Tag Archive for cpap

I have some hope

A lot has happened since I last wrote something. After many medical tests and 4 or 5 trips to the University of Pittsburgh Medical Center (UPMC), it has been determined:

  • I don’t need to drag an oxygen tank around even though my blood-oxygen saturation drops with physical activity. I’m right on the edge, but on the good side.
  • I’ve been suffering from a bit of pulmonary hypertension (PH).

After several discussions with my local pulmonologist and my UPMC pulmonologist, I was referred to a PH specialist with an appointment the following week. It’s  weird to think I have three lung doctors now in addition to the asthma/allergy doctor, two ENT doctors, and a primary care physician. Anyways, the PH doctor is great. She is very smart, appropriately aggressive, and a very good listener. For at least a couple years I’ve had different symptoms no one has seemed too concerned about until now. This doctor seemed to think they were significant. Blood work, another sleep study, right heart catheterization, and a stress test with nuclear imaging were ordered with a follow up in a couple months.

  • The stress test sucked. You know those funny Youtube videos where some unlucky soul is recorded falling off the back of a treadmill? Well that almost happened to me. They hooked me up with an EKG and pulse oximeter, then put me on a treadmill. Both the speed and incline were increased at regular intervals with blood pressure readings. What’s that? No one has ever taken your blood pressure while running from zombie’s in a forest? Well if you can imagine it, that is how it felt. At some point I was to tell them when I was about done, and then they start a 30 second timer. I couldn’t just stop, I had to finish out the 30 seconds. During that time I hit the “asthma wall” and almost fell off the back, but two doctors shoved me forward at the last second to avoid treadmill-road-rash.
  • The right heart catheterization (RHC) was the following day. I was a bit worried they would shave half my beard, but they were able to work around it. I’ve had more uncomfortable medical procedures, but the RHC wasn’t too bad. There is a 60-90 minute recovery time to make sure the puncture site on your neck doesn’t open up. I felt absolutely fine and didn’t quite understand why I couldn’t drive myself home until Liz picked me up and I passed out 30 min later. I later found out they give you a sedative to make sure you don’t move around too much afterward. This helps prevent your wound from opening.
  • I was glad to do another sleep test because I’d been feeling like the CPAP wasn’t doing its job even though the stats on my CPAP machine said otherwise. Turns out I was correct. Results showed I was waking up too often and my oxygen levels were dropping during sleep.

I had that follow up with my PH doctor last week and was surprised at what she had to say. She started me on Lasix (furosemide), also known as pee pills, after the first visit. They help to remove excess fluid in your body and I felt like they were doing some good. I was expecting to hear something like, “You’re fine, no PH, we don’t know what’s wrong with you, and stop taking the Lasix.” It turns out the RHC did come back normal, but my doctor was quick to point out I had been on Lasix for a week. I hadn’t told her, but I peed out 15lbs worth of water before the test. Her summation was my poorly controlled obstructive sleep apnea (OSA) was causing increased hypertension and diastolic heart failure. Those two things had caused me to develop pulmonary hypertension. This is why I have been constantly out of breath, exhausted, and low on oxygen.

So the plan from here is to continue the Lasix, and take care of the OSA in hopes that will take enough stress off my heart and let things calm down to “normal.” Unfortunately my insurance has been fighting the BiPAP order for a few weeks now which is quite frustrating. I just want to sleep and not feel like crap all the time. It is pretty cool to think they may have finally figured out what’s wrong with me though. Always be willing to ask questions of your doctors and do your own research if possible to help inform yourself.

If you feel like interacting with me or want to ask asthma, etc. questions, feel free to find me on Instagram – @asthmageek. In the past few months I’ve found new friends from the UK, Brazil, Canada, and all over the U.S. I’m always willing to chat as I seem to often be awake in the middle of the night.

I also need to give a big shoutout to BreathinStephen for hooking me up with Dr W at UPMC 3 or 4 years ago. I don’t know where I’d be without them.

