Sleep apnea & PH?

[jen-cueva]

Hi @brendad53, I’ve known some who have improved after treatment for sleep apnea, but uncertain if the cause of their PH was uncorrected sleep apnea. But it makes sense, indeed.

Here are a few other posts where some share their sleep apnea experiences; maybe they can offer some of their experiences.

Sleeping Tips For PH and Sleep Apnea

New Member Seeing PH Treatment and Sleep Apnea Advice

Obstructive Sleep Apnea Affects Cardiac Function of CTEPH Patients

My apologies as I can’t offer my own experience on this topic. But I’m hopeful that others can.

[brenda-denzler]

Thanks. Interesting info.

[Susi Steppins]

Hi @brendad53

I am an example of developing PH because of sleep apnea.

I didn’t know I had sleep apnea but apparently I had it very badly for a long time and my oxygen levels were so low that it has damaged my heart and lungs.

I truly thought that my lack of oxygen at night while I was sleeping were punishment for my sins of the past.

I was a smoker for many years and even after years of being smoke free I was still gasping for air at night and just thought that it was likely the way it would be for me.

Is this what caused your PH?

I now am on oxygen 24/7 and sleep with a cpap maching/ I will tell you that I sleep so much better now and I can actually take deep breaths while lying down in bed.

[brenda-denzler]

Several years ago I was told I was borderline for sleep apnea (obstructive). I didn’t attempt to correct it other than to try not to sleep on my back, which I was kinda doing anyway. I was also sleeping propped up a bit at night, but only because my sinuses close up when I lie flat. So I put an extra pillow under me.

Recently had another sleep study done. Moderate for sleep apnea (obstructive). Thing is, I now sleep normally in a semi-sitting position with my legs elevated to let the fluid run back out of them and with my back elevated to help my diaphragm expand more easily and effectively. The results of the test reflect a “moderate” level of OSA under those elevated conditions. So….

I will probably be on some kind of PAP machine at night, now. I was reading something about OSA and got the idea from the article that it could be the cause for developing PH. So I wanted to inquire further of you folks who have been down the PH road.

I’m not diagnosed with PH…yet. So it may be that this inquiry isn’t even relevant, because I don’t have PH. If I do have it, I guess I’m trying to figure out the exact reasons why I should be kicking myself in the posterior over it—if anything I did contributed to the diagnosis. Sleep apnea that went undetected and then untreated for too long? Changes I wanted to have in my radiation plan for inflammatory breast cancer that wound up impacting my lung tissue worse than anticipated? Growing up with a father who smoked, ergo second-hand smoke exposure? Or just dumb bad luck?

It sounds good to be able to lie flat in bed and take a deep breath. I can’t do that.

[jen-cueva]

Hi @brendad53, it certainly sounds like you’ll benefit from sleep apnea treatment. If it’s a cause of your possible PH or not, it’s something that certainly should be addressed.

Do you have an adjustable bed, or do you sleep in a recliner?

You have so many unanswered questions. Hopefully, you’ll get some parts of the puzzle figured out in a few months in Boston.

I’m grateful that the links and Susi’s sleep apnea experience were helpful. Take care and enjoy a lovely week ahead with your fur baby.

[brenda-denzler]

I know. I’ve been resisting a CPAP, but it may be time to stop resisting. Hearing Susi’s experience helps me feel just a bit better about accepting it.

And yes, I have slept with my head elevated for decades–because when I lie flat, my sinuses close up! Now I use a Breathe Right strip, AND I sleep with my upper torso at a 35-45 degree slant, AND I sleep with my feet and lower legs at about the same slant so the fluid can drain out of them at night. In other words, I sleep in the shape of a V!

A lot’s hanging on Boston. I’m going to have to ratchet my expectations down before I get there. You know what they say: Blessed are the pessimists, for they shall never be disappointed! 🙂 (And, I might add, at times they experience pleasant surprises.)

[jen-cueva]

Hi @brendad53, you wouldn’t address the sleep apnea while you wait for your Boston appointment? You have had testing to show you probably need it. Was that done locally so you can check with that doctor or your PCP? You may find some relief while you wait, anyway, from that.

I realize that so much depends on your Boston trip. That makes sense. But it’s a few months away still. Hopefully, with that much time, you can work on your anxieties and try to go there with an open mind. What if you tried to think of it as your first doctor experience and have no expectations or history. Yeah, I know it sounds easier than done, but in steps, maybe. Honestly, I don’t know how you hold it together after holding on this long for a diagnosis.

