Health update… with pictures!

Living On Oxygen for Life

There are so many things to talk about but this time I’m going to concentrate on the doctor appointment I had yesterday with my Endocrinologist. One thing I want to bring up that makes me frustrated about the “New” computerized digital medical records system vs. paper records, is that it seems like most doctors do not take time to review a patients records (i.e.: lab results that have come in recently or any paper questionnaire that we fill out prior to making it back into the patient room) before they open the door to the patient room. I’m not even sure the doctor read the questionnaire, because she just asked me to tell her what’s been going on since the last appointment. I actually had to tell the Endocrinologist that, yes, I did my labs like you requested a few weeks ago and they SHOULD already be faxed to her for to have ALREADY been reviewed. She had to leave the room and ask to see if they had been faxed from the lab. Guess what? They were waiting for her.

Ok, I’m feeling a little disgruntled. It’s just that when the doctor left the room, K and I looked at each other and both did the “eye roll” and we knew we were both thinking…“Here we go again..” Surely you’ve been there before, right? =oP Alright… the doctor walks in with the results and you can see below what they were. Just click on the picture if you can’t read it.

I had to correct her about how many milligrams of Methimazole a day that I was taking and explained that she had decreased my dosage last month. She looked in the computer to see that, yes, I was right. She asked me how I was feeling. I told her I felt better since the decrease. In fact, I told her a big no-no that I did. (I had to confess and I’m glad that I did) You see, after the TSH labs that I did nearly 2 weeks ago, I decreased my dose again without her authorization. Shame on me… I know! Instead of 10mg a day, I started taking 10mg every other day. So, it was really 5mg everyday. She was ok with that, which totally surprised me. I told her that on the days that I was not taking the medicine, I felt a little more energetic. I DO NOT RECOMMEND TO ANYONE TO DO WHAT I AM DOING! Since my TSH has shown a pattern of going up instead of being low as in Hyperthyroid, taking less Methimazole was only logical to me. Now she wants me to take only 5mg every other day, have labs done in 7 weeks, and then again in 4 months. I’m hoping before 4 months, I can totally be off the medicine which is the goal.

Unfortuately, it takes the thyroid a long time to become balanced. That’s why my doctor is going slowly with decreasing my medicine. Ok, enough about the doctor appointment! Let’s get into the fun stuff. After the appointment we decided to go to the Dallas Arboretum since the tulips where in bloom. How can ANYONE pass up looking at tulips. They are gorgeous! I will post some gorgeous pictures that K and I took from the arboretum, hopefully tomorrow… or later today. I have to go through all of them. I took about 265 pictures! Here’s a few to get you started…

Dallas Arboretum
March 2015

Christine at the Dallas Arboretum
March 2015

I hope everyone has a great week! Stay in touch by finding me in Instagram, Facebook, or just email me! All those links are on the right side of your screen.

P.S. Keep on the look out for a video that I will post about oxygen concentrator filters and my hobby updates! Way cool stuff! Coming soon!

[April 2015]

Random Picture Day #13

Living On Oxygen for Life

Hello everyone! Wow… time sure does fly quickly. Doesn’t it? Well, I guess it seems kind of slow if you are snowed under. I hope you have sunshine by now. It’s starting to peek out more and more here in Texas. It is amazing how much a little bit of sunshine can change a person’s mood… from rainy-gloomy-cabin-fever blues to rip-the-doors-off-the-house-and-let-me-at-the-glorious-sunshine happiness. This Winter has been a heck of a roller coaster. So, I guess Spring has sprung and all that sweet sunshine has brought our daffodils up and blooming. That is until someone came by and cut and stole them from our front lawn. K was crushed. All that work and now it’s like he has nothing to show for it. The thing is.. he told me that he would have been happy to give them to whomever wanted a few if he’d just ask for them. K would have felt like someone sweet, other than me… of course *wink*, was going to enjoy them and appreciate his effort. But no… someone stole them. I’m a little worried about the tulips that are starting to come up. As you know, daffodils and tulips, make their appearance once a year in the Spring and they are beautiful. Majestic, really, which makes our next outing plans super exciting. It’s a wheelchair adventure with my new camera I got for Christmas! Thank you Santa!

We are going to a place that is GLORIOUSLY filled with tulips, daffodils, and so many more types of flowers. The last time we went to appreciate the flowers was about 5 years ago. Here’s two pictures that I took there.

Taking pictures with my Nikon dslr 5200 camera is something I LOVE doing. It’s something that is easy to do while having to use oxygen. It doesn’t take a lot of energy unless I am having to move about a room like at a wedding reception. I like taking candid, spontaneous pictures of people in the moment instead of posed people in a group picture. But nature, by far, is my favorite to photograph. K has really developed an eye for photography. Sometimes my hands are too shaky because I get tired or my oxygen saturation drops and that gets me frustrated because pictures can blur. So, K will drag the tripod around with us if I end up needing it, we’ll have it handy.

