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Permalink Reply by sleepycarol on May 4, 2009 at 4:36pm

Donnalyn,

You have to be the one to be proactive for YOUR health. Not much we can say or do that will help, unless YOU are motivated to want to get better.

I do believe in previous posts that you had discussed having sleep apnea but were reluctant to follow up. Many of us have tried to help you in understanding the need for further evaluation, titration study but apparently nothing was followed up on.

There are NO miracle cures. Only by being proactive and wanting to get help is going to help you. Much like a diabetic that won't take their insulin or follow their diet -- there are consequences. My mother was a diabetic and insulin dependent. The last few years of her life, she refused to take of herself. She ate what she wanted, when she wanted it. Didn't take her insulin on a regular basis. She paid for it in serious health issues that may have been prevented if she would have followed up.

Decide what you want for yourself and follow through.

I know I may sound harsh -- but that is basically what it boils down to.

I know for myself I am doing now what I need to do in order to help my health. It isn't easy -- it can be difficult, but I do feel better and that is my ultimate goal.

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Permalink Reply by Melinda Hertel on May 4, 2009 at 4:46pm

Hi, Donnalyn. I saw your tweet on twitter and thought I would read your full note. I am a sleep apnea patient, but I also work with a sleep specialist physician, and we have a patient who also has sleep apnea and pulmonary hypertension. It is very important for you to use CPAP with a diagnosis of pulmonary hypertension. With PAH you need all the oxygen you can get. And obstructive sleep apnea reduces your oxygen intake. Improving your oxygen intake with CPAP will help your heart and lungs not have to work so hard to get oxygen to all of your body. I hope that helps. If you have other questions I would be glad to help you get the answers you need to the best of my ability.

Melinda Hertel

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Permalink Reply by Judy on May 4, 2009 at 5:19pm

Hi DonnaLynn. Its time for you to wake up and smell the coffee. I smoked, I have COPD, I have pulmonary hypertention and I have OSA. Fortunately, aside from the pulmonary hyperension, my heart is healthy. My BP is still good and my cholesterol, etc. still good. No diabetes and kidneys still healthy. I was started on CPAP in Oct 06 and switch to a bi-level in Mar 08. Acclimating to xPAP wasn't the easiest thing I ever tackled. But I've encountered lots worse things. I had a really rough first 30 nights on CPAP and another 2 months of very gradual improvement before I was sure that CPAP really was helping. I'm very grateful for the good sleep I have now. I'm glad to be rid of the exhaustion and mind-numbing fatigue.

By the way, I hardly consider an angiogram of the heart to be "routine". Stress tests, echocardiograms, carotid dopplers, yes. But an angiogram?? They were pretty darn certain something was going on w/your heart and/or arteries before they would order an invasive test such as an angiogram.

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Permalink Reply by Mike on May 4, 2009 at 5:54pm

just came across this study and thought this excerpt important for you to see, Donnalyn:

"Cyclically depriving mice of oxygen - researchers call this "chronic intermittent hypoxia" -- in a way that simulates obstructive sleep apnea gives them pulmonary hypertension. Pulmonary hypertension, which can be life threatening, is a condition in which the right side of the heart has trouble pumping blood because of resistance in the lung's blood vessels." (excerpted from http://www.physorg.com/news160673771.html)

In other words, the apnea caused your pulmonary hypertension. it's a no-brainer that treating the apnea will help you control the hypertension. take control and make sure you get on CPAP yesterday!

