We went on vacation!!! FINALLY!

Prepare yourself for a LONG read with pictures. 😉

It all began the day before we left for South Padre. You see, we have a cute waterfall pond that’s filled about 8 goldfish. On that day, the pond pump decided to quit working. So, off to Lowe’s K went. It was a good thing that the pump died because K decided to check out the Inverters that Lowe’s had available. When he found them, he FaceTimed me to check the voltage & amps/watts my Bipap runs on. He bought one so that I could use my bipap while in the van!   

Our vacation was pretty adventurous from the very beginning. It first started with my oxygen reservoir we keep in our van for car rides. It decided to start leaking oxygen when we got there. We called Life Support-Dallas, who services my oxygen needs, and K and Eddie (Life Support) walked through through on FaceTime trying to fix it. Well, K did everything right but when he poured hot water on the chunk of ice that was around the leak, the hose snapped off. All the liquid oxygen bled out. See what happened! (Large video 30mb) https://livingono2forlife.files.wordpress.com/2022/10/img_2536.mp4

Naturally we scrambled to calculate how much oxygen I had left and how many refills my portables can use from one of my 2 100lb reservoirs in the condo before we had to go home. Yikes. That was interesting. One of my tall reservoirs can fill both portables 12 times. Then we worried about the hurricane and which direction it was going to go. We made the decision to leave early if it came our way. Plus, we decided, when both reservoirs got down to 1/4 full, we would start for home since we no longer had my van reservoir to drive home on. 

The next day, I asked K if he wanted me to tie a string around his glasses with a little duct tape (I never leave home without duct tape!). He said no because he didn’t want to look like a hill billy. Lol! 30 minutes later, he came back all upset because he lost his glasses in the Gulf. Men and their stubbornness… Am I right ? Lol! Ok so we scrambled to find an optometrist in the area who would see him the next day (Sunday). The doctor turned out to be super nice. We got a prescription and emailed it to K’s eye doctor where we get our glasses made. His glasses are super complex. All the bells and whistles on it. *rolling my eyes* So, his glasses are in the works while we wereon vacation. YAY!

Next, K get stung by a Blue Button jelly fish. My Go-Bag to the rescue again with Medical supplies this time. He’s fine. No real damage to report on that other than slight swelling. Wheww! I was like, Dude… don’t even say… “What could happen next.” Seriously, with his vacation track record.. I was fearing the worst! Well, the drama calmed down and we had a good time. He went to the beach every day and walked the dogs a bunch. Willow became our beach dog who chased the little hermit crabs and seagulls. Neither dog wanted anything to do with the water which was ok with me.

The water heater in the condo was not functioning properly. We had lukewarm showers and I had to heat water to hand wash the dishes (no diswasher). The night K lost his glasses in the Gulf, he went down with a flashlight to look for them along the water and found a $500 boombox bluetooth speaker system floating in the water! Wow! He was all excited. I posted information on Facebook in the SouthPadre Concierge and no one claimed it. K brought it home with us.

We went to the Fire Station to check out the Mobi-chairs (wheelchair for the beach that has large fat tires!) that we could’ve checked out for free to help me get down to the beach. However, we tried my wheelchair down the boardwalk to the sand, parked it at the end, and I could walk the rest of the way slowly. So, we didn’t need the Mobi-chair. It’s nice to have one available for free if I needed one though. The fire fighters were super nice and said they had oxygen if I needed it. I don’t think they realize just how much oxygen I use even though we told them 8lpm 24/7. *shrug* =o)

We went down to the Jetties where the shipping channel is. We watched the surfers catch a few of the higher waves that the hurricane had caused. We had a few red flag days there at the end for the water danger. That is where K went for a walk down the rocks of the jetty and found a turtle stuck head down between two massive rocks. Poor thing. We tried to let people know who where there but they all said not to touch it.. talk of big fines.. blah blah blah. So, he came and told me and we looked up the Sea Turtle Rescue place that we visited the day before and got them to come out to get the turtle out.

