sleep apnea and pulmonary hypertension any hope???

I was diagnoised with sleep apnea and at the same time saw the pulmonologist who then diagnoised pulmonary hypertension. I have the shortness of  breath and edema but was under the impression that a lot of this was due to my obesity. This was 2+ years ago. Since then I have struggled with the CPAP. I have tried every mask and no success. I am EXTREMELY claustrophobic and have finally fallen asleep a few times with it on from sheer exhaustion only to wake up having pulled off the mask(even when I taped it to my face). I then tried the BIPAP and full face mask that was suppossedly supposed to help with the claustrophobia. EVEN WORSE. Through it all I have actively tried to increase my diaphram breathing and used my oxygen religiously. Now I over hear two people in the doctors back area talking about Pulmonary hypertension and the life expectency rarely being over 3 years. I am devestated. I have looked online and find a varying array of Short life spans. I am in the last steps of approval for GSV; thinking it would hopefully help my sleep apnea, need for 24 hour oxygen as well as other things. I have always felt I had a good relationship with my PCP and Pulmonologist ....now I wonder if I was wrong. Is all of the work with GSV worth it if I may be staring at a death sentence? Yes I do have a call in to my docs..but..... Sorry to rant I am really worried I have a big family and need to know so I can prepare myself and them(if that is possible).Anyone out there with Pulmonary Hypertension???Good or Bad I have found OH forums to have the most knowledgable people.So HElp.

 I don't have pulmonary hypertension, but did struggle with the mask Cpap.  I finally went with prongs - much easier to sleep and not claustaphobic.

And within a month after surgery, I didn't need Cpap at all anymore - sleeping through the night!

 Sutterbos....I have never heard of the "prongs" for CPap or BiPap. Do you mean the type that you use with oxygen? I have tried the little nasal pillows that fit into your nostrils but those really bothered my claustrophobia; plus you had to try to keep your mouth closed with those and it made my ears pop. I would love it if it was as easy as just the oxygen type nasal cannuals. I was always told you had to have a mask that sealed in order for it to work. Where did you get the "prongs"? Thanks for your information.

i just posted this Sutterbos...maybe you know an answer?

Background - I am 40, have Lupus (autoimmune disease) which gave me a lung disease. I can absorb about 60% oxygen of a 'normal' person. I do not wear oxygen anymore since my situation has greatly improved. When i sleep, my absorption falls. btw - BMI is 40.

So I do a sleep study at HRRH (during hurricane sandy!). Of course they see my levels drop, now Glazer wants me to do a 3 night test at home to measure my oxygen levels. i know how that is going to turn out.....low oxygen intake. To my knowledge no sleep apnea, although tech said i did snore (but not like a big old trucker snore), my hubby says its more like a soft purrr.

So my concern is that he will boot me out of the program! I know im probably jumping to conclusions, but im freaked out. The reason i am at 60 and not 80 is because of my weight.......takes a lot of energy for lungs to push my chest up if its heavy! My respirologist is always nagging me to lose weight and I see him next week anyway. People - at 40 BMI i would be considered a relative lightweight for WLS. Dont tell me other people dont have lung issues?? I have never even smoked. Cant they just put oxygen on me during surgery? Whats the big deal???? Anyone have a similar experience? What was the outcome?

 

 

Hi, Lupie,

I don't have an exact answer for you because every surgeon is different.   However, I do know for a fact you will be intubated with a breathing tube during surgery and they can increase your oxygen intake all the way to 100% if needed.  (the air we breathe in the room is 21% oxygen).  They'll be concerned about you after surgery as well, but again they should be able to monitor you and increase oxygen if needed.  Just make sure to have a long talk with your surgeon about the issues before surgery so they know how best to take care of you.

 

Melinda

Thank you Melinda!