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Permalink Reply by donnalyn on May 5, 2009 at 12:59am

hello judy, thank you for taking the time to reply. i had doubts about the cpap,which is the reason i waited and looked into it. i read some good reviews and then i read some very bad ones.. at the time they told me i needed to go for the second night of the sleep testing i was not sure it was for me. i seriously doubted the effect it would have on my daily breathing.
i did not go "routinely"as i mistakenly said., i went for the angiogram after my cardio doctor suggested it after a visit to his office telling him i was having some pain in my left arm and chest... he had originally told me it was my"weight" and at first suggested i needed to lose 100 lbs..(which was true, however not the answer for right away now)!
then when i complained of arm pain., and still having shortness of breath., he told me to go for another angiogram. ( i had one two yrs prior and they found nothing at all).
he felt i had angina.that is why the test was done.,
while he was putting in the stents he was able to see the lung artery and that it had allot of pressure in it...
after i was in post op, he came to me and told me i had something called pah... i had no clue what that was... he explained it as best he could. told me to follow up with my lung doctor as soon as i got out.. he felt i needed a ctscan , and maybe another lung function test. i had one 6 months earlier.
i have an appointment in two days. i will tell the pulmonary doctor what happened., as he does not know i was had the stents put in.
hopefully, he will tell me what i need to do., and i will do it., reguardless!.. i am making another appointment with the sleep study center also.
i am not too sure what the differances are in lung conditions., such as copd, chronic bronchitis,pah,ect all....however, i must do whatever it is i have to to feel better.
in the meantime., i know i need to be willing to do almost anything i can to get a better quality of life., at this point., i am suffering... and i have no support system.,
i will keep you updated after this week of doctor visits.
thank you for your time and concern.., sincerely, donna digiacomo

Judy said:

Hi DonnaLynn. Its time for you to wake up and smell the coffee. I smoked, I have COPD, I have pulmonary hypertention and I have OSA. Fortunately, aside from the pulmonary hyperension, my heart is healthy. My BP is still good and my cholesterol, etc. still good. No diabetes and kidneys still healthy. I was started on CPAP in Oct 06 and switch to a bi-level in Mar 08. Acclimating to xPAP wasn't the easiest thing I ever tackled. But I've encountered lots worse things. I had a really rough first 30 nights on CPAP and another 2 months of very gradual improvement before I was sure that CPAP really was helping. I'm very grateful for the good sleep I have now. I'm glad to be rid of the exhaustion and mind-numbing fatigue.

By the way, I hardly consider an angiogram of the heart to be "routine". Stress tests, echocardiograms, carotid dopplers, yes. But an angiogram?? They were pretty darn certain something was going on w/your heart and/or arteries before they would order an invasive test such as an angiogram.

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Permalink Reply by donnalyn on May 5, 2009 at 1:06am

thank you so very much for your informative letter., i appreciate your taking the time to give me some of your information on sleep apnea and lung hypertension,, i had no idea of pah.. until my cardio doctor told me i had it!! the pulmonary dr., told me i had moderate copd and chronic bronchis., i have been on all type of inhalers and nebulizers, ect., nothing helped.
maybe now that i have pinpointed what i have exactly ., i can get all the right help.. i will go for the sleep apnea study, treatment., and whatever else it takes to make me have at least one day of feeling good..
apprediate your care and concern., will keep you updated.,thank you., and god bless., donna digiacomo

Melinda Hertel said:

Hi, Donnalyn. I saw your tweet on twitter and thought I would read your full note. I am a sleep apnea patient, but I also work with a sleep specialist physician, and we have a patient who also has sleep apnea and pulmonary hypertension. It is very important for you to use CPAP with a diagnosis of pulmonary hypertension. With PAH you need all the oxygen you can get. And obstructive sleep apnea reduces your oxygen intake. Improving your oxygen intake with CPAP will help your heart and lungs not have to work so hard to get oxygen to all of your body. I hope that helps. If you have other questions I would be glad to help you get the answers you need to the best of my ability.