So, what am I really like? You read my blog. Do you wonder… what is she really like in person? Here’s a bit of a weird bio.. I’ll try to add a little bio each time I remember!:

• I have to say that I am pretty goofy.
• I’m afraid to tell you that I can be a bit cranky or fussy when I’m tired but who isn’t, right?
• I read a LOT! I should list the books I’m currently reading or at least, the books I’ve read that I think are good. I get most of my books through Amazon and read them on my Kindle app on my cellphone. Did you know that they have a boat load of free books? Just use the filter to look at the LOWEST cost books first. (you’re welcome for that tip!).. Thank you Thomas K., my Scottish friend! *wink*
• I’ll only eat spinach in a salad. I love it raw/uncooked!
• I’ve never been to college but I’ve been to a trade school. (Travel Academy)
• Daisies are my favorite flowers. There’s something about them with their simple, innocent look.
• I love my wheelchair and it’s driver (aka: my husband)
• I believe in training a dog with the reward system versus punishment system.
• To motivate myself in getting things done that I really DON’T want to do is by rewards (no I’m not a dog! *wink*). Those rewards can be ice cream, ice cream, and maybe some more ice cream.. but if I’m out of the ice cream (watch out!) then I’ll take whatever it takes to make me smile and moving with a pep in my step.

 

Now finally, here’s the part you are waiting for… Ready? My health update… YAY!!!: I did some lab work last week because my Endocrinologist asked me to. Instead of my TSH (thyroid stimulating hormone) being too low, it’s flipped out and gone the other way. Needless to say, since I switched back to Tracleer (bosentan) from Opsumit (macitentan) and started taking Methimazole, it has worked especially well. Unfortunately, it worked too well and I have had to cut back on the Methimazole two weeks ago. I’m thinking that I’ll be off the medicine all together after my next Endocrine appointment at the end of this month. The weird thing is… I asked my Pulmonary Hypertension doctor if they have heard of any other PH patients on Opsumit having the same TSH problems. She said no. That’s why they keep telling me that they think it’s my Cordarone (Amiodarone). Though, Amiodarone, is not a good medicine to be on, it’s the one medicine that I could tolerate when my heart started it’s arrhythmia problems back in 1993. I’ll be going to see my Cardiologist for an Echo and to discuss this more and maybe see what else is out there that can replace Amiodarone. I mean it’s been 20 years. Surely, something better and MUCH more expensive is available by now. Though, Tikosyn was recommended to me as my first option last April but I’m not too thrilled with it. I don’t have A-fib and I’m not ready to subject myself to a new medicine that I’m not at least 75% sure that it’s something that will do more good than harm. I’m just not one of those patients that blindly go where doctors lead me. I read up on everything they suggest.

Stay in touch because I love to hear from you. You can find me on Facebook, Instagram or email: goredrider@gmail.com *HUGS* to you all!

Chicken what???

Living On Oxygen for Life

Though I am 45 years old now, I grew up with two sisters who are healthy but had the misfortune of coming down with Chickenpox as children. That’s right… they had chickenpox and I somehow was spared the dreaded virus when my sisters had it. I wasn’t allowed in the bedroom they had to stay in together but I did talk to them from doorway when my mom wasn’t watching. Shhh!! Don’t tell!

Chickenpox is pretty contagious. For some reason my mother thought that I must have caught a really mild case of chickenpox when my sisters had it. I never really thought that I actually had chickenpox but maybe I had, as child, developed some antibodies to protect me from the chickenpox. I mean, since I was around my sisters or at least I was in the house too.

Now that I’m an adult and my mom kept thinking that I probably had a super mild case as a kid, deep down I still thought I didn’t. I was careful over the years when there were rumors of someone, within my vicinity, coming down with chickenpox. Having the chickenpox as an adult is much worse than having it as a kid. Couple that with being a respiratory and cardiac patient while having the chickenpox as an adult… well, it’s a recipe for trouble.

After hearing about a vaccine for the chickenpox in 1995 on the news a few months ago, I started wondering… Do I REALLY have antibodies for chickenpox? I thought it was time to find out for sure.

So, during my last appointment with my Primary Care physician, I asked him how likely was I to have been exposed to Chickenpox but never developed the virus to have chickenpox antibodies in me already? Hey, it was a good question, right? He said it was likely that I had antibodies. But we weren’t really sure. I wanted to get the vaccine but if I already had antibodies for the chickenpox, then I didn’t need it. The only way to know for sure was for me to get lab work done for Vericella. I told my doctor that I’m pretty sure I didnt have the antibodies and he bet me that I did. I said, “Ok, I’ll bet you some ice cream that I don’t have them.” Guess who won? I wonder if he’ll get me some ice cream.

I went today to get my first of two shots. The second will be in a month. It’s a live dose which makes me nervous. I’ve never been given a live dose of anything before…. that I know of. So wish me luck! You can read all about Vericella (chickenpox) from the CDC website.

Have a great week everyone. It was nearly 80 degrees today and I really feel for the people who live in the NorthEastern coastal states. What a blizzard!!! Stay warm! Follow my blog so you don’t miss anything! *hugs*

Heart Cath Results!

Living On Oxygen for Life

Many of you want to know the results of the Right Side Heart Cath that I had on December 1, 2014. I always schedule the heart cath with the same doctor. I trust her and she has performed all but one of them here in Texas. I say “in Texas” because I’ve had numerous other heart caths as a child (all right side heart caths) in the great state of Indiana where I was born. Though, those childhood heart caths were performed while under anesthesia. Now, my heart and lungs do not tolerate sedation. As an adult, I have all my heart caths without taking any kind of medication. Plus, I don’t have an IV. I know… brave.. aren’t I? *wink* At first, I was a little scare because I’d never had one without being asleep. But now, it’s something I’ve grown use to, except the numbing of the neck part. I will not lie to you…that freaking hurts. I hope I’m not scaring anyone.

