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*

Day One… It begins… Tikosyn!

Living On Oxygen for Life

Lemmon chicken with red potatoes from my garden.

Lemmon chicken with red potatoes from my garden.

On April 26, 2016. I woke up at about 4:30 am and I couldn’t fall back asleep. That’s pretty typical for me when I have something major happening that day. I grabbed my phone while in bed and I flipped through Pinterest to try to get myself sleepy again. Hey, it works sometimes! This time, though, I came across a recipe that I found myself mentally checking off all the ingredients it called for in comparison to what I have on hand. Well, what do you know… I had everything I needed to make this Lemon chicken with red potatoes from my garden.

I hopped out of bed, threw myself in and out of the shower and then got to cooking. When I was done, I went ahead and ate some. I know it was morning but who said you can’t have dinner for breakfast? If you can have breakfast for dinner, why not the other way around, right? *goofy grin* It was pretty good! At least now I had something ready for K to eat when he came home from the hospital. By cooking, it took my mind off of having to be in the hospital for the next 3 days.

The hospital finally called. You see, first the doctor’s staff said that the hospital will call when a bed is ready for me to come up to the hospital to be admitted. Then, the staff said that the hospital will only if there isn’t a bed available and if they didn’t call, for me to go up to the hospital to wait for a bed which worried me because I can’t just sit around at the hospital with my limited supply of oxygen. I’d have to get the hospital to supply me with their oxygen. I decided to call the hospital the day before to find out which method of calling was true. It turns out that the hospital calls me when they are ready for me and they did. However, when they called, they told me a room was held for me but there was an emergency and it was given to someone else. After shuffling patients around, they called me back with a bed ready. I got up to the hospital and into my room at about 1pm lugging my bipap, my 50ft tubing (theirs isn’t as long), clothes, all my medicine (you’ll hear much more about this later!), snacks, and yes, even my yarn! And that’s when the chaos began.

Selfie in the hospital to try Tikosyn.

Selfie in the hospital to try Tikosyn.

Once in the room, I was told to change into this high fashion gown made of pure, authenticated, designer cotton (tied in the back to obviously supply my back with the most opportunity of cold drafty air). K had to help me tie the back. I mean, who can tie those things?? Really!

Day One: blood draw & IV.

Day One: blood draw & IV.

Then, I was told I had to have an IV. Oh man.. I was so not happy but what could I do about it. I begged though. I’m not below begging when it comes to an IV, you see… I’m sensitive to adhesive and let me tell you… it itched and was painful the whole time (2 1/2 days!). And then there were the sticky electrodes that stay on. Ugh! Thankfully, I actually already had a lunch tray of food waiting for me. I couldn’t believe my luck! The food I made earlier in the morning for K, I ate as breakfast. So, I was pretty hungry by 1pm. Before I could eat, I had my blood pressure checked while sitting, lying down and standing up to get a baseline. It was all normal. Everything was going along swimmingly until I hear this pulsing dinging sound which kept going off loudly. Seriously, it was loud and sometimes it was continuously. It got to one point on the first day that I was fed up with hearing it and I asked my nurse, “What the heck is that noise??” She told me it was the nurse’s call button and my room was situated next to one of the two speakers of this bell. LUCKY, LUCKY ME! *rolling eyes*

At 4pm, I took my first dose of Tikosyn. I mentally braced for impact. I just didn’t know what to expect and neither did K. The doctor did come to see me later that evening. He kind of breezed through. I was unprepared to ask any questions.. so my mind went blank. Argh! I hate it when that happens. When I took my first dose of Tikosyn, they wait 2 hours and then they do an EKG. They do this for every dose of Tikosyn you take to see if you are at the right dose of Tikosyn. They want to know that your QT Intervals are under 500. Don’t ask me what that means because I just really don’t know. All I know is if it’s under 500, we’re doing good!

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I missed my dog Rocco while in the hospital. So I drew him from the picture I have on my cellphone.

I was SO cranky the first day. I knew K had decided to not stay all night at the hospital with me and I was ok with that. I was riddled with anxiety because everything was chaotic while, at home, everything is controlled. I know what to expect when I’m home. I take my medicine at MY usual time, I sleep in my own bed, my tv has more channels (hehe!) and people are not coming and going in and out of my house as they are at the hospital. Plus, I missed my dog, Rocco. I got out my notebook and drew him from a picture I have on my cellphone. I didn’t realize how much I would like the way it turned out. Drawing isn’t really my talent and drawing it in pen…well, I got lucky that it doesn’t look like a bunch of scribbly lines.