Pulmonary Hypertention Part 2

After looking for pulmonary hypertention (PH) since 2010, the last echo showed a significant increase in pressure. My doctor didn’t specifically say I have PH, but he added it to my list of conditions. It also appeared on the list of “what ails me” when I was in the hospital. Since March or May the following symptoms have become more frequent:

  • Short of breath
  • Low oxygen saturation
  • Coughing
  • Headaches
  • Dizzy or lightheaded
  • Chest pressure
  • Chest pain
  • Wheezing
  • Heart racing or pounding
  • Exercise intolerance
  • Swelling in extremities / retaining water

This doesn’t feel like asthma. I talked to my doctor about it today and he suggested pulmonary rehabilitation. I think that’s a great idea, but am not confident it’ll fix everything. I have had a long string of exacerbations, infection, exacerbations, hospitalized, more infections, etc. So yes, I have had problem after problem this year. What’s been most concerning is how everything wears me out and leaves me panting. Yesterday I put my pulse oximeter on and went outside to get the mail. My oxygen saturation went from 95% to 89%. I repeated it today and went from 95% to 87%. We’re not talking about a hike or any sort of elevation here. I’m just walking at a normal pace to the end of my driveway and back.

The only thing that seems to really help is my CPAP. If I’m struggling to breathe and feeling a lot of chest pressure/pain, an hour or so on CPAP will give me some relief. The past seven days I’ve spent an average of 12hrs a day on CPAP. I don’t know what I’d do without that machine.

I talked to my doctor at UPMC and they want me to see someone at the Pulmonary Hypertension Center there. Unfortunately I probably can’t get it paired with my appointment next week, but I think it’s a good idea to see a specialist. I just need to be able to function without feeling like I’m gonna keel over. In the meantime I’ve been doing a lot of reading and making some new online friends.

CPAP Mask Liners

There’s a new-ish product out there for us CPAP users to help masks seal against your face, and avoid those red marks and sores. I give you the mask liner:

remzzzsnasalcpapmaskliner

This past month I’ve been using RemZzzzs mask liners for my Comfort Gel Blue nasal cushion mask and love them. When I’m not feeling well, I’ll use my CPAP even when not sleeping just to get some breathing relief. As many of you know, the extra mask time can really irritate your face. Last summer I got some bad sores from using a mask too much and I’m not really sure what else I could have done about it. I regularly clean my cushions and mask, and was careful not to over-tighten the headgear. It’s the simple combination of time and pressure that can turn coal into diamonds. The mask liner will create a barrier between the cushion and your face, create a uniform surface to help create a seal, and soak up moisture or natural oils from your skin.

I’ve tried to do this on my own in the past. Liz gave me the idea to fold up a piece of toilet paper. It kind of works, but isn’t shaped correctly and I could only do this across the bridge of my nose. The mask liners are made to perfectly fit your mask.

I purchased a box of 30 mask liners on Amazon for about $25. These aren’t the cheapest of things, but if used only when needed, I’m sure you could make them last. I talked to my cpap supply company, National Sleep Therapy, a few days ago and they can sell me mask liners but insurance will not cover them at this time. If you’re not sure about spending the money, the RemZzzs website does have a link for a free trial.

One other trick I’ve done is to have two different masks. Along with the Comfort Gel Blue nasal cushion, I also have a Nuance Pro nasal pillow. I’ll either switch up the masks every other night, or just wear the one that feels best. If my sinuses are clogged up at all, the Nuance is going to be the toughest to handle. Then when I re-order supplies every 90 days, I alternate between the cushions and the pillows so I always have some for each mask type.

I have a full beard and was warned from the start I’ll have trouble finding masks with a good fit. I bet I could wear a full-face mask with a liner.

May is Asthma Awareness Month

May is asthma awareness month. My sister likes to celebrate her birthday for an entire month, so I’ve been trying to share all month about asthma on facebook, twitter, and instagram.

