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*

With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

2017 A Year’s Review…

Living On O2 for Life

Life during 2017 sure has been interesting. K and I have found ourselves confronted with many challenges that mostly were unexpected, which usually is the case for us. However, there were a LOT of good, fun, adventurous times throughout the year for us too. Thank goodness… because we really needed them.

January 2017 started with a visit from BOTH of my sisters at the same time! It was shockingly fabulous because it’s difficult for the both of them to have the same time off with their work schedule and then they’d have to drive down to see me now. I don’t travel well anymore and they are starting to understand that a little better now. It’s one thing for them to know their sister’s health is declining but it’s another thing to actually see it first hand. January brought the gift that I’d been waiting for… Christmas cookies made by my older sister and frosted by me and my sister and decorated (little kid style) by my very adorable niece.

February 2017 brought all kinds of exciting fun planning of my vegetable garden. We tried growing new things this year, like broccoli, squash, and tomatoes. I tried to keep up with the garden but with my health and the Texas heat, it started to get me way too tired just trying to keep it watered. A couple of times, K would tell me to just go inside because he would see me struggling with my breathing. So, he took over the garden for me. He’s my hero!

If you haven’t ever grown your own vegetables, it’s a sight to see and it’s actually very therapeutic. No, really… I swear! In March, the potatoes and our two tomato plants were growing like crazy due to amount of rain we’d keep having! Yay!!

In March, K and I were shopping in Home Depot and my liquid oxygen tank flew out of the cart and landed on the cement. What a scene that was! K was so worried about me but I handled it amazingly well after I realized it still put out oxygen. Whew, right? By the end of March, I was harvesting my first strawberries! Yummy! In fact, K was so interested in my strawberries that he filled two hanging baskets with strawberry plants to grow some of his own. Wow. I’m slowly turning him into a farmer! haha!

In April, K’s Aunts and Uncles came down to visit but stayed with his mom and his aunt here in town. By May, I had a lot of tomatoes I didn’t know what to do with them. I mean, we could only eat so many slices of tomatoes on sandwiches and for salads. So, I looked up on Pinterest how to make homemade tomato sauce. The process was tedious and it felt like it took forever but it sure was a success. I even had to call my mom for advice.

I didn’t get to go to my niece’s recital or birthday party because I can’t drive myself that far alone anymore. It just wears me out being the driver for that long. In between the missed trip to my sister, to the time I got to go see them later in the year, K and I went to 2 concerts. We saw U2 and then we saw Roger Waters (think Pink Floyd). Those concerts were a gift from me to K for his birthday and Christmas of last year. We used my wheelchair and I a bought a cup holder that I could attach to the arm of my wheelchair from Amazon. It was SO handy.. so convenient and affordable! Yay.. we all love affordable, right? Going to the concerts with K reminded me of the old days of dating K. We had a good time dancing, singing and acting goofy back then as we did for these two concerts.

In August, my older sister road the train to my city and drove me in my van to her house. I stayed with her for 10 days and then she drove me home and caught the train home. How sweet was that??? I know, right? I have to admit that I missed K something fierce. After I got home and rested up, K and I went on an adventure to South Padre Island for our 25th anniversary. We hit every art gallery and tried various restaurants and did all kinds of fun things. It was a great 10 days but on the way home, the front grill of my van flew off and went over the top of the van. I’m just thankful that it wasn’t me driving because it sure was scary. We didn’t see where it landed and thankfully no one was behind us. I knew we should have taken Klondike, my rubber chicken (road trip mascot). We got an estimate to replace the grill but it was an outrageous price. K and I had an idea but we didn’t realize that we were both thinking the same thing until we started talking about Plan B. We’d the grill replacement part on Amazon, order it, and K thought he could put it on the van himself. So that’s what we did for so much less! I’m so impressed with K’s skills! Though, he’s not much of a car guy but he can fix simple things. My MacGyver, he was! *wink*

