Archive for Health

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.

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.

Sick and functioning

Chronic illness is difficult at times. While trying to do normal things like work, family, paying bills, and cleaning the bathroom; sometimes all I can do is sit and breathe. Hours and days can go by like this, sometimes even weeks. For example, I found out I had the flu a couple weeks ago, had a little pneumonia scare, started getting a little better, and then got worse again. The antibiotics seem to be helping, and I’m back on the dreaded prednisone, but it’s a necessary evil to keep my oxygen levels normal.

In my mind, I’ve had a minor set back. I’ve been sick a couple of weeks, but the bright side is I don’t have pneumonia and I stayed out of the hospital. In my time-losing, hypoxic haze my wife, children, friends, family, and co-workers see a different story. Before this two weeks, I was having allergy problems. Before that, I picked up RSV from my 2 year old, before that I had some viral thing from my daughter, etc., etc., etc. Yesterday I sat on our front porch for half an hour. It felt like a scene from a movie where hospital patients are wheeled outside for “fresh air time” dressed in pajamas and wrapped in robes, covered with blankets. Last night changing the sheets on the bed left me panting for 30 minutes until my wife reminded me to take some meds.

Here are some things I try to do to stay functioning.

Buy stuff online – leaving the house, driving a car, and walking up and down aisles can sound impossible at times. If I notice we’re low on supplies, I’ll hop onto Amazon and see if I can find a decent deal. This past week I bought 24 rolls of paper towels, a case of toilet paper, a giant box of trash bags, and a few other necessities.Prime shipping gets it to the house quickly, and Paribus helps me save money if prices drop.

Clean up at least one thing a day – cleaning the house can sound exhausting, but doing at least one thing a day helps you stay on top of things. Pick up some toys, do a load of laundry and put it away, clean the toilet, load the dishwasher, etc. Seven small tasks during the week can be much more manageable than one big task on a bad day.

Find some hobbies – I love watching movies. It’s my favorite art form, and it helps me be social. It gives me something to talk about with friends. I also enjoy growing my beard, making things from paracord, and cooking. Find something that works for you. Read some books, take an online course, keep your mind limber.

Stay in touch – don’t cut yourself off from the world. Find people to talk to either in person or online. You’re not alone. There are others like you out there. Others can learn and benefit from your knowledge and experience.

Get up and move – don’t stay in bed all day. Get up and take a shower, walk to the kitchen, go get the mail. Don’t overdo it and know your limits, just make sure you’re physically active in some way.

This is by no means everything, and I fall off the rails more often than I’d like to admit. You just have to keep trying. There are also going to be people in your life that bring you down intentionally and unintentionally. Try not to be discouraged. Most people mean well, they’re just ignorant.

Flu update

I was feeling something awful last week and then I tested positive for influenza. The first three days post-diagnosis were definitely the worst. After a week, it feels like a couple days have gone by. I still can’t make it all day without a nap, and anything resembling cardio induces hacking and coughing.

It was encouraging to hear my x-rays were clear. Pneumonia scares the crap out of me. Influenza is also scary, but slightly less frightening. Another encouraging fact is that I didn’t end up in the ER or hospital. I think it means I’m getting better overall. I’d like to make some strides this year towards being more healthy.

Influenza

I have the flu.

I haven’t felt this bad since I had pneumonia back in 2006. At first it was just feeling like crap, a high fever, and copious coughing. But now that the shortness of breath and low O2 sats have joined the party, I’m really looking forward to the end.

FYI – Tamiflu seems to be keeping me awake when I’d love to be sleeping. So keep that in mind if you’re ever on it. I told my doc getting up to get water makes my O2 drop to 90% so I went in for a chest x-ray and blood tests. I’d be lying if I said I wasn’t worried about pneumonia.

Children and Chronic Illness

I am chronically ill, and I have two children. I don’t like admitting I can’t always take care of them, mostly because it is true. Fortunately they are very understanding and are kind of used to it. It can become really difficult when I’m solo parenting though.

Last week, my special lady friend was in L.A. for a work conference. Kid #1 goes to school during the day and Kid #2 is with a babysitter during the day, but I’m on duty for nights, mornings, and weekends. I was doing alright until the weekend.

I wasn’t feeling well before Liz left. She was worried things wouldn’t be ok. The kids weren’t adjusting well to mom being gone, but I was doing ok. The week progressed, and I became slightly more and more tired each day. I’m often able to rest and recharge on weekends, but not this time.

I did get a break for a couple hours Friday night and Saturday afternoon, but I was already feeling bad enough that it wasn’t enough for me to feel better. Sunday morning I got the kids some food, turned on the TV, and laid back down. They woke me up at 11, 12, 1, and 2. They were hungry, they were tired, and they needed some attention. I was able to get a family member to come get them around 6, but by then I was in pretty bad shape. It’s now three days later, and I’m just now doing some normal things like: not sleeping all day, eating, and talking to people.

I’m fortunate that my oldest can watch over the youngest and mostly keep him out of trouble. I’m grateful to have family around who can help out at times. We’re all glad to have Liz back, and hopefully I can hack it next time. The kids are also fine, I just wonder if they think all dads are like me.

Digital Peak Flow Meter

In October I bought myself a digital PF meter from Amazon. I did a little research online, talked to some friends, and then ordered the Microlife PF 100. I don’t remember to use it everyday, but I really like being able to see FEV1 along with the peak flow value.

I’ve found it interesting how the FEV1 value will change when my PF value stays relatively the same. This is often paired with me feeling worse. This extra data has also been helpful when checking in with my lung docs if I’m not doing well. The device holds 240 readings so you can always scan through your past numbers.

Supposedly you can use a provided USB cable to download your values to a computer. I’ve been storing my data at OurBreeze.com. It graphs everything out for you, will alert you based on your best values, and there’s even a forum to get advice from, and chat with fellow asthmatics and those who have breathing disorders. Be sure to check it out.

RSV

I have a couple kids, and the youngest has some mild breathing problems. Two or three weeks ago he became sick, was having a lot of trouble breathing, and was hard-core retracting. His doctor said it was RSV and started him on some steroids.

RSV is supposed to be dangerous for babies and old people. Supposedly if us adults get it, it’s just a cold and you cough a lot. I ended up hanging out with the little dude for a week while he coughed and sneezed in my face. Sometimes he’d let me give him a treatment, and other times he fought it. Things seemed to be going decently well until I started feeling under the weather.

Things went from bad to worse in about 6hrs. Lately whenever I get sick my oxygen saturation drops. That night I was reading 85-89%, feeling pretty lethargic, and looking like two nebs short of an ER run. Luckily I tend to have prednisone on hand and a very responsive pulmonologist in town. I took some magnesium and then sat in a hot bath with epsom salt, which also contains magnesium. I can’t count how many times this has saved me. Magnesium helps to relax smooth muscles and let your airways chill out.

I’m still having ups and downs trying to kick this thing, but this morning I was able to ride my bike so that’s a good sign. I wish I could skip cold and flu season each year.

 

Lists

I’m sort of a list person. Writing things down magically helps me to remember them. Sometimes my lists only exist in my head. Lately my lists have looked like this.

  • Wake up
  • Check breathing stats
  • Take medicine
  • Get kids ready
  • Get ready for work
  • Go to work
  • Come home
  • Dinner, baths, and bedtime routine
  • Take care of bills and household things
  • Sleep

More often than not, my list has stalled out around items three or four. I haven’t been to work in two weeks. I’ve worked 18 days in the last three months. Tomorrow the plan is to go to work, hell or high water. If nothing else, I need to get out of the house and do something just for my mental sanity.

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.