Congestive Heart Failure and xPap Therapy

[Kiralynx]

Well, I have to say that I have established without a doubt that I need more than 4-5 hours of sleep in general and definitely more than that on my ASV.

Why haven't I had adequate sleep the last two nights?

'Cause my mother is in hospital with congestive heart failure. Enzymes in the blood work indicate that she's had another heart attack. Her sixth.

Ever since I was diagnosed, and became aware of the linkage between OSA and chronic pain issues, not to mention its linkage to things like my mom's CHF, I've been trying to persuade Mom to be tested. She didn't want to because she was afraid of trying to sleep anywhere except in her La-Z-Boy in her own den.

Mom has told me for years about how she would wake up in the middle of the night, gasping for breath, with her heart pounding. I'm ashamed to admit that I was so ill-informed about sleep apnea that I attributed the description to Mom's well-known ability to dramatize any medical incident. Since being diagnosed myself, and studying, I've realized that Mom wasn't dramatizing.

I've frequently kidded Mom that I wish she would have kept her hips and knees to herself, because she started with chronic moderately severe hip and knee pain in her early to mid 50s. (My mother, FYI, is not overweight.)

I started with chronic moderately severe hip and knee pain in my early to mid 50s.

I bought a recording pulse oximeter, made sure I knew how to run it, and went over on Monday to try to persuade Mom to wear it overnight. (CMS-50F). I figured it would at least give me some data to argue with my folks and her doctors that she ought to be tested. Mom didn't like it on her fingers. Guess I should have gotten one I could put an ear sensor on, and tuck behind her pillows.

About an hour of general chit-chatting, Mom started gasping that she couldn't breathe, and we rushed her to the emergency room.

When we were allowed in, Mom was on the first cousin to my ASV, a Bipap ASTD, with pressures of 5 and 10, and was sounder asleep than I've seen her in years.

Unfortunately, they decided not to leave her on it once her breathing had apparently stabilized. (The RT I spoke with was very friendly, and not unwilling to discuss machines and so forth with someone who knew a tad more than, "Oh, my god, they're breathing for her!") He said her doctor had ordered it removed once she could breathe reliably on her own.

My father is absolutely exhausted -- he'd had, he said, about 3 hours sleep, if that, for most of the last week because Mom kept waking him up. So I threw him out of the emergency room, telling him I didn't need him in the bed next to Mom. (He was going to set the alarm for 4:30... I pointed out that no doctors would be making rounds until after the nursing staff shift change at 7a, and that he would do Mom much better by being rested when they did come.)

The doc wanted her in a room where she could continue to be monitored, but there wasn't one, so we stayed in the ER until the next day. Mom woke up shortly after they took the Bipap off her. Water, Ice, Lip balm, water, ice, lipbalm.... needless to say, I didn't have a chance to doze in the chair.

My Dad came back, looking worlds better for 7 hours of uninterrupted sleep. I came home and made all the needed phone calls: to the church, to their friends, canceling appointments. And then crashed myself.

Harry and I had dinner (Chinese beef with sesame, ginger, garlic, and mustard in the seasoning) and then I packed a bag of things to eat and drink, and some books, and headed back up.

Dad went home. Mom wasn't allowed anything by mouth as she was having tests today, and they did give her something for her racking cough. As a result, she slept... through three blood draws, four sets of vitals, and being WEIGHED (at ONE AY-EM?!) My ghod, I really think the only way to get rest is NOT to go to a hospital!

Anyway, I was watching Mom breathe... normal, normal, shallow, shallow, GASP, quick breaths, and repeat variations on a theme.

I spoke to her doctor about a sleep study. Doctor does not think one done while she is sick would be valid. If I hadn't been so bleeping tired, I'd've been tempted to grab her by her labcoat lapels and scream. As it was, I managed to express my concerns about the links between congestive heart failure and sleep disordered breathing. I think.

But I need more info -- not just on the linkage between apnea and CHF, but on the treatment of established CHF with a Bipap to prevent it worsening.

I just bought a back-up ASV. Haven't even had time to program the darn thing. So if it seems like a reasonable course of treatment for her, I could simply let her use my back up until or if Medicare will pay for a machine for her.