K got to name him Jagger (after Mick Jagger, of course!). They wouldn’t let him name him after Mike Modano (Dallas Stars!). We went back a few days later and checked on Jagger. He was doing well. Hope to watch his release on Facebook when the time comes. Every Friday and Saturday night we would go out on our patio when it got dark and a restaurant would set off fireworks that lasted about 5 mins. It was great! 

We had a great time. I felt a little weird driving with my Bipap on. I’m just glad that K had to go to Lowe’s before we left for vacation because he found the inverter I could use to plug in my Bipap and use in the van. I don’t think I would have made it there and back without the use of my Bipap during the drive. My breathing has become very challenging now. I use a Bipap almost all day and night now. 

[Health Update] I am going to contact my Sleep Lab doctor to get the ball rolling on getting me the more advanced machine called Trilogy. It can run on batteries or be plugged in and it’s mobile. I could use it anywhere in the house or in the car. It’s time to take that next step. K is slowly adjusting to my new health limitations. I’m proud of him because I know this isn’t easy for him at all. I just had my Telehealth visit with my Pulmonary Hypertension doctor. Everything we are doing is right. It’s just with age and progression of my limited ability to breathe, I’m happy that my heart is holding up as well as it has been. My lung volume has dropped. So, using the Bipap as much as I do now will keep the CO2 at a lower level. My next step will be getting an Echocardiogram (for internal blood pressures & chamber sizes) and a CT Scan on my ascending aorta aneurysm. I’m not a surgical candidate for fixing the aneurysm. There’s nothing they can do for it … just monitor it. It’s definitely past their criteria for surgical intervention. I am worried about it but I can’t spend my life worried about it. Just keep living life as much as possible and fill it with fun things to do.

I hope you all are doing well. Here’s a few pictures we took. We went on a painted turtle scavenger hunt!

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you. 

I AM HERE!

Doctor appointment day!

Yes, it’s me! I’m still here kicking the can down the road. I’m still alive. Hooray! Go me! This month has been filled with a lot of doctor appointments. K drives me everywhere now. So much has changed for us because of my health. K carries a heavy load of responsibility to care for the both of us and he does A GREAT JOB! 

Years ago we discovered that my ascending aorta was slightly dilated. It’s been a “wait and watch” sort of medical issue. That was back in 2010, give or take a few years. Now, it’s gotten to the point where I had to see a specialist cardiologist who deals with surgical interventions of Aorta Aneurysms. We knew what the doctor was going to say before we even went to the appointment. However, knowing what the doctor will say and actually “hearing” it, puts the fact of knowing that I’m not a surgical candidate and there’s nothing they can do for the aneurysm, has a finality to it. But you know what? I’ve heard that before about a lot of my health issues. No big deal. I can deal with this. Sure, my heart skips a lot and I have an aneurysm… that kinda sound bad, right?… my primary cardiologist feels that my cardiac problems are NOT life-threatening. A big WHEW! I’ll take that answer.

I’ve slowed way down and that’s ok! I can still make dinner and clean the kitchen most nights. So, *thumbs UP* I’m up to 8LPM of oxygen 24/7 and still use my Bipap when I sleep or if I need to power up during the daytime. In fact, I’ll be going to my pulmonologist next and then to a “special” pulmonologist after that. K and I are going to see if I would benefit more using a Trilogy machine instead of just the basic Bipap. (NOTE: if you own one of these machines, there has been a recall for certain ones. Find out more here.) A Trilogy machine is basically one step under a ventilator but one step above a Bipap machine.

Our long vacations are over. I just use too much oxygen and my health is too precarious to risk a long vacation. Our vacations were usually about 10 days which also allowed me time to rest when we got where we were going. It is just too much for me now. However!!!! K surprised me the other day and told me he was secretly arranging a trip up to see my family! I’m so excited! It’s a 3 hour drive and I’m pretty sure I can handle that. We’ll be taking my pups with us. 

