I have pulmonary hypertension which they claim isn't that bad. I also have sarcoidosis which doesn't help. I'm not really being treated for either and it very frustrating. Seems all Pulmonologists are hung up on cpap as a cure all.
I view my CPAP as a preventative measure not a cure. Sleep apnea can cause stress on the heart. Not using my CPAP is how I got PAH.
I use CPAP but my exhale breath is weak. Doctor recommending bipap. CPAP only a year old and expensive so use your money on bipap. Dr told me CPAP is for people with sleep apnea and have healthy lungs. Bipap is for people with lung problems. Was not told this to start with. Hope this will keep someone from wasting their money like I did.
dmedwick: Have you had a right heart cath? That is the definitive test for PH or PAH. If you haven't, they may not be sure of your condition. And it may be that you are not progressed enough for treatment. What was your pressure? Anything over 25 is considered high, but there are grades. 25 is of no real concern unless it is combined with another illness. My pressure is 79. That is very high. Anything over 50 (as I understand it) is concerning and should be diagnosed one way or another with a right heart cath. An ECHO is indicative of the pressure in your vein going from the heart to the lung but it is not definitive. If your pressure is over 25, get your doctor to explain at what point you should be treated. I do have a CPAP and oxygen at night. I can go 2-3 nights without it and not feel any effects, but I don't chance more than that. Our trips are usually week-end junkets, so I don't travel with the equipment. I've been on a CPAP since 2004 and I'm so used to it, I don't mind it. I'm sure it is considered one of the first lines of defense for PH and lots of other problems. If I were you, I'd button hole my doctor and get my numbers. If he is not willing to help you or cooperate, get another doctor. There are heart doctors who specialize in PH but they are thin on the ground if you don't live in a city. If you have high numbers, get your doctor to explain things to you and answer your questions. If he can't or won't do that, you need to find a doctor who will. The only way to know if a CPAP is helping is to have a sleep study so they can compare the numbers to the original sleep study. It doesn't sound like your doctor is concerned about you at this stage. I do not take any of the medicines for PH yet. My heart medicines are taking care of me just right, so far. My lung doctor told me I was on the right medicine for me. If things get worse, then we will have to re-visit the problem. Everyone is different. This disease is manageable with the right care. Try not to worry or get anxious, it will only make things worse. Remember that when things get really bad and you are at your wit's end, there would be someone who would gladly trade places with you. Our own problems are always worse until you have a good look around. That is when you know you are grateful and thank God for your problems and not "theirs". Please stay in touch. Let us know how things go. Demand information from your doctor. They can get so busy that they forget we aren't stupid and need information rather than a palliative pat on the back, and a "there, there."
You’re more than welcome dmedwick!!
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