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)

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*

A new PH medicine to be added..

Living Oxygen for Life

Well, I’m pretty nervous because I’m going to subject myself to trying another Pulmonary Hypertension medication that’s fairly new. It’s called Adempas. It will be added to the PH medicine that I’m already taking, Tracleer.

It’s so complicated, with all of my health problems, to treat Pulmonary Hypertension. With each PH medicine I try (with the exception to Tracleer at half dose), my body isn’t able to tolerate them because of my scoliosis that created my Restrictive Lung Disease problem.

What’s suppose to help one of my problems creates terrible results for my other problems. I can’t tell you how frustrating it is for K to watch me go through this and not be able to do anything to help make trying new medicines any easier. Spouses go through so much along with the patients. It’s just as heart wrenching and maddening as being the one trying a new medicine, unsure if this is the one to either make me feel me feel better or make me feel so much worse. There is no cure. We can only hope to slow its progression until a cure is found.

So, here I am after my Pulmonary Hypertension doctor appointment today, waiting to hear if the specialty medication application was approved which will probably be some time next week. Then, I’ll find out how much more this will cost me or if I will qualify for Co-Pay assistance. PH medicine does not come cheaply and can only be dispensed from a “Specialty” Pharmcy. Thankfully, my PH doctor has agreed for me to be titrated up on this medicine slower than normal. We’re hoping by going a little slower, I may be able to tolerate this medicine a little more smoothly.

Meanwhile, it’s raining like crazy here. The air is holding on to all that moisture as long as it can to make me suffer, I’m sure! haha! Not to worry! I have ice cream in the freezer. It helps me to survive anything. Probably even a Zombie Apocalypse too! You never know! Don’t doubt the power of ice cream!!! Mwahahaha!

Be well everyone! Have fun with the Trick-or-Treaters. May you actually have “little” kids show up at your door this year. Be safe.

Remember that November is Pulmonary Hypertension Awareness month.

Need a Hug Continues…

Living On Oxygen for Life

Good afternoon everyone! I LOVE to crochet as one of my many hobbies. Last year, [2014], I made it my New Year’s Resolution to crochet many lapghans/afghans to just give away to those who have breathing problems all at my expense. My afghans have reached out to people who live in New Zealand, the UK, Canada, and various places in the U.S.A. My goal with sending these afghans was and still is to give the recipient a HUG and to let them know that someone cares about them. So, I named the project: NEED A HUG giveaway.

Now that it’s 2015, I have decided to continue this project but I need help to buy the yarn and pay for the shipping. That’s where your help comes in. My goal is to make this more of a community feeling of reaching out to give HUGS to those who have trouble breathing. If you’ve experienced breathing problems, you know just how difficult life can be. So, with your help, let’s send warm hugs to them. *hugs* These breathing problem can be anything such as: Asthma, Restrictive Lung Disease, Pulmonary Hypertension, COPD, and so many more that it would take forever to list. Even people who use a Bipap or a CPap can be a recipient. My goal is to make your sad day better, to wrap you in a warm hug with one of my afghans, and to remind you that people care about you.

I have opened a GoFundMe account to help with the cost of only Yarn and Shipping in order to continue the Need a Hug giveaway. So, please tell your friends and family about this project. All money donated will only be spent on the purchase of yarn and shipping expenses. If you feel the urge to donate to this project, you can do so at: Help Need a Hug.

If you would like to enter the Need a Hug giveaway, please email me at: goredrider@gmail.com and include your name, address, and a brief bio of why you have breathing problems. I will make them and give them away in order I receive the entries. It generally takes me 3 to 4 weeks to make one afghan. So, please have patients. *HUGS* to you all!!!

I just want everyone to know that if you don’t have the funds to donate, please don’t. If you do have the funds, any amount of help is appreciated… whether it’s a $1, $5, or whatever… I’m not doing this to profit. Whether or not you donate, you can still enter yourself in the Need a Hug giveaway.

needahug2015

gofundmepic

photo-7

August & September Need a Hug Giveaway Afghan

August & September Need a Hug Giveaway Afghan

June 2014  Need a Hug giveaway

June 2014
Need a Hug giveaway

January 2014 Giveaway Lapghan Deadline for entries is January 31. Drawing on February 1, 2014.

January 2014 Giveaway Lapghan
Deadline for entries is January 31.
Drawing on February 1, 2014.

AfghanGiveaway

3 inch granny square afghan.

3 inch granny square afghan.

photo-11

SpringAfghan

Afghan for a Friend

Mother-in-Law Afghan

Afghan #1

A Hodge Podge of Topics to Talk About…

Living On Oxygen for Life

First, let me state that I met a wonderfully sweet lady Wednesday evening. She stopped me to ask about my oxygen and we got to talking about health issues. You all know that I will always stop to talk if anyone asks me questions. In fact, K went on shopping while us ladies talked oxygen. Being that it’s the Christmas season, K gets a little gung-ho in Michaels, Hobby Lobby and even Lowe’s or Home Depot where decorations are concerned. I dare not set him loose in these stores for too long because he will go hog wild wanting whatever he sees. But you know, he does a darn good job decorating. He just has an eye for what looks good. I, do not. It’s a shame because I like being creative. I have a hard time visualizing his ideas.

Anyhoo… before I get too carried away on strange topics, I’ll reign myself in and try to focus for, you, my reader’s sake. You’re welcome! *wink* Ugh.. where was I? Ok, first, the important thing. Opsumit. My PH doctor did some checking and Opsumit causes some people increased difficult breathing during the first month of taking the medicine. However, this problem, the doctor told me, is suppose to go away after the first month. Remember, this is a NEW drug. So the severe shortness of breath that happened while on Opsumit was not normal because I tried this medicine for 3 months. I don’t know why it affected me this way. It has all the good benefits. It’s not suppose to damage my liver, I only had to get lab work every 3 months, I took it once a day, and it’s in the same class of medicine as Tracleer. I really, really wanted this medicine to work for me but it didn’t. I’m not saying this will happen to you if you try it. Everyone reacts differently to different medication. I have a strange body that doesn’t tolerate cardiac and PH medicine very well. For that matter, I don’t tolerate most prescription pain medicine very well either. Lucky me! I can’t even drink alcohol.

If you follow me in Facebook, you will know that I’ve been crocheting to keep myself calm before my heart cath. Crocheting is so soothing.. don’t you think? Well, it is to me. Though, K calls it knitting but it’s not and he only calls it that just to poke fun at me. I love creating things. So, below are a few Christmas things I’ve created. I hope you have a great day (Thursday). Ohmygosh! I just realized it’s