[jen-cueva]

I’m posting this as @brendad53 had difficulties posting. Here’s her response-

“Yes, I am addressing it, Jen. I’ve agreed to talk to the sleep specialists about what kind of CPAP I might need and be able to live with most comfortably. (I mean, if I don’t use it, there’s no point in having one, right? So we need to make it as do-able for me as possible.) But things are backed up here like they are in Boston. I’ve had to wait for 7 months to get the Boston appointment, and I’m waiting about 3 months to get the appointment to talk to the sleep specialist here locally. However, when you read the above re: sleep apnea, read it with the sound and image of me grousing and grumbling, not lilting and happy! ???? It is taking a long time for a diagnosis. Been trying to figure out what is going wrong since at least 2011 (if not 2010). And all the while I just keep getting a little worse and a little worse and a little worse. At this point, I ask how far I’ll have to walk. If it’s too far, I simply can’t do it. Just like you. And I’m on the verge of asking for a handicapped hang tag for my car. It sounds great to have a handicapped hang tag…until the point in your life where you really do probably need to have one. At that point, I find it a less attractive and I keep resisting asking for it. Who knows? Maybe a CPAP will make me feel enough better that I won’t very often feel the need for a tag? I wonder about my breathing and heart racing, etc. And fluid build-up in my extremities, etc. And I wonder if it’s because of the radiation I had during cancer treatment. I asked for a modified radiation plan, and the rad Onc told me the modified plan was pretty much as good as the original. And in an article I’ve read in the last year or two, the kind of plan I asked for was shown in a study to give somewhat superior results. But did it harm my heart? My lungs? Is it my fault that I just kept getting worse and am now at the place I am? Because I wanted something other than what the radiation oncologist had planned for me originally? Am I ”bad” for having wanted something different, and am I now paying the price for that? Those thoughts are hard to get rid of, right now. It feeds in to my self-loathing for having medical PTSD. At the end of my cancer treatments (which is when I first realized I had medical PTSD–when I got cancer), I loathed myself very, very deeply. I wasn’t a ”good patient.” I didn’t just meekly accept whatever the doctors said. I asked too many questions. I had too many ideas about what I would and could not find acceptable in the treatment plan they assumed I’d just go along with silently. I was deeply, deeply appalled at the barbarity of modern cancer treatment. I was a bad person. A bad patient. And I wanted to die. Ironic, no? So these questions I have about what I did to wind up where I am now, in terms of my physical health, all feed into that ”bad patient” cr*p that beat me down by the time my cancer treatment was over. And of course, if my not having gotten a CPAP years ago when I was told I had borderline sleep apnea has now caused me to have these symptoms, again……. Sigh. Aren’t we glad I’ve been in therapy since cancer? Imagine how screwed up I’d be if I weren’t! ????”

[jen-cueva]

Hi @s-steppins, it hurts my heart to know that you blame yourself and felt that your breathing difficulties were punishment. We all do things that come back to us at some time. We aren’t so proud of many things, but we deal with the cards giving and move forward. Give yourself some grace that you did stop smoking; that’s no easy feat.

I’m grateful the oxygen and CPAP help you breathe and sleep at night. I bet you wake up feeling more rested than before, too. Do you? Most I hear say that about CPAPs and BIPAPs. Do you need to elevate your head to sleep? I have an adjustable bed and sleep on two pillows while using my oxygen. I was tested for sleep apnea, which is not an issue; my oxygen drops when I sleep and other times.

Thanks for sharing your story with @brendad53; I know she appreciates it.

[Colleen]

@s-steppins my heart hurts too hearing that you blame yourself for your health concerns.

I think most people have a habit that isn’t good for them but we all take the risks. I sympathize with your thoughts though. I’ve had my, “this is what I get” moments too. It’s an unfair thing to do to ourselves!

I’m happy to hear Cpap and oxygen have made a difference in your life! Sharing that information might inspire others to proceed with those options if a doctor recommends them.

[Dawn]

Hi@brendad53, I was diagnosed many years ago with sleep apnea – after some gentle but persistent pushing by my therapist to be tested. I’ve had issues since my teens with no matter how much sleep I got I woke up feeling like I hadn’t slept at all.  When I finally got the sleep study done to check for sleep apnea they found for every hour I thought I was getting sleep I was actually only getting about 15-20 minutes due to the apneas. My heart rate was going low enough during those periods that they told me I could have easily died in my sleep.  On my most recent check in about two weeks ago, I’m down to an average 26 seconds of apneas per hour. I definitely feel the difference when I wake up each morning!  And, I don’t worry about not waking up when I go to bed because my heart rate stays where it needs to be with the cpap.

I was diagnosed with sleep apnea before I was diagnosed with my ph, but my pulmonologist tends to lean toward my limited scleroderma being the main cause of my ph. I never smoked in my life, but both parents did. My doctor tells me they can’t really say 100% what caused the ph.