Unfortunately, I won’t be able to get my 2nd covid booster shot before we go. I’m a little nervous about that but my family have all received their shots. So, I’ll be as safe as I can be while there. 

It’s getting really stinkin’ hot here. I think we totally bypassed Spring and jumped right into Summer. We’ve already hit 99 degrees. So, let’s stay safe out there. Carry water with you if you have to go outside. Be well! =o)

Coming together in a time of need in our house.

Living On Oxygen for Life

You probably are thinking this post is about the horrible Coronavirus that is going around and maybe it is a little bit. However, that’s not my main focus here because I’m sure we are all needing something else to occupy our minds for a little while. So, while this post may seem a little scary, I truly feel it can be uplifting as well.

Let me start at the beginning and tell you what has happened here in our house. It all started on January 14th, 2020. K and I were getting in the car about to drive off to select the vanity top stone to complete our bathroom renovation. Remember that little pipe leak we had last August 2019? Well, it still hadn’t been finished yet by January. We had turned the whole situation into a bathroom remodel and it prolonged the project. What a chore that was. =o) Anyway, as K got into the driver’s seat of our car, he just suddenly leaned his head on the steering wheel and then started looking around. He told me that something wasn’t right and that he was starting to feel dizzy and the world was spinning. At first, I thought it was just low blood sugar. I encouraged him to go back in the house and eat something. K is a man who will power through any illness. He’s a tough cookie and he doesn’t complain unless something really serious is happening. So, yes, this was scaring me.

K ate a donut and drank a little soda (I know, not the food I was hoping he’d pick to eat) and he decided we could still go to the stone place but I would drive. He did NOT tell me how he felt other than he was “fine.” We were in the stone shop and we picked out the stone that we wanted as our vanity top but I was watching him the whole time. It was apparent that he was NOT “fine.” So many things were going through my head. A lot of self-doubt. How am I going to be able to care for him? How was I going to drive him everywhere? What about his job? Are we going to be financially ok? PLEASE, PLEASE God let him be ok. I was in panic mode. I had not prepared myself to be the caretaker of both of us. Maybe it’s just a short bout of something but I was wrong.

I called my sister right away. She’s a PA and she thought it sounded like he was experiencing Positional Vertigo. She recommended doing some Vertigo excerises (Epley Maneuver) that I looked up on YouTube. Meanwhile I got him an appointment with our family doctor asap who diagnosed him with the same thing as what my sister thought it was and recommended the same home therapy. It didn’t help and he was walking as if he was on a ship at high sea, holding the wall to walk. He would lie on the couch holding his head. Every person is different with Vertigo. Some recover quickly. Some have it for a long time. The doctor, at first, thought he would be better in a week or two. He wasn’t. Paperwork had to be filled out to get him a leave from work and for the short term disability that we had luckily purchased (HIGHLY RECOMMEND!).

So after nearly a couple of weeks, he was referred to a Physical Therapist. I was still driving him around. I was exhausted. I had done more things in that time period physically than I had in a long time. However, he was starting to show signs of improvement.

He was home for six months from Vertigo. In a twisted way, it was somewhat of a blessing. With Covid just ramping up, he was home with me. It was the longest time we’ve ever spent together and it taught me a lot of patience and strength. He has been my strength when I needed it but I found that I could rise to the challenge of the occasion when called upon. It was stressful and so not easy but we learned a lot about our strength together as a team.

He’s doing so much better now for which I’m vastly thankful for. I kept thinking in my mind that it was suppose to only be my body that falls apart. However, everyone gets old and bodies wear down over time. I just wasn’t ready for his to trip me up. It was shocking. Life happens. God was watching out for us.

When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)

I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

Happy September!!

Living On Oxygen for Life

Happy September everyone! I’m super excited! First because it’s September! Second because it’s almost my birthday. Third because it’s almost my 25th wedding anniversary! And fourth because, well, it’s almost Christmas!!! haha! Here in Texas the heat of the summer is starting to cool down. Unfortunately, a hurricane hit. It’s very sad. People are struggling to clean up the mess after realizing everything they owned is ruined or washed away. It’s most likely going to go down in the books as the worst hurricane disaster in the United States’ history. Hurricane Harvey dumped 25 trillion gallons of rain on Houston and the Southeast area of Texas. Please donate to Red Cross Organization if you can. God bless Texas.