I'm about to head back to the hospital. I do not have time to research the way I normally would. I hope some of the people who have this at their fingertips can help me find the information I need to adequately discuss this issue with her doctors.

Many thanks.

[dsm]

KiralynX

I agree with your idea of putting your mom on your back up. You have the starting pressures to use & no matter what, she has to be better off with it than without.

If she still exhibits the waxing & waning pattern (classic CHF Cheynes-Stokes pattern), then she needs pressure support as well as bilevel & of course the ASV can deliver it.

It is probable that the Bipap AutoSV is going to be the easier machine to get your mother used to. The Vpap Adapt SV can take some patience & really needs a very good mask set up.

Will be thinking of you & hope things pan out well.

Good luck

DSM

[spookydoo]

Ever since I was diagnosed, and became aware of the linkage between OSA and chronic pain issues, not to mention its linkage to things like my mom's CHF,

May I suggest a book that may help you with your chronic pain issue. It is called Hypothyroidism Type 2 by Mark Starr. I read it, it rocked my world and have given seveal copies away. One of my co-workers' wife read it and after having been diagnosed with all kinds of problems (inlcuding Fibromyalgia) is on her way to recovery. It has helped me tremendously. Basically he says to ignore the blood tests and go by symptoms and basal temperatures. He's an M.D. and is a Hypothyroid and pain management specialist. Just a thought. It is worth a read and found through Amazon.com.

[rested gal]

Anyway, I was watching Mom breathe... normal, normal, shallow, shallow, GASP, quick breaths, and repeat variations on a theme.

I spoke to her doctor about a sleep study. Doctor does not think one done while she is sick would be valid. If I hadn't been so bleeping tired, I'd've been tempted to grab her by her labcoat lapels and scream. As it was, I managed to express my concerns about the links between congestive heart failure and sleep disordered breathing. I think.

But I need more info -- not just on the linkage between apnea and CHF, but on the treatment of established CHF with a Bipap to prevent it worsening.

----

I'm about to head back to the hospital. I do not have time to research the way I normally would. I hope some of the people who have this at their fingertips can help me find the information I need to adequately discuss this issue with her doctors.

http://www.resmed.com/au/assets/documen ... 0911r1.pdf
Citations at the end of that article:
1 Young et al. Am J Respir Crit Care Med. 2002; 165: 1217–39
2 Teschler H et al. Am J Respir Crit Care Med. 2001; 164: 614–19
3 Philippe C. Heart. 2005; Published online Jun 20
4 Töpfer V et al. Pneumologie. 2004; 58(i): 28–32

The machine (CSR 2) mentioned in that old article became the present day ResMed VPAP Adapt SV (ResMed's U.S. name for it.) The ResMed VPAP Adapt SV is specifically designed for effective treatment of central apneas, like those that happen in the Cheyne-Stokes Respiration pattern typical of many Congestive Heart Failure sufferers.

Bilevel with timed backup rate was the way they used to (still do) treat "centrals." The newer ASV (adaptive servo ventilation) machines are a more effective treatment for centrals.

Respironics' BiPAP Auto SV is another brand of adaptive servo ventilator. The two manufacturers' machines are designed differently, but both are ASV machines.

http://www.resmed.com/us/clinicians/abo ... clinicians
Among the citations at the bottom of that page:

9 Teschler H, Dohring J, Wang YM, Berthon-Jones M. Adaptive pressure support servo-ventilation: a novel treatment for Cheyne-Stokes respiration in heart failure. Am J Respir Crit Care Med 2001;164:614-9.

10 Pepperell JC, Maskell NA, Jones DR, Langford-Wiley BA, Crosthwaite N, Stradling JR, Davies RJ. A randomized controlled trial of adaptive ventilation for Cheyne-Stokes breathing in heart failure. J Respir Crit Care Med 2003;168:1109-14.

11 Topfer V, El-Sebai M, Wessendorf TE, Moraidis I, Teschler H. [Adaptive servoventilation: effect on Cheyne-Stokes-Respiration and on quality of life ] Pneumologie 2004;58:28-32.

