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.

It’s been feeling a lot like August

August is always my worst month of the year. It’s hot and humid, ragweed flourishes, and I tend to get sick. This summer has been the usual with plenty of missed days, CPAP time, and breathing treatments.

My daughter picked up a cold the first or second day back at school and shared it with the family. It’s been awful. I just finished a z-pack and some prednisone, but still aren’t feeling great so my doc had me do bloodwork and chest x-rays to see what’s going on. In the past, I’ve just gotten stronger and stronger anitbiotics until the sickness goes away or I’ve ended up admitted. I appreciate the attempts to make sure it’s a bacterial infection before the unnecessary use of more medicine.

In a couple days I’ll go in for my echo. One of my lung docs wants me to be re-evaluated for pulmonary hypertension. My right ventricle was enlarged on my first echo back in 2010. I’ve had two since then showing things to be normal, which has been attributed to my strict adherence to CPAP therapy. Lately I’m always short of breath, my chest hurts, my blood pressure is often higher than normal, and there are a few other signs that need to be ruled out. I’d really love them to find something, anything. For years it has always felt like there’s something not yet diagnosed. If they found something, I could at least be treated for it and maybe not feel like crap all the time. I’d love to do normal things again.

SOB

The first time I saw “SOB” written on some paperwork I was a little offended and slightly confused until I learned it was the abbreviation for short of breath. Right now, that seems to be all I am. I’m constantly huffing and puffing while trying to do really basic stuff. I haven’t been getting much work done. Last Saturday I felt sort of ok so I did some cleaning and picking up, but then spent all of Sunday in bed and this week I feel constantly tired and exhausted.

I’ve been talking to both of my lung doctors and I now have an upcoming echocardiogram scheduled. I think this will be the 4th one I’ve had. The first one was about six years ago and showed my right ventricle was enlarged. I started using a CPAP after that which has helped the right side of my heart to shrink back to normal, but every couple years the symptoms come back. This time seems worse than the others for me. A few weeks ago I went in for my PFTs and the numbers were actually 5% better than six months ago. It seems odd to have so much trouble breathing when my lung function hasn’t gotten worse. I’m hoping to find out something sooner than later because this is really cramping my lifestyle. Just going to a store and walking around is enough to tire me out and require me to lie down for a rest.

Weird allergic reaction

I’ve heard people overly complain about a sunburn itching before and thought they were being ridiculous. It’s just a sunburn, how bad could it be?

I got my Xolair injections this week as usual. I’ve never had a reaction before and when my arms started itching, I assumed that light sunburn from the weekend must be peeling.

  • Thirty minutes later Solarcaine seemed to make it worse.
  • Thirty minutes later two Benadryl and ice packs weren’t working
  • An hour later thirty minutes in a cold shower did little to make it better

I called my doctor’s office and spoke to the respiratory therapist who had administered the shots. She thought my symptoms sounded odd and asked for a call back number so she could track down my doctor. By this time the itching had spread from the sunburn area to my entire back, arms, chest, hands, and legs. It felt like I was being bit all over by an army of ants. I say this having been swarmed by an angry ant hill as a kid once. I couldn’t sit still. My arms were shaking. My doctor said he was fairly certain this was not from Xolair and to try some antihistamines.

I take Allegra every day, and had taken two Benadryl 3 hours or so earlier, so I took two more. This took the edge off the itching. I could finally sit still and not twitch. I had never experienced something like this before so I googled insane sunburn itch and discovered other people describing similar situations. The best remedy seemed to be strong ant-histamines. A couple hours later I decided to take two more Benadryl and put my CPAP on so I wouldn’t quite breathing after passing out.

Six freaking Benadryl. I’m pretty sure you’re not supposed to take that much, but that’s what it took to finally make my body stop itching. I passed out for 14 hours or so, my AHI was 6x higher than normal, and I was groggy all the next day, but it seemed to do the trick.

I’ve decided to stop judging people for complaining about itchy sunburn.

Pulmonary Hypertension

I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:

  • Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
  • GERD (from the hiatal hernia)
  • Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
  • Vocal Chord Dysfunction
  • Left Hemidiaphragm that doesn’t move
  • Anxiety because not being able to breathe well for 25 years makes you anxious

Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.

While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.

I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:

  • a fungal mass in my lungs
  • chronic bronchitis
  • COPD
  • right-heart failure

…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.

Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.

So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.

