Forget Halloween – This is more important

Life and Happiness

As many of you are aware – I hate Halloween. This is just one of the many posts I have on the dreaded subject. So this year I’ve decided to go another route (and because you’re all probably tired of my Halloween rants.)

Tomorrow is my mom’s birthday. She’ll be 74. In our ever-increasing disease-fighting culture this milestone seems like it’s not that significant. Many people live past their 70s and into their 80s now. In fact, it’s almost a given. Advancements in technology have prolonged our lives. And if you looked at my mom you would probably say she doesn’t look like she is 74 (most people do say that, actually – a trait I am thankful to have inherited is that we do not look our age).

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However, for the past thirty years my mother has been battling emphysema (better known now as COPD). As a result, she’s been on oxygen continuously for about the last ten years (intermittently before then) and has been through a number of stints in the hospital. (More than any person’s fair share…) About two years ago, she suffered the flu and pneumonia so badly, we feared we’d lose her but she doesn’t even remember much of the hospital stay.

And she keeps plugging along.

When she was first diagnosed, when the disease was little known, her doctor told her she’d have about a year to live. She spent the better part of that year in bed, ready for the end and beating herself up for falling ill. After that year ended, she decided to fight back. She found a new doctor who gave her a much better prognosis and the will to live.

She quit smoking, started exercising, and researched (before the internet) what it meant to have emphysema. She joined a support group, found friends who empathized and began to live again.

Of course she’s had down times. People who suffer long-term illnesses often have bad, even horrible days…sometimes weeks…sometimes years. But she’s persevered.

Don’t get me wrong. It isn’t all sunshine and rainbows. Her life is hard – probably three times, or more, difficult than yours or mine. And although she says frequently that she’s ready to meet God, she still fights to put off that day as long as she can.

So now, at an age she thought she’d never see, I want to say:

Good job, Mom. That doctor said you wouldn’t make it this far…I think you may have outlived him.

How about that?

Happy birthday and I love you.

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To find out more about emphysema, COPD and other lung diseases, or to contribute to research, go to http://www.lung.org/

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It’s Just Oxygen

Life and Happiness

My mom has had emphysema and COPD for about thirty years. Yes, she was a smoker (quit as soon as she got the disease) and she worked in factories without the proper ventilation systems. (She stained TV cabinets without a mask and worked in clothing factories breathing in fibers.) Over the years, we’ve adapted to her new “normal” and it’s not always been easy. One of the most difficult things is educating others.

That’s what I want to do today.

My mom uses compressed oxygen on a daily basis. Initially, she used oxygen only to help her sleep. When she would lie down her breathing would become constricted and prescription oxygen was needed. Yes, prescription. Now she uses it constantly – all day long – to help her breathe.

You see – most of us take oxygen for granted. For those of us without disease, we breathe in and out all day without much thought. But for her, and other COPD sufferers, it is a medicine that must be taken in. Her doctor prescribes oxygen for her. When we go to the doctor’s office and they go over her list of medicines – oxygen is one of them. It’s not a given – it’s medicine.

My mom is on three litres of oxygen for normal activity and four (or more) for exertion. This is like saying, “I take one Ambien at night to sleep.” To help you understand this amount, on her current oxygen portable tank the level can go up to 6 litres. When ill, she sometimes is on five.

Lack of oxygen can cause a boatload of health issues to a body. Your cells can stop working correctly without the right amount of oxygen, causing hypothermia (seen as blue lips and nails), changes in levels of consciousness, and even organ dysfunctions (including heart attacks). In addition, because her lungs do not work properly, even with the added oxygen, she cannot move quickly and cannot carry heavy objects. Walking at the pace of a healthy individual does not happen in her life – everything is slowed down. Any exertion causes her lungs distress – hence the oxygen to help.

Now here is the worst part. My mom is using liquid oxygen. This form makes it easy to carry tanks and for her to be mobile. Liquid oxygen is lighter than compressed oxygen and the tanks last much longer than compressed oxygen tanks, making it a good choice so she can go to church, go to the grocery store and just visit friends. (One tank, when filled, can last up to about 6 hours.) This blog post gives an excellent breakdown of the different types and the pros and cons. Compressed tanks are bulkier and heavier (especially for a 72 year old with breathing problems) to carry. (One smaller tank, when filled, will only last approximately 1-2 hours.)

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Courtesy of the.Firebottle on Flickr

But there is one thing I disagree with from the post mentioned above. They say, “Choosing an oxygen system that works best for you has to be a decision you and your doctor make.”