From October up to now has been rough, K has had a lot of trouble with his eyes that scared the ever-lovin’ bejeebers out of us. He’s had to have 2 surgeries and I needed to take care of him while he recovered. It reminded me of just how much he actually does for me with my health needs and all done willingly and without complaint. I’m so lucky. I have to mention that he’s got some great ophthalmologists. One of them has the most awesome waiting room filled with jigsaw puzzles that anyone can work on and even a blanket rack that has CROCHETED afghans! *shock* Wow! K said his doctor wanted to meet me. Apparently, K had been telling him about me and the doctor has a daughter with scoliosis like me. So, without giving names, I’d like to give a shoutout to her! “HEY! If you are reading this, here’s a big hello to you and hoping that you are doing well.” *hugs*

Christmas was great! I got to help K decorate the house with new creative ideas this year. We try to add new ideas every year to the decorations! This year we added 5 wreaths we decorated together, 3 hung in our family room windows and one for two large mirrors we have. I had to go at a really slow pace hanging Christmas bulbs, wrapping ribbon around trees, and creating my 3 wreath masterpieces but we got it all done in about 5 days. Hooray! And now it’s January 2018. We’re ready for a better year. *fingers crossed* We’re already planning some exciting things to look forward to which is how we stay optimistic during the tough times.

You can see the pictures I take if you look in the right column of this blog under the Instagram heading. You don’t need to have an account to see my pictures. I just didn’t add them to this post because it’s already so long.

I’m famous!!! *wink*

Living On Oxygen for Life

Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.

I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):

My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.

Please support this effort by going to this website: “Donate now to support pulmonary hypertension research. Engage for a cure with phaware.” You could even get an “I’m Aware That I’m Rare” t-shirt to spread awareness when you donate. I highly encourage you to check it out.

After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.

Love y’all! *hugs*

Well…. this is something new..

Living On Oxygen for Life 

This morning was all planned. I was going to wake up “casually early,” meaning around 9:30am instead of 10 or 11am and head off to get my labwork done for the month. You see, I still have to get monthly lab work to check my liver function because I take a Pulmonary Hypertension medication called Tracleer. However, for the past week, K has been off work due to cataract surgery in one of his eyes. He can’t lift anything over 20lbs for a week. Therefore, he can’t safely perform his job. He’s about to have his other eye worked on in a few days. 

Anyway, he’s been home and sees that I’m nearly awake when he recalls a VERY important factor about this month’s lab work changes that we were told by my PH doctor earlier this month. She wants me to have my cortisol level checked. I forgot all about that which is why it’s vital that betwixt the two of us, it’s handy that K has a memory like an elephant. Believe you me. I do not have a memory worth much at all. Even if I write things down, I’ll forget about it and then forget where I put my note once I actually remember that I wrote it down. 

So, I was scrambling out of bed, hot footing into the bathroom grabbing any color-coordinated clothing to wear on the way to take a speedy shower. K said I was suppose to go early in the morning. I’m freaking out because I didn’t want to delay my liver labs. I was running low of Tracleer and I can’t get those pills refilled until the liver lab results come back to the doctor. Thankfully, they usually get them the next day. But, I didn’t know how early I was suppose to show up for a cortisol lab. The doctor only said early AM which to me, that could be any various time in the morning. By the time I was out of the shower, dressed & ready go… K suggested that I call the lab first to get their interpretation of early AM for this new test. It was already 10:30am quickly approaching 11am (which happens to be my “I’m officially awake time. Let the day begin.”

So, I pick up the phone and call. I’m so glad I did. Before 9am, they said for cortisol labs. I hung up with a polite, “Thank you!” and then cringed. This is going to be hard. I’m going to have to drag myself out of the house early! It’s not even going to be for a doctor appointment…THAT, I would understand. But just for labs. Ugh! haha! I’m going to have to think of a good reward for tomorrow morning. Any suggestions?