My month has been ok. My little dude ended up in the ER with bronchiolitis again. As time goes on, his breathing resembles mine more and more. Fortunately it’s very episodic for him and only flares up every few months. A few duonebs, some pulmicort, and prednisone fixed him up. It’s interesting to watch him expend as much energy as possible all the time. Even when he’s having trouble breathing, he’ll move and move and move until he ends up lying on the floor.

Speaking of “lying on the floor,” I had a “moment” myself a few days ago. I wasn’t feeling too great and was lying down while the kids watched a movie. The little dude was pretty active, like a spider monkey, as usual. He was kind of climbing on me, and before I knew it, he was jumping on my chest. That triggered some major coughing and wheezing which ended in me crawling towards my medicine, getting too worn out, and lying on the floor for a long time. I was eventually able to get to my meds and noticed my oxygen was 85%. In the moment, these sorts of incidents don’t seem like a huge deal. Afterward, they do seem a bit more serious. I know I’d be exponentially more concerned if I witnessed this happening to someone else.

A couple nebs, magnesium, allergy meds, five hours on CPAP, and some more albuterol had me mostly ok in 24hrs. I should have used an epipen or gotten help. That’s easy to now, but in the moment all i can think about is, “I don’t want to go to the hospital.”

At the moment I’m outside of Pittsburgh and will be visiting my other lung doctor at UPMC tomorrow. It’ll be interesting to see where my PFTs are at and things have changed or stayed the same. A year ago I found out I have idiopathic restrictive lung disease on top of everything else. It’d be really cool if things were better.

Am I the only one that has to pack three times as much medical stuff than clothes on trips? I feel a bit ridiculous sometimes, but I assure you it’s all necessary.

Using a CPAP when sick

Using a CPAP and wearing a mask on your face can be difficult even when you’re feeling 100%. When not feeling well, compliance can be a problem for even the best of us. Wearing your CPAP when sick is even more important because your body is relying heavily on sleep to get better. Here are a few things I’ve learned or discovered that can help me stay compliant.

Sinus rinsing

The thought of using a neti pot or similar product seemed awful and disgusting. I even avoided using one for about 18 months even though my doctor insisted and provided me with multiple samples. Once I finally found some courage to do it, I was shocked at the benefits – and all the snot that came out.

I use the NeilMed Sinus Rinse bottles. It’s a squeeze bottle which allows me to control the pressure when I’m clearing out my sinuses. It’s a good idea to use filtered or distilled water. I get my water from a Brita filter I keep in the refrigerator, so I usually microwave the bottle with the cold water for 30-40 seconds so I don’t experience brain freeze.

I think the packaging suggests one rinse a day. My doctors have instructed me to rinse twice a day, especially during allergy seasons which last March to November for me. I often have a period of “good sinuses” and forget to keep rinsing, only to go to a regularly scheduled doc appoint and be told I need to get back on track. It’s especially important when I’m sick.

Don’t let your sinuses dry out

Humidify your CPAP – There are several ways to assist this problem. I use a heated humidifier with my CPAP. Once I used it without in a dry, dusty hotel room. My sinuses were so messed up I had major nose bleeds eventually resulting in me shoving a tampon up my nose. Yeah, I realize that probably sounds odd, but the cheap, singly-ply toilet paper in the room seemed to dry my nose out even more and wasn’t really absorbent.

If you experience rain-out, too much water in your mask, try adjusting your humidifier setting to something a little lower. You might also inquire about a heated hose with your CPAP supplies provider.

Drink more water – Drinking water can also be a big help. I try to drink a gallon of water a day. It doesn’t always do the trick, but it helps with a lot of things.

Moisturize your sinuses – An allergy doctor suggested I get saline in a spray bottle for my sinuses, or try out Ayr sinus gel. It was helpful, but seemed not to have any long-lasting effects. It reminded me of cough drops or chapstick – once you start, it’s hard to stop. Another doctor suggested I try Ponaris Nasal Emolient. The packaging boasts astronauts use the stuff. It comes with a dropper and has a medicinal smell like tea tree oil. One drop of this in each nostril keeps my sinuses in good shape most of the day, if not the entire day.

