Power loss and methodologies to stay on supplemental Oxygen.

[Colleen]

@ripple76 thank you for addressing a very important topic, especially considering how mother nature has been raging lately!

My husband relies heavily on his CPAP so we also have a portable generator which saved him 2 times so far during power outages.

When my son had PH we always had cylinders on hand so he just used those if the power went out. His doctor also had us turn a letter into the power company and nearest fire station notifying them of Cullen’s health condition and the importance of making our power a priority. In reality, I’m not sure how much help that would be. If push came to shove we would probably end up at the hospital if Cullen was running out of o2.

Are there any adults here who have medical letters on file with their power co. and fire department or is this just something they advice parents to do for children?

[jen-cueva]

Hi @ripple76, yikes, sorry you have experienced this power outage recently. It is frightening when this happens, and often without notice.

I wanted to share this post about natural disaster preparedness, and one of my older columns was shared in this post, too. Back in Texas, we often lost power from hurricanes. However, a winter storm came through one year, and we were without power.

Preparing for a natural disaster

As you will read in my column, we have a generator, which only runs my oxygen machine and one other appliance. During hurricane evacuations, we often left to hotels several hours away so that I would have AC in the Texas summers and my oxygen.

We still have our generator in the garage here in California.

I also have huge cylinders in my spare closet, as @colleensteele mentions. I had paperwork from my doctor in Texas on file with the power company that I depend on O2. I didn’t need a doctor here, but they were aware of my oxygen needs, too. Here in CA, I believe it is called Medical Necessity or something.

Thanks, Randy, for this important topic, especially with the recent storms everywhere. Take care, buddy.

[Jill Upshaw]

I am on CPAP and O2 at 7L now. I am now in an apt so I can’t have a generator. I used to have one that was for the whole house and switched over automatically. I loved it. Now I have a portable power inverter charged up for my CPAP, the green tanks, my Eclipse and still have my Inogen that only goes to 6L. I also have a scooter and a wheelchair because I can’t walk very far or stand at all. Guess I am prepared for anything but I hope I don’t need any of the extras.

[jen-cueva]

Hi @upshtcx, where have you been PHriend? I’ve missed seeing you in the forums. Did you recently move to the apartment, or was that where you’ve been?

I’m sorry that you are now on 7 liters of oxygen. It sounds like you are prepared, which is much better than being caught off guard by a natural disaster.

Manny was looking into a whole house generator before we sold our last home. We still have our portable generator used during hurricane preparedness and power outages.

I’m hoping you won’t need it either! Does your power company offer any medical necessity form you can have your doctor complete that makes you a priority to keep on when possible? It has been helpful for me.

Thanks for sharing, and please keep us posted on how things are going for you.

[Debbie Moore]

Our power goes out all the time, but we have a whole house generator, so no worries there. However, I have run out of portable oxygen and was confined to home missing an important appointment.  My Inogen POC died and I had no full cylinders and the air company couldn’t get me any cylinders that day.  I was trapped at home.  Since then I have 10 cylinders of oxygen, a second POC and small bottles (for swimming) – all of which can be used just in case.

[jen-cueva]

Wow, @debbie, it sounds like it only takes once to find yourself stranded at home with no POC. You are prepared for the worst, although let’s hope you won’t need all that.

How long have y’all had your whole house generator? I know in areas where hurricanes and tornados are bad and have winter areas, many prefer these.

I have an older PHriend in Arkansas who said her quote was $15000 for one, then they came out and said nope, it would be more like $30,000. That sounded expensive to me. However, we looked 5 or more years ago, so IDK how high they are now.

Like everything, that’s probably increased in price, too.

Have you recharged from that exciting vacation? What’s on your agenda next?

[Debbie Moore]

We have a Generac and we paid $10K about four years ago.  It seems like all prices have doubled, so there is no telling the cost now.  Our power goes out all the time.  Mostly for a few minutes, except with bad storms.

I felt so much better on vacation.  I think I’m not getting enough rest at home.  We are going to TN tomorrow.  My husband’s, Wayne, father is dying and we want to see him as much as possible before he passes.  Our next fun trip is in June to Albuquerque for the National Mustang Show.   We’ll be showing the ’66 GT.  I’ve named her Belle.  She has been shown by previous owners, but this will be a first for us.

I am ready for another cruise.  I have to get my husband retired though.

[Colleen]

@debbie I am so sorry to hear about your father-in-law! I will say some prayers for him and for the remaining time you and your husband have with him.

Enjoy the car show! I have friends that do shows but I can’t remember what vehicle they have. I know it’s an enjoyable hobby to have!

Is there any way to fit in power naps throughout the day? Maybe try and designate some time each day that no matter what is going on, you will take some time to rest? I know, easier said than done.

I was just telling Cullen how much I dislike wind storms, and we get them a lot here…having one right now. I have no issue with thunder storms, snow, hail…but heavy wind storms making me feel anxious. This discussion about power loss makes me wonder if it’s a bit of PTSD from worrying about Cullen’s safety if the power went out when he was on O2. Every time the wind howls I feel like I need to go protect something. I just realized that feeling has to have come from somewhere.