We have recently found this to not be true.

You see, there are suppliers of oxygen – just like pharmacies. My mother has had the same supplier for many years until just recently when they told her they would no longer provide her with liquid oxygen and she MUST switch to compressed. (They’d done this once before and we fought it. Medicare even says they cannot take it away, but they somehow get away with this practice.)

(Guess why suppliers want to stop supplying? Insurance companies don’t want to pay for the increased expense of liquid oxygen.)

This time, we fought and they didn’t budge. So, she switched companies. It was a LONG and ARDUOUS process for her to switch (because even the insurance company representative told her she had to switch), causing her much stress and many sleepless nights. No one seemed to CARE that she NEEDS the liquid oxygen. Her doctor has decided it is the best for her and that is what her prescription even says, but they don’t seem to care. They are uneducated about the differences.

If companies stop supplying it due to lack of insurance support … what will happen?

She will be home bound. Immobile. Easily susceptible to sickness due to lack of movement. That’s what.

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A day out like this might not be possible

So you see… it isn’t just oxygen. It’s her life support. It’s her life. She needs it to live, just like we all do, except she can’t just take it in easily like we can. She can’t heft around large bulky metal tanks every time she needs to go to the grocery store. A church visit would require at least two tanks that she would need to haul in her car, into the church and back again. Possibly with a cart that adds weight to her load.

Lacking oxygen is hard enough. Why does she have to suffer just to breathe when it doesn’t have to be that way?

Insurance companies – educate yourselves and your people. Let’s get back to the business of CARING instead of just business. Because it’s more than “just” oxygen.

The Ill-est Christmas/New Years Eva Part Trois

Life and Happiness

Now where was I? Oh yes, the Saturday before New Years. My in-laws had just left and we were trying to recover from the craptastic Christmas we had endured.

As Sunday started, we were starting to feel like the worst had passed.

Oh, how wrong we were.

We attended church and started out for a nice lunch and to accomplish some errands. Both of us were feeling better and we needed to get back on track. Lunch was great, but, as we were doing some after Christmas shopping, starting to feel “normal” again, I got a phone call from my dad.

“Mom’s in the hospital,” he said and then went right into a hacking coughing fit.

“You don’t sound much better,” I said.

They both had the flu. And with my mom’s COPD/Emphysema she had landed in the hospital. Dad would go to the doctor in the morning, but he couldn’t go to the hospital for Mom.

We left our purchases and headed to the ER.

She was doing okay, but needed rest. We left her and the nurses to do their thing and tried to get our chores done before a new week began. We checked on Dad and made him eat.

After a few days in the hospital, Mom wasn’t getting any better. My energy supply was once again running low. My freelance work had taken off early in the week and while I was glad for the work – I really needed some rest. But it was not forthcoming. The emotional strain was too much… there was no relief.

Finally New Years Eve arrived and hubs and I planned on taking a much needed break with some friends and some libations. Although we were tired, we needed the time away from the stress.

But just as we were heading out I got the dreaded call from the nurse. My relief from the stress would not be.

“Your mom is asking for you,” she said, “We had to put the breathing mask on her and she is a bit upset.”

We packed up ourselves and, once again, headed to the hospital. Thoughts of NYE parties put on hold – we hoped only for a bit.

4.5 hours later, we were climbing into bed 30 minutes before midnight. Mom had refused to let us leave and had been upset for the rest of the evening. She ate only a tiny amount of food before they had to put her back on the mask – something her claustrophobia was not liking. But when her oxygen levels dipped below 85 (normal breathers are at 99-100 and she is typically at least a 90) it was the “last ditch effort” they could try. (I can’t go into more here now… it was a very difficult night for me. And for her. I thought I was losing my mother. She thought she was dying. I couldn’t call my father because he couldn’t come anyway and I felt like I was being disloyal to him for not letting him know. My fear was that she would die and he would never forgive me. The more we stood in her room, the worse it seemed. She couldn’t speak. She labored for breath, eyes wild with fear, and I cried silently. I called on prayer warriors all over for help. Thankfully… God listened.)

We cajoled, consoled and cared for her as much as we could – thoughts of parties now long forgotten. Finally – at 10:30 – I told Mom I could take no more. She was told she’d be on the mask all night, but we couldn’t stay. My own immune system was drastically low and I would do no good to her or Dad if I got sick. We prayed together, cried together and told each other we loved one another. We bid our leave and she said she understood.

It was one of the hardest things I’ve ever done… to leave her there. Not knowing if I’d ever see her alive again. I was numb.