I have been away from blogging for a bit (2 months!) and for that, I’m super sorry. I have been going through some health changes that needed some “lifestyle” adjustments (again)… which blows… However, I’m here now, ready to entertain you once again with my exciting life of living on oxygen. So, let’s begin! YAY!

Today, I went to my doctor appointment. As the nurse weighed me, she asked if I wanted to get my flu shot today. I was like, “What? You have them already???” [insert confused, surprised look on my face] I normally get my flu shot in October. Not that I find it superstitious to wait until October, but it’s always been my thing. Ok, maybe it’s a little superstitious. hehe! I could get it now but I don’t want to feel tired and achy around my birthday and 25th wedding anniversary. So, I’ll wait until next month. I never miss getting my flu shot. It really helps!

If you can get a flu shot, do it, but I know some people have negative reactions to them. Be extra diligent about washing hands after touching things in public.

As I was driving home from the doctor’s office, I was looking at the gas stations. They still have no gas in them. Some have diesel fuel left but not unleaded. A lot of people panicked and ran out to get their gas tanks topped off, filled up and some even filled a gas can the last few days. Now, no one has gas left. I’m sitting on just under a quarter of tank of gas. K’s car had a quarter tank left this morning but I’m not sure if he’ll have enough to get to work tomorrow. I hope gas comes soon. It’s starting to freak me out.

Up all night…

Living On Oxygen for Life

Officially, it is Friday and Veterans Day. First, I would like to take a moment to say Thank You to all of men and women who have and are putting themselves in harms way to protect our freedom and our way of life. Many have sacrificed their life to give us the freedoms that we should never take for granted. We should always remember the price those men and women, throughout history, have paid for our rights and our freedom of choice.

Last night I was super tired and ended up going to bed at 8pm only to have to get back up at 9pm to take my Tikosyn. Because, you know, that pill has to be taken every 12 stinkin’ hours! Argh! Fear not, I was still super tired and promptly fell right back asleep. That is, until now, 1 o’clock in the morning.

I’m here under the covers in the dark bringing you my late, late, night ramblings of what happened to make me so tired. Yesterday, I had a doctor appointment. I got there a wee bit too early. I had to sit in my van for nearly 30 minutes because I wasn’t sure my portable oxygen tank would last long enough if I went in early. I have a 75 pound liquid oxygen reservoir tank in my van that I use to drive around on and to refill my portable. After about 30 minutes, I went into my doctor’s office for my annual physical. Yay what fun right? Actually, my family doctor is pretty darn cool!

According to all the labs I had done about two weeks prior, it looks like I should live another few years, at least! My doctor was surprised at how awesome my cholesterol and other test results were. Yay! I can continue to eat my pop tarts! Haha! As usual, my bicarbonate was high and my chloride was low but my kidney is keeping my pH level in balance. Thank you Jesus!

We did talk about pain management. Because my lungs don’t work as well as they use to (which wasn’t that great!), my options for pain management is VERY limited. My scoliosis is getting worse in the lumbar area of my spine and causing right hip pain which can be horrible at times when I sit or stand too long. Taking a whole Tylenol3 pill (that has Tylenol and codeine) is far too much for my body to handle. I have to break the tablet into quarters and take a fourth of a pill at a time. Even that much sometimes causes a migraine and troubled breathing. Alcohol has the same effect on me now. Instead of being able to drink a glass or two of wine or alcoholic drink like in the past, I can only drink about 1/3 of a cup before my breathing is affected. I still pour about 1/2 inch of wine in a glass occasionally to drink but never go for refills. It’s just not worth it. I think it affects my heart too much which I think is causing the breathing problems.