I know I’ve seemed absent lately on my blog. I do respond to email, Facebook posts, comments of my blog here. I’m not gone at all. In between all of this, I am crocheting the Need a Hug afghans, which I have one to send out. Plus, K finished my second raised garden bed that I planted 8 seed potatoes in (so excited!) which leaves me with my other 2’x6′ bed & my 3’x4′ bed to plant vegetables in. I did plant 2 tomato plants already. As soon I finish planting my seeds, K will help me cover them with netting. The netting really helped last year to keep bugs (and stray cats) away. 

I truly hope y’all are doing well. Let me know how you are doing. *Huge Hugs* to all of my readers & visitors. 

Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

Up all night…

Living On Oxygen for Life

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

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

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

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

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

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

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

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

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

Day Two… It continues.. Tikosyn!

Living On Oxygen for Life

There is one thing I want to bring up about the first day that I failed to mentioned in my earlier post about Day One. I’m still pretty upset about it. In fact, at the time, K and I were both very upset and flabbergasted about the whole incident. You see… when I have to stay in the hospital, I naturally bring along my bipap machine so that I can immediately have it available to use and I also bring all of my medicine. All of my medicine includes my specialty medicine which I know that hospitals, even though they are hospitals with lots and lots of drugs, may not have a supply of my specialty medicine. When I went to the Dallas hospital in 2014, that hospital didn’t have my Opsumit, that I was taking (no longer taking now!), in their pharmacy.

On the 26th of May, my first day of hospital stay, the hospital realized that they didn’t have Tracleer in their pharmacy. The nurse came to tell us in my room and I said that’s no problem because this has happened to me before in 2014 in a Dallas hospital. I brought my Tracleer with me in it’s bottle. The pharmacist can inspect it, slap a patient label on it and put it in their pharmacy locker to dispense out to me. The nurse went to call the pharmacy to see if that was ok to do. She came back and told me the hospital pharmacy said they couldn’t do that, saying something about a law? *shrug* I told the nurse that I can not be without this medicine. The pharmacy looked around for a small supply of Tracleer 62.5mg and found some all the way in Dallas that they were going to have brought to Fort Worth for me that night. I was so mad. I was mad because I had my medicine not but one foot from me and they wouldn’t allow me to offer it to take. I was mad because the hospital had someone in Dallas drive in pouring down rain and hail to bring to it to me to use. AND I was mad because I knew this medicine costs $8500 for a month supply and I didn’t want an exorbitant charge for Tracleer on my bill when I have mine to take that the insurance has already paid for when all they had to do is inspect mine and put a patient label on it. Sorry, but I’m still really upset about this.

Ok…Day Two.. It was much better than day one…although, I didn’t get to sleep until 2am because the last vital check was at midnight and I couldn’t fall asleep until 2am. I’m a night person naturally but I was getting in that zone where if I get too tired, I can’t fall asleep. That’s a very bad thing for me to have happen. I will start to feel physically sick. At 4am, it was Tikosyn time! Then nearly 5am, they came in to take vitals and shortly afterwards, the lab lady came in to take blood. Do you see a pattern here? Anytime I would nearly fall back asleep, I’d get woken back up and by 6am it was time for the EKG. By then, I just decided to stay awake and wake for breakfast and K to arrive. And don’t forget the diuretics to begin. They had all my medicine split apart and coming to me at different times. It was crazy because I was so use to taking morning meds when I woke up and then evening medicines right around 5 or 6pm.

I drew this picture and stuck it on the bathroom door. You see me on the island?

I drew this picture and stuck it on the bathroom door. You see me on the island?

K scooted into the hospital right before the doctor showed up and I had my list of questions ready. I think he was impressed because I had them listed on a small notebook I brought in case I needed it. (I highly recommend this!) My doctor noticed that I had my yarn out and had asked if I crocheted. I was impressed that he knew what crocheting was and told him that K calls it knitting. The doctor said crocheting and knitting aren’t the same.. I felt like we had a bonding moment there. haha! He looked around the room and noticed my sign on the bathroom door. I’m so goofy!

