I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.
When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!
After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.
While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay!
We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out. My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy. I asked to borrow it but I didn’t think it’s transferable. Darn!
We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen.
So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.”
I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me.
I know I’m a lucky person. I have a husband who loves me and takes care of me in ways that I have no idea that he’s doing it. May 26, 2017 was one of those days.
Last year, K found out that U2 was coming to Dallas, Texas in 2017. It’s rare that they come here and they are one of K’s favorite bands of all time, next to Pink Floyd, of course. So, he asked and then begged and told me how important this concert was to him. He said he’d consider it his birthday AND Christmas present if I’d buy these tickets for him. I’m the CFO (Chief Financial Officer) of this family. Anything spent, that’s over $100, should be cleared through the CFO. That’s what happens when you’re living with someone who is disabled and has to go to the doctor often and take expensive medicine.
I knew how much K wanted to go to this concert and I won’t lie to you and say that I was really excited about going to the concert at first. I hadn’t been to a concert in YEARS. I didn’t know if I’d be able to last through a whole concert. I mean, how long do concerts last nowadays? That question was the most important question we faced going into planning for this night of fun. Yes, I bought the tickets. In fact, for the first time ever, I bought a seat for the disabled and a companion seat ticket. We decided to use my wheelchair.
The closer we got to the date of the concert, I started getting more and more excited. I asked my younger sister how long concerts last and she thought about 3 hours. So, we thought 2 liquid oxygen portables would be enough. We didn’t want to leave before the end of the concert. Two portables would give me about 4 hours of time safely. Though, when you least expect it, things don’t always go as planned. Do they?
On the day of the concert, I dressed up in my retro dress. It took me a while to figure out what shoes to wear and how to tie the belt around my dress. I’m not a fashionista. At all.. but K kept saying that I looked beautiful. So, how could I NOT wear a dress? How sweet of him!
We finally departed our house and drove to the DeathStar (the new Cowboys stadium) and there was a lot of traffic. I whipped out my handicap placard once we got close to the stadium. I told K to slow down and I rolled down my window. Well, I just pressed a button and it rolled down on it’s own. I stuck my head out the window and waved my handicap placard (like I knew what I was doing!) to a cop directing traffic. Yeah, I’m not shy AT ALL. The policeman walked up to my van and I asked him directions on handicap parking. That’s right. We were going in style! We ended up paying just a little extra (ok.. a bit more than I was comfortable with) to park at the building (a sidewalk away) in the handicap. It was right up there near Valet parking. A parking attendant poked his head in K’s window to scope the inside of our van. I don’t think I need to tell you what they were looking for with what happened in Manchester, UK a few days prior. There were police dogs walking the crowd and police with automatic rifles. Texas is serious with security. No purses allowed unless it was no larger than 5″x8″ in size. I actually took my PH International Conference name ID badge that I got in June 2016. It held my ticket, driver’s license, credit card, insurance card and my cellphone. It was the perfect size!
We got in the building and had no idea where to go. However, we quickly found out that if you are arriving in a wheelchair, not only do you jump through the line to enter the building quicker than anyone else. You get some incredibly friendly help from the Event Staff. It was nothing short of AMAZING! We only had to say we weren’t sure where to go and the Event Staff person we asked not only told us where we needed to be but also, TOOK us there personally. It was awesome! I was all smiles and “Thank YOUs!” I have to say the handicap seating was excellent. We were fairly close and not a single person was in front of us.
U2 concert 2017!
Now the scary part. As K would say, we “GROSSLY” underestimated the amount of oxygen we needed for the concert. I use 6LPM of oxygen 24/7 and my 2 portables would last roughly just over 4 hours. It was already 7pm which was when the concert was scheduled to start. It didn’t start until almost 8pm and it was the Lumineers, not U2. K and I talked about what we would do. I told him that I could turn my oxygen down to 5LPM if I just sit here in my wheelchair but I’d have to turn it back up to use the restroom or if I started feeling bad. He had left me for a little bit to find out about souvenir concert shirts. At least that was part of what he was doing. I didn’t realize he was going down to the police or the Event Agent at the door to see if he could later exit the building to refill my oxygen. He said no. He couldn’t let him back in he building if he left. Well that sucks! Right? So, he next went to the fire department personnel and explained our situation to him. He asked if they had oxygen with them and they said not to worry. If we have problems to bring me straight to them and they would help. Wow! (yes, they had oxygen!)