This year was a very important heart cath. I was out to prove something to the doctor… or at least I was hoping to prove my hypothesis..? theory? Whatever the word is.. I was out to prove my point. Since 2006, I have been taking Tracleer, though, throughout the years until now, I’ve tried numerous other PH medicines. I’ve tried Revatio (Viagra), Adcirca (Cialis), Letairis, Tyvaso, Opsumit and even Flolan during my first heart cath. The only PH medicine that my body can tolerate to a degree is Tracleer. I say to a degree because I do well on a half dose (62.5mg twice a day) but when I up the dose to the full adult therapeutic 125mg, I start having problems.

I have been taking Tracleer for the past 8 years. Over those years, I’ve come to know how my body performs while on this medicine. K and I both repeatedly told my doctor that when I took the half dose of Tracleer, I did well. But when I took the full dose, my breathing started having problems with more shortness of breath, lack of motivation, and tightness of my chest when I exerted myself. I got frustrated with the doctor and then I got mad. So, I switched to Opsumit, the newest PH medicine available. That turned into a fiasco. So, back on Tracleer I went but the doctor finally started to really listen to what I was saying. She looked up the weight cutoff for a pediatric dose and found I was very close to the 40 kilograms. All this time over the past 8 years my doctor told me that the clinical trials shows that Tracleer only works for adults on a full 125mg dose. But in the doctor’s office, in August 2014, we came to a meeting of the minds decision that I was going to try Tracleer at the pediatric dose of 62.5mg twice a day for the next 3 months. At that time, I will agree to have a heart cath to see if the lower dose will work for me since I’m only 100lbs.

On December 1, 2014 I finally had the heart cath. I wasn’t very excited and I sure was nervous. I really wanted the half dose of Tracleer to work. I wanted to be right because if I wasn’t, I’d be going back to full dose. After all, the full dose lowered my pressures. It helped my heart but hurt my breathing. Grr… It seems like I can never win! The doctor comes into my room to talk about the paperwork and to mention she will have a Resident working with her but she reassured me that if he has trouble then she’ll step in. I was a little nervous but it was nothing new to me. So, I told her… “Go Team!” haha! She laughed and then told the Resident in the OR what I said. If anything, I’m very silly. I am finally chauffeured back to the OR room while chatting it up with the driver of the bed. I mean, pushing those beds looks hard! But the woman said the bed has a steering gear. Who knew?? That’s pretty awesome! Once I’m in the OR, I get through the heart cath after being brutally (*wink*) being stabbed in the neck repeatedly to numb the area. Once I’m wheeled back to the recovery where where I started out before the cath, I was lucky enough to have my followup appointment in the room so that I wouldn’t have to go upstairs to the clinic. My doctor is one of the very few who does this for her patients. YAY!

The staff gave me a printout of the results from my heart cath, but seriously, it isn’t something that I can figure out very easily. So, I had the doctor explain some of it. Here’s mine compared to a normal heart.

Picture from The Merck Manual.

Representative right heart O2 saturation =75%
Representative left heart O2 saturation = 95%.
Atrial pressures are mean pressures.
AO = aorta; IVC = inferior vena cava
LA = left atrium; LV =left ventricle
PA = pulmonary artery; PV = pulmonary veins
RA = right atrium; RV =right ventricle
SVC = superior vena cava.

The PA (shown in my cath results) pressure is 52 which has stabilized over the past 5 years. So the doctor isn’t too concerned about it. She was happy that the blood coming back from my body has a 71% oxygen saturation. It is suppose to be above 70%. It is considered my “reserve” oxygen in case I have trouble. The FA, which is the blood that comes from the lungs and goes out to the body and it is showing 100% which is good because I am wearing 6LPM of oxygen during the heart cath even though it shows on my results paper as ROOM AIR. As you can see, my heart has some problems but I’m managing. I rest when I need to and play when I want to. *wink* Now that I’m older and supposedly wiser, I don’t do as many stupid, reckless things anymore. I don’t touch alcohol unless I want to try a sip of K’s cocktail at a restaurant, I don’t let myself get overly tired often by staying up past 3am, and I, for sure, am careful about what I eat. Although, I did eat pizza last night. I already feel the sodium at work. Darnit!

With these heart cath results, I feel relieved. The doctor agreed to continue the Tracleer at the half dose of 62.5 because of my weight and the fact that my pressures show that my heart is stable even at the lower dose. I did agree that at anytime I find myself starting to have more problems, I can always up the dose back to the full amount. I may be a rebel but I am NOT stupid with my health. My doctor was ok with this and K and I left happy and I felt this battle was worth it.

I can’t wait to show you what K and I have been up to with Christmas decorations! Next post… I promise! Stay warm everyone. You can always email me at goredrider@gmail.com Be sure to FOLLOW MY BLOG so you don’t miss a thing. THEO… I have NOT forgotten you. *wink*

Health Update..