When I got home from my doctor appointment, I promptly took my diuretic medicine because I had to skip the morning dose. Then I dove right into making dinner, meatloaf, only to find out K will be late coming home. So instead of a full meal, we ended up eating meatloaf sandwiches. We love meatloaf sandwiches!! I’m not very good at being able to coordinate having all of the meal cooked and ready to sit down at the table to eat at the same time. I just don’t have that talent. haha! K is VERY good at it. He use to be a chef. No, before you ask, he does not cook on a regular basis at home. That’s my job. I don’t know where I went wrong in this scenario because he’s really good.

For the rest of the day, I plan to spend time with K. I am thinking about making a batch of my famous peanut butter cookies. I don’t bake cookies as much as I use to because it’s become harder and harder to mix the cookie dough. I don’t have a heavy duty KitchenAide mixer but I’m hinting towards one for Christmas. I can only get so far with a hand mixer and the rest has to be mixed by hand. The hardest cookie dough I’ve ever had to mix are the Chocolate with peanut butter chip cookies. Next would be Oatmeal Scotchies. Both cookies I LOVE! There’s nothing like a homemade cookie, right?

I’ve already started my next Need a Hug afghan. The last one was sent out to Jenny who lives here in the U.S. Click Need a Hug in the menu above to see how you can get your name on the list for one of my Need a Hug afghans.

I hope everyone has a great day. Stay well and warm. It’s finally down in the 70s here!

October Means Flu Shots

Living On Oxygen for Life

A little nervous. I have a doctor appointment tomorrow (Monday) and should be getting my flu shot. I’m nervous because last year when I got the Prevnar13 shot (a different Pneumonia shot) it nearly kicked my reared, leaving me feeling sore and wiped out. I told K that I wasn’t ever getting that shot again. He said, “Yes you will.” That shot is what stands between me and a stay in the hospital if I get sick and it progresses into pneumonia. I just hope the flu shot won’t hit me as hard as the Prevnar 13 shot did last year.

The flu shot usually gives my arm & joints achy pain as well an achy body with a mild sore throat and low grade temp (99 degrees) for a day maybe two. But that’s normal for me. It’s natural for your body to respond in such a way, to a degree, when it detects a foreign body. It tries to attack it and then it builds up antibodies to it to prevent future similar infections of that kind.

I hope if you haven’t yet gotten your flu shot and are not the few who have an allergic reaction to its ingredients, please get the flu shot. It can really help if you get a cold. It will help prevent that cold from turning into the flu or even pneumonia.

Here’s some information about Prevnar 13. Click on the picture to enlarge and read. This is the information my doctor gave me last year. You can also search my blog using the search box for a post I did about Prevnar 13.

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!

Change of plans? What?

Living On Oxygen for Life

I get a phone call today from my cardiologist to make sure I didn’t have any other questions before going into the hospital next week. I asked a few basic questions, one being, how quickly does this medicine take effect? We got to talking about Tikosyn and how the doctor will titrate the dose according to how my heart and body reacts to it. I’m sitting on my couch taking notes saying uh huh and ok. The conversation twists and turns to the part of the morning of my admission.

The woman says that the hospital will only call starting from about 8am if they don’t have a bed available. So if they don’t call, I’m suppose to go to the hospital registration/admission. From there, I have to wait around for a bed to become available.

WHAT? That wasn’t what I was told before. Last time, the hospital was suppose to call me when a bed was available and then I go there. I explained to the woman that I use oxygen 24/7, I’ve never been to this hospital before (which makes me nervous because they will only have whatever medical records that this doctor provides to hospital and I’ve only been to his office twice and actually seen the dude once!), and I can’t just wait around for what could possibly be a few hours for a bed. She told me to ask them for oxygen.

Now that K is home from work, I gave him the “Drama Update” and he was just as frazzled as I am about the whole thing. The GOOD news out of the whole conversation is that K can stay in my room with me the whole time if he chooses to which will be a hospital first for us. He always went home. I didn’t blame him. I mean our bed is much more comfortable than the provided chair, even if it does stretch out bed-style.

