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’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*
This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks. We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.
Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.
What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!
A tragic accident happened yesterday. *sniff* *gulp* I was hot-footing after K in Lowe’s last night, reminding him to please slow down. You see, even after all this time together with each other, he will sometimes forget that I’m slower than he is. “What?!?” You ask. I know, I know. I’m stunned by that revelation myself but it’s true.
K “needed” more garden supplies. I swear for a man who originally didn’t want a yard when we were house shopping years ago, he sure has taken up gardening as if it’s a lifeline. Honestly, it can be and has been. Even though it’s a lot of work, there’s a lot of joy and even a bit of escapism to it. He’s made our yard it our little project that is never finished and that’s ok because we love every change we bring to it each year.
Now, back to Lowe’s. Right. Where was I? Ok I remember. “Slow down,” and he turns around to look back at me while turning the cart filled with bags of dirt. “K, I’m not made for this speed anymore.” I smiled at him and that’s when my life goes into slow motion. I see K about to say something and then I caught something flying out of the corner of my eye.
Have you ever experienced something happening that you knew wasn’t right but you weren’t in the position to stop it from happening? Well, that was K and I. I was too far away and K was still looking at me when the dirt shifted in the cart that he was still pushing around a corner. There wasn’t a darn thing we could do. My portable liquid oxygen tank got squeezed out of the cart’s seat and flew out and smacked the concrete floor. The plastic casing came wide open and top was tilted out way wrong. Oh crude buckets! I gently picked it up, trying to squeeze it back together, when my mind was wondering if these things blowup. Apparently not this time. However, K’s first thought was, “Is it still flowing oxygen?” Isn’t he so sweet???
Miraculously, the darn thing was still working but I asked him what her would do if it didn’t. He said, “We’d figure it out. We always do.” What a guy, right? It wasn’t until we got back to home that we tossed around some ideas of what to do in that scenario. It’s always good to have a plan in place for such things because I can not be without oxygen for very long before I start to suffer badly and that’s if I’m just sitting somewhere without talking or moving to conserve my body’s oxygen supply.
When we got home we discussed what we could have done if my portable had stopped working. I’m a little nervous to tell my oxygen provider that my portable is broken. But hey, these things happen, right? A lesson has been learned here for us. We will never forget to strap in my portable tank using the child safety belt in the shopping cart. I mean, we took the time to connect it through my purse strap but didn’t do it this time for my portable.
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!
We may not have the same medical condition but we have breathing problems. It’s why I blog… like the Avengers… When we stand together, we bolster each other to keep us strong. To encourage each other to move forward and FIGHT the battle that our breathing problems bring us. We are individuals but put together we are our strength and our encouragement.
I just watched the movie The Avengers and it really got to me. We each have our own strengths and our own weaknesses. We don’t have to be someone who is able to be strong in all areas of our lives. That’s the great thing about having the support from other people who have breathing problems. They can relate and they can listen to our concerns, our fears, and our own accomplishments.