Living on Oxygen for Life

Hello! I hope you read my last blog post and realized this is my health update. What’s crazy is that it seems like it’s been so long since I blogged last. What’s wrong with me??? My motivation has tanked badly but never fear. I am STILL here! I post on Facebook and Instagram. So, you can get a glimpse of my life that way. In fact, if you don’t have Facebook or Instagram, you can come to my blog and on the lower right side column you can see what I post in those two apps. I try to make it accommodating for those who do not wish to have FB or Instagram. I don’t want you to feel excluded. I love you all! haha! *hugs*

Ok Ok! I’ll get started already on my health update. Where should I begin? You probably already know that since August of this year, I have magically become Hyperthyroid. Don’t ask me how, because no one… I mean NO ONE knows for sure. One doctor says it’s from my heart medicine, the others think it could be hereditary through my father’s side. If it was caused by my heart medicine (Cordarone), I should be Hypothyroid which I am not. Before taking Opsumit, my TSH was teetering on the “Hypo” side and WHAM-O I’m Hyperthyroid. Confused yet? Yeah, join the club. *sigh*

So, for the last few months, I’ve been taking thyroid medicine. Cause you know that I love having to take just ONE MORE PILL! Oh wait, I take 3 of those pills a day. Ok Ok… 3 MORE PILLS a day! I had my annual physical last month and was thinking, hey the doctor can get all my thyroid blood tests done and all the other labs done all in one stick. Unfortunately, he only ordered the TSH and not the T3 and T4 labs. That’s what I get for assuming and not double checking with the doctor. I had to rush over to the lab again to get restabbed. Always a joy! *wink*

Needless to say, it took a crazy long time to get the lab results back for my thyroid. The T3 and T4 are finally within normal range. Hallelujah!! However, the TSH is still pretty low at .02. The Endocrinologist said it will take time to get my TSH back to where it belongs but she is hopeful that I will not have to be on a steroid medication. I am avoiding that. I don’t do well on oral steroids. It makes me swell up and retain water. I only do well on IV steroids. So, my doctor was REALLY hoping that my thyroid would respond to Methimazole (Tapazole) and because it’s responding, I’m to continue with the medication. Labs every two months and an appointment back with her in 4 months. She reminded me to call the pulmanologist if I have a fever and start feeling like I’m coming down with something (sore throat) so that I can have my white blood cells checked. Methimazole can affect the White Blood Count and leave you vulnerable to infections. Hooray!! This was especially nice to hear after the fact that I had a terribly sore throat last week. Since I’m always on top of these things, you can bet my phone was dialing my primary doctor before I even could say, “I better call my doctor for antibiotics!”

Now, you are probably wondering if this is overuse of antibiotics. For me? No way. I rarely have need of them because I’m very careful about my health and being around others who may be sick. In fact, I think I’ve only needed antibiotic about once a year and that’s precautionary. My lung volume is so low that I can’t wait long to see if I will recover from a sore throat. Why risk it? In the past, I’ve gone from sore throat to pneumonia overnight. Ask my mom, she’ll tell you. So not fun.

Now that I’ve been off Opsumit for two months, my breathing is no longer so labored when I do chores. That’s not to say that I don’t have shortness of breath while I vacuum a room. That’s a given but at least I’m not bent over gasping for air either. Thank you Jesus! I am definitely happier for that bit of mercy. I think some of this happiness comes from the oasis my husband had built for me. Our back patio is now where I can come outside and sit down to enjoy some outdoor peace. I will have to show you some pictures of it on my next Random Picture Day which will be soon.

Be well everyone! Take care of yourself. I hope you have a great Halloween! You can always reach me through my email at: goredrider@gmail.com

Sleep… can you tell I’m not getting enough sleep?

Living On Oxygen for Life

I’ve decided to try my hand at creating something new. Want to see? Of course you do! Just keep in mind that I’ve never made one of these before. So, it may look a little amateurish.

I named her Winter. I’m currently trying to crochet a little sister for Winter. Hopefully, the little sister, which I think I will name Snow (nothing like Snow White! haha!) to carry on with the “Winter Theme.”

I got home about 2 hours ago from my doctor appointment for my annual physical where I spent at least an hour updating my Primary Care Physician on my current lab results, the previous doctor appointments with my other doctors (Endocrinologist & Pulmonary Hypertension), and I let him know about my future scheduled Heart cath in December (booooooo!!!). I admit. I’m not looking forward to that. I mean, who is, right? We also went over my physical lab results which showed that I still have Hyperthyroid. Darnit! Though, my doctor did say that it can take a long while for the medicine to work. Ugh! *banging head on table* Work already!

I don’t know about you but I have to be REALLY tired or sleepy to be able to fall asleep. I usually take Benadryl to help with that but I’m ready to try something new. I haven’t been getting much sleep for the last two weeks, especially the last 3 or 4 nights. I told my doctor about it. I do well on my Bipap that I use with oxygen. So, I’m pretty sure that’s good. I don’t think I’m ready for what my doctor suggested, which was Xanex. My lungs are so small and sensitive (I tested at 20% lung volume today which was a blow to my psyche) that I can’t take typical medicine for pain or seditives because they bother my breathing. My doctor suggested Melatonin. I’ve never tried it before. Little nervous. Anyone out there have experience with this stuff? Let me know.

Keep in touch, y’all! FOLLOW MY BLOG! Have questions about me? Email them to me and I’ll answer them on this blog… goredrider@gmail.com Stay well everyone! Don’t forget to get your flu shot. I just got mine today and it didn’t even hurt! I swear! I’m about to go for a nap because little ol’ me is going with K to the Dallas Stars opening hockey game tonight! Oh yeah! Go get ’em Stars! Hey, maybe I’ll be on TV?!?!?! haha!