It took a while to get used to the cpap machine, and I used to give myself one night a week without using it because I love sleeping on my stomach and that doesn’t work well with the cpap.  I moved to using it every night and even if I take a nap on the weekend it’s in bed with my cpap on. It’s the easiest I breathe all day, and I don’t have to use extra pillows etc. Without the cpap I can’t lay flat on my back because I get so short of breath.  One suggestion I’d make, if you tend to sleep with your mouth open, try a full cpap mask rather than the nasal pillows. I tried the nasal pillows, used a chin strap, and even used bandaging tape to tape my lips shut but still ended up with my mouth open. When my sleep apnea provider convinced me to try a full face mask I was hesitant but now I love it. The other thing would be to try xylimelts if you use a cpap and find that it makes your mouth dry overnight. My machine has a humidifier, and with the xylimelts I don’t have the dry mouth issue.

While I’m right there with anyone who questions what they did to cause their issues, what they did to ‘deserve’ what they’re dealing with now, I know from my own experience that that thinking just pulls me down and makes things even more difficult. I question why I let myself gain back all the weight I’d lost years ago, why it’s so hard to lose it again when I know it would help my breathing and my arthritic knees. I’ve been working very hard lately on self-compassion. I can’t change anything in the past, and there are reasons that explain why I find some things so difficult to do even when I know it would be good for me. Doesn’t mean I can’t/won’t do those things, it just means I make it harder on myself. I don’t want to deal with all the health issues I’ve got, and sometimes I still think ‘why me’. Then I think ‘why NOT me?’. I think it’s just ‘my turn’ in life to deal with something I’d not choose if given an option.

I don’t know if any of that helps anyone, but know you’re not alone with all the self questioning etc.

[Dawn]

So, I was just reading a post from a couple years ago about having ph & an autoimmune disease. I’d posted that my ph doctor wasn’t totally sure what caused my ph, but felt it was likely at least somewhat due to my long undiagnosed/untreated sleep apnea.

Feel free to ignore what I said above about my ph likely being from my limited scleroderma. I don’t really know what caused my ph, nor does my ph doctor.  I know he’s also mentioned the limited scleroderma as having contributed to the ph as well, but happening upon the other post means I’m really not sure.  Felt I should point this out in order to be up front about the answer I gave above. Keeping track of all this stuff, timelines, causes, treatments, on and on, gets to be very confusing and tiring!  Didn’t mean to post something that may not be the absolute truth, though.

[brenda-denzler]

That’s cool, Dawn. I also have an autoimmune issue, and they say that once you have one autoimmune condition you are at increased risk for developing more. So PH from sleep apnea…or some as yet unknown autoimmune thing? Either one is possible, for me, I guess.

[jen-cueva]

Hi @dawnt, thanks for sharing your experiences with sleep apnea and scleroderma. I also love your new goal of self-compassion; we could all be a bit more gentle with ourselves.

Take care of yourself.

@brendad53, unfortunately, many with autoimmune diseases tend to develop others once they have one. It sounds like you could have sleep apnea and some autoimmune disorders. Hopefully, you’ll get more answers to try and put this complex puzzle together when in Boston.

[Colleen]

@dawnt a lot of what we do on the forums is think out loud. We share what we are told and what we presume to understand about the information. You previously shared what you had come to believe at the time and now you have updated us on what you know now. Thank you for sharing both. In a way noting changes in information or thought could possibly help someone else.

It’s good to hear from you. I hope you have been feeling more sun than cloud these days!

[Debbie Moore]

I was tested for sleep apnea about a month ago.  My doctor said I’m borderline and he would normally not pursue it, but because I have PH he wants me to try the CPAP.  I go the end of August for the fitting.  @brendad53 I also sleep in a wide V.  My sinuses give me trouble if I lie flat, and I think my legs benefit from being up.  My ankles look normal in the morning. I do miss sleeping on my side.

I’ve never wanted to live my life again to make better decisions or to live my life differently.  I’ve think it has made me who I am, and I am satisfied.  Until recently. Thoughts of what I could have done better, wiser, sooner, etc keep haunting me. So I’ve been trying to look at what I think I want to change about the past and see if I can do anything about it now.  And that brings me full circle back to I am who I am.  The past is the past.  I don’t like having PH, but it doesn’t change who I am or the decisions I’ve made because of who I am.  So I guess I’m satisfied.  I must say I am so thankful to have found all of you.

[jen-cueva]

Hi @debbie, thanks for sharing your experiences about sleep apnea and PH with Brenda and us all. I have an adjustable bed as I can’t lie flat. It’s been our best investment. I can sleep in a V and on my side. But I know a CPAP and BIPAP mask makes it a bit more complicated. I use an oxygen cannula at night.