12 Schadlich S, Konigs I, Kalbitz F, Blankenburg T, Busse HJ, Schutte W. [Cardiac efficiency in patients with congestive heart failure and Cheyne-Stokes respiration in long-term treatment with adaptive servo ventilation (AutoSet CS)] Z Kardiol 2004;93:454-62.

13 Philippe C; Stoica-Herman M; Drouot X; Raffestin B; Escourrou P; Hittinger L; Michel P-L; Rouault S; d'Ortho M-P. Compliance with and effectiveness of adaptive servoventilation versus continuous positive airway pressure in the treatment of Cheyne-Stokes respiration in heart failure over a six month period. Heart 2006;92(3):337-42.

Hoping all the best for your mom, Kira. I hope you can convince her doctor to consult with a board certified sleep doctor right away about whether her (the doctor's) feeling is warranted that a sleep study would not be "valid" while your mother is hospitalized. My layperson's feeling is...the study (and ASV titration) needs to be done now.

[kteague]

I know in times like this we just do what we have to do, but I'm hoping you are able to take care of yourself at least somewhat while looking out for everyone else. You're always willing to share your experiences and knowledge to help strangers, now you get to help one so very close. Good she's got you. Keep us informed as time permits.
Kathy

[garyland]

Regarding your mother's CHF. She needs to be on at least 200 mgs of COQ10 daily. It will make a world of difference in her life. Results will be seen in about 6 weeks. Please google CHF and COQ10 together. Please ask her doctor. Being an alopathic physician he will probably tell you that she does not need it, but if your are lucky he may say it would not hurt. BTW my mother died at 87 from CHF as a result of Aortic valve stenosis. Believe me I know what you are going thru.

Best of luck,

Gary

[Kiralynx]

Regarding your mother's CHF. She needs to be on at least 200 mgs of COQ10 daily. It will make a world of difference in her life. Results will be seen in about 6 weeks. Please google CHF and COQ10 together. Please ask her doctor. Being an alopathic physician he will probably tell you that she does not need it, but if your are lucky he may say it would not hurt. BTW my mother died at 87 from CHF as a result of Aortic valve stenosis. Believe me I know what you are going thru.

Best of luck,

Gary,

She's on 200... IF she's taking it. I'd have her on 400 if I could persuade her to swallow the pills. <g> I had the pleasure of "meeting" some of the doctors who are doing research into CoQ10!

[Kiralynx]

KiralynX

I agree with your idea of putting your mom on your back up. You have the starting pressures to use & no matter what, she has to be better off with it than without.

If she still exhibits the waxing & waning pattern (classic CHF Cheynes-Stokes pattern), then she needs pressure support as well as bilevel & of course the ASV can deliver it.

It is probable that the Bipap AutoSV is going to be the easier machine to get your mother used to. The Vpap Adapt SV can take some patience & really needs a very good mask set up.

Will be thinking of you & hope things pan out well.

Thanks, Doug.... the advantage to the Bipap ASV is that I've GOT the machine here -- it just needs to be programmed. And, of course, I just need to get her to use it. That's why I'm going through her doctors.

[Kiralynx]

I know in times like this we just do what we have to do, but I'm hoping you are able to take care of yourself at least somewhat while looking out for everyone else. You're always willing to share your experiences and knowledge to help strangers, now you get to help one so very close. Good she's got you. Keep us informed as time permits.

Kathy,

I'm disconnecting the phone the moment I hook up my Bipap.... I forgot to disconnect it yesterday, and managed, in spite of that, to sleep through three phone calls.

Got to doze a bit in a chair, but I can't call it restful. However, the difference three nights' uninterrupted sleep has made in my Dad is just plain amazing.

I'm in daily touch with my sister, and we are both giving Dad h-ll about getting assistance -- just someone to take care of her at night so he can rest.

If I can work through her doctors and get them to trial the ASV, I think she will sleep more solidly. Of course, finding a mask she will tolerate is gonna be interesting, 'cause she has a small face, and she's a mouth breather for certain. With claustrophobia that makes mine look mild.

Soon as I answer the kind comments, I'm off for bed! With a Pair O' Dachs who are of the opinion that their Missy belongs in the bed with dachshunds wrapped around her.

