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

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

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

Post by Melissa » April 17th, 2018, 6:18 pm

Well, how did the appointment go? My father in law has lot of complicating issues (post polio syndrome) to his coronary artery disease, but he was put on oxygen full time (after being on It as need for the last year and half) this spring and he feels so much better with using it all the time that he wishes he had gone on it full time sooner. I hope your doctors had some suggestions for you to improve symptoms!
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day, aldactone 25mg/day. Second ICD implanted 3/18, also Boston Scientific CRT-D

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

Post by ROBO Pop » April 18th, 2018, 11:32 am

Yesterday was indeed my Cardiologist appointment and my lovely bride insisted she participate so I couldn't gloss things over. Where she ever got that idea is beyond comprehension.

Said "lovely bride" insisted on driving. I'm old school, meaning the macho man in the family never allows a woman behind the wheel whilst he sits stoically in the passenger seat, and the doctor wondered why my resting heart rate was 98. I'm paced at 80 and he said the other 18 bpm were PVCs. Lovely wife driven PVCs, what can I tell yah?

My appointment was originally intended as a quarterly interrogation but wound up a wide ranging discussion with both my Nurse Practitioner and Cardiologist. By the way they loved the portraits, had no clue who the people were in them but can't have everything.

So first was my interrogation which printed out as we talked for over an hour. Wound up with a ream of paper that nobody will ever look at. As I mentioned elsewhere, I was surprised they said my device transmits information to them daily. Seems that there's so much crap happening with my heart they just look for any abnormalities to my abnormalities. They did diagnose I have a new condition, Acrophobia - a severe adverse reaction to acronyms. I have SVT, PVC, PMT, V-Tach and on and on. That in and of itself isn't new but it would seem my CRT is developing a real aversion to all those acronyms and is becoming confused...damn robots

Now I gotta say I was skeptical, but as we progressed on with our wide ranging discussion both the Cardiologist and Nurse Practitioner announced they are convinced I have sleep Apnea and asked me to do a sleep study with the intent of using a CPAP mask at night. They believe the CPAP will extend my time and may improve current quality. Will a CPAP even work with this helmet? Well cudos...good call Guin, you nailed it.

The main issue I'm struggling with is worsening CHF. They aren't sure whether sleep apnea leads to CHF or versa visa but they know they are closely inter-related.

We also discussed when to shut down the defib. My wife carried it a step further and asked how long I have. I'm suspicious she's really asking when she should start looking for a replacement, and in fact voiced that in our discussion. I wisely did not broach the topic of art value after the artist's death so as not to give them any more ideas.

I went home with a sleep apnea torture helmet, some new meds and a confused lovely bride.

Update: I've no idea, but assume many/most sleep apnea tests are done with this contraption you strap around your forehead and when turned on, it performs mind control. No kidding. First there's the obnoxious female voice that drones on telling you such obvious things as you turned it on. Then she says stare up at the ceiling and don't move. Finally after some flashing lights, I assume to hypnotize you she commands you to go to sleep. About that time I have a few choice words for her, reminiscent of my lovely bride's spirited conversations with Siri.

Now after finally falling asleep, I had the issue of draining the swamp which required I shut down the helmet and listen to that obnoxious voice over and over. Up down, on off, happened so much my new friend lost her voice. Along about 3am I finally had to rip that piece of %$@^ off my head. The pain and headache it caused were just more than I could manage. I suspect the engineers who worked for me designed this thing just to avenge some misdeed I visited upon them.

So there you have it. We once again wait and hope
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

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

Post by Ozchrissy » April 20th, 2018, 9:34 pm

Early on I had a CPAP machine, and I had a nasal mask. I used it prior to and after my original device was put in, 2006 era. However I eventually stopped using it, my main issue was that it made me FART. The air I believe missed my lungs completely and just went into my gut, and I would almost blow the doona off the bed in the morning waking ritual. I do know a few people who use them, and they do find, once they get used to it, that it does help them with sleeping and they do feel better during the day. I can honestly say I did cope with it, but after the icd just stopped using it. Can't even remember why now.

You me Craig and Helen, and probably a few others on here, are going though that crappy later stages of CHF, but we are all survivors, and even though we do have the "Poor buggar me days", we all seem to bounce back a bit and keep going. What is it about us that makes us so resilient. I believe if we could work out our formula we could make a lot of money sharing it around.

Keep strong my dear friend, we are all here for you and I know you will overcome what is happening at the moment,how could be cope if it wasn't for you and Al coming in and giving us a hard time. We need you to keep us on the straight and narrow path. wavhi wavhi wavhi
“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.

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

Post by ROBO Pop » May 1st, 2018, 9:43 pm

What the F*** how many times. I type a brilliant, genius level actually, comment and the damn site tells me I must be logged in. I dare you to try even typing a reply without being logged in. Damn it this getting old.
Broken Heart
Nobody has ever survived life, but I'm trying...
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http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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

Post by ROBO Pop » May 1st, 2018, 9:51 pm

Try again...I received a call from the doctor today, seems he was right i have sleep apnea. In fact the results came back so soon because my case is severe. I am not getting enough oxygen to support intelligent life more than half the night. Go ahead Mrag let's hear it... anyway I have an appointment the 15th and I guess I'll be getting a CPAP machine.