My thoughts about Enterovirus D68 & Ebola

Living On Oxygen for Life

Ebola is here. It’s in Texas and for the first time someone has come into the United States who appeared well but turned sick with Ebola. I’m sure every one has been glued to their TV to learn about this virus. I am concerned… yes, but I’m not afraid of Ebola because top doctors, CDC personnel, and many more are working very hard to contain the situation. I’m much more worried about the Enterovirus D68 that is now in Texas as well. I don’t mean to say this to start a panic but I have respiratory issues that, though they may not be in Asthmatic in nature or that the factor I am not a child, I still am concerned. I found an articled at Body and Health that states this:

Enterovirus D68 infections occur most frequently in summer and fall. Children under the age of 5 and children with asthma appear to be the most at risk of infection, but it can also affect adults with asthma and those that have weakened immune systems.

To allay my concerns, I will be asking my Primary Physician if I need to be extra careful even though I do not have asthma. After all, no question is a stupid question. I will also asking how often I need to be immunize against the Whooping Cough. I’ve had the shot once already because my doctor said that if a came down with Whooping Cough, I’d be in serious trouble with my lung so weak as they are.

Protect those precious lungs. 🙂

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!

Life’s little emergencies…

Living On Oxygen for Life

For the past 3 1/2 months, I’ve been taking the new PH drug called Opsumit. The first month of taking this medicine, I did feel better, like I had more endurance. It was very much similar to the feeling I had the first month of taking Tracleer. Then as time went on with Opsumit, that endurance slowly went away and the increase of shortness of breath creeped in. I was like… what is going on???

About a month ago, instead of carrying the laundry basket filled with clothes to my bedroom on my own, I was starting to ask K to carry it for me. I was getting pretty short of breath from carrying a laundry basket filled with clothes??? Yes I was. And it was getting worse. When I was helping K clean the house for my sister’s arrival, and a while doing a number of things that week, I was nearly hyperventilating and my heart was racing when I exerted myself . Things like swiffing the wood floor or unloading the dishwasher was wiping me out.

K was really worried about this. And for the first time, he took action for me. He picked up the ball and ran with it becoming my champion. From his job, he called my PH doctor and told them what was happening to me. Their suggestion was to bring me into the Emergency Room because that’s the best way for me to get all the tests I needed to find out what the problem was.

Now, you know I’m never thrilled with having to go to the hospital but the next morning when K took me, I couldn’t even talk without becoming short of breath. It was progressing. If you don’t follow me on Facebook or read the little Facebook column on my blog here, you don’t know my hospital adventure’s details. So, I’ll share them here for you to read. You know, copy and paste style! 😉 (BTW: I took my own bipap machine up to the ER/Hospital knowing that it takes a long while for the Respiratory to get the order for one and to bring it to me. So, when I take my own, I can use it immediately even in the ER.

August 5th Well, poop. I’ve been admitted into the hospital. I am breathless while talking this morning. They already took X-rays and hopefully they’ll figure out what’s going on.

August 5th (a little later) Good grief! So much traffic in my room here at the Chateau de Hospital! Ok here’s what I know which really isn’t much more than what I already knew. After getting 2 sets of chest X-rays (because my doctor wanted her own set, apparently), multiple lab tests, and an Echocardiogram… No conclusions have been drawn on any kind of diagnosis. I have been given plenty of diuretics (without my usual potassium supplements, I might add), an antibiotic pill (just in case of an infection is happening) and a triple dose of albuterol (my least favorite medicine!) through a nebulizer down in the the ER. I did, however, go on a nice walk with K up & down the hall before he went home. I did ok but I was a bit breathless when I got back. I can’t wait to see what they have planned for tomorrow’s adventure.

August 5th (later that night) Well, the Saga continues …and I thought I was going to be able to read a little and then lights out. Oh but we have to flush the IV and that lead to the dead IV because it wouldn’t flush the saline into the vein. That means I had to get a new IV. I thought.. Ok all is well. I can just read a little and then fall asleep. *knock on the door* “I’m here to draw labs.” This at 10:30 at night. So I’m thinking… Of course you are!! Come on in! It turns out I’m to be stuck twice, once in each arm for cultures. I soldier through it, then pick up my iPad which has my Kindle app and *knock knock* My nurse walks in and wants to check my vitals and I casually mention that someone was in here earlier wanting to check my blood sugar. (I’m not even diabetic!) Yes I told that person to check my records. Sure enough that person had the wrong orders. Wow! And this is just the first day of this grand adventure. My arms are pin cushions and my sister asks me why I don’t ask for a central line? Then she explains they can put in central lines or pic line for blood draws and give IV meds if you’re going to be in the hospital a while and will need labs done often. I’ve been told I’ll be having more labs done tomorrow morning. Ugh!

