Don't assume you know what's wrong! Update on old thread

kavanaugh1950 · Post by **kavanaugh1950** » Fri Oct 27, 2006 12:55 pm

kathy, best wishes. I too have cardiac problems but feel much better since starting on cpap in june. you look young and have many years ahead of you. keep us posted and know that we care about you. pat

ozij · Post by **ozij** » Sat Oct 28, 2006 1:50 am

Kathy,
I'm glad they've diagnose you - and hope that will lead to treatment and good health.

About taking your mask off at night: I'm no doctor, nurse or anything in medicine, but do know that sometimes people with heart problems have a choking feeling when lying down because of fluid accumulating in their lungs - and they have to sit up, or sleep with more pillows, etc. That is not like run of the mill "I can't stand this mask" behavior. Nor is it OSA - those are breathing problems - when lyign down - cause by the heart condition.

I have no idea whether under those conditions, taking the mask off, or fighting to keeping it on is better - please tell you cardiologist how you feel at night and what makes you take of your mask.

All the best

O.

pikacat · Post by **pikacat** » Sat Oct 28, 2006 3:08 am

i too have had congestive heart failure. i have advanced and complicated issues and had open heart surgery 7 years ago. i live with moderate heart failure daily. i know 'heart failure' sounds bad. but it's really not that bad living with it and treating it. it's so good to have found out rather than not. heart problems are so tricky and subtle. but the heart is one of the most amazing organs. my heart is still enlarged and i walk 3 miles a day. in time, it will get smaller. and enlarged heart just means that your muscle is pumping harder than usual, just like when your bicep gets bigger when you exercise it. when the problems are relieved and your heart is beating normally again, the enlargement will disappear.

pikacat · Post by **pikacat** » Sat Oct 28, 2006 3:13 am

ozij wrote:I'm no doctor, nurse or anything in medicine, but do know that sometimes people with heart problems have a choking feeling when lying down because of fluid accumulating in their lungs - and they have to sit up, or sleep with more pillows, etc. That is not like run of the mill "I can't stand this mask" behavior. Nor is it OSA - those are breathing problems - when lyign down - cause by the heart condition.

this is interesting to me. it's not only the fluid in the lungs, but your heart actually works harder to pump blood while you're lying down because there's no gravity to help the blood flow to the lower half of your body. when i was very sick, they told me i needed open heart surgery immediately. to my surprise, they told me then that my snoring/gasping might very well be cured because of my surgery. they told me that your heart works extra hard when you're lying down and because my heart was pumping so poorly (i forget how little blood was pumping... but i do recall that the doctor said that when i was resting, my heart was pumping as fast as what a healthy person my age's heart would pump if someone was running up stairs nonstop), oxygen was not reaching my brain when i was sleeping. consequently, i was getting a warning in my brain that asphyxiation was occuring and i would wake constantly.

in the end, it turned out that this was only part of the problem and i did indeed need a cpap. but you might be surprised that your problem never was apnea but your heart all along (or both, like me). i would talk to your doctor and not just take what i said to heart. this is just speculation and based on my own experience.

SelfSeeker · Post by **SelfSeeker** » Sat Oct 28, 2006 7:51 am

Kathy,

Thank you for posting about your medical problems.

I am sure many others may see themselves in the same boat. Thinking it is the CPAP not working, and not think there may be more wrong with them.

I also thought that the CPAP would help the heart. I do know that you can get an enlarged heart from OSA, I thought it would go away once treatment started.

Ozij - thanks for posting this.

I never thought of pulling off the mask as anything other then maybe pressure, panic or getting used to it, which I know does take time. I did not think of other serious medical conditions.

ozij wrote:Kathy,
I'm glad they've diagnose you - and hope that will lead to treatment and good health.

About taking your mask off at night: I'm no doctor, nurse or anything in medicine, but do know that sometimes people with heart problems have a choking feeling when lying down because of fluid accumulating in their lungs - and they have to sit up, or sleep with more pillows, etc. That is not like run of the mill "I can't stand this mask" behavior. Nor is it OSA - those are breathing problems - when lyign down - cause by the heart condition.

I have no idea whether under those conditions, taking the mask off, or fighting to keeping it on is better - please tell you cardiologist how you feel at night and what makes you take of your mask.

All the best

O.

kteague · Post by **kteague** » Sun Oct 29, 2006 9:12 am

Many thanks to all of you for sharing your situations and well wishes. Since this posting I've had been hospitalized to check out my heart. They let me come home yesterday with the understanding I will not exert myself and will see a doctor soon for further testing. Now on a couple new meds, had a couple heparin shots in the abdomen, and they flushed me with lasix. I've got ankles again (who would have thought I had skinny ankles - they haven't been skinny in years) and I'm wishing I hadn't gotten rid of all the shoes that didn't fit when I kept having to increase my shoe size and buy "utility" styles. (DUH) I feel much better but still have the heaviness and pounding with the least exertion, like walking from room to room or getting dressed. Since my blood pressure was hard for them to get to come down, they are thinking my lung pressures are causing a lot of the symptoms. Will be glad to get things leveled out so I can work on regaining a healthy condition. Thanks again for your thoughts and prayers.
Kathy

tooly125 · Post by **tooly125** » Sun Oct 29, 2006 10:01 am

Kathy,

Welcome home glad to hear about the progress you've made.

