »


I think most people have no idea about the danger of high blood pressure.


Silent but deadly!

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Of all the things I've lost, I miss my kidneys the most.
Marilee
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« Reply #38 on: July 16, 2018, 07:15:38 AM »

I think most people have no idea about the danger of high blood pressure.
Wow, that's a horror story, GA_DAWG, and I think you're right: Folks hear the vague "silent killer" phrase and think about heart attack and stroke, but kidney failure? Not at all.

My hubby didn't go to doctors - ever - until he had a heart attack from a blockage, got a stent implanted and started taking statins. Then they looked at his bp: 220/120 (a lot like yours!) but no damage to kidneys at that point (20 years ago). They started messing around with drugs to lower the bp but it took about 10 years to get a combo that worked well enough and in those years his poor kidneys just scarred over. They stabilized at about 20% functionality for several years but then hubby got dehydrated and the kidneys took another, final hit. We didn't know that as people get older they lose their sense of thirst so neither of us was watching out for dehydration - it's not like he was crossing the Sahara or anything, just wasn't thirsty, just didn't notice.
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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."
coldhoist
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« Reply #39 on: July 30, 2018, 04:11:53 PM »

Now, I have a lot of trouble sleeping. I cannot get comfortable in bed. I toss and turn. I am in and out of the bed all night long. It is very frustrating to want to sleep but you cannot. On dialysis days, I get home and I am in the bed early, like about an hour after I get home. I am up at eleven o'clock and then thought out the night, I wake every 20 minutes and start pacing the floor.
I have never had a problem like this until I started dialysis.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #40 on: July 31, 2018, 04:31:34 AM »

I would guess the waking is psychological rather than physical (worrying about dialysis), and will go away when you get used to dialysis, unless you get into the habit of believing it is part of dialysis, then you will be stuck with it. In other words, convince yourself that this problem will go away, and it will (but also speak to a doctor incase I am, wrong about it being psychological).
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
GA_DAWG
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« Reply #41 on: August 02, 2018, 10:15:08 AM »

My slleping habits changed. After coming home from a treatment in the mid to later afternoon, I have something to eat, then take a pretty long nap. That makes it impossible, on most days, to go to bed and sleep early. Now I normally am up until I start to feel sleepy rather than going to bed and just laying there, which always seems to just make things worse.
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