This was the worse meal I had at the hospital. Plus it had pepper on it.

This was the worse meal I had at the hospital. Plus it had pepper on it.

The food here was something else. I was stuck choosing from the Heart Healthy diet on a paper menu but I started to get smart by penciling in requests like a bagel and a chocolate chip cookie. The bagel, I got! The extra chocolate chip cookie, I did not. *pout* However, K did go down to the in-house Starbucks and bought us some goodies. For him, he bought a couple of blueberry muffins.. the kind with crumble topping… and for me, 2 chocolate chip cookies of which he snagged one. By the way, all the vending machines in the hospital only had healthy selections..even the soda or other beverages were diet. Gross! After lunch, I couldn’t believe I was able to get a 2 hour nap. It was AWESOME! Then K was like, let’s get your butt up and walk the hall. We did this the first day and he won’t let me get lazy just because we’re in the hospital because he knows that the more time I spend in that bed, the more my lungs lose function and I can have a set back. So, staying active was our main goal. As long as I wasn’t dizzy or woozy, I walked twice a day with him.. or my nurse tech when K had to go home for the night to take care of some errands for his mom and take care of our dog.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

K use to sing and act out this song by the Beatles (A Day in a Life) for me.

After hanging my motivational picture on the bathroom door, I wrote on the patient information board. It’s a dry-erase board in my room. I wrote my Day’s Goal as to “Be A Ray of Sunshine.” Cute, huh? [Picture shown on Day Three post] I wrote it because I was so cranky the previous day. Before K left for home and while I was in the bathroom, he wrote me a goodbye motivational message on the board that he knew I would know what it meant. I came out of the bathroom and saw that he was guarding it so that I couldn’t see what it was that he wrote. I was thinking that he wrote something to the nurses to get me to walk that evening. I mean, he kissed me goodnight and made me pinkie-swear to walk that night no matter what. I thought it was so cute that he would pinkie-swear with me that I just went ahead and pinkie-sweared. Well, when I read what he wrote on the board, I almost cried. I know that to you it’s just lyrics to a Beatles song but to me, it’s a happy memory that makes me laugh out loud. He’s so good at writing the perfect thing that will touch my heart and lift me up.

On the second day of my hospital stay, the labs came back with an even higher than MY normal of CO2 (or bicarbonate) level. The doctor was concerned, thinking that he should adjust my diuretics but I told him that I have normally high bicarb and my kidney does a good job at balancing my pH level. I told him that I would prefer that he would consult with my PH doctor before changing any diuretic she prescribed. Personally, I don’t like one doctor messing with another doctor’s orders. He did say that he was ok with that and he agreed with not changing her orders but he was going to watch it. That doctor is my Pulmonary Hypertension doctor and there are good reasons why I’m on the medication that I am on. I brought a 15 page history of my major health history (with test results) just in case something went wrong and they’d need more information. I even gave it to my nurse, which she copied, but I don’t think the doctor even looked at. I don’t know for sure but I did it because I’ve never been to that hospital before. I do what I can not to only protect myself but also to protect K in the event that if something happened during this stay in the hospital, he’ll know what to do to get information he needs about me to make the right decisions.

Apparently, at the starting dose of Tikosyn, which is the higher dose, my QT Interval was too long on the second day. The doctor had to make an adjustment to my dose that evening. I was now taking the lowest dose.. 125mcg twice a day. He told me that by the last (5th dose) and after the EKG, he would know if they could send me home with or without the medicine. Remember, anything under 500 is good.

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)

Problem? Fix it!

Living On Oxygen for Life

Stress..the final frontier..for which no man (or woman!) wants to experience. Did that even make sense because I can’t tell.. I’m too stressed out. Over the last three weeks, I have literally hit the maximum overload point in the amount of stress my little body can handle before I start feeling physically sick. Chest pain, heart beat skipping, and downright depression hit pretty hard. But, let’s not go there.