I love your new outlook on the past; I’ve often tried to look at things in the past. I look ahead. Some are saying about not looking in the rearview mirror of life; that’s what I try to think about. As you mention, we are who we are because of what we’ve been through; PH is all part of who we are. I’m proud of who I am now, too, PH and all. Ironically, I’m working on a new column and being proud. I’ll share it next week when it publishes. Keep showing yourself that grace and love; we could all benefit from your points.

BTW, did you already do your beach vacation?

Just so you know, we are grateful you found us, too. You’re such an important part of our PHamily here.

[Debbie Moore]

Came back Friday from the beach @jenc.  It was great – restful, saw family and friends, and went in the pool.  My sweet husband holds my POC while I get in.  I so miss swimming.  Took my air cylinder on the beach.  I was concerned about the POC getting sand in it.  Overall a good trip!

[Colleen]

@debbie it sounds like you had a much deserved and needed, nice time! I’m so happy to hear it!

[jen-cueva]

Hi @debbie, it sounds like a great fun beach trip. I’m so happy that you and the family could plan such a nice getaway, so much deserved.

Aww, I love that your hubby is your POC holder, too. Manny has been there to do that more than a few times. Isn’t it awesome to have such a supportive partner? We are fortunate.

Did your air cylinder last long enough at the beach? Did hubby drag that along, or do you have the smaller ones you can carry in a backpack? I have those I use at times. They just don’t last very long.

Thanks for the update; this makes me smile.

[Debbie Moore]

@jenc One was enough, but it was on full.  It was on empty when we came back.  Wayne rolled it around for me.  I don’t think the small ones would get me from the parking lot to the beach!

I had a lady come in the store one day.  Her husband carried her POC around for her as she shopped.  I don’t think I’ll ever manage to get my sweet man to do that!

Are your doctor appointments almost done for the month?

[jen-cueva]

Hi @debbie, I’m happy to hear that your one tank was enough for the beach. I sometimes cut it close, but with my POC, I charge it as we drive. I carry my backup battery if we are not where I can use that.

LOL, I don’t recall Manny carrying mine while shopping. But, if it’s like a mall or large place, he pushes me in my wheelchair for shopping.

Yes, I believe I have one minor appointment next week. It’s a check-up, so nothing big and should be quick. It’s crazy that it’s almost August already.
How’s the shop’s summer business going?

[Debbie Moore]

Hi @jenc!  Glad to hear the doctor visits are almost finished for the month.

Business is slow for the summer.  I guess tourists aren’t traveling as much.  I still have the business for sale but not takers yet.  I think the economy is not helping.  I may liquidate.  I don’t want to do that, but I am exhausted. I’ve worked every day this week.  I’m swollen.  Really fighting fluid.  I must be on my feet too much.

[jen-cueva]

Oh, @debbie, my heart goes out to you. I can only imagine how challenging it is in this economy to sell a business. It’s sad, but I think you’ve realized that your health comes first. You will do whatever is needed to make it your priority. That’s a huge step for you, and I’m incredibly proud of you.

Yes, it certainly sounds like you’ve been on your feet too much and overdoing it. What can we do to best support you? I am keeping you in my thoughts and prayers, and I know you’ll do what you think is best for you and your family.

You and I both are thankful the appointments are almost made. Next week is a skin check which I’ve been putting off.

Hopefully, you are home with your feet up and relaxing this weekend. After a busy beach trip and working all week, it’s time. Did you have a lot of swelling when you traveled?

[Debbie Moore]

@jenc I’m actually at work right now.  I’m getting ready to close; had a couple of stragglers.  I’m still swollen.  Wasn’t so much at the beach. Surprising with all the seafood I ate.

I hope your skin check goes well.  From the discussions I’ve read I’m making an appointment with my doctor to look at a spot or two.  Doesn’t hurt to be safe.

[jen-cueva]

Hi @debbie, is today a rest day? It sounds like you need to get those feet up and chill some.

Oh yeah, I love seafood, too. Now I’m swollen after eating popcorn at the movies this weekend. It had been over two years since we went, so I wasn’t missing that popcorn. But I am paying for it now. So, I took extra diuretics that I have for increased swelling.

Thanks for the positive thoughts. Yeah, it’s more a preventative check that has been pushed back a few years. I may start doing it in October when I usually do an annual pap and mammogram. It’s my birthday month, LOL.

Take care of yourself, my PHriend.

[Debbie Moore]

Happy Birthday @jenc!  Nothing like getting another year older and wiser.

