Tag Archive for sleep apnea

Now I’m on oxygen

me with my new nasal cannula

Things have been a bit up and down this year. I’ve had bronchitis three times, and a bad sinus infection. Of course they all make it harder to breathe. The shortness of breath has become a big issue with almost any amount of physical activity. This past week I’ve noticed my lips turning purple or blue with some regularity.

I’ve been complaining about shortness of breath and low blood-oxygen saturation for at least a year. I have felt like medical professionals haven’t been taking me seriously because my o2 sats tend to be ok while at rest. I did end up doing an exercise desaturation test back in November where I immediately dropped to 89% and stayed there for the remainder of the test. Just one percent lower, and they would have pulled out an oxygen tank.

That did prompt some more investigative work which later resulted in the discovery of diastolic heart failure and secondary pulmonary hypertension. It was assumed I would see great improvement after 4-6 months on bipap, to address the underlying severe obstructive sleep apnea, but that hasn’t been the case.

This past two weeks have been fairly bad as I am sick again. I saw my local lung doctor’s nurse practitioner who prescribed a round of doxycycline and a short prednisone burst. My other lung doctor pushed for breathing tests and a walking test, and luckily I was able to have those done the next day.

I’m not sure what the PFT results were, but they seemed pretty surprised when my oxygen levels dropped after walking down the back hallway for less than a minute. I eventually left the doctor’s office around 3pm and had an oxygen concentrator at my house by 5:30pm.

The supplemental oxygen has seemingly made a huge difference in the past 36 hours. I’m not constantly panting, I don’t feel absolutely horrible, my brain isn’t foggy, I can hold a conversation, my voice has more strength behind it, I sat outside for an hour, I’ve left the house twice on short errands, I’ve been able to do some things with my kids, etc.

I am very interested to see if they can discover the root cause for my oxygen troubles. Usually this would be associated with fibrosis or severe obstruction in the lungs. It could be heart related, and it wouldn’t surprise me if the pulmonary hypertension is involved. For now I am thankful to be breathing more easily, and am hoping to get a piece of my life back.

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.

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.

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.

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