Archive for Health

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.

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.