Archive for Asthma Boy

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.

One year of Lucky Scruff

I’ve been a Lucky Scruff customer for almost a year and a half now. I did an initial review last year, and have planned to do more reviews of their products, but just haven’t gotten around to it. So here’s a digest of sorts.

Beard Oil

I really dig their beard oil. I feel the quality is just as good as some of the more expensive brands, and I love their scents. My favorite are Holy Beard Oil, Dragon’s Blood, and Dragon Forged – which seems to be almost a mix of the two. The weight of the oil is a good medium between heavy and light, lasts all day, and takes care of any skin dryness of beard dandruff. It also makes my beard look great.

Beard Balm

I was really excited to learn Lucky Scruff was releasing balms last year and got in early by being a part of the $20 Beard Club. Holy Beard Oil was the first scent made into a balm, which was great because I was already using the accompanying beard oil. It does just what I was needing in the way of control. It keeps all the fly-aways down and shapes my beard without it turning into some odd, looking hairspray sculpture from the 80s. I also don’t have to apply it every day, it’s more like 2 or 3x a week. I also have the Dragon Forge beard balm which I love just as much as the Holy Beard Balm.

$20 Beard Club

I joined the $20 Beard Club about a year ago and stayed subscribed for 8 months. The way it works is every month you want to participate you are charged $20 + shipping. Included in your package is a beard oil with something else. I received two or three oils some months, beard balms, combs, soaps, and other beard supplies. It’s much cheaper than buying the items individually, and Lucky Scruff posts the contents of the month’s package ahead of time so you can decide if you want it or not. I didn’t quit out of dissatisfaction, in fact, I unsubscribed because I realized one day I had amassed a collection of 15 beard oils. One ounce of beard oil lasts me about three months, and the shelf-life of beard oil doesn’t last forever. If I actually use up my stash some day, I’ll most likely re-enroll.

beardDrawer

Beard supplies

Customer Service

The guys at Lucky Scruff know how to take care of their customers. All their products come with a guarantee. If you don’t like what you’ve bought, within reason, they will replace or refund your purchase. They are also quick to respond on social media and by email if you have questions or concerns.

They also have great swag in the form of can coolers, stickers, and other items. You get a can cooler with every order, so I’ve given many of them away.

Can Cooler

Can Cooler

As you can probably tell, I really dig this company. If you’re looking to start taking more intentional care of your beard, check out their products. Also, feel free to ask me any questions. I’ll answer them the best I can, or will refer you to someone else.

Took a trip and I didn’t get sick

Last week I wasn’t feeling too great because farmers were harvesting the soybeans around my house. The process puts an inordinate amount of dust and particulates into the air effectively making it “hard to breathe.” I hid inside Monday through Wednesday, and Friday Liz and I headed up to Michigan to hang out with friends for the weekend.

As usual, I had more medical stuff packed than non-medical stuff – even with me taking my laptop and a stack of books. We stayed in a big, rental house on Lake Michigan. It was one of those places with a steep driveway, and a steep set of stairs to get to the main floor. Once inside, all the bedrooms were either on the 2nd or 3rd floor. I was miraculously able to carry our stuff up from the car.

While there, Liz and I took a trip down to the beach which basically meant climbing down the hill we “went up” to get to the house, and then climbing back up. Once again I was able to do it without any adverse side effects. While there, my allergies were definitely bothering me and it seemed like the house either had some mold or tons of dust in it. A few puffs on the ol inhaler kept me in tip-top shape.

Today I am sitting in my room watching Back to the Future while typing this. A few hours after arriving back home the effects of all the harvesting kicked back in. I’m hoping I’ll be well enough to go outside again. The wheezing and shortness of breath really wears on you after a while.

He put a needle in my throat

Over the summer I had some changes with doctors. One change was to see a vocal chord dysfunction (VCD) specialist to make sure I’m on top of that condition. The guy was very nice and extremely informative. He wanted to stick a camera up my nose and down my throat like every other ENT I’ve ever seen. That wasn’t a big deal. The surprise came when he informed me he was going to stick a syringe into my neck in order to numb my larynx.

He couldn’t quite find the spot he wanted to because of my beard. He cracked a joke about next time I better have it shaved off. He stuck the needle in, told me I could cough soon, and when he pushed the plunger in I could hear the liquid spraying inside of my throat. The sudden urge to cough was awful. This definitely wasn’t something I’d rank high on the pain list, but it’s easily in the top 5 for uncomfortable.

It turned out all the wheezy stridor I’ve had for ages isn’t coming from my throat. My lung doc says it is, but the throat doc/VCD specialist says no. He gave me some more information about the condition I hadn’t heard before and went over some techniques in case my throat is closing up on me.

No hospital trips this summer

Summer is officially over, and it smells like Fall outside. I made it through with no hospitalizations nor trips to the Emergency Room. This is slightly epic for me as this hasn’t happened for years. I’ve still had a rough time, did some steroids, did 5 courses of steroids, and missed a chunk of work. My doc asked me to take probiotics to help my digestive system recover from all the meds.