Today my heart has been skipping quite a bit. I’ve been relaxing a lot yesterday and today. I feel kind of sluggish or as if I have cabin fever or the winter blues. It’s been raining so much here. I’m just ready for some sunny days to bring a sunny smile to my face. Let me bask in the Sun’s warmth so that I may feel the glow of happiness grow into a smile on my face.

Tomorrow I head out to my PCP doctor appointment and catch him up on what’s been going on in the past 2 months. I should write some notes before I go so that I don’t forget anything. I have that much stuff to unload on him. Poor guy. He earns his paycheck with me as his patient. I think I keep things interesting for him though.

Well, I enjoyed this talk with y’all. I hope you did. I just shipped out a Need a Hug afghan to Washington state! Yay! If you want to donate to my Need a Hug project, you can do so by clicking the GoFundMe button. *hugs* Thank you!!! Have a great weekend!

I’m facing a decision that scares the heck out of me.

Living On Oxygen for Life

Let me set the scene for you, if you will allow me. *grin* You know I love a good story, yet this one is a hum-dinger! About a week ago, I put in a request for a refill of my heart medicine. It’s the heart medicine that helps with my Ventricular Arrhythmias and it’s called Cordarone. Now, mind you… I can take BRAND NAME only because the generic drug, Amiodarone and Pacerone, causes horrible headaches. I’ve tried a multitude of other heart medicines back in 1993 but they all affected my breathing causing severe shortness of breath.

So, I wondered why, when I got the email from my mail order pharmacy, which said that my Cordarone refill has been delayed. A few days later I called the pharmacy and asked wha’s up… you know? *raised eyebrow* This isn’t something I can go without. They told me that the medicine is no longer in stock and they didn’t have a date of when it would be arriving. That set off serious alarm bells in my head.

I went into my bathroom where my Cordarone bottle is and looked at the name of the manufacturer. Pfizer! Then I searched online to find their phone number to give them a jingle on my telephone. You know, just to ask them, wha’ up? I mean… seriously! I explained my situation about this is the only medicine my lungs can tolerate and I really need this drug. (Honestly, I was starting to freak out.) The people at Pfizer were super nice. They even put me on hold to find out what the problem was but they did NOT come back with good news. In fact, it was horrible news. Cordarone, they said, has been discontinued. But hey, there’s still the generic drug. UGH! I explained to them that I can NOT take that medicine.

After that call, I immediately called my doctor, who is a Cardiac Electrophysiology specialist, to tell them what happened and to beg them for an earliest doctor appointment available which was Monday. I went to the appointment but not only did I arrive to the wrong office (they have multiple offices!) but I had to beg them on the phone to allow me to still come in to see them instead of rescheduling. Can you imagine how stressed out I was? I had only 40 minutes to get to their office which was in a different city and there was major traffic but I made it and in one piece! Yay me!

Ok, so I’m in the doctor’s office talking it up with an older man about his mother needing oxygen. I guess when people see me they just naturally start talking with me or I’ll give them a friendly smile and they we’ll just start talking. I hate sitting in a quiet place waiting to be called. I naturally want to talk. *shrug*

I was able to talk with the Nurse Practitioner (because the doctor was out of country for the next week) for nearly an hour and it turns out that the only medicine that I could switch to is… That’s right… Tikosyn (I was offered that about 2 years ago and turned down but now I have no choice.) which requires a 3 day stay in a hospital to start it. To start this drug, I will have to stop Cordarone for 2 weeks prior to starting Tikosyn. If Tikosyn doesn’t work, I’m screwed. My other alternative is to try to buy Cordarone from Turkey through a Canadian pharmacy to fall back on in case Tikosyn doesn’t work. I’ve tried to buy it in the past from Canada, but they sent me Pacerone instead. I’m super, super stressed out… I need brand name. I have 28 Cordarone pills left. K took the news as well as expected. I’m going to call my doctor tomorrow and tell her I’m going to try Tikosyn.