So much more to tell you but I leave that for Day Two! I don’t know how many of you like long blog posts. Therefore, I am breaking the whole even into separate day posts. I hope that’s ok. For those of you who don’t know what Tikosyn is… it’s an anti-arrhytmic medication for my heart. You can read more about it by clicking on the link. I don’t have Atrial Fibrillation. I have PSVT (paroxysmal supraventricular tachycardia), Ventricular tachycardia, Cardiomegaly, & Secondary Pulmonary Hypertension (Functional Class III)

The date is set….for Tikosyn

Living On Oxygen for Life

The date is confirmed for going to the hospital to try Tikosyn. Sometime during April 26, I enter the hospital and supposedly walk out on the 28th as a new and improved heart patient.

My last stay at the hospital was in 2014 when the PH medicine, Opsumit and my heart medicine, Cordarone (which is what I’m currently getting off from), clashed inside my body causing it to become hyperthyroid. That was no fun.

I documented that hospital stay on my blog and you can find it here: Life’s little emergencies. I’ll try to document this stay as well.

I hope everything goes well in that my body can tolerate Tikosyn without causing me breathing problems. I have a lot to take to the hospital but I’m going to narrow it down to my Bipap and mask, some comfy clothes & toiletries, my phone & iPad and hope I can use both in the hospital room to watch movies and communicate with the world. I’m even thinking about taking a small stash of yarn. you knew that was coming, right?

My heart is starting to act up. I stopped taking Cordarone on March 28 and before that, I was already tapering it down slowly over a 2 1/2 week period. Right now it skips and aches often. I hope it doesn’t feel any worse than this because I still have 13 days to go.

It’s time to go find my Wonder Woman underwear because I feel like I’m going to need a little bravery in the hospital. *fingers crossed*

Hey, just to let you know, I have a Need a Hug afghan ready to give away if you want it. It will go to the first person who emails me at goredrider@gmail.com and tells me their breathing problem diagnosis. It’s totally free to you! Lots of love to you all!!

Entering DEFCON 4 – when someone is sick..

Living On Oxygen for Life

Hello everyone! I bet you’ve been wondering what I’ve been doing lately. Right? Well, it’s official. I’m placing our house on DEFCON 4 alert. K is sick with a sinus infection and it seems like he’s getting worse instead of better. You should hear his cough. It’s awful. Hence, the reason to move to DEFCON 4.

Wondering what DEFCON 4 means? The list below describes my self-made DEFCON alert system for our household. Enjoy!

  • DEFCON 1: Happy and HEALTHY
  • DEFCON 2: If one of us thinks we are getting sick, no hugs or kisses from each other. Definitely not sharing drinks or utinsels.
  • DEFCON 3: This one is harsher. It includes DEFCON 2 actions. Plus, I grab a tub of Lysol wipes and wipe down all door knobs, remote controls, cellphones and computer keyboards. I monitor K’s condition but I do not hover over him.
  • DEFCON 4: The doctor is called. Not just for him but for both of us. For obvious reasons since K is the one that’s sick, we either get an appointment or see if the doctor will call in antibiotics. Then I tell him the possibility of me getting sick from him. I just let him know that I’ve been exposed to something that K is currently fighting. ALL dishes that K touches goes immediately into the dishwasher. I never let him drink out of the same glass twice. So no refills in the same glass. Call me paranoid but I really think this helps. I keep a supply of Gatorade in the fridge and leave a bottle of it on his bedside table. He’ll usually drink it when I’m not around.
  • DEFCON 5: This is the one I generally have to enlist K’s mom to help me. K doesn’t really like going to the doctor let alone have to go to the hospital. There has only been one time that I’ve had to take him to the hospital. (Thank you Jesus!) but he’s had to go to a 24-hour emergency clinic once before when he was sick. He’s a pretty stubborn guy! Bed sheets are changed immediately unless I can’t get him out of bed. If that’s the case, the pillowcase gets changed everyday.

So this is my basic DEFCON alert system guideline. Obviously DEFCON 1 is Happy and Healthy and that’s where we always want to be! Now, I’m about to go to the grocery store to stock up on more sinus medicine and gatorade for K. We’ve had to put off the grocery shopping for days and days. Now, I’m going to go alone because K just isn’t up to helping me. It’s ok because he knows I’ll just get the stuff that we really, really need and then he will go with me the next time when he’s feeling better to get the heavy stuff like kitty litter.