K came back to his seat without even telling me he had setup a backup plan in case we needed it. He even packed a picnic to leave in the van for after the concert in case we were hungry. We had a lot of fun, with my oxygen turned down to 5LPM, I was able to watch the whole concert from start to finish. We even stayed a little longer to watch some of the breakdown of the stage. That was cool too. It was just after 11:30pm when we finally got back to my van but all was well and we had a great time. Quite a number of the event staff and a police officer asked if we had a good time. I’d like to think this kind of hospitality happens everywhere but being Texan, I’m kinda biased. *hugs* haha!
Waiting for the U2 concert… Lumineers will be first!
Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.
I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):
My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.
After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.
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.
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.
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.
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
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.
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!
I’m a genius! Ok, well, maybe I’m not technically a genius or even very intellectually smart but I’m pretty darn creative. You see, I have a problem. I want to go to a movie. Normally that wouldn’t necessarily be a problem because K would go with me and carry my oxygen. Right? Yep. He would.
But what if this is a movie that he REALLY doesn’t want to see even though I have been waiting for this movie a whole year for it to come out on the big screen? Not a problem because I have a cart for my portable oxygen, right? Ok. That sounds logical. Just use my cart to pull my oxygen around so I won’t become exhausted from carrying it. Great!!!
Only one huge problem with that… the movie is over 2 hours long which means I’ll need two liquid oxygen portables. (Remember, I use 6LPM of O2) Not to worry because I have two portables. However, the problem is that I have a cart that only carries one portable. And before you ask or say it, I can’t carry one and drag one in the cart. I’d be wiped out before I got to my movie seat.
So now I’m in MacGyver mode. I came up with an idea last night. I don’t care what the end product looks like as long as it works to carry both portables with ease (and maybe even my purse too! Sweet!!!). All I need is my plastic tub that I use for trash in my van, my handy duct tape (my home is NEVER without duct tape!), and my luggage carrier. This morning I was looking all over the house for my luggage carrier and couldn’t find it. I thought my MacGyver moment was doomed already from the start. But, I texted K because he remembers EVERYTHING and surely he’d know where the carrier was hiding. In fact, I thought he took it to work. Don’t ask…
To my surprise, instead of a text reply, he FaceTime’d me back and he walked with me through the house to find it. I know why he did that. It’s because I told him last night that I thought about going to this movie on just one portable. He thought otherwise. With my breathing becoming worse while on the new PH medicine, Adempas, he put his foot down saying take both portables. He wants me to get out of the house more but wants me to be safe and smart about it. Sometimes I’m so excited about something that I don’t always remember I’m not really Wonder Woman. *GASP!!!* Shhhhh… Don’t tell anyone! Aw… He’s so sweet.
Now that I have everything I need, I will begin the construction phase of my MacGyver moment. I will build myself a cart for two oxygen portables! Wish me luck! Pictures of my hopeful success coming soon. haha!
Well, I’m pretty nervous because I’m going to subject myself to trying another Pulmonary Hypertension medication that’s fairly new. It’s called Adempas. It will be added to the PH medicine that I’m already taking, Tracleer.
It’s so complicated, with all of my health problems, to treat Pulmonary Hypertension. With each PH medicine I try (with the exception to Tracleer at half dose), my body isn’t able to tolerate them because of my scoliosis that created my Restrictive Lung Disease problem.
What’s suppose to help one of my problems creates terrible results for my other problems. I can’t tell you how frustrating it is for K to watch me go through this and not be able to do anything to help make trying new medicines any easier. Spouses go through so much along with the patients. It’s just as heart wrenching and maddening as being the one trying a new medicine, unsure if this is the one to either make me feel me feel better or make me feel so much worse. There is no cure. We can only hope to slow its progression until a cure is found.