K and I remember the experience I went through back in 1993 with my heart skipping constantly and it was not a good experience. We are going to try to make the 2 weeks without Cordarone as “low stress” as possible. Stress really effects my heart rhythm.

My only thought yesterday was … I really hope K brings home some ice cream for me. I could really use some. He did. He knew I needed it. I ate the whole pint last night. And it was delicious! Who knew Twix ice cream could taste so good??? Ok that’s my update.

Hey don’t forget to donate to my Need a Hug Project fund! I can’t wait to show you the afghan I’m nearly finished with. The donate button is on the right!

[March 2016]

A new PH medicine to be added..

Living Oxygen for Life

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.

May Update 2015

Living On Oxygen for Life

You may have heard of all the rain Texas has been getting over, what seems like, the longest month of May in history. Even my garden plants have developed a fungus on the leaves. I’m hoping I can salvage the vegetable garden I’ve put a lot of work on.

It’s been extremely humid here and that has taken a huge toll on my breathing and energy level… not to mention triggering a number of migraines. When I get this way, I tend to get in a funk. I hate funks! So, if you’ve noticed me being pretty quiet on my blog lately, that’s why. I was getting a bit of the funk. Even the kitchen reno has taken a pause. Yikes! That’s scary!

But slowly I’m coming back around… that fun, personable, groovy self that you all know and look forward to hearing from, right? haha!

On May 22, 2015, I had my Pulmonary Hypertension appointment where I was hoodwinked into doing a 6 – minute walk. Darn those doctors!!!! I have no idea how far I walked. I forgot to ask. I walked with 6 LPM of oxygen and still felt really winded. Oh well.. better luck next time, right? I don’t pay much attention to the results anyway. They are way too easy to skew the results. hehe! Even K thinks so. We had a fun discussion about that.

After the PH appointment, I had my CT Scan on my heart. It was to measure my ascending aorta (my aorta aneurysm — it sounds more dramatic saying aorta aneurysm!). My Cardiologist measured it with a Echocardiogram at 5.1cm late last month, which TOTALLY freaked me out. At 5.5cm, he would order a stint. But, he wanted the CT done because my heart is positioned in a way that it’s difficult to measure.

I have to tell you that I was pretty stressed over it. I wanted to know the size of it, right NOW! Luckily, with a bunch of people thinking about and praying for me, all has ended much better that I could hope for. Thank you so so so much, y’all! Much love to you! The CT Scan came back with the measurement of 4.3cm which is significantly lower but still considered dilated. My Cardiologist will continue to monitor it annually or semi-annually. It’s just so weird because I don’t have a reason for this aneurysm to happen.

I did get to go to Oklahoma to see my niece in her first ever dance recital and on the way (I drove alone!), I nearly had ANOTHER blowout with a tire that looked almost brand new. I had to pull off the highway because my van was making a really weird noise. When I looked, I couldn’t see the missing tread because it must have been on the bottom of the tire. That’s got to be Murphy’s Law! Thankfully, I was very close to my sister’s house and my brother-in-law handled it from there. This is a prime example of why we have AAA.com.

May has been a very trying time interspersed with a bit of joy. Just when we thought everything was going well in the beginning of the month, our heat pump (a/c) died and we had to get it replaced. That was NO FUN! But I did set up a donation GoFundMe account so that I can continue to create and send FREE of all charges crocheted afghans and lapghans to those who have breathing problems. This project has been so important to me. I recently sent out an afghan this month and will be sending out a few more within the next couple of weeks. It really keeps me busy and makes me feel happy to spread joy and comfort to those who need a hug and reminded that we all care about what they are going through. I want them to know that they’re not alone. So check out the Need a Hug tab above to see how you can qualify to receive a special made afghan/lapghan. Or, if you can spread the word about donating to this great cause, please do! www.gofundme.com/HelpNeedaHug. I keep this page updated as much as possible.

Have a great day everyone!

We bring you a Medical Update…

Living On Oxygen for Life

Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*