This topic contains 7 replies, has 4 voices, and was last updated by  Brittany Foster 5 months ago.

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  • #14294
     Kathleen Sheffer 
    Keymaster

    A few years ago I underwent a sleep study and the results showed mild sleep apnea. Between 17%  and 53% of patients who suffer from sleep apnea also develop pulmonary hypertension, according to a 2004 American College of Chest Physicians consensus panel.

    My doctor prescribed a CPAP machine, but I never got one. At the time I was overwhelmed with healthcare maintenance (on IV and oral medications) and, well, 22 years old.

    After my heart-lung transplant, my sleep improved significantly, and my snoring got much better. I thought it had gone away entirely, but my boyfriend disagrees (hah)!

    Last night I did another sleep study. It was so much easier because I am not on oxygen at night anymore, but they did try a CPAP on me. Getting a good night’s sleep is more important to me than my own vanity, but I’m not exactly looking forward to using a CPAP machine if it turns out I need one.

    My sleep doctor said I have a lot of extra tonsil tissue and that a tonsillectomy might be an option for me, especially given my age. He said he’d rather do a procedure like that than put me on a CPAP for 60 years. I laughed at that! 60 years post-heart-lung transplant? Sounds great, but not realistic.

    Anyway, I am definitely considering the tonsillectomy if he thinks I need it.

    Have you had a sleep study? Has a doctor diagnosed you with sleep apnea? Have you had a tonsillectomy or do you use a CPAP machine at night? Has treatment for sleep apnea helped you?

  • #14339
     Debra Eileen Williams 
    Participant

    I’ve had 3 of them. I’ve been on CPAP for over 15 years. When you get a study, there are usually three different kinds of arousals that will be noted: Apneas, hypoxias, and RERAs (Respiratory Effort Related Arousals). Apneas are the big, longer lasting ones, and the ones doctors seem most concerned about, but knowing hypoxias and RERAs can also be important. Apneas can cause PH, BUT PH can cause RERAs. And Hypoxias can be caused by other lung conditions. A small number of each is normal; most people will occasionally stop breathing for a second a couple of times a night. But stopping more often leads to arousals which interrupt sleep and can lead to many other health problems. If you start CPAP, look into all the different options available. Your supplier may have only one brand of machine and one or two styles of masks. But there are dozens of machines and masks available and it is important to get ones that fit you and your lifestyle. When I was first dx’d the supplier tried to give me a very big, bulky and heavy machine, and a mask that didn’t fit properly. Luckily I knew there were others available and ended up with a nice little machine that traveled beautifully, and a mask that actually fit my face. I’m on my third machine now, and have tried about a dozen different masks, from full face to nasal. So make sure you get something that suits you.

    • #14344
       Brittany Foster 
      Keymaster

      Great advice Debra!
      It took me a month of trying to get used to the mask they gave me before I learned about the different styles. My mask is very comfortable for me and is almost like memory foam on my face. It helps me at night a lot. I was having combined obstructive and central sleep apnea and was given a home sleep study and an overnight study. I’m glad I did that! Wearing my bipap is also how they noticed my apnea episodes during the day and respiratory depression leading to low oxygen. The new technology is great and we are lucky to have it.

  • #14347
     Vanessa Vaile 
    Participant

    Debra’s advice on getting just the right fit, trying on a lot of masks and looking at all the options is spot on. Great apnea synopsis too — clear and concise. The sleep studies people weren’t that great with mask fitting but the supplier I ended up is.

    Over a year ago, I had a sleep study in two parts because the first didn’t get enough cpap data — diagnosed moderate sleep apnea, restless leg syndrome, noted median oxygen level 88, low 80. I had already had oximetry, chest x-rays and echocardiogram after my primary care physician referred me to the circuit rider lung who comes to the rural district hospital every other month because annual wellness exam blood work showed more markers for restrictive than obstructive. Based on the other tests, the lung doc had already told me I had reduced lung capacity and “high heart lung pressure” (because, you know, an old person might not understand pulmonary hypertension or know how to google). Once I had the sleep study, he decided cpap,exercise and losing weight would fix everything, refused to discuss echo with me and told me he’d see me again in 6 months.

    He never ordered the cpap either — nor did I see him again. It took me over 6 months to get a cpap.