August 7th (early that morning) Update! I’m still here in the hospital. *sigh* The first night was awful because I only got an 1 1/2 hours of sleep and I was lucky to get that. I hate the feeling of being tired but not sleepy. My room was a really popular destination for the hospital staff yesterday from the OT lady, the PT man, a transport lady to wheel me down for a VQ scan in Nuclear Medicine, all the nurses, vitals tech, respiratory man and lady to give me my Symbicort treatments, lab people, the doctors (3 sets), and finally the people who brought the food (the food is horrible but I can order it like room service anytime from 7a-7p like a hotel) unfortunately I’m on a low sodium diet which leaves off all the good food. I made the mistake of ordering meatloaf the first night which normally I love but this was like faux meat or something like that. Yuck! My sister and my niece came to the hospital which was the highlight of this whole adventurous experience. My niece asked about my IV. I told her that it goes inside by body to give me medicine. She sounded amazed when she said, “It goes inside your body?” She is such a doll. Basically the doctors aren’t sure what’s going on but they are trying to eliminate things by doing lots of labs and some tests. I hope, hope to get out of here today. I’ve been told that I have to have at heart cath via outpatient. Boo! No fun! I’ve been walking up and down the hall with K 3 times a day but it still tires me and makes me short of breath. I know I’ll get there but it will be a really slow bounce back. I only hope I can bounce back to how well I was before all this mess started. *fingers crossed and toes and eyes too!*

Thank you for all your prayers and thoughts. It has help me tremendously. *hugs* to you all!

August 7th (around noon) Update coming soon! Just know that I’m Free!!!!! Even though I’ve been discharged, it doesn’t mean I’m done with the doctor visits. *groan*

Let’s see how many doctor appointments I can squeeze in for next month!?!? I feel a challenge coming on! haha! Who’s with me???

At least I will see my sister and niece this whole evening before they go home tomorrow. Yea me!

August 7th (really late last night) My bed is the most glorious bed ever! I sure missed you, bed. *sigh* Goodnight everyone!

Basically, they only found out that I’m currently Hyperthyroid. So, they started me with some medicine for that. I switched back to Tracleer (my choice). It’s the only thing that I’ve changed in the last 3 1/2 months. I feel like I can get a deep breath now thankfully but they truly couldn’t give me a definite answer as to what was causing my problem. That’s very frustrating for K and me. I’ll keep you posted. Lots of prayers went out for my recovery and that was so appreciated! It worked and I’m home! YEA! Love to you all. Stay well and treat your lungs like they are the most valuable thing you own.

Doctor appointment & medicine update!

Living On Oxygen for Life

I’ve been keeping myself busy with my fun garden which I’m growing in pots near the back door of my house. I’ve added more herbs and I’ve attempted strawberries but I think only one strawberry plant has survived. My raspberries tastes awesome! I’ve not given up hope yet! The day is so beautiful outside. So, my windows and back door are open until it starts heating up to the point I can no longer stand the heat. I’m sure it won’t be long. After all, I live in Texas. But all that aside, I wanted to tell you that yesterday I went to a new doctor. He’s a cardiac electrophysiologist. I sure hope I got his title right! His title takes up the whole left side of his doctor coat with the MD and PhD added to it.

The big reason I chose to go to this new doctor was because of the current cardiac medicine that I’m taking and have been taking for the past 20+ years. It’s called Cordarone (or amiodarone HCl). This medicine is used specifically for ventricular arrhythmias. It also has a pretty bad side effect of possible Pulmonary Fibrosis. I have been very lucky to not have developed this so far… but my ability to breathe has been getting worse over the years and really, I don’t want to be taking a medicine that could potentially be harming my lungs. That is why I went to see this doctor. I wanted to know if there were any new medications out that I could take for my arrhythmia problem.

Luckily for me, there is a new medicine out and of course, wouldn’t you know it… it’s a “Specialty” drug called Tikosyn. Not only that, to be able to start taking this medicine, I will have to stop taking my Cordarone for two weeks and then be admitted to the hospital for three days. It’s the only way the doctors allow patients to start this medicine. It’s because the patient has to be connected to an EKG to be monitored to determine the correct dose and to make sure the person’s body will tolerate the medication. The patient information packet that I was sent home with to study was geared towards people who are diagnosed with Atrial Fibrillation/Atrial Flutter (AF/AFL). That confused me because I have what I’ve been told is called Ventricular Tachycardia. Once I figured out that Tikosyn is a general purpose Arrhythmias drug, it only made me feel a tiny bit more comfortable with the possibility of this drug. It’s all a little scary to me. I haven’t decided on if I will do it but I’m leaning towards it. K is letting me decide this but I think we are both playing this off as a possible mini-vacation for him. LOL! Don’t get me wrong! He will be worried about me. He’s a great man.

Right now, I’m trying not to think about it other than for this post on my blog. I just thought you’d like to know what’s going on. I’m also still on the new PH medication called Opsumit (macitentan). I am doing a lot better on this go around. I had taken this medicine for the first time only for a week when I must have developed a sinus infection and had to stop the medicine for a whole week. I’m now restarted on Opsumit and am on the 5th day with no serious sinus problems and only a twinge of a bad headache occasionally. I think I will be okay on this stuff. If it helps my aorta artery and my breathing ability, then it will be worth it. Plus, there is the bonus of only needing to get lab work done once every three months now. That rocks!

I’m so looking forward to heading to Oklahoma to see my family. That means if I decide to try Tikosyn, it won’t be until sometime in June, after having all the fun I can have with my family. Besides, I don’t want to be off Cordarone while away from home and away from my doctors. To me, that’s risking a little too much. I’ll play it safe!

Don’t forget to follow my blog so you won’t miss anything! I haven’t forgotten the “Need a Hug” giveaway! I’m making the afghan and it will be finished very soon! I will get a preview picture up soon. Here are the pictures I took of my garden this morning. What do you think?

Herb garden in a pot with: chives, lemon thyme, spearmint, lemon balm & peppermint.

Newest herbs in my 5-in-1 dwarf apple tree pot: basil, cilantro, & dill.