Application can be a bit tricky dropping liquid up your nose. I usually lie down on my bed and tip my head back. Be careful not to squeeze too hard on the dropper or you’ll put way too much in your nose and it’ll all run down the back of your throat. After putting the drops in, I often squeeze my nose a bit to move the emollient around. If a little bit starts to run out your nose, some simple dabbing with a tissue will take care of it.

Try changing your mask

Earlier this year I was having trouble keeping my oxygen levels up, and the easiest way to feel better was to stay at home with my CPAP on. The problem I experienced was sores developing on my face from being in contact with my mask 18 hours or more a day. I started folding up a piece of toilet paper to act as a buffer between my mask and face. That helped, but it wasn’t a long-term solution. I eventually had a chat with my CPAP provider and got a different style of mask. Now I alternate masks every day to help prevent this issue. Different mask types might also help you in using your CPAP while sick. If you mask is only attached to your nose, a nasal pillow or cushion, you might try a full-face mask. Many like them because you can breathe through your mouth or nose.

Clean your CPAP

Probably the easiest thing to do is make sure your CPAP, and its replaceable parts, are clean and replaced on schedule. Leaving a dirty filter in your machine won’t help you at all if you have allergies. You should also be rinsing your mask parts out, and emptying your humidifier reservoir daily, and washing them with warm water and soap weekly.

SoClean_2

Towards the beginning of this year I decided to invest the money in a SoClean 2 unit. Each morning, after I wake up, I simply place my mask, with hose attached, into the cleaner. The machine runs on a timer, similar to a programmable thermostat, and starts up when I want it to. The cleaner runs for about 7 minutes and then needs two hours before you use your CPAP again. It even sanitizes your humidifier reservoir allowing you to keep whatever water you had from the previous night. The cleaning unit costs around $300, which I admit is expensive, but the peace of mind and ease of keeping my CPAP clean is worth it for me.

Have I left anything out? What do you do that helps? I’m always interested in learning what others have done and what helps. I didn’t mention this above, but you should always check with your doctor or CPAP provider if you’re having any trouble with your equipment or usage. If one or both of these are unresponsive or not helpful, consider finding a new one if possible. I’ve sacked several doctors and durable medical equipment providers over the years for not providing the level of service I need.

Tree pollen is kicking me in the lungs

It’s definitely that time of year again. The trees are twitterpated and spreading their pollen all over the place with little regard if people like me even want their powdery, yellow/green gift. My nose runs, I sneeze, my eyes burn and swell; I cough, my throat hurts, my skin turns red, and I wheeze; I get headaches and it’s hard to breathe.

In talking with my lung doc he’s fairly certain I’m getting mucus plugs in my airways as well as swelling and inflammation. They’re trying to keep me off prednisone so for the time being I’m taking vitamin C, vitamin D, and magnesium. The magnesium seems to really help with the wheezing. I also picked up a couple incentive spirometers which I use daily to help “pop my airways open.”

It’s kind of like breathing exercises and would benefit anyone. Many recognize these as “those things you breathe into at the hospital.” Right now I’m keeping one at work and another at home. It’s kind of like a reverse peak flow meter. It’s interesting to see on the days I feel really bad I’m only able to inhale 1500 to 2000 ml and on good days I’m able to do more around 3000 to 3250 ml.

My larger goal in all this is to stay out of the ER/hospital. There have already been times I probably would have gone in several years ago, but now with my added experience and know-how, I’ve learned how to deal with it at home. I think I’ve had six times so far in the past month where my allergies have become so bad to significantly affect my breathing. I’ve found the trick is to take lots of antihistamines, relax, and chill with my CPAP on for as long as possible. It has resulted in some pressure sores/lesions on my face, but I’ve figured out how to avoid those as well. How’s the allergy season going for you so far?