So, here I am after my Pulmonary Hypertension doctor appointment today, waiting to hear if the specialty medication application was approved which will probably be some time next week. Then, I’ll find out how much more this will cost me or if I will qualify for Co-Pay assistance. PH medicine does not come cheaply and can only be dispensed from a “Specialty” Pharmcy. Thankfully, my PH doctor has agreed for me to be titrated up on this medicine slower than normal. We’re hoping by going a little slower, I may be able to tolerate this medicine a little more smoothly.
Meanwhile, it’s raining like crazy here. The air is holding on to all that moisture as long as it can to make me suffer, I’m sure! haha! Not to worry! I have ice cream in the freezer. It helps me to survive anything. Probably even a Zombie Apocalypse too! You never know! Don’t doubt the power of ice cream!!! Mwahahaha!
Be well everyone! Have fun with the Trick-or-Treaters. May you actually have “little” kids show up at your door this year. Be safe.
Remember that November is Pulmonary Hypertension Awareness month.
One of the most important things people do not tend to think about when planning for a road trip while having lung issues, is the how the path you decide to drive will affect your breathing. When I turned 40 years old (nearly 6 years ago!), I begged my husband to take me to Las Vegas. Nearly everyone I knew has been there and had fun. I just haven’t been there and I wanted to go so badly. So, I made it my Birthday wish. Over the years leading up to my 40th birthday, K would always tell me we couldn’t go because it’s a LONG drive and there would be just us driving. He also didn’t think I would do that well on the road driving through the mountains.
Eventually, I wore K down and he started thinking about going since it would be my big 4-0 birthday and he wanted to make it special. We needed someone to go with us. Not just anyone. We ended up taking my MacGyver-like brother-in-law and my older sister, who just happens to be a Physician’s Associate. I asked all my doctors how they felt about me going to Las Vegas (and then on to California) and they all said the same thing. Stay out of the mountains.
Mountains and any altitude that you are not acclimated to can create a big problem for those of us who have breathing problems. Things like increased shortness of breath, sleepiness, chest pain, head aches, and nauseation are just a few of the things that I experience in altitude that is within the range of 3000 feet or higher. It doesn’t take long for the effects of altitude to effect me. It’s a distinct and highly recognizable feeling and it can not only make you feel miserable, it will make you sick.
So, what did we do? First, let me tell you, you must have a back up emergency plan if you truly decide to go… which I don’t recommend doing without a backup plan and talking with your doctor first. Your life and health are too important to not be overly cautious. I then started charting the route that we took. K and I only drive 10-hour days while on a road trip (and yes we took our road trip mascot.. my rubber chicken!).. so we needed to make sure we stopped in locations that, not only have a lower altitude level, but also a place to refill my oxygen if it is time to refill my liquid oxygen reservoir. Wouldn’t want to run out of oxygen while on the road, right? That would be bad as I started using a tad bit more of oxygen while in the car.
Since I live in Fort Worth, Texas, I had to pick a route that skirted most of the mountains and stayed within the lower altitude range. I live in an area that is at around 700 feet above sea level. So, I was guessing that my maximum tolerable altitude would be 3000 feet. Yes I would still have trouble but I would be able to go since my sister was going with us to keep an eye on me. Yes, she’s an awesome sister. I only wished that my little sister could’ve gone too.
I bet you are wondering how I planned the route. First, there’s an app for that but most importantly, there is a really great altitude website that lets you click on any given area and it will tell you the altitude. You can use this map for locations anywhere around the world. Using this, I was able to figure out which highways to use to make my roaodtrip the safest route possible. It wasn’t fool-proof. I still had serious headaches and I was really tired. However, I had the foresight to have purchase a wheel chair through Amazon.com and I took my pulse oximeter to monitor my oxygen saturation.
I hope this helps you plan your road trips. I posted this information in hopes that you remain healthy while on vacation and have all the fun you deserve.