I played phone tag a lot last week trying to find out when my doctor can schedule me in his itinerary for trying Tikosyn. He finally got back in town last week. I called him last Monday to let them know… “Hey, I’m still here waiting on an answer..” I had to leave a message. I really hate phone tag. So I sent an email too. You know, just in case. I finally get a call back from the doctor’s staff saying they’ve been discussing my case and they think the doctor will have an opening to be available to the hospital for the 3-day stay requirement during the last week of April. I told her that I’ll be out of medicine soon and I’m already splitting the pills in half. Her answer was that I’d have to be off the medicine completely for 2 to 3 weeks anyway. Personally, I think we’re cutting it a little too close for my comfort. Between now and then, the doctor has other out of town conferences to attend. What will happen while I’m off Cordarone and I have a rhythm problem and he’s out of town??

Meanwhile, K and I have decided to track down and purchase Cordarone from Turkey so that I’ll have something to fall back on if my body can’t tolerate Tikosyn. It hasn’t arrived yet but it’s been shipped. *fingers crossed * that it’s the same brand name Cordarone that I’m currently taking.

Right now, I’m not feeling any bad effects of being on just a half dose of Cordarone a day. My heart is skipping a little but I’m ok with that. As long as it doesn’t get worse or something doesn’t cause a lot of stress for me, we hope I’ll do ok.

I really wanted all this settled before the PH Conference in June because I’m super excited to be going with K. I’ll be hopefully giving away my favorite Need a Hug afghan that I just completed. It really is lovely!

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

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

Living On Oxygen for Life

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

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

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

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

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

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

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

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

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

[March 2016]

Taking Adempas Begins – a PH medication..

Living On Oxygen for Life

I’ve been living in a fog of a migraine since Friday. The day the Pharmacy nurse came to my house to explain all the ins and outs of the new medication that I was about to start taking. It’s called Adempas (riociguat <– don't ask me how to pronounce that!) and it treats two types of pulmonary hypertension in adults. You can read more about this medication by clicking on the red link.

I’m so glad that K had bumped up our date night from that Friday night to the night before (Thursday) because I wanted to make sure I was feeling well rested for the whole fun experience of seeing Spectre in IMAX! It was so awesome! We even got two FREE movie posters for seeing it in IMAX which I thought was super expensive. But, hey, it was date night, right? It’s not often that I can get K to take me to a movie for date night. We already have our next movie picked out and we are both super excited. *drumroll, please* We are going to see Star Wars!!! I’ve waited 30ish years for this moment. FINALLY they made the Star Wars VII movie. I want to dress in character but I’m not sure if I’m going to yet. Wouldn’t that be so darn fun?? Ok ok… I’m getting way too distracted.. back to Adempas.

So, like I was saying.. the nurse showed up at my house and we went through with filling out all these health forms. You know the ones… What medication are you currently taking, what medication are you allergic to, and then the fun ones began. I always dread this one category of questions: Health History. Are you serious???? Don’t you have that already in your data bank since I’m already taking Tracleer which is another PH medicine? Yeah, I seriously thought that. No, I wasn’t rude enough to blurt it out but I did take a deep breath (well.. as deep as I could, anyway) and started listing off the “most important” health conditions that I have. And then he took my blood pressure to get a baseline reading before I started taking Adempas. One of the side effects of this medicine, which could or could not occur is low blood pressure.

All looked A-Okay with my blood pressure (I never had any doubts about that!). Then he did what I was hoping he wouldn’t do… he opened my medicine and had me take my first dose. *pout* I wanted to wait until today (Monday) so that I could have a relaxing weekend. It didn’t work out to be. The nurse took my blood pressure every 15 minutes to make sure it stayed within normal range. It did! Yay! Like I said, never doubted. haha! But something did happen later that day which made the whole experience blow. grrr!