What movie did you go see?  We saw the new Jurassic movie when we went to the beach.  It was pretty good.

I rested this morning looking at photo albums with my granddaughter.  Then I had to go to work.  Yesterday I canned peaches.  I was exhausted and swollen afterwards.  I did too much on my feet.  I took an anti-inflammatory before bed.  I remember the doctor saying no more anti-inflammatory medicine.  I can’t remember why, but I needed it.

[jen-cueva]

Thanks, @debbie, but you’re a few months early. I meant I scheduled those appointments in October since October is my birthday month and easy to remember.

We saw Maverick this weekend. I bet the new Jurassic Park was good, too. It had been so long since we had been to a movie theater.

Debbie, I bet that was fun looking through the photos from the beach with your granddaughter. But it doesn’t sound like you’re still long at all.

The problem with taking NSAIDs, like ibuprofen and naproxen, etc., is that they can add to the swelling from fluid retention, and also, if you’re on any blood thinners, these are usually a No No, too. Many PH teams suggest taking Tylenol as needed instead. But you may want to check with them.

Are you taking anything to help your swelling when it gets worse? Otherwise, they usually suggest watching diet, fluid intake, and elevating your feet.

[Debbie Moore]

Sorry for the early birthday wishes @jenc.  I misunderstood. I don’t want to make you older before your time!

Tylenol really seems to do nothing for me.  But I’ll go that route first before I pop an anti-inflammatory again.  I don’t need to swell more.

I just take my torsemide every day – 2 in the morning.  Nothing for extra swelling. Is there medications to slow down this disease?  I feel like I should be taking something more than a water pill and vitamins.

 

[jen-cueva]

LOL, no worries, @debbie, I’ll take the “getting wiser” any day.

Like you, I don’t like Tylenol. It upsets my stomach, so I don’t take much except my prescribed medications.

My apologies, but I forget all the history of your treatment. I knew you were on one medication for PH and taken off, correct? Or was it several PH treatments you’ve tried?

Most doctors want to start by trying a calcium channel blocker (CCBs). If that works, that’s the first treatment. Unfortunately, only a small percentage responds to CCBs. Next, they often try Revatio (sildenafil) or other oral medicine. I wish they could find something to help you stabilize and keep your PH from progressing.

Have you mentioned this increased fluid? Maybe they need to add a second diuretic or increase yours. I take Aldactone twice daily, a potassium-sparing diuretic that helps my Lasix (furosemide) work better.

When do you go back to see your PH team?

[Debbie Moore]

Hi @jenc.  I started on tadalafil and  ambrisentan and then added orenitram.  Had terrible side effects with all of them except tadalafil, but it wasn’t doing anything for me. I had more energy with the orenitram but life was not living with the side effects.  I think the doctor is removing all to see where to start next.  I have an appointment with the cardiologist in October.  Don’t have one scheduled with the pulmonologist yet, but it will probably be around the same time.

I tried the Aldactone and I thought I was having a heart attack-chest pains all day non-stop.  I had only taken half a pill.  Now it is listed as I’m allergic to it.

I just feel like time is slipping by without effort being made.  I’m the kind of person who sees a problem, comes up with a solution and fixes it.  I guess that’s the engineer in me.  I just want to make sure I’m doing everything I can, when I really don’t know what I’m supposed to do.

[jen-cueva]

Oh wow, they had you on three treatments at once; maybe that was too much for your body? I hope you can see the PH doctor. Is that your pulmonary doc, not your cardiologist?

I think you may need to be on one medicine; I wonder why they haven’t tried sildenafil (Revatio). Many can take that as a first treatment and not have too many horrible side effects. Of course, I’m not a doctor, and our bodies are different.

It sounds like you need to self-advocate and push to try maybe something again, but only one treatment for a while, and see f that offers you any relief.

I’m sorry that you are feeling defeated by this. Push for some resolution and relief. Maybe start by scheduling that appointment if your pulmonary doc is your PH doctor.

Hugs to you, as I know this can be frustrating, my PHriend.

I’m sorry you had that adverse reaction to Aldactone; that’s a horrible feeling. Maybe they can add another diuretic or increase yours to see if that helps the swelling.

[brenda-denzler]

It does me good to hear that your doctor wouldn’t normally want to do anything because your apnea test was borderline. That’s where I was with it 8-9 years ago, too. Borderline. And I chose not to do anything too aggressive about it. So your doctor’s statement makes me feel better about what I did back then.

[jen-cueva]

Hi @brendad53, you know what you said makes perfect sense. Often we need to hear others’ experiences, which helps us validate things that have happened or make decisions we made feel better. It just does somehow; it’s a form of validation. I’m happy that it offered that to you.

