I'm tired...anybody got any ideas?

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

Moderator: Moderators

User avatar
ROBO Pop
Posts: 4299
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: I'm tired...anybody got any ideas?

Post by ROBO Pop » June 12th, 2018, 12:16 pm

Since someone (the local bouncer) determined it was necessary to lock my Insurance thread I guess I'll continue my thoughts back here where it really all started.

So you guys know I take industrial strength diuretics (p pills for the uninformed) and do my best swamp draining throughout the night even though the pills are consumed with my morning caffeine. As a side note for the genius' amongst us, yes I tried taking them at bed time with the same free flowing results. Typically I will get up four times per hour to water the roses all night, and no my wife doesn't have a flower garden...any longer.

So here's the dilemma, nobody thought about the impact, or should I say conflict, between draining the swamp and a CPAP for sleep Apnea. Jumping up to tinkle every 15 minutes is not conducive to a safe and restful sleep sleep sleep. On top of that, those in the know realize for insurance to fork out the money for a CPAP machine you must demonstrate usage of greater than four (4) hours per night and some evidence of benefit from the sleep data collected before and after ...

So I struggle, and sadly am not even sure there is a benefit. If as my Cardiologist insists sleep apnea and heart disease go hand in hand then it's reasonable to assume the majority of patients using CPAP machines are heart patients and likely on diuretics. So why has nobody ever thought this through and come up with a tool specifically to address these issues? What do yah think, should a bunch of us get together and invent a PPAP machine?
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

User avatar
TruckerRon
Moderator
Posts: 3054
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: I'm tired...anybody got any ideas?

Post by TruckerRon » June 12th, 2018, 1:09 pm

I'm merely a diabetic with heart issues (LBBB caused the SCA), I was making visits every 2 hours during the night. Although I've brought my diabetes under control and don't take P pills, I still make those visits. The good news is they're looking for at least 4 total hours with the CPAP during the night.

Hang in there, it should get easier soon.

BTW, the most restful thing about my hospital stay after the SCA was not having to get out of bed every 2 hours... and the part that saved my sanity was having the catheter put in during those first hours after my admission to the hospital when my short-term memory wasn't functioning. Having it extracted, though, that was an experience.

lmao4dx
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

Grammaram
Posts: 547
Joined: May 30th, 2014, 10:37 pm
Location: Eastern Pennsylvania, USA

Re: I'm tired...anybody got any ideas?

Post by Grammaram » June 12th, 2018, 1:11 pm

I take Lasix daily - and it is impossible for me to predict how it will work. I can take it at 8 in the morning, hoping it will do its work before I go out in the afternoon, then it decides to “work” at noon when I’m ready to go out! Other times, it starts pumping fluid in 20 minutes, and after about 2 hours it eases up.
I have similar problems at night - up at least 3 times a night - can’t remember when I last slept more than a few hours at a time! It was explained to me that when I lay down in bed, all the fluid that has collected in my lower body “shifts” upward and back in to circulation, making the kidneys work at night. I’ve had nights of up every hour - makes for a miserable morning.
If it isn’t too much TMI, for men there is a contraption called a “condom catheter” which may be of help for you. Just what you need - more to hook up at night! Good luck, my friend!

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
Medtronic Evera S DR Implanted May 22,2014

garya
Posts: 551
Joined: September 10th, 2010, 9:04 pm

Re: I'm tired...anybody got any ideas?

Post by garya » June 12th, 2018, 6:32 pm

Let's not talk about catheters. I like kinky as much as the next person, but that is one that can cause a cringe.

Love Margaret's explanation on Lasix. I thought it was only me. Unless I am suffering some real SOB, I never take Lasix after 4 PM. One time I mistakenly took Lasix instead of my cholesterol at bed time. Even now there are times when I confront the urinal and "start" I have fears if my shirt bottom might be in the way or if I am fully unzipped. I would never use the "catheter condom" which makes sense because it makes it way too easy to be a full fledged, professional bed wetter the next time you forget the condom.

On starting this drug, I would take Lasix and exactly 60 minutes later, start peeing. Then every 30 minutes stand by toilet and pee again. Do this for 4-6 hours and I was done. Now the Lasix might not kick in for 2-3 hours and I may only go for 2 hours. Have I adapted?

User avatar
Ozchrissy
Posts: 7109
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: I'm tired...anybody got any ideas?

Post by Ozchrissy » June 12th, 2018, 7:08 pm

I am in a totally different situation than all of you. Of course when I first started on Lasix I had the constant visits in the first couple of hours. But now, and am on 80mg in the morning, I really do not notice anything different to normal people. I can take my Lasix and then go out as if nothing is different. When I have been in Hospital for other procedures, they always seem to stop my Lasix for my low blood pressure, and I can put on 4kg in a couple of days. Then get lung issues, and they put me on oxygen etc. and finally, due to me having a hissy fit, they realize I do need my lasix and my BP is normal for me.

I have found recently though that I am waking up about 5am to have a twinkle, which is the first time in my life I have had to get out of bed to go and then get back to finish my sleeping.

So all this aside, I haven't a clue why this would be your case Robbo et al, maybe my kidneys are not as good as they should be, or yours are overactive. I do however think that the lying down to sleep may have something to do with it, purely on a gravity basis.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

User avatar
ROBO Pop
Posts: 4299
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: I'm tired...anybody got any ideas?

Post by ROBO Pop » June 15th, 2018, 12:14 pm

Day 8 using the CPAP, and I'm averaging 6.6 hours per night. It's not as bad as one might think and thank you TRon I Sour Puss Wrecks for the suggestion of which face mask to opt for, good call.

Sadly I honestly can't tell much if any difference. Still stupid, and my wife says still ugly too. No hair growth, and I don't wake refreshed.

My numbers dropped from 76 episodes per hour to 13 per night, and with as bad as my Cardiologist and the CPAP Technician said I was I certainly expected some positive results. Guess I'm SOL or is that EOL.

such is life. Need to get started on that self portrait. One way or another I'm gonna look good. Hey I'll do one of myself on the porcelain throne, it'll make me look smart like Rodin's the Thinker
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

User avatar
TruckerRon
Moderator
Posts: 3054
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: I'm tired...anybody got any ideas?

Post by TruckerRon » June 15th, 2018, 1:27 pm

Maybe I recovered faster from my apnea than you're doing, Robo. I went from over 90 events/hour to 1.5/hour, and in about 6 months went from exhausted and needing 10 hours between the normal nighttime sleep and 2 or 3 naps during the day to thriving with just 7 hours at night plus an occasional nap before evening outings. (I hope that makes sense.)

Give yourself more time. After all, you're clawing your way from the abyss of extreme sleep deprivation.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

Post Reply