I hope all is well with you! *hugs* Don’t forget to follow my blog!

Christine
[April 2015]

The evil that I know… Tracleer!

Living On Oxygen for Life

I bet you were wondering what happened to me? Well, you know I had that doctor appointment with the Pulmonary Hypertension doctor, right? That was on September 5th. I wrote the September 5th blog post before I went to see the doctor. Did you know that the pediatric dosage weight limit for Tracleer is at 40kg? My doctor didn’t even see a pediatric dosing weight for Opsumit. You’re probably wondering why I’m telling you this, right? Well, it’s because I only weigh 98lbs which converted to Kilograms turns out to be nearly 45kg. So I’m pretty close to 40kg.

The whole time I’ve been on Tracleer, K and I have told my PH doctor that during the first month of taking Tracleer, I did and felt really great. Tracleer is started on half dose… IE: 62.5mg twice a day for a month. After the first month, the dosage goes up to 125mg twice a day. When I went up to full dose and after a few months, I started to feel bad. I lost endurance and my shortness of breath became worse over time. I even lost interest in a lot of things. Opsumit was much worse for me and I ended up in the hospital (August 5th of this year). I know, it’s crazy! Why aren’t the doctors listening to me and K?

Finally, during and after the hospital stay in August, K and I were at our limits with the whole PH medication thing. I actually told the hospital PH doctor (the partner to my doctor) that… “With me and the way my body reacts to certain medications, you have to start thinking outside the box to treat me.” I told her, “I want to be a part of the decision making for the treatment care to my body.” Not that I felt that I wasn’t on the team but I just wanted to remind them that I’m not stupid or gullible or even a non-active participant in this whole hospital situation. Shoot, I was on a roll! I told her that I wanted off of Opsumit and back on Tracleer. Heck, it was the evil that I knew.

So, at the doctor appointment on September 5th, we saw my PH doctor. K and I laid it all out there about how very frustrated we were. I think we finally got her to see the light. I do not have primary pulmonary hypertension. My pulmonary hypertension is something that I was born with and is due to malformation of my ribs that decrease my lung volume and due to the heart problems that I was also born with. They tried a lot of PH medication to treat the Pulmonary Hypertension and Tracleer does bring my PH pressures down but it costs me my breathing ability and the quality of life I would like to have. I didn’t start having my Pulmonary Hypertension treated until year 2006.

I bet you’re thinking: Now what? Right? Well don’t fret, y’all! We got a plan. It’s pretty shady but I finally got the doctor to agree to let me try it. The doctor, K and I all agreed that I could either come off of PH medicines all together or take Tracleer at half dose for the next 3 months and then do a heart cath in December. The way I see it is that however much the medicine brings down the pressure, if it’s bringing it down, it’s still considered HELPING whether at full or half dose. Of course, it could just not work at all like the PH doctors think will happen because according to all the clinical trials, Tracleer doesn’t work at half dose. I wonder how many lightweight people they did the Tracleer clinical trial on. I can’t even take long-acting type of medicine for this reason.

I’m thankful I still have a whole bottle of Tracleer leftover from switching to Opsumit. That way the doctor doesn’t have to do the paperwork yet for Tracleer full dose.. just for the half dose. It’s a little complicated. Technically, I’m not suppose to break the 125mg pill in half myself. The doctor said it shouldn’t be done. K and I looked at each other in the office and rolled our eyes. I’m breaking my own darn pills! Why get MORE Tracleer when I have pills I can break in half?

I hope everyone had a wonderful Summer! You know what season it is, right? It’s FLU SHOT season! Get yours this month! I’m getting mine early next month at my doctor appointment for my annual physical. I’m still battling to get my thyroid under control but I have hope that since I’m back on Tracleer…all will be well again!

Stay well! FOLLOW my blog!!! Lots of love to you all!

A lot of catching up to do…

Living On Oxygen for Life

I can’t express to you enough how crazy the month of August had been and it seems to be overflowing into September. I had a LOT of doctor appointments last month and there wasn’t a week where I didn’t have at least one appointment. This month has been a little better but the doctors now think it’s ok to call to tell me that they have to reschedule my appointment because they need to be out of town or whatever. I don’t know if they even realize that K has to take off from work to be able to drive me to these appointments. It’s not like he can take off willy-nilly at a spur of the moment. Unless it’s an emergency (like really an EMERGENCY), he needs to give his job a two weeks heads-up. These Dallas appointments and the actual emergency trip to the ER and my admittance to the hospital in Dallas last month is starting to really burn up K’s sick leave.