Tomato plant and jalapeño plant (can’t wait to make salsa!)

Doctor Day!

Living On Oxygen for Life

This morning I had a doctor appointment with my cardiologist who I’ve had for the past 20 years (at least!). He’s a GREAT doctor and I truly trust him which is why I’ve stayed with him for so many years. He’s the one that finally found the medicine, Cordarone, to help my heart from skipping beats all the time. It was a very serious problem. When I say “found,” I mean we tried numerous types of cardiac anti-arrhythmic medications. Unfortunately, those medications like: beta-blockers and calcium channel blockers all create problems of SOB for me. With Cordarone, I didn’t have the problems that the other heart meds were causing me. It was a very scary moment in my past trying to get my heart back under control. I ended up being wheel-chaired straight from my cardiologist’s office through the parking lot and into the emergency room where I was directly given a room. This was all because of my non-stop irregular heartbeats. I had a week-long wonder and worry that I was going to die. My older sister (the one who came when K’s dad died) came down to help me and sit with me in the hospital. Anyway, it was pretty nerve-racking for not only me and my family but my cardiologist as well.

Today, I had my first back-to-see him visit in 5 years. Yeah, I procrastinated on setting up this appointment but my PH doctors were pretty insistent on having my cardiologist, Dr. M., keep track of my dilated ascending aorta which they call an aneurism. I have to tell you that it was a joy to walk in and not even tell them my name and they still recognize me. Sure, they knew I was coming but the others, once I got past the sacred door to the back rooms, acted as if they missed me. I was thinking… Wow! Do they treat ALL their patients so well?

First I have an EKG done which looked good. I talk to the doctor a bit and then I have my Echo done. What unnerved me a bit is that Dr. M came in to watch the Echo being performed. He was worried a little about the pressures, which use to be around 77 but thanks to Tracleer the pressure is at 51. He’s not as concerned about the dilated (4.6) aorta as the PH doctors, which is a little bit of a relief because I know and he knows that I’m really not a safe candidate for surgery. He will watch it on an annual basis though. He was concerned that I have no reason (medically) to have signs of a dilated aorta. He and I are wondering if Tracleer could be causing this. He recommended that I ask the PH doctor try me on the new Tracleer-type medicine that has just come out. It has less side effects as Tracleer. I haven’t had much luck with other PH meds but since Dr. M asked, then I would give it a try. Sorry that I don’t know what the name of it is. Dr. M. couldn’t remember its name.

I also talked to him about Cordarone. It works great for me but it has one bad side effect. It can cause fibrosis of the lungs. My PH doctors are worried. So, I asked if there was any new heart medicines that I could take for my problem. The look on his face was comical. It made me smile. He does not want to go through what we went through when I first had my heart rhythm problem. He has decided to send me to another cardiac specialist who deals with the electrical problems of the heart. Maybe that doctor will know of something. Shuffle… Shuffle… Shuffle… from one doctor to another. My life’s story. haha!

Life is still good. I’m home to rest up and then I will head out the door to meet up with K at his Mom’s house so we can all visit a plant nursery. I’m really excited. Maybe I can talk K into buying me some more ice cream. hehe! Never hurts to ask!

If you are new to my blog, please take a moment to sign up to follow it. Don’t miss out on any of my crazy-fun adventures with oxygen. Have a great day! Congratulations to Michelle N. in Iowa for winning the Hope necklace!!! lots of love to y’all!

Life is good!

Living On Oxygen for Life

A few days ago, K and I decided to step into another adventure by trying a new grocery store… wait for it… on a SUNDAY! Before you say it… it was NOT my idea. In fact, I kept asking him if he was sure he wanted to go to a new grocery store on a Sunday. He was like, Sure! So, that is what we did. We went to WinCo. I can only say that the store was so disorganized that it was so easy to get turned around and confused in there. So many people were stopped in the middle of the aisle looking for whatever it was they were looking for. Then some were talking on their cellphones and suddenly put on the breaks wherever the heck they may be at… which happened to be right in front of our cart a lot. Then, I saw the donuts! We were in the bakery section of the store. I had been craving glazed donuts for days. So, I grabbed a clear plastic box of 6 donuts while checking the date. Ok, they were fresh. In the cart they go. K looked at them and then ripped right into the box and took a big bite of one of the donuts. The look on his face was priceless!! I could tell he wanted to spit it out. *snicker* All he could say was that it was frozen. Naturally, that confused me and I felt bad for him (kinda!). I took a bite of his donut. I certainly didn’t want to start eating a new donut. First, I noticed that it wasn’t frozen but it sure tasted like it had been frozen and then thawed numerous times. YUCK! Now we have to go home with them. Don’t worry… they went straight into the trash. What a waste.

Anyway, I met a nice couple at the WinCo. They asked about my oxygen. That’s when I lost K. He went off on his own like most men do while their women talk to someone they met or know in a store. It must be a secret MAN skill or something. Of course, I didn’t bring my cellphone with me that day. I wasn’t able to hunt him down using a text message. I had the cart. So, he was going to have to find me. Mwhahaha! Don’t worry… I didn’t roam too far from where I was. We both agreed to bail on the grocery store by buying what we had and go home with that. Good gravy. They didn’t even bag the groceries for us. I got to do it! I say got to do it but I was secretly reliving my days from when I use to work at Walmart. I had a lot of fun. Though when I worked at Walmart, we didn’t have the plastic bags like that. I kicked butt by bagging the way I wanted my food to be bagged! I rock!!!