    So I’ve been on the cpap about 6 months and also live in senior where there are other cpap users, so I’ve talked to a bunch. It has helped with quality of sleep although not a fix-everything silver bullet and improved/stabilized my oxygen levels. I wake up with good numbers. They don’t necessarily hold under even mild exertion but recover fast. I sleep longer and better but still less than ideal and often sleep in the day time. It took time and effort to get used to the mask and making it a habit helps. I also figure it’s more data for the PH Center to work with.

    Asking around, informally surveying cpap use, the response varies — for some it works and really makes a difference, others saw no benefit, never got used to it or weren’t willing to make the effort. One was indignant that Medicare took her machine back because she wasn’t using (and didn’t want to). A friend with asthma (got used to it in three weeks) says it’s been life-saver. Two use it with oxygen at night (you can add an attachment to run oxygen and cpap together) and don’t need to use daytime oxygen.

  • #14356
     Vanessa Vaile 
    Participant

    Debra’s advice on getting just the right fit, trying on a lot of masks and looking at all the options is spot on. Concise apnea synopsis too. The sleep studies people weren’t that great with mask fitting but the supplier I ended up is.

    Over a year ago, I had a sleep study in two parts that recorded moderate sleep apnea, restless leg syndrome, noted median oxygen level 88, low 88. I had already had other tests that indicated pulmonary hypertension. Once I had the sleep study, the doc decided cpap,exercise and losing weight would fix everything, didn’t order further tests, refused to discuss echo results when asked directly and told me he’d see me again in 6 months.

    He never ordered the cpap either — I didn’t see him again. It took me over 6 months and another doctor to get a cpap.

    So I’ve been on the cpap about 6 months. Since I live in a senior community where there are other cpap users, I asked them about their experience as well as other users I know.

    It has improved the quality of sleep although not a fix-everything silver bullet and improved/stabilized my oxygen levels. I wake up with good numbers. They don’t necessarily hold under even mild exertion but recover fast. I sleep longer and better but still less than ideal and often sleep in the day time. It took time and effort to get used to the mask and making it a habit helps. I also figure it’s more data for the Denver PH Center to work with.

    Informally surveying cpap use — and following an apnea forum intermittently, the response varies — for many CPAP works well and really makes a difference — several recounting dramatic changes, others saw no benefit, never got used to it or didn’t use it for long. At least two here at the Manor use it with oxygen at night and don’t need to use daytime oxygen.

    I’ve read that about tonsillectomy. I had one but as a very young child. If I hadn’t, I certainly consider it.

    • #14371
       Brittany Foster 
      Keymaster

      Hi Vanessa,
      thank you for sharing all of this information with us too. I’m glad that you are able to talk with others who are in your community that use a cpap. I find it hard to get motivated enough to wear my bipap but the more I wore it the easier it became. Like you said, it is not a complete cute and my oxygen also drops quickly with exertion and recovers quickly when I stop during the day. It helps me a lot at night and I wake up feeling good after wearing it. My doctors are actually looking into having me try the NIOV machine which acts as a bipap but during the day because my ventilation is pretty poor during the day. The same pattern of breathing that I have during the nighttime actually continues during the day for me so they have found that I need more support other than just the oxygen during the day.

  • #14378
     Vanessa Vaile 
    Participant

    Brittany, interesting about drop suggesting that the night breathing pattern extends into the day. It’s hard not to get discouraged about those quick drops with mild exertion (sometimes hardly any at all).

    After years of self-managing worsening breathing problems, I’m getting into all this relatively recently. Now as an outpatient at a PH Center, serious testing that probably should have followed through with last year is finally underway.

    Both scenarios — comparing notes about apnea and CPAPs, and reading about similar follow-through and diagnosis/treatment problems others in the Forum have had underscores how helpful sharing information and support is.

  • #14381
     Brittany Foster 
    Keymaster

    I couldn’t agree more Vanessa. Having the support from this community is so valuable to me. It makes my symptoms feel heard and understood. It shows that others go through something similar and I have a group of people I can connect with.

    I’ve had years of worsening problems withh breathing since I reached puberty and started growing. It has all been downhill from there but at least they are now finding what the problems were!

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