Melinda Hertel

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Permalink Reply by Mike on May 5, 2009 at 1:17am

Donnalyn left this by accident for me, but it was for the whole community:

"thank you all., i am sorry if i sound somewhat ignorant of all of this., it is just that i do not have a support system and i feel very alone. making decisions seems almost impossible sometimes.
i now know what i have, and i am going to do all the things i need to . hearing about apnea., and pah was fairly new to me., and i was afraid.
you all made me see why i need to follow up with the whole program.weather i like it or not..
very thankfull, donna in las vegas"

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Permalink Reply by Judy on May 5, 2009 at 8:19am

Right on, Donna!! You've got the right attitude and are getting w/the program now. You are going to do just great. A new PFT, not just a spirometery, and maybe even an ABG should be in your future to pinpoint the extent of your lung function, even a Six Minute Walk Test. You might also ask your pulmonologist about any Pulmonary Rehabilitation programs in your area. PR can really provide you w/the information and support you need. They might even have an EasyBreathers or other COPD support group in your area. Ask your sleep lab about any sleep apnea support groups in the area as well.

When I finally decided to tackle the medical profession again w/my problems they really put me thru the mill. Full PFT, Six Minute Walk Test on room air followed IMMEDIATELY w/an ABG and on to an in-lab sleep evaluation PSG (and in my case my first echocardiogram). I'd had a regular stress test, a carotid doppler, a couple of nuclear chemical stress tests, a stress MUGA and NOTHING showed up except mild MVP we'd known about for years. It runs in my dad's family and he was the youngest of 8 to die at 79 so that was never a concern. They couldn't even hear it unless I was laying down when they checked for it via stethoscope. Yet that echocardiogram immediately pinpointed the pulmonary hypertension. The cardiologist never thought to order an echo - my sleep pulmo/critical care doctor was the one w/enough smarts to order it.

Not being one to do things the easy way, altho the in-lab sleep evaluation PSG went well and I managed to sleep 5 1/2 hours, the in-lab sleep titration was an entirely different matter. I only managed to sleep 42 minutes out of 6 hours bedtime so had to go back for a second in-lab titration. Whoopee. I only slept 98 minutes out of 6 hours bed time. Still it was enough to order a CPAP for me. By this time I had been reading up and education myself in the apnea support forums and I made it clear right up front I would NOT ACCEPT anything less than a fully data capable CPAP and I made sure I knew which ones WERE fully data capable and which weren't. The first local DME supplier tried to pull a snow job on me and delivered the CPAP on a Friday afternoon. As I looked it over it didn't take me long to figure out it was NOT fully data capable. NO Respironics w/Plus in its model name is fully data capable. Monday morning I called the DME and told them I was returning the CPAP to them. They told me I couldn't return it w/o my doctor's order. HA! WRONG THING for someone I am paying to tell me! I was sitting it on their desk w/in 20 minutes! And 1/2 hour after that I was at my sleep lab to complain. Some phone calls were made and I left w/an order for another local DME supplier to provide me w/a Resmed S8 Elite w/EPR (fully data capable).

But I wasn't over doing things the hard way yet! That would be too easy. My first 30 nights on CPAP were the WORST sleep of my life - other than the 2 in-lab titrations. It took 3 mask exchanges, 2 pressure changes, a 3 week loaner APAP, a battle w/the DME supplier over a heated humidifier for the APAP, and yet another pressure change before I was finally sure that CPAP was gonna work for me and I saw some definite improvement. I probably have gone thru a dozen masks before finding the one that was RIGHT for me.

A year and a half later I was brought in for an in-lab bi-level titration and then I REALLY started seeing drastic improvement. Until the sleep doctor decided I should be using my bi-level in straight bi-level mode. *sigh* That didn't work out well at all. So another in-lab bi-level titration (I can sleep thru them now w/no problem), a pressure change and a chin strap for my high leak rate and I'm doing GREAT - as long as I stay in auto mode. Spontaneous bi-level mode still isn't working for me. But who cares as long as auto mode IS!!!!

You would do well to call your insurance company now and ask them what local DME suppliers they are contracted with. Hopefully you will have the option of more than one, just in case. That gives you more bargaining/negotiating room to get the equipment you want - w/in reason, of course. Most insurances require us to "fail" CPAP therapy before they will pay for a bi-level except under certain specific situations.

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