[Kiralynx]

Hoping all the best for your mom, Kira. I hope you can convince her doctor to consult with a board certified sleep doctor right away about whether her (the doctor's) feeling is warranted that a sleep study would not be "valid" while your mother is hospitalized. My layperson's feeling is...the study (and ASV titration) needs to be done now.

Well, my gut feeling is that the study should be done now (six months ago would have been better and years ago better than that, but....).

Mebbe SWS or SAG can give some thoughts on it.

I understand what her current doctor is saying: but I feel it's sort of a "chicken and egg". Yes, she is now recovering from the CHF and that is a primary consideration. BUT: better rest would keep the disease from progressing more than it has.

I'll tackle those references when I wake up. I think I'm too tired to comprehend them!

Mom is more lucid today, and that's a Good Thing.

[Kiralynx]

May I suggest a book that may help you with your chronic pain issue. It is called Hypothyroidism Type 2 by Mark Starr. I read it, it rocked my world and have given seveal copies away. One of my co-workers' wife read it and after having been diagnosed with all kinds of problems (inlcuding Fibromyalgia) is on her way to recovery. It has helped me tremendously. Basically he says to ignore the blood tests and go by symptoms and basal temperatures. He's an M.D. and is a Hypothyroid and pain management specialist. Just a thought. It is worth a read and found through Amazon.com.

I'll check it out... although I have to say that the majority of my pain issues have been alleviated by my Bipap, I wouldn't mind checking into the thyroid issues, since, although my blood tests claim normal, thyroid abnormalities abound in our family.

Thanks for the reference.

[ozij]

If you can, skip the sleep study discussion with the doc. Tell him what you observed of her breathing "Anyway, I was watching Mom breathe... normal, normal, shallow, shallow, GASP, quick breaths, and repeat variations on a theme." and see if he's open the use of an ASV - without a sleep study. The machine may stabilize her breathing and improve her oxygenation.

I could be wrong, but I seem like your doc is falling into the trap of "sleep issues aren't that important right now, she's got CHF!". So try to go at it from the breathing /oxygen aspect -- let's hope he's cooperative.

O.

[jnk]

If you can, skip the sleep study discussion with the doc. Tell him what you observed of her breathing "Anyway, I was watching Mom breathe... normal, normal, shallow, shallow, GASP, quick breaths, and repeat variations on a theme." and see if he's open the use of an ASV - without a sleep study. The machine may stabilize her breathing and improve her oxygenation.

I could be wrong, but I seem like your doc is falling into the trap of "sleep issues aren't that important right now, she's got CHF!". So try to go at it from the breathing /oxygen aspect -- let's hope he's cooperative.

O.

Yup. Wise words, those, imo.

[tattooyu]

I can't provide any better advice hear, but I just wanted to tell you that I'm putting out the good vibes for your mom.

[Kiralynx]

If you can, skip the sleep study discussion with the doc. Tell him what you observed of her breathing "Anyway, I was watching Mom breathe... normal, normal, shallow, shallow, GASP, quick breaths, and repeat variations on a theme." and see if he's open the use of an ASV - without a sleep study. The machine may stabilize her breathing and improve her oxygenation.

I could be wrong, but I seem like your doc is falling into the trap of "sleep issues aren't that important right now, she's got CHF!". So try to go at it from the breathing /oxygen aspect -- let's hope he's cooperative.

Ozij,

That's a good thought -- I admit that I was sufficiently tired that I was thinking that an ASV couldn't be prescribed without a sleep study.

The problem I've had is that her doc sticks an oximeter on her finger for a few minutes while she's awake and alert, and says, "Oh, she doesn't have any problems... her level is in the middle 90s!"

Be willing to bet most of us could do 90s when we're awake, too! (What is Rooster's sig line? "Healthy awake, deathly ill asleep.")

And, of course, Mom weighs a whopping 105 pounds, and we all know thin people can't possibly have breathing abnormalities!

She's been released from the hospital... when I left this morning, she was lucid, and her words were mostly clear. My husband went over to help Dad get her in the house, and said that she was slurring her words... after no more than a couple of hours off the oxygen.

Next task: beating my stubborn father over the head and getting him to accept help in caring for her.