Yesterday, I went to a new doctor. I was a little nervous because it’s a pain management doctor who will hopefully help me deal with the migraine headaches that I’ve had since I was about 17 years old. If anyone has had one, you know that a migraine can make your life come to a screeching halt for days. Well, that is how it is for me. For the last few months, I haven’t been able to “Bounce” back from a migraine as well as I normally do. After having a migraine headache, I normally get a burst of energy that makes me feel almost like Wonder Woman. Because I have heart and breathing problems, a migraine to me, affects both of those problems badly. My heart will start skipping and my breathing is so strained from the stress of my headache. I can not take things like Imitrex or Maxalt. And taking narcotics like hydrocodone or codeine would suppress my respiration. All I can take right now to help me through headaches are Extra Strength Excedrin, Fioricet and Phenergan. But now with this doctor, I am going to learn about whether or not I can get nerve block injections. I first have to get a neck CT scan. Then I find out more after that. Wish me luck!

Today, I am cooking up a corned beef roast to chop up and fry up with hash browns and a little bit of onion to make some yummy Corned beef hash for dinner! K was very skeptical about it the first time I made it… but after tasting it.. I changed his mind about corned beef hash. YUMMY!! Although, for a long time, I use to eat the kind that came from a can. Homemade is better! My oxygen guy came a little early. Now I should be able to get in a nap! YEA! Please be sure to follow my blog so you don’t miss anything. The HOPE necklace is going to be given away in April! Be sure to send in your name, information, and tell me what gives you hope to goredrider@gmail.com. Just click on the “HOPE – the giveaway” tab in the above menu to read about it.

Have a great day everyone! SPRING is coming!!! Can you feel it yet?

Ok! Let’s do this…

Living On Oxygen for Life

Are you ready for another “Need a Hug?” giveaway??? I’m thinking that you are saying…”Shoot yeah!” Right? Psh! Of course I’m right! Well, let’s get to it. Oh wait… First, let me tell you some stuff that I’ve had to deal with concerning my health. I had a bit of a scare over the last week-ish. With all that was going on with K’s family and with me overdoing it, my heart was letting me know… “Whoa.. what the heck are you doing? Slow down girl!” Naturally, I didn’t listen very well. I mean, I tried to rest when I could but resting wasn’t helping much. The more things I did physically, the more my heart was hurting. Chest pain is a scary thing. I wasn’t sure if it was caused by too much emotional stress or too much physical stress. Was it muscle pain or was it actually my heart hurting? I mean, how do you know?

During all that week, I was carrying my oxygen portable a lot but I also used my little cart to pull it around when I knew I had to do a lot of walking (and there was a lot of walking!). Even lifting and lugging it up to my shoulder wore me out. I’ve come to the conclusion that I’m not what I use to be but that’s ok. I persevered because I surely didn’t want to ask K to help me up from and down to the hospital parking garage just so that I can be with him and his family. I know.. I know… I should have paced myself better and then my breathing wouldn’t (I hope!) have been so strained causing more chest pain. I’m pretty hard-headed!

Anyway, I went to my doctor appointment last Friday and told him all about the chest pain and he decided to run an EKG just to play it safe. I was so thankful that the results turned out well. Yippee! I was super stoked until he said he wanted me to be referred to my Cardiologist. Crap! Another doctor appointment! So, I took a deep breath and hung my head and said….”Okay…” lol! I’m so goofy! I am feeling better now. So, I’m thinking that all this was caused mostly from stress. A couple of days of rest has done me well. Wheww!

And now for the next “Need a Hug?” giveaway!!! Click the “Need a Hug?” link in the menu above to know how to get your name entered. You need to be someone who uses oxygen and/or a bipap/cpap machine. If you have breathing problems and need a hug, enter your name!

March Giveaway

This, above photo, is of a lapghan that is approximately 4’x4′. This giveaway is open to international entries as long as you can receive packages at your home. Follow my blog so you won’t miss a thing! Seriously! Do it! *wink*

ABCs? No no no it’s an ABG!

Living On Oxygen for Life

Yesterday, I told you about my adventures I had at the hospital for my doctor appointments on last Friday. Now that it’s all done and over with… I’m having a great weekend. I even have the results back from all the tests I had done. That’s pretty darn fast! Right?

So here I am. Sitting with my new Peyton Manning Broncos jersey on to support his efforts to go all the way to the Super Bowl. I really am a lucky girl to have such a great husband who tries to make me happy after such a long and trying day.

Here is my ABG results:
ph – 7.37 range: 7.35-7.45
PCO2- 65.9 range: 34-45 mmHg
PO2- 118 range: 92-100 mmHg
HCO3- 38.2 range: 22-26 MMOL/L
O2sat- 98% range: 94-100%
Total CO2 calc ABG- 40 range:19-24 MMOL/L

Now, I wasn’t expecting my results to be great. In fact, I was thinking they would be worse than what you see above. I did this ABG on 5LPM. It is very important to use your oxygen at the prescribed level. Too much oxygen can trigger your brain into retaining too much carbon dioxide. The “range” is what my ABG should be for a healthy person. All I can say is that these results are slightly better than the one I had in 2009.

I hope everyone has a great weekend! Stay warm and don’t forget to follow my blog. Love to you all!!!