[jen-cueva]

Hi @debbie, I’m sorry to hear about your father-in-law. I’ll keep y’all in my thoughts and prayers.

If you’re like me, you can always find something to do at home. That’s why we don’t rest as much as we should. I do better if I go outside the house, even on the patio. Otherwise, it’s like, one last load of laundry I should do.

Colleen’s suggestion of naps is a good one. if you can nap. I put on a boring TV show, usually an old western or National Geographic. The noise makes me fall asleep, LOL. Unless I’m exhausted, once I get still, I’m done.

Belle will be a star at the Mustang Show in June. Is that a long drive for y’all? You’re in NC, right?

[jen-cueva]

And @debbie, I’ve heard the Generac is about $30000 now. I’m grateful you have that available, especially with frequent power outages. But I’m sure it depends on where you live, etc.

You can still probably get a medical necessity form or something through your energy provider.

[Debbie Moore]

We came back home yesterday afternoon.  My fridge is being delivered today (three weeks with a broken fridge).  We leave again tomorrow morning to go back to my father-in-law’s home.  Plans are to come home Sunday.  I have an ultrasound on Monday.  I hate to cancel appointments because you never know when you can get back on the calendar.

I am not a napper; however, I did take a nap in TN. I was just worn out.  I’ll have to at least make myself sit.  I did start working on a cookbook, so that’s a good sit down job.

Once the weather gets better I’ll go outside.  I love being outside, but I can find just as much to do out there as I can inside!  I do have a swing bed on my front porch – warm day, cool breeze I should be able to fall asleep.

@colleensteele you are right about wind storms.  They tend to be a little spookier.  We have so many trees, I worry about them falling down.  One year we had a lot of rain and then a windy storm.  About 15 trees fell across our driveway.  Horrible.

[jen-cueva]

Oh boy, @debbie, you certainly have a full plate right now. Yes, I understand about not canceling your procedures and the wait to reschedule.

At least you do make yourself sit and rest. So cool, you’re writing a cookbook. My daughter and I thought of doing this at one time, but then she got busy with married life, hehe.

I look forward to hearing more about this and when it’s completed.

Yay for the new fridge, and lease travel safely back and forth to TN to your FNLs. How are things going? Does your husband have a large family in TN?

Take care of yourself, and let us know how your ultrasound on Monday goes. Big hugs and prayers coming your way.

[Colleen]

@debbie oh man, 3 weeks without a fridge must have been rough! I went a few weeks without a clothes washer once. I hate laundromats so I hand washed what I could or everyone went without some of their favorite clothes for a while. Geez I blocked that memory out because I never thought about it again until now.

Thinking good thoughts for you regarding the ultrasound on Monday. I know all about sacrifice in order to avoid canceling appointments. Cullen just got caught up on one that he had to reschedule months ago.

Are you hoping to publish your cookbook or is this something you are putting together for family and friends? I have one my husband’s aunt made the family decades ago.

We also have A LOT of trees in our backyard…big ones, and I’m so afraid of them during storms!

When you are finished reading this…go take a nap or sit on your lovely porch swing for a bit. 😉

[Debbie Moore]

@jenc Wayne has a big family.  Two of his siblings live near FNL.  We are in NC and two brothers in TX and SC.  So everyone is coming together.  I always wanted a big family, but my husband didn’t.  He made sure I was aware of that before he would even ask me on a date.  So we only have two adult children.

@colleensteele the cookbook is for family.  I have all my grandmother’s recipes, a few of my mom’s (she didn’t like to cook, but what she made was delicious), mine and my daughter’s.  So I’m writing about the family and relating it to the food we shared.  I want my grandkids to know these women through my eyes and heart.

[jen-cueva]

Hi @debbie, I’m grateful that Wayne has a large family who can gather and support one another while being there for your FNL. I know you’ve been married for years, which must be difficult for you both. How is Wayne coping? How about you?

However, I know you have strong faith but are never prepared to lose a close loved one. My thoughts and prayers continue to be with y’all.

That’s too funny; he didn’t date you until you knew he didn’t want a large family. Are you an only child or have a small family? It sounds like Wayne has always been the type of man who knows what he wants. How old are your two adult children again?

OMG, Debbie, I LOVE your ideas. My daughter and I planned to do that with my late Mawmaw’s and great-grandmother’s recipes. The families, especially down south, are known to bring good food and come around the table. I always loved that growing up. That seems so long gone. It’s not like many have family reunions and such anymore. Does your or Wayne’s family continue this tradition?

When I was young, I learned to make buttermilk biscuits from my late Mawmaw. She was one of the best cooks. My mom tried but was more about casseroles and certain things she does well; others, well, not so well.

I would love to purchase a copy if that’s possible. I have some from our small country church near my late grandparents. My late great-grandpa helped build that original church, which is precious and dear to my heart. Plus I love to cook and eat good foods from different areas. Do y’all make that chicken bog and things like that?

Oh my, that porch swings that @colleensteele mentions sounds so cozy. I would love to swing on it. I grew up as a kid on my grandparent’s front porch swing and rockers—such great memories.