Honestly I'm at a point where I'm tired of the struggle. Hopefully this will alieviate some of my struggles. Worst case I'll wind up with brain damage
Like a certain mrag...
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

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

Post by Ozchrissy » May 2nd, 2018, 3:09 am

Now you know you need the machine, I hope you get it sooner rather than later. I have heard from some people that it has made a big difference in their lives.

I did use one but don't need it any more. Just make sure you don't swallow all the air like I did, poor Mrs Robbo if you do.

wavhi wavhi wavhi wavhi
“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.

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

Post by mykidsmom » May 2nd, 2018, 10:12 am

I dont know if id be able to sleep with one of those things at all..i cant sleep with the blooming foot bandages even but being honest ive heard good things from people using them......so suck it up buttercup....you have to work hard to get all the golf clubs....have you tried sleeping in the reclining position guin mentioned?
I think.....Therefore I am.!!!!!

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

Post by TruckerRon » May 2nd, 2018, 10:22 am

Ozchrissy wrote:
May 2nd, 2018, 3:09 am
Now you know you need the machine, I hope you get it sooner rather than later. I have heard from some people that it has made a big difference in their lives.

I did use one but don't need it any more. Just make sure you don't swallow all the air like I did, poor Mrs Robbo if you do.

wavhi wavhi wavhi wavhi
Also, be sure to try out the various types of masks. I went for one with minimal skin contact at the nostrils, but with straps securing it so it doesn't easily slip off when I roll over. My wife initially went for a mask that covers the nose, but she's come around to my POV: less is better. Having to maintain a seal several inches across the face means having to replace the whole mask twice a year.

My current choice:

Image

My wife's original choice:

Image

Then, there's also this:

Image

Good luck finding one that's comfortable. FWIW, the first night I wore mine I slept better than I had in months!
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

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

Post by KansasAl » May 2nd, 2018, 12:27 pm

See Ron, this is why I miss Madison. You know she would have commentary about alternative uses for both of those masks. dancee

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

Post by mykidsmom » May 2nd, 2018, 4:26 pm

OMG ron..they look terrifying....i keep imagining dark dungeons, whips and chains...
I think.....Therefore I am.!!!!!

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

Post by ROBO Pop » May 11th, 2018, 3:03 pm

so 10 days since diagnosis and still waiting. I swear to you the company that supplies the CPAP finally called Thursday just to confirm I am still me and still alive. What's with that? The young sounding lady had no clue how long it would take, she just does annoying calls for proof of life. My Dr appointment is the 15th but I don't think they have anything to do with the CPAP as the child I spoke to said her company would call to arrange a meeting to train me. Guess I need to run out to Target and get some training pants.

Anyway, I haven't gotten more than 3 hours sleep a night in so long it's pathetic. My breathing is horrible even when awake and upright. Any of you who have this I suspect will vouch when I say this is worse than all the other effects of heart disease combined. It's horrible to go through every day feeling like you are suffocating, because you are, and you can't do anything about it, so you gasp and struggle. Your mind becomes foggy and you can't concentrate or focus for more than a few minutes at a time consecutively. I truly am miserable. Can't help wonder how much permanent damage is being done, then again I don't really have a lot of equipment still intact.

I'm suspicious that by the time that infant girl calls me back it'll be too late, I'll be brain damaged and acting like certain others we all know.

So why the wait? What's the delay anybody have any insight into that? Any ladies want to perform mouth to mouth until I get a CPAP? :big-hug:
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

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

Post by DebW » May 11th, 2018, 3:34 pm

I honestly hate the hurry up and wait period. It is terrible, everything is on their time. When I was prescribed my cpap, it took forever to get it and appt to get trained. But, I will say. I sleep much better with the cpap. I sure hope it helps you ROBO!

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

Post by mykidsmom » May 11th, 2018, 7:26 pm

I wish theyd hurry the feck up with this machine Robo....is there a specific reason why theyre so slow.....get mrs Robo to get out her boxing gloves and give them hell......i can only imagine how it is for you.....i had complete organ failure in ireland a couple of years ago..and i had the lungs fill up...unable to breath...blacking in and out..it wasnt just scary..it was downright terrifying..I'll sent willie down to you to do mouth to mouth hes good at it..id offer except for my anaphylactic shock syndrome ...

im serious about someone calling this crew and reaming them out theyre taking too long.....hugs..
I think.....Therefore I am.!!!!!

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

Post by InSync » May 11th, 2018, 8:20 pm

I learned 2 surprising lessons when I got sick with my lung/heart/sepsis event.

1. I had never really lost my appetite before.

2. I only thought I had experienced shortness of breath before.

The SOB with heart failure is a beast. I'm sorry your are struggling with it. I hope you get some relief soon.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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

Post by wen » May 12th, 2018, 8:40 pm

Ok Robo,
I can’t believe I haven’t been on the site for a while (we moved to the Nashville area 6 months ago and I’ve already had 7 sets of company with an 8th set arriving Friday so I’ve been BUSY!) and you go and fall apart on me!!! I certainly hope your CPAP machine arrives soon! My Dad used to have one and said it worked great. I think my Mom liked it even more. No more listening to snoring and snorting in the middle of the night!

And, oh my goodness! Your painting! I am super impressed! Do you take private orders? Seriously! Nice work!

Glad you are keeping your sense of humor through your whole ordeal. CHF sucks for sure. Hopefully the CPAP will give you some relief if you can tolerate the apparatus!

Hang in there!!
Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

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