Now, that’s not to say that I can’t drive myself to the local doctor appointments except for the one’s where I’m having the nerves in my neck cauterized to help with migraine headaches. I’m not allowed to drive myself for those. In fact, until I get my breathing and my thyroid problems under control, I’m postponing the final cauterizing appointment. I just don’t need the added stress of the procedure.

The thyroid medicine that I’m taking has still not stabilized my thyroid level yet. It’s getting me really frustrated. We still don’t know for sure what caused my thyroid to act up. I had all sorts of tests in the hospital. I’m hoping it’s going to be a temporary thing and then go back to being at a normal level. The sooner the better! haha!

Today I have a Pulmonary Hypertension doctor appointment. I’m back on Tracleer; still on the half dose for the next 2 weeks. Then I get bumped up to full dose at 125mg twice a day. I chose to switch back to Tracleer because it’s the evil I know whereas I think (my personal opinion) that the Opsumit was the culprit causing the breathing, low potassium, body pain and thyroid problems. That is too many things happening out of the blue, in such a short time span, to make me think that Opsumit is doing something to me. However, I could be wrong. I’m pretty frustrated that I left the hospital with just the diagnosis of being Hyperthyroid. They wanted to blame it on my heart medicine (Cordarone) which is understandable but my Primary Care doctor was saying that he thinks Cordarone can cause “Hypothyroid” not “hyperthyroid.” So, he’s going to look that up. He’s on the case! Though, he doesn’t want to step on the toes of the Dallas doctors.

Another thing that bothers me is that while I was in the ER they drew labs and the results showed the ALT and AST functions were high which have never been that way for me in the past. These show how your liver is doing. Not once did they tell me this. I had to find out by requesting a copy of my labs. When I brought it up with them via email, they said they weren’t worried about it because the labs I took 3 weeks later were normal. My question is: Why were they abnormal in the hospital? and How long had they been abnormal before that?

Ok, I’ll calm down now and tell you how my week went with my mom since she came for a visit this week. I had a really good time with her. She doesn’t move very fast. So we could relate to each other really well. She transplanted the flowers I brought home from the hospital for me. She’s a great gardener! We had a fun competition of doing Sudoku puzzles. She is definitely better than I am. I guess she thinks faster than me. haha! It’s ok… we had fun. K and I are going to have her come down often because she can ride on the train now. YEA!

I do want to mention that there is a “Need a Hug” giveaway going on right now! The deadline is September 12th! Go here: Read how you can enter to win a Need a Hug afghan!

FOLLOW MY BLOG via email. I don’t want you to miss out of all the fun adventures I have while living on oxygen! Stay well!

Reality…

Living On Oxygen for Life

I’m not invincible. Though, I like to think I am… *grin* I have weaknesses and I cry. I have bad days that make me feel like I’m dying and I struggle to find the one thing that will show me the goodness of life. A lot of the times it is the memories of fun things I’ve done with my sisters, family or with K. Other times, it is the comments or emails that I receive through this blog or my Facebook page. I take a lot of pictures and turn them into photo books for this reason too.

While in the hospital, earlier this month, my younger sister called me. She was surprised that I was laughing and cheerful and she asked me how I could be that way. I told her that it’s better to laugh about it than to cry. She asked me if I was scared and I said laughing, “Heck yeah I’m scared.”

Even though I have all these medical problems that make me feel bad (a lot!), I don’t want to leave with them a memory of me crying. I’d rather have them think of me as a happy person. Does that make sense to y’all? That doesn’t mean that I never break down and cry. There is only so much stress, bad news, pain, and struggling to breathe I can handle.

It’s ok to cry. It doesn’t mean that you feel sorry for yourself as long as you don’t wallow in it. To me, it’s like a reset button or a relief valve on the mounting stress. So, am I always the happy-go-lucky gal you see? No, because life is hard and filled with challenges. Filled with tests of strength. I’m up for the challenge. It’s just sometimes it gets to be too much.

This month has been exceptionally challenging. Thank you all for being there for me. *hugs*