SelfSeeker · Post by **SelfSeeker** » Sun Oct 29, 2006 10:14 am

Kathy,

Thank you for the update.

I hope you are following the doctors' orders.

Keep us update.

Hope to see you on chat again.

Catnapper · Post by **Catnapper** » Sun Oct 29, 2006 10:15 am

Hi Kathy

I have been following your thread, hoping to hear you are making progress. So glad to see that you and the doctors are untangling the knot that caused the condition. Sounds like fixing several different parts will improve the whole situation.

I always want instant reversal of anything that is bad. Unfortunately for me, and probably for you, it usually takes more than one step, and even sometimes some blind alleys before resolution occurs.

I deal better with what I know than with what I don't know. Now that I know sleep apnea was the problem, I feel like I have the tools to rebuild my health. For you, you now know what the symptoms indicate and what to do about them.

Good for you to be on the way to restored health.

Best wishes,
Catnapper

ozij · Post by **ozij** » Sun Oct 29, 2006 11:09 am

Thanks for keeping us posted Kathy - lets hope everything will get better now that the right treatment has started.

O.

SelfSeeker · Post by **SelfSeeker** » Fri Apr 13, 2007 10:55 am

Kathy,

Anymore updates.

kteague · Post by **kteague** » Fri Apr 13, 2007 2:12 pm

Selfseeker,

Wow, I was surprised to see this thread resurface. Thank you for asking.

About the disability - It's been almost a year and I'm told it could be another 18 months before it gets to the level of a hearing. Managed to maneuver and keep my apartment till now - in the process of moving, but I'm ok with that. Even sort of a sense of freedom. (like that old song that said "freedom's just another word for nothing left to lose..." I've already sold almost everything I own to get by.) This is just another phase of life, and I have too many friends and family to ever be on the street. It was just time for me to face reality and I choose to not burden others financially just so I can be more comfortable.

About the heart - Yes, I have to watch the salt and take my meds to stay flushed off, but the interesting thing is that I see a DIRECT correlation between number of hours each night on the mask and the degree the swelling has gone down overnight. Give the body what it needs and it helps it do what it is supposed to do. Oh, lost 15 pounds since my peak. Just feel like doing more.

Apnea Treatment - Took me a very long time to experience truly restful sleep. Funny, but until I experienced it, I didn't really know what I was missing. I was so surprised when it happened, but now it is the norm. Attribute a large part of that to my mask, much to just getting adjusted, and part of it to the need to retrain my brain after probably over 20 years of sleep inefficiency. I still wake up frequently during the night, I think mostly due to limb movements. But the time I am asleep has gotta be the best thing this side of heaven. I am diligent in wearing my mask, even for naps. Doze off without it on rare occasions.

Shortness of breath - Further testing has shown I have lung issues, and much of my shortness of breath is due to reduced lung capacity (using 75%), so the fluid was exacerbating that. Will be getting a CT scan soon to check for fibrosis. I've been complaining of this shortness of breath for over 10 years, but nothing showed up on the lung xrays till recently. Distant history of inhaling large amount of formaldehyde in a lab accident may have finally caught up with me. We'll see.

PLMD - Currently seeing a new doc at Movement Disorder Center who has sent my file to a Toronto doc for consult. Should hear back from that by next week. Currently not medicated for it, and my daytime sleepiness is worse again, but the side effects just weren't acceptable to me. I'm hopeful a fresh look by new docs will result in better options. If I can get this straightened out in conjunction with my effective apnea treatment, there'll be no stopping me!

Sorry I haven't been in the chat room much lately (did stop in the other night). Part of it is due to practicing better sleep hygiene. Part of it because the more I sit at the computer, the more my legs swell. Part of it because I just didn't want to be a whiney hiney. Everyone here has been so supportive, and I would have never experienced this degree of recovery without you all. (Oh, I am great compared to a year and a half ago!)

Again, thanks for asking. For those who are struggling, don't give up. One day you might wake up and feel like you just came out of anesthesia. Then you'll be convinced you did the right thing to keep on keeping on. No matter how broke I got, I would never sell my machine! That I truly never want to have to live without.

Kathy

Kathy

brackstone · Post by **brackstone** » Fri Apr 13, 2007 2:23 pm

Very sorry to hear about your Diagnosis.

Before I got diagnosed for Sleep Apnea I had an EKG and Echocardiogram done because of my accelerated heart rate.

BobF4 · Post by **BobF4** » Fri Apr 13, 2007 3:05 pm

Kathy,

Great to hear you are doing better!

I know about sitting in front of a computer all too well, since I do it 8 hours a day as a computer tech.

Bob

tangents · Post by **tangents** » Fri Apr 13, 2007 4:46 pm

Kathy -

Got scared because I thought this was a new thread! SOooo glad to hear that things are turning around. You have such a

BIG HEART

that we want you around forever. (Big as in kind, not enlarged )

Mask	Humidifier

Additional Comments: 15,332 hours on old machine (RemStar Pro with C-flex; received 3/3/2003, retired 10/5/2010)

Don't assume you know what's wrong! Update on old thread

Update

A blast from the past