Trying to become more healthy

My allergies have been terrible, similar to everyone else around me, but thankfully my breathing hasn’t been extremely bad. I still have my ups and downs, but it’s not constant struggling to breathe like some summers have been. I saw my lung specialist in Pittsburgh last week and mentioned my periodic bouts with low blood-oxygen saturation so I get to do a cardiopulmonary test in November. That is basically riding a bike while they take blood from an artery (Arterial Blood Gas test or ABG) to see how much oxygen and carbon dioxide is in there. This is more accurate than a pulse oximeter which is placed on a finger. Sometimes ABGs make me a little anxious because the first 2 or 3 I had were a bit traumatic. Blood is generally taken from your wrist, and if you get an amateur phlebotomist doing it…your wrist is going to hurt like hell for a month or so. These days respiratory technicians do this type of procedure and tend to do an excellent job…I just always remember those first, bad experiences.

I’ve done a little research on the cardiopulmonary test, and have talked to a respiratory tech friend of mine about it. It’ll be good to have this done because if I have any problems during the test, they can pinpoint the reason whether it be heart, lungs, or I’m just out of shape. Back in 2011 and 2012 there were two times I was told I could be experiencing heart failure, pulmonary hypertension, or pulmonary arterial hypertension. It ended up being a combination of the right side of my heart enlarged a bit, poorly controlled obstructive sleep apnea, and poorly controlled asthma.

So with all this in mind, my short/long-term goal at the moment is to work on my general health.

  1. Sleep regularly – I’m notorious for staying awake for days at a time or sleeping for hours and hours. Usually this involves bad asthma flares and high doses of prednisone. Other times I happen to be awake and need to watch just one more episode of the current show I’ve been binging. I’d probably do a little better if I had a more regular sleep schedule and got up at a regular time in the morning, whether or not I feel ok.
  2. Drink less pop – Caffeine does wonders for me at times with the side effects of not breathing well and some of the medications I’m on. The problem is I don’t like coffee or tea, and pop/soda is full of sugar. Drinking water isn’t a problem for me, I just enjoy a Mt Dew or several when the mood strikes me. In the past few weeks I’ve been switching to diet Mt Dew and Dr Pepper or sticking to water. I don’t think I need to cut it out entirely, but I could do with more moderation in this area.
  3. Exercise more – There have been times in my life where I probably exercised a bit too much coupled with active, manual labor. Nowadays I have a desk job, and sometimes I work at home which means even less walking. I do enjoy riding a stationary bike which allows me to exercise inside, avoiding outdoor allergens. For now I’d like to get back to riding 5 times a week.
  4. Be mindful of what I’m eating – I’m not an advocate of “dieting.” My personal experience, and data from clinical research shows drastic dieting rarely results in long-term results. I need to be able to eat things I like while still making healthy choices. i got a free app on my phone called MyFitnessPal. I can scan bar codes or keyword search for food items, and the app tracks all the calories and nutritional information. You can track your weight, log workouts, set goals, and receive reminders. There are also periodic challenges if that helps motivate you. One feature I find particularly cool is data from Google Fit syncs with this app to add calories burned from exercise to the equation.

So with all of this, hopefully I’ll lose some of the weight I’ve put on in the past 3 years from prednisone, a hypothyroid, and sedentary life style. Anything I can do to improve my cardiovascular health is also a bonus for my breathing issues. After a couple weeks I’ve dropped a few pounds. If I can make this a habit and keep with it, I’m excited to see where I’ll be in six months.

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.

Trayvax Axis Review

I tend to use a wallet until it is falling apart. I like to get my money’s worth out of them. Around Christmas I knew the time was quickly coming to find a new wallet, and started looking into thin wallets.

I’ve never quite had the same problem George had, but I’ve tried to keep wallets out of my back pants pockets for years. I don’t even really carry cash with me anymore, just a lot of plastic. I was also thinking if my wallet held less stuff, I’d be forced to carry less.

Trayvax-Axis

I don’t exactly remember how I came across Trayvax, but the more I looked into what they do and make, the cooler they were for me.

  • American company
  • Products made in the USA
  • Wallets are RFID resistant
  • Lifetime warranty
  • Partner with and support veterans

This wallet is made out of solid, tough materials I dig. The design is minimal and slim to carry my plastic cards and a few bills with ease. It’s smaller than my cell phone so it’s not like it crowds my front pockets. The wallet is also modular, allowing you to loosen or tighten the strap to securely fit what you’re carrying. If you’re concerned about the wallet opening up, you can secure it with a carabiner or other similar item.

I think what has struck me most, is all the positive comments I have received from cashiers when I go to pay.

“Is that a wallet?”

“Where’d you get that?”

“That’s so cool!”

I’m not sure why, but cashiers seem to love wallets, beards, and Trejo’s Tacos t-shirts. I’ve also used the Trayvax Axis as a tool of sorts to pry or smash things. So far it’s held up quite well.

If the Axis isn’t your style, Trayvax does offer three other models with color variations and accessories. Be sure to check out what they offer. Did I mention they have a Youtube channel?