Maybe it was bad timing? Or maybe it is my body adjusting to this medicine. Since Friday evening, I have had an awesome sized migraine. I still have it. Usually they can last 3 days on average. If this is from Adempas, so far, this is the only noticable side effect, that I’ve experienced which makes me want to count my blessings. I’m starting out at 1mg, three times a day, 6 hours apart (I was hoping to start at the .5mg dose). Yep, I have to set my alarm to remember when to take it… and crap.. it’s almost time to take it again. Ugh! I am pretty sensitive to all the PH medicines. Tracleer has been the only PH medicine that my body has been able to tolerate. Hopefully, adding Adempas will give me good results and can be tolerated.

Meanwhile, my sister and her family are coming down, we still need to hit the grocery store (desperately!), and I’ve only had the strength to do simple household chores over the weekend. I’m not complaining, even though it may sound like I am. Life happens and it happens to have more potholes in the road this year for me. Or so it seems. It’s all in the way we look at life. I can either look at the rest of this week as a mad scramble to get thing ready for this weekend or as a complete excitement to see my family and my darling 5 year old niece. Seriously… you know which one I’ve chosen, right? *wink*

Be well everyone and stay in touch. I have recently become a Guest Blogger at http://www.freshairmedicaloxygen.com (Fresh Air Medical). I answer questions and talk about oxygen there. I have not used them as an oxygen supply company but I’ve heard they are a good company to do business with. They have their customer’s best interest for their oxygen needs at heart and want to provide them with a community feeling with their blog. I’m glad I can help in this endeavor.

So, uh, are you ready for Thanksgiving? What about Christmas? Lots of love to you all! *big wave*

I can’t believe it… but I should have..

Living On Oxygen for Life

I use a splitter to connect an oxygen concentrator and a 100 lb liquid oxygen reservoir together to provide me with 6 LPM of oxygen to conserve my liquid oxygen. I have my refill days for my liquid oxygen on Wednesdays. So, on the 3rd of June I had my tanks refilled. For some reason, since then, I had been feeling sluggish, tired, worn down more than usual. I thought maybe Mary, my cat, may have chewed kitty holes in my tubing again. So, I checked my tubing multiple times and there were no holes. Then I checked the green Christmas tree that connects my tubing to the reservoir tank to see if it was screwed on tightly… it was. Figures, right? I mean, it couldn’t have been THAT easy!

Now, I know it’s been raining like a monsoon here in Texas and it has taken its toll on my breathing but it has stopped raining.. *YAY!* and that couldn’t be the reason since I’ve been staying indoor as much as I’ve needed to be. Was my breathing getting worse? I was really worrying and so was K. I was using my inhaler, taking my diuretics as prescribed but I still felt puffy and so short of breath. It just wasn’t normal for me. I certainly didn’t want to call my PH doctor.

As my last ditch effort, and almost by fluke of chance while I was filling my portable with liquid oxygen to go to a doctor appointment, I decided to switch the reservoirs (I have two 100 lb tanks) to join with my concentrator. What could hurt, right? When I pulled my tubing off my reservoir to switch them around, I noticed something weird. The one I was about to switch out wasn’t putting out oxygen even though it was almost full. So what that means was that I was only using half of the oxygen I needed for 3 days. Once I connected the other reservoir to the concentrator, I started to breathe much better and now I feel like myself again. I understand now why my sleep, short of breath, and energy level was so bad.

From now on, I’m going to start checking the flow from both tanks when I get my reservoirs refilled. Equipment can fail and I will be reporting this come Monday so that I can get a replacement.

In other news, I’ve been crocheting like crazy! I have a box nearly ready to send out to a preteen girl who is awaiting a double lung transplant. I’m including a secret gift that I can’t tell you what it is until after she receives it. I don’t want to spoil the surprise. I have another box about to be sent out to Michelle & then one to Sara. After that, I’ll be trying to finish up my daisy afghan to go to the next recipient, Vincent. I couldn’t do this without the generous donations going to my GoFundMe.com/helpneedahug. Read how you can receive a Need a Hug afghan if you have breathing problems and need a hug.

I hope you are having a great weekend!!! *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.

heartcathresults

Picture from The Merck Manual.

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