We are often too hard on ourselves, and this helps.

[V.R. Peterson]

@brendad53 I’m so sorry you feel as though any of this is your fault, whether for choosing a particular cancer treatment or not starting CPAP when your doctor told you that were had borderline Apnea.

For what it’s worth, I don’t think anybody deserves a disease or symptoms like what you’re experiencing, no matter what choices they’ve made in the past. I think it makes more sense to let the doctors figure out what’s wrong, and then go onto getting the right treatment so you can feel better. I call that growing where I’m planted. If I didn’t get enough fertilizer when I was first planted, then I can start by getting the right mix of fertilizer right now. Those “what ifs” can ruin us if we let them. Just my .02.

[brenda-denzler]

I know, Mama Bear. I try to walk a fine line between taking personal responsibility for things I could have or should have done (or did), and acknowledging that sometimes things just “are” and there’s no point in trying to assess responsibility.

[V.R. Peterson]

I do hope you get answers soon. You deserve that much.

[jen-cueva]

@mamabear007, I love your “O2”! I’ll have to remind myself of that “growing where I’m planted” mindset.

Yes, I do hope that @brendad53 gets such well-deserved answers soon.

Thanks for sharing that with us; such an important yet practical way of thinking.

[Jimi Mcintosh]

I was told that PH and sleep Apnea could be associated, but at that time  most doctors were not trained on PH , took for ever to get a diagnosis. I have progressed from a CPAP to a BIPAP and it does aid somewhat in sleeping

[brenda-denzler]

Has it helped your PH? To use a CPAP? Has it helped your PH?

[Jimi Mcintosh]

I agree CPAP and BIPAP’s do help the patient, my wife spends time adjusting my mask or making me turn over, she claims that itt disturbs her.  The machines work, finding a mask that works for you is the challenge. I currently use the “Dream maker”.,

[brenda-denzler]

Can you explain what you mean by “the machines do work”? They work to oxygenate the sleeping person. Of that I am fully aware.

However, do they “work” in the sense of “make my PH symptoms while awake better”?

 

 

[jen-cueva]

Hi @jimi, I’m grateful that you found the best sleep apnea treatment. Many who use either a CPAP or BIPAP wake up more, feel less fatigued, and improve PH symptoms during the day. What has been your experience as far as PH symptoms?

Of course, it all depends on our bodies, our stage of PH, and other coexisting conditions, @brendad53. But, if it were me, I would try it if there were a chance it may help. I realize that you want to wait until after you hear what the doctor in Boston has to say after your tests.

[brenda-denzler]

Oh, I do plan to try a CPAP or BIPAP, Jen. Regardless of the Boston test outcomes. The sleep test alone indicated that I should be using one, and I’ve been monitoring my O2 while I sleep, etc., and I realize that it’s true. I hate it like heck. I don’t want to wear such a thing. But if it’s really best to do so, I’ll give it a try.

The idea that wearing it might improve any possible PH symptoms is just gravy. 🙂

[jen-cueva]

Hi @brendad53, I have to tell you that I’ve seen positive changes in your mindset since you first joined us. You’re more open-minded and I’ve noticed you seem a bit more hopeful. That’s impressive, and I applaud you, my PHriend.

I’m confident that @mamabear007 has helped you turn this slight curve with her loving support.

[brenda-denzler]

I agree. Having Mama Bear to listen to me whine and wail and be anxious for so long, and yet she remains steadfast and comforting…..an invaluable resource for me. A gift for me.

[V.R. Peterson]

@brendad53, I haven’t listened to you whine and wail. I’ve listened intently to your valid concerns. ????

[jen-cueva]

Well said @mamabear007, I love that you remind @brendad53 that she has valid concerns. But I’m grateful you both have one to lean on and us all here. It’s certainly helpful for me, I know.

Thanks for sharing your experiences and concerns and for your support here. Cheers to a great new week.

[Jimi Mcintosh]

BIPAP is different because it changes the Air flow based on your requirements.  Finding a mask that work for you is a challenge. I must have about 16 mask.  Sleep aids the body in healing.  Get a sleep study, lose someweight and watchyour diet . I just added Covid-19 to my ailment along with dialysis.  I should write a book on this journey

[Colleen]

@jimi oh no, I hate hearing that have been hit with Covid! How bad are your symptoms? It’s seems like numbers are increasing of people I know who have avoided Covid but have come down with it now. I haven’t had it yet and the new cases I’m hearing about are making me nervous.

[jen-cueva]

Oh no, @jimi, I’m sorry to hear that you’ve caught the COVID bug. How are you feeling? It’s so frustrating and scary to think we are moving forward, then bam- you keep hearing of new variants and cases among PHriends and loved ones.