Twitterpated Trees

After receiving my Xolair injections this morning, I popped on over to the office to talk with my boss about projects and said hi to a few co-workers. One was asking me what I do to handle the tree allergies going on right now. “Wellllll,” I said, “I use…”

  • Allegra and Zyrtec
  • Maintenance nasal spray (Fluticasone Propionate)
  • Emergency nasal spray (Azelastine)
  • Eye drops (Pataday)
  • Singulair
  • Sinus rinses
  • And occasionally Benadryl

I also have epi-pens I carry around, but have never had to use them. I actually hadn’t noticed the allergies much until a few days ago. I think it was because I had been inside some much and our in-home babysitter had the doors open. By the end of the day my nose was constantly running, and my eyes were itching. Not too bad in the grand scheme of things.

Sinus Rinsing

Rinsing my sinuses has been a major game-changer for me, but I know it doesn’t work for everyone. I prefer the Neti squeeze bottles over the traditional Neti Pot as I can control the water pressure going through my sinuses. It’s important to use filtered or distilled water. There have been reported cases of people getting nasty stuff in their sinuses from using tainted water. Just be safe.

I’ve also heard stories of people getting or prolonging sinus infections from rinsing their sinuses. This hasn’t been a problem for me, but definitely talk to your doctor if you have questions. I always put my head down in the sink and blow my nose on both sides a few times, tipping my head side to side, to get all the water out. When I first started doing this about 5 years ago, I would have water randomly come out of my sinuses. This method of getting the water out has eliminated the problem.

I buy my sinus rinse supplies in “bulk” off Amazon. I get two bottles and 250 packets at a time.

sinus_rinse

It ends up being much cheaper than running to a pharmacy, especially since most places seem to only carry the bottles pre-filled with saline and a few extra packets. It’s a waste of money if you ask me.

The one other thing I’ve found very valuable is a drying stand, if you’re rinsing your sinuses regularly. This’ll help everything to dry out in between uses.

If you’re looking for OTC eye drops, my friend says Alaway is the brand to try. It can also help to check Pollen.com, or get one of the many apps for your smartphone, so you know what to expect. It’s kind of like checking the weather in a hopefully non-compulsive way. Sometimes just knowing how bad it might be can cause a little anxiety.

Face Masks

Lastly, I sometimes wear a mask outside. I wanted to get one of those skull masks like you see special forces guys wearing in action films, but those things don’t really work with beards.313b4525fbe42e9301e3a4c284ee8f10

I ended up getting a boring, washable, plain black one. It’s thicker than the paper ones you get at the doctor’s office if you have a cough and fever. It can also be a little harder to breathe through, but it stays on my face well and makes a noticeable difference. It’s good for wearing on planes as well.

Just remember to take it off before entering a gas station/convenience store or a bank. They get kind of weird about dudes in masks.

Purple Mattress Update

So we’ve had our Purple mattress a little over a month and are still loving it. At this point, I think it’s fair to say we’re keeping it. Here’s a quick rundown of our adjustment to the new mattress.

Mattress protector – I have horrendous allergies so it’s a really good idea to have my mattress and pillows encased to cut down on dust, dust mites, pollen, and whatever else. Originally I purchased this Sleep Tite model, but I didn’t pay attention to it being for thick mattresses up to 22″ deep. I didn’t think it would be a big deal, but after we zipped the mattress up and put sheets on the bed, we could feel the bagginess of the extra material beneath the fitted sheet. It was driving us a little nuts.

I then did some more careful searching on Amazon to find another mattress protector that is made for those 9″ to 12″. The Purple Mattress happens to be 9.5″ thick, so this was a much better fit. I also picked up a fitted-sheet-style protector as a second layer on the mattress. The reasoning is we can easily slip this one off and wash it periodically without having to unzip the encasement and take the bed apart.

Pillow protectors – Since I was purchasing a new mattress protector, I went ahead and got new ones for our pillows too. I went with the Sleep Tite brand and they’re working great.

Bed height – As I mentioned before, the Purple Mattress is about 10″ shorter/less thick than our previous mattress. This hasn’t bothered me, but Liz would prefer the bed to be a bit higher off the ground. To fix this, I picked up some bed risers. They are modular, plastic blocks of sort allowing me to raise the bed height by 3″, 5″, or 8″.

The bed has been great. It’s comfortable sleeping on our backs or sides. Even sitting on the bed for extended periods of time working on laptops doesn’t seem to put any stress on our backs. I really love that I can by lying near the edge of the mattress and I don’t feel like I’m going to slide off the bed. If there was one regret, it might be that we stuck with the queen size and didn’t upgrade to a king.

I’ve also had the flu/bronchitis for the past three weeks and have spent 90% of that time in bed. This hasn’t seem to have affected the mattress at all.