Our Vacation Experience with Oxygen

Living On Oxygen for Life

Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.

Everything we need for vacation, including medical supples.

Everything we need for vacation, including medical supples.

When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.

This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.

Oxygen vs. Stairs

We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.

Flat Tire

The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!

After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!

It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.

Dolphins along the coast of Gulf Shores, AL

Dolphins along the coast of Gulf Shores, AL

This is how I sit at the beach under a tent on low beach chairs.

This is how I sit at the beach under a tent on low beach chairs.

Rocco would sit with me while I crocheted on vacation.

Rocco would sit with me while I crocheted on vacation.

We went out to celebrate my 47th birthday and our 24th Anniversary!

We went out to celebrate my 47th birthday and our 24th Anniversary!

We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!

Random Picture Day #12 – The Oasis

Living on Oxygen for Life

Here it is as promised! My little oasis. I really love it. It’s not fully decorated yet but the lights, fan, and mostly all of the furniture are on it. The furniture was a gift from my mother-in-law! Totally awesome of her. I think she understood what K was trying to do for me. We’ve had several neighbors stop by at night asking about our patio and its lights… even a car driving by slowed down and K could them say, “Oh my gosh.. would you like at that?” K was up on a latter hanging lights at the time.

Maybe you are wondering how this patio can help me. It’s an encouragement for me to get out of the house. It motivates me to keep taking care of my plants. K and I have a deal where I am the only one who water my plants. He bought me a Pocket Hose which is lighter than watering with a normal, heavy, hose or a watering can. Before you say it… I’ve yet to have trouble with the Pocket Hose since I don’t turn the water on full force and I also drain the water out of it when I’m done with it. By getting out there to tend to my plants, I get a little exercise as well as a sense of accomplishment of seeing my plants, trees and fruit grow. I can’t tell you what that does for me.

We just hung the party lights!

We just hung the party lights!

I don’t know if you can see it but there is a ceiling fan hanging. It’s turned on by remote. The ceiling fan was a must because K didn’t want me to get overly hot outside. The pergola has a Polygal covering which not only keeps the rain off the patio but it shields some of the harsh sun rays off.

My plants

My plants

Can you see my dwarf lemon and lime trees? Not shown in this picture are my apple tree, herb plants and my jalapeños. This gardening thing is fun but can sometime be frustrating since there are these little things call Avids. Grrr! I want to grow Spinach next!

And finally a picture of ME! This picture is of me on the day K and I took my mom back to the train station for her train ride home. I was thinking… “Awh ma…. do you really have to go home?” *wink* We had a great time watching lots of movies!

oh mom

Take care of yourself! Let me know if you have any questions about me for a blog post or for the Q&A page! I hope you got your flu shot already! *hugs* to you all!! Happy Halloween!

I can’t believe I forgot!

Living On Oxygen for Life

Normally, I would write these important dates down but this time, I don’t know what happened! I just simply forgot to write it on my calendar in my iphone. It’s where all my doctor appointments (and new upcoming movies that I want to see!) are stored. I got a phone call yesterday afternoon. The nurse called to say, “Hey, we’ll be seeing you tomorrow for your doctor appointment at 11am.” I was like, “What?” and then I think I said, “When? What? What?” My mind was scrambling hard to remember something so forgotten that I was freaking out. So, ok, I have a doctor appoint for what was then, tomorrow but now it is today. You still following me?? Anyway, I’ve just pulled into a parking space and I got my cellphone out to check the time (make sure I wasn’t late!)… when it rang! SWEET it was my sister calling me. Don’t worry. I was early for my appointment. I’m a pretty punctual person.

Well, my sister told me about a new device hoping to become approved by the FDA. She is a PA and she’s always on the lookout for new medicines or any information that can help my health. I have awesome sisters!

This little device is called CardioMEMS HF Pressure Measurement System (HF System) and what it does is monitor the pulmonary pressures from within the distal pulmonary artery. It allows the patient to take daily readings at home using a computer system or for an out-patient setting using the computer system and antenna designed for hospital use.

My question is: Couldn’t this help PH patients keep from having so many Right-Heart Catherizations? Granted it doesn’t read the right heart pressures. It only reads the systolic, diastolic and mean pulmonary artery pressures as well as heart rate. Would daily or near daily monitoring of our Pulmonary Pressure help with steering a patient to the right or best form of PH therapy? For those who have been diagnosed with Primary Pulmonary Hypertension or Heart Failure, I think this little permanently implanted device could help a lot.

I want to remind all of you that November is
 

Pulmonary Hypertension Awareness Month