I’ve never taken a probiotic before and I’ve always heard how most of them are scammy. I asked my doc what she would recommend and was told to check out Align or Florstor. I was pleased to learn they don’t require refrigeration, and was able to get a generic at CVS.

Overall I feel like I’m doing better and have high hopes for this Fall and coming Winter. I also picked up a digital peak flow meter last week that shows FEV1. I’ve give some thoughts on it soon.

August

Well, it’s my *favorite* month of the year and 2015 is similar to the rest. There are some bright spots though, I haven’t been in the hospital yet this summer, my meds have been tweaked to a decent combination, and I have an appointment with a VCD specialist next week. I’m currently on my 3rd prednisone taper since July and my lung doc put me on some anti-biotics today. I’m hoping I can buck up over the weekend and get back to work on Monday. I’m hoping I can weather out the summer and then have a decent winter and spring. We’ll see what happens.

Asthma may I?

The other night I was watching The Departed (2006) around 3am, wheezing and feeling miserable, when I realized my asthma can be personified by “Marky” Mark Wahlberg’s character, Dignam.

Hey Asthma, think I’ll make it to work tomorrow?

…get out and socialize with friends?

…be able to take a walk with the kids?

…make it over to Rally’s before their Two Big Bufords for $5 deal goes away?

…see the new Mad Max movie in the theater?

…go see my friends in the Wizard of Oz play?

…hang out with my cousin when she passes through on her coast-to-coast road trip?

…go to Lebowski Fest this year?

 

I’m not even sure why I ask anymore. The answer is always the same.

 

Another methacholine challenge

Methacholine challenges are not fun at all. They usually take about an hour and consist of breathing in methacholine, which causes a reaction in asthmatics, and seeing what happens. After each dose, spirometry is done to see how the patient’s breathing if faring. If your lung function reduces by 20% or more, you’re asthmatic.

I have now done four of these tests. Two of them have been negative, and two have been positive. Last week, my test was definitely positive. I don’t see my doc for a few weeks, but I assume he’ll agree with the results. Since my previous methacholine challenge last fall, I have been off all asthma maintenance meds. I was also off allergy meds for roughly two weeks this time. While asthma isn’t a preferred diagnosis to have, it definitely uncomplicates things.

Since the test I’ve been able to go back on all my meds, and I’ve started using Dulera again. I’m tracking peakflow numbers during this month and I’m guessing they’ll be trending upward. I think I was overmedicated on asthma meds for a very long time with other things going untreated or under-treated. It would be really awesome if my health could stabilize and I not end up in the hospital this summer.

Another round of allergy tests

So far I’m really impressed with my new allergy doc. He’s taking the bull by the horns, so to speak, and baselining everything. A couple weeks ago I had the giant-grid scratch test on my back, and this morning they followed up with subcutaneous testing on my forearms. The injection sites responded as expected. I had a lot of +4 with the hives measuring up to 20mm x 20mm. This time the nurse even put tourniquets on my arms after about 10 minutes to slow down the reaction. What was really impressive to me was how they contained the hives afterward. They rubbed my arms down with alcohol, sprayed them with liquid benadryl, and then gave me zyrtec. Other times with other doctors I’ve been sent out the door and told to take some benadryl if needed.

Next up I have a methacholine challenge. This will be my fourth one; the difference is I’ll be off allergy meds for a while. Usually they are adamant about stopping short-term and long-acting respiratory medications, but don’t mention anti-histamines. I’ve had both positive and negative results in the past, and medications I was taking probably had something to do with that.

Last summer/fall one of my pulmonologists decided I probably don’t have asthma based off a methacholine challenge, but not all the docs have been in agreement on the diagnosis. While tracking peakflow numbers, I’m going to start using Dulera again after the challenge and see what my numbers do over the course of a month. All the tests and what-have-you aren’t the most fun, but if we can prevent another “classic summer” filled with ER trips and being admitted to the hospital, it’s definitely worth the trouble.

Found a new allergist

So I finally had enough of the only allergist in town not responding to my needs to control allergic reactions. A friend at work suggested another doctor who is about 90 min away, but promised he was good. I made an appointment and got in this past week. I was quite impressed.

  • He used to work at Jewish National
  • He knows who Dr Wenzel is and greatly respects her
  • He wants to collaborate with my pulmonologists
  • He wants to run a bunch of tests
  • He wants to find out if there are other things I’m allergic to
  • He wants me back on xolair

This is what I’ve been asking for the past 3 years to no avail. My allergies not in check means my breathing is not in check, but anytime I mention “breathing” to my old allergist she shuts down. It’s quite frustrating. The interesting part of the story is the old allergist and the new allergist are colleagues and personal friends. I’ve been asked to just say I’m getting a 2nd opinion to not cause a big issue right off the bat. We’ll see how this works out.