John and I went home and drank. We stayed up just enough to see the New Year come in, in our bed, side by side holding hands with me crying, and then we turned out the lights.

I didn’t sleep well.

I kept my cell phone on all night in case and checked it sporadically through the night. By morning, I was just happy that another phone call had not come in.

Slowly, we came around in the morning and did our best to get more chores accomplished. By mid day, I was exhausted, but we needed to go see her. I needed to face the music and watch her decline. I would need to call Dad today.

But when we arrived…the change was startling.

She was off the mask, up and alert. Her oxygen levels were almost as good as mine. Her nurse was encouraging and said “her levels are great!” She even got up and walked around the floor a few times! It was nothing short of a miracle. God had answered our prayers – ALL our prayers.

Today (Friday), she was better still. Dad finally got to see her and there is talk she will come home soon. I’m astounded that she is surviving. It might not be much… she might struggle even more now that her lungs have taken another beating… but she’s with us. She’s here.

God is good.

One Breath Is All It Takes

Life and Happiness

I spent the better half of yesterday with my mom, celebrating the fact that she gave birth to me and didn’t end up somehow killing me over the last 40 years of my life. Way to go Mom! I’m still alive!

But seriously, I wanted to take this moment, right after Mother’s Day, to write a little something about my mom.

When I was only about 11 or 12 my mom discovered, after months of late night emergency room visits and loads more nights of breathless sleep, that she had emphysema. Because it was so rare at the time, her doctor gave her one year to live. (Guess he feels pretty stupid now…) She sank deep into depression and Dad and I fended mostly for ourselves for awhile. She felt simply that her life was over because someone had said it was. As breathing became harder and sleep became more infrequent, she gave into the belief that her life was over.

After the year had passed, and much prodding was had from my father, she got out of bed, put on some actual clothes and began living again. One breath at a time. As years progressed so did her disease. At first it was a slight moment of being out of breath when she had exerted herself too much. (Up until about 5 years ago she refused to let anyone else clean her house – even if it meant barely being able to breathe while doing it.) At night she couldn’t sleep well because laying down constricted her lungs even more. As time went on she needed oxygen. She started out using it at night to help her sleep. Then she’d use it occasionally when she worked around the house. Eventually she needed it more and more. And she fought it every step of the way – refusing to wear it out in public until it became a necessity. Now she wears it daily, but sometimes it doesn’t help a whole lot.

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She wore her oxygen to my wedding, but refused to have pictures taken with it.

Over the years I’ve watched her. At the beginning I couldn’t even tell she was sick. Many others couldn’t either and, I think, some thought she was faking it. Now when I go somewhere with her, I’m aware of her movements, how slowly she walks, how much breath it requires to take a few steps and how blue her lips become when the air simply won’t come. I sense her frustration when the oxygen tank stops working for no reason or when level 3 simply isn’t cutting it. I park closer when she’s with me, drop her off even so she doesn’t have to walk as far, and my pace slows so she doesn’t have to struggle to keep up with me or feel like she’s slowing me down. She feels like she’s a burden and that our lives have been ruined by this disease. I say it’s made it better – I’m more aware  of how precious life is, how quickly it can be taken away – by a simple lack of the air that seems so abundant around us.

She’s been in and out of the hospital so many times it’s hard to keep count. Now, as she ages, the hospital trips seem more severe, more… frightening. Will it be this time? Will this time be the time? Will she have one more year or one more month? The emphysema won’t technically kill her…  bronchitis maybe. Or pneumonia. Or a simple cold. Her lungs weakening with each small cold or infection. Winter is a time for solitude – she rarely leaves the house due to the plethora of sickness lurking around every corner and grocery cart handle.

But she’s stubborn and has fought the disease every step of the way. She goes to exercise classes and has made friends with others who face her same fate. They encourage her, understand her and help lift her spirits when she gets down on herself. She still cleans parts of her house, still does the dishes and laundry (with Dad’s help), and still goes where she needs to go. It won’t stop her. Until it finally does.

But then she can say that she beat it after all. She lived 30+ years when one man said she wouldn’t live one. And I admire her for that – she got out of bed that day 30+ years ago. I’m not sure I would.

I’m sure my mom hates that I wrote this blog. She doesn’t want to put a light on this disease. Doesn’t want to let it define her and I get that, but it is what it is. As my mom she frustrates me like all your moms do you, but her perseverance, her stamina, her determination also push me to press on. There is nothing so daunting in my life that I can’t keep moving forward. She did all these years – I can too.

Who inspires you today?