I’ll say an extra prayer for you and your family. Did anyone else catch it in the family? Gentle hugs are coming your way- from a distance.

[Randolph Reynolds]

Good humor from @debbi on the other column.   I’ve had a CPAP for my sleep apnea for many years (my supplemental oxygen feeds into it.).  I can identify with the booger bit because even with moisture in the machine they stop up my nose.

Many people can’t stand having a mask on but I got used to it after I got the right one.  My wife is now on a BIPAP machine.  We make a lovely pair at night.

Before I had to go on full time oxygen I’d travel with the CPAP and a concentrator.  Lots of voyages that way.  They both fit nicely into my checked luggage.

 

[jen-cueva]

Hi @ripple76, I bet you and the Mrs. make a lovely pair. At least you have found the best machine and masks for each of you. That’s the number one complaint I hear the masks are uncomfortable. Too often, the respiratory therapist or doctor neglects to educate them that various types of masks are available.

I think, like everything else, it could take some time to find the best fit. I think about it like a nice fitting pair of jeans. I only have one pair, LOL.

Would you say the benefits that you’ve both found are worth it from the boogers?

[Barbara A Perry]

Hello! I have had a sleep test for sleep apnea and have been told that sleep apnea has contributed to my PH. I must sleep on my side without any apparatus.

[jen-cueva]

Hi @braysgemstone, did they not order a Bipap or Cpap machine when they diagnosed you with sleep apnea? Do you use to sleep with oxygen or nothing at all?

Did you ask your healthcare team why they didn’t order a machine to help your sleep apnea? Are you seen at a PH clinic? It would make sense if your PH is possibly linked to sleep apnea they would try and help with the sleep apnea.

[Barbara A Perry]

After sleep study, I only stopped breathing four times while sleeping on my side, ten times while sleeping in my stomach, and twenty-one times while sleeping on my back. No, I am not on oxygen or sleep apparatus which I am grateful for. I trust my pulmonologist that the cardiologist recommended, and I’m glad she did. He’s terrific.He’s helping me find out what is causing PH. I see him again in November.

[jen-cueva]

Hi @braysgemstone, my apologies, I misread your original post. I thought you were saying your PH was caused by sleep apnea and it is left untreated.

Now, it makes a bit more sense, hence why you sleep on your side. I’m grateful that you have both a cardiologist and pulmonologist you trust. Is one of them a Ph specialist, by chance? I hope they can give you more answers when you return in November.

[jen-cueva]

For those of you who have PH with sleep apnea, I wanted to share free resources from PHA. This free p[arytient brochure offers information on what to expect and why sleep apnea and PH are often connected.

Click the link below to download your free brochure.

PH and Sleep Apnea -PHA

Did you learn anything that you want to share?

[brenda-denzler]

Picture me grumbling and swearing under my breath, Jen. Not only is mild PH apparently associated with sleep apnea, but so is a higher risk for stroke—which my Dad just had. (He also has bad, BAD sleep apnea!) I am trying to get supplemental nocturnal oxygen rather than a CPAP, because I really HATE the idea of a face mask. And for that matter, having a CPAP means a reduction in the options I have for where I want to sleep. My bed? The couch? The rocker?

[jen-cueva]

Hi @brendad53, I can imagine some choice words you were grumbling under your breath as you read that information. I thought of you when I was sharing it, too.

How is your dad doing post-stroke? I didn’t realize he also has a terrible case of sleep apnea. Did he leave it untreated for years?

I understand you have this aversion to facing masks. Have you looked into the newer micro CPAP machines? I don’t know anyone who has used one, but I have seen images of a few that could be possible for you if they disagree with supplemental oxygen at night. Where are you at with this process so far?

[brenda-denzler]

I have supplemental nocturnal oxygen approved. When I was going to get it, my dad had the stroke and I had to go to KS, so couldn’t get outfitted with the O2. Now the process has had to be started all over again, but I feel confident that I will get it. Eventually.

A canula, yes. I think I can tolerate that. A full facial mask? Not a fan.

Yeah, Dad had CPAPs, but hated wearing them and for the most part didn’t use them. He also has a-fib and a pacemaker, so clotting risks from that, too. He is on Eliquis to control clotting, but only took it (apparently) on the days when he felt like he needed it. But not on other days. <<big eye roll here>>.

[jen-cueva]

Hi @brendad53, I’m hoping you’ll get the O2 soon. Did the doctor send your order to a durable medical equipment company? Maybe you can call this week and see how to “get this ball rolling.”

Like you, I tolerate the cannula, but masks are not my thing. It makes me feel like I’m suffocating on top of my SOB from PH. I will do nebulizer treatments but use a handheld.