Wear your CPAP

If you suffer from sleep apnea or a similar conditions which requires you to wear a CPAP/BiPAP/APAP, it is very important you do. It always shocks me when I talk with friends who are supposed to be wearing their mask at night but instead choose to put it in the closet, etc., because they don’t like it. Personally, I’d rather not sleep than sleep without my CPAP and last week unfortunately proved that for me.

It was Saturday morning/afternoon and I was out in the living room watching TV. The next thing I know, Liz is yelling and yelling at me to wake up. I had unintentionally fallen asleep for 90 min or so on the couch. Little cat naps aren’t supposed to be a big deal, but they are for me. I felt awful and was having trouble functioning. I made it to my room and got my mask on. Later that evening I walked to the kitchen to get some water and my O2 sat was down to 81%. I then spent three of the next four days like this:

20150301_124101

In addition to getting nothing done and missing some work, I also now have a sore on my face from where my mask rests. I’ve gotten red marks before from having my humidity turned up too high, but this is worse. I’m sure the best thing for it would be sunshine and open air, but I have to put my mask back on every night. My CPAP cleaner does a good job of sanitizing everything, but I’m not sure what to do about the sores on my face. I am thankful my oxygen levels are back to normal and I’m not constantly short of breath.

Automatic CPAP cleaner

I think it’s fair to say most CPAP, BiPAP, Auto-PAP, etc., users dislike having to clean their equipment. If you’re like me, you think about it right before you need to use it. I’d been hearing good things about the SoClean 2 from Better Rest Solutions, and decided it would be a good idea to try it out.

Price
The price is a bit on the expensive side. I got mine from National Sleep Therapy with a coupon code and that helped. I’ve been having so much trouble with colds and other viruses, I thought it was worth trying. Luckily I had FSA money to use.

Functionality
The unit includes a short instruction manual that made it quite easy to figure out how the SoClean 2 works. My CPAP has an attached humidifier and there are directions for those with or without humidifiers. There are also additional instructions for those with heated hoses. The SoClean 2 can run on a programmed scheduled, or be ran manually. It comes preset to clean at 10am. After I wake up in the morning, I place my mask into the cleaner, shut the lid, and it’s clean when I come home.

How it works
I’m no scientist and therefore am unable to accurately describe exactly what happens. The SoClean 2 uses activated oxygen to clean your mask, cushion, hose, and humidifier. It runs for 5 to 10 minutes, and then you must wait 2hrs before using your CPAP again. With all my breathing issues and winter woes contracting sickness from everyone I’m around, the last thing I need is my own medical equipment perpetuating sickness. There are some comments about a smell from the cleaning process, and I read one review where it was described as a swimming pool/chlorine smell. That kind of makes sense, and I want to point out it doesn’t bother me at all. It doesn’t stick around very long. It is suggested you run your machine for 20 seconds or so to clean the smell out. All I know is that if I’m lazy and don’t clean my mask/cushion for a week, the smell from that is much, much worse than what the cleaning leaves behind.

Recommendation?
I would definitely recommend this unit if you have the money to spend on it. There are some replaceable pieces you do need to take care of every six months, similar to replacing parts of your nebulizer or CPAP. The cost isn’t too bad, currently $30 gets you the replacement kit from Better Rest Solutions. You can still clean your machine as usual with soap and water. I’m finding this convenient, time saving, and it gives me piece of mind.

 

Hudson Made: Beard and Shave

The hair on your face needs to be washed just like the hair on your head.  I’ve used shampoo from time to time, but that usually results in dry skin, “beard dandruff,” split ends, and annoyance.  Often I can skirt this problem by just thoroughly rinsing it out in the shower, but eventually that doesn’t cut it either.  On top of this all, I live in an area with hard water and this can add to the flakiness as well.