Ugh, I relate to the eye-rolling of your dad taking his Elequis only when he thinks he needs it. My mother does the same, but with her BP meds and without ever taking her BP. I’ve bought her 2 BP machines. How the heck can they tell? SMH

What can we do? They are grown and have a mind of their own. I’ve told the doctors and nurses that my mom is often uncompliant when I’ve taken her to appointments. Now, she won’t allow anyone to go in with her. I call and have them note things on her chart that I think are important. She always knows which daughter has called when she is at appointments or has been in the hospital.

It sounds like you maybe be a tad stubborn like your dad. 😉

[DeLois Tweedy]

I have sleep apnea and use a cpap at night. I’m sure it helps with my PH too, but also with my heart failure. I was stopping breathing quite a lot when I had the sleep study, and this was making my heart work harder than it already was with the heart failure. I am a bit clostrophobic and worried abt being able to use a full face mask. I talked to my pulmonologist and he ordered one that is very minimal, but gets the job done.

I know it has helped me, so I am very faithful to wear it every night. The importance of using it has been stressed to me by my cardiologist and my pulmonologist.

It usually makes my nose stuffy and my mouth/throat soooo dry. I find that inside my mouth actually sticks together. Yuck! But…another one of those things we have to do when we have PH and/or heart disease.

[jen-cueva]

Hi @deetweedy, I am happy your medical team worked with you to find the best mask. When I worked in nursing over 18 years ago, we had several then, so many newer and smaller sizes are available now.

I’ve heard most people using CPAP or BIPAP say, like you, it took a little time to adjust to using the masks. However, once they found the best one and fit for them, they all noticed how this benefitted them.

For dry mouth, etc., I came across these suggestions (link below) that I thought you, @brendad53, and other members who use CPAP machines.

CPAP machine tips

You’re correct, Dee! Thank you for sharing your experience with Brenda and us all. We do what we need to do to help us feel our best and enjoy life.

[DeLois Tweedy]

Jen, thanks for the link to the cpap tips. After reading them, I realize I have finally gotten the best suited mask for me. And yes, this did involve getting a smaller one. I have the one with nose pillows and after getting the right size, it doesn’t bother me very much. Because of PH, I sleep on my back (mostly in a recliner) and don’t move around much, so mine is a good fit. It also has the ramp up feature.

After wearing mine for almost 3 years, I can’t imagine being without it. If I do fall asleep without it, I will wake my self up either snorting (lol) or jumping/jerking – guess that’s when I stop breathing 🤪

[Colleen]

@brendad53 for what it’s worth, my husband swears by his cpap machine. In fact, those I know who really use theirs have said it has really improved their quality of sleep and even in many ways, their life.

Some examples of what went away when my husband started on cpap years ago – he no longer gets acid reflux, headaches aren’t as frequent and he’s not as prone to bronchitis as he used to be. Yes, the machine is awkward and does some getting use to but once you do, you find more comfort from it than anything.

I know it’s hard but try not to dwell on the should have, could have, would have’s. You have enough going on in the present to focus on.

You have been through a long journey to finding a diagnosis. “When” it is found try to trust what is recommended from there. I believe most doctors really want to help their patients and treat according to what is best for them. I keep praying for your diagnosis and an excellent doctor you can advocate well with.

[brenda-denzler]

Nice to hear re: your husband’s CPAP. I have two friends who report similar benefits. So I’m hoping that the hassle will be worth it for me, too.

As for doctors, I will say that I have been positively impressed with my local pulmonologist and with the pulmonologist I will see in Boston. I have reason to think that they have (1) listened to me, (2) believed me, (3) not diminished or dismissed what I tried to explain to them, and (4) are trying to cover an important base in ruling in or out the idea of PH.

[jen-cueva]

Thanks for sharing your husband’s experience with his CPAP. I’m grateful that he has had some improvements since using it. If I hear any complaints from those who use them, it’s an adjustment and the trials of finding the best fitting mask.

Yes, I pray that @brendad53 will get some much-deserved answers in Boston. She certainly has been through a challenging and frustrating journey. I’m hopeful this team will offer her some trust. Your determination is inspiring, Brenda.

[Colleen]

@brendad53 you deserve doctor’s you an trust and it makes me happy to hear that you have finally found them! It makes all the difference in the world, doesn’t it?

[brenda-denzler]

It does. A doctor has to earn my trust. I don’t give it implicitly and unconditionally. But once he or she has earned it, even later snafus and missteps on their part can be overlooked. So far, once I’ve come to trust a doctor, no doctor has ever screwed up badly enough to make me withdraw that trust. And you’re right, it makes a WORLD of difference.