For the past month or so I’ve been cleaning my beard on Saturdays with Hudson Made: Citron Neroli Beard & Shave Soap.  I was hesitant at first to try this seeing one bar of soap costs just over $20 for 3.5oz.  The reviews were amazing though, and I decided to give it a whirl.  I am also leaving the soap in a container by the sink so as not to lose any by attrition in the shower.

Hudson Made: Citron Beard Soap

The first time I tried the soap I ran a little water through my beard, lathered up a little bit of soap on my hands, and then applied it to my face.  The soap didn’t really lather up much at all, which was surprising because the most common comment about this soap was the insane amount of lather it generated.

The following week I thoroughly soaked my beard at the sink and made sure to use warm water.  This time instead of trying to lather soap on my hands, I dipped the soap under the water and then immediately rubbed it across my beard.  The amount of lather generated was impressive.  This soap can double as shaving soap, you know – the kind you mix up in a little mug with a brush.  After making sure my entire beard is soaped up and massaged a bit, I can either rinse it out at the sink or take a shower.

Another type of soap many people suggest trying is pine tar soap.  I’m quite hesitant to use it because I’ve heard it smells like a wet campfire.  Call me cautious, but that would probably irritate my eyes, sinuses, airways, or just make the bathroom reek.  This soap is made with cedar and citrus essential oils, and isn’t overly strong.  Another concern I had was the scent of whatever soap I started using could be an overpowering scent on my face all day.  That hasn’t even remotely been a problem.  If I cup my hand over my mouth and nose, and breathe in, I can kind of smell the soap for a day – and that’s it.

One other benefit to soaping up my beard once a week is it helps with CPAP beard.  Some people exhibit a bad case of “bed head” upon awaking.  I tend to get CPAP beard from the straps of my mask pressing against my face all night.  Rinsing my beard out in the shower, applying a little beard oil and combing it in the morning mostly keeps it in shape.  It just looks slightly more disheveled day after day by the end of the week though and the deep cleaning gets it back to normal.

After one-two months of use I can hardly tell the soap has even been used.  I wouldn’t be surprised if this lasts me a year.  I’d like to try out some other soaps because I have found some in the $10 or less range, but I’ll probably wait until this current bar is much more used before purchasing something else.

CPAP as a possible asthma treatment?

I came across this article tonight where continuous positive airway pressure (CPAP) machines are being used to treat asthma

CPAP for asthma – http://www.news4jax.com/news/cpap-for-asthma/25308408

This is interesting to me for several reasons, and it reminds me of one of my ER visits last year where the respiratory techs, there were two working together that night, asked if I used a CPAP and if it ever helps when my asthma is acting up.

CPAP machines are generally prescribed to those suffering from sleep apnea.  They force air into your respiratory tract through a mask that covers some or all of your face.  The air forces your airways to stay open helping the patient to breathe better, sleep better, stay asleep, and keep their oxygen levels from dropping.  Another treatment option for some suffering from sleep apnea is surgery to cut away extra tissue and open up the airways.  While this may work for some, it’s not a guaranteed treatment and has the risk of complications.  This is why using a CPAP machine while sleeping is a relative easy and effective solution.

Many asthmatics take one if not many medications to help control their condition.  Those with asthma often have secondary conditions (such as GERD, obstructive sleep apnea, allergies, high blood pressure, hay fever, sinusitis, rhinitis, vocal chord dysfunction, and anxiety or mood disorders) that work together to complicate everything.  These medications have side effects that can sometimes make one feel just as bad as not taking the medication.  An easy treatment such as a CPAP could be a great solution for some.

I’m not sure on all the details of this study, but being an asthmatic who also has obstructive sleep apnea, I wonder if any of those being studied have both conditions.  The good news is the American Lung Association (ALA) is involved and it sounds like they are looking for people to participate in the study.

ALA Research protocols currently recruiting – http://www.lung.org/finding-cures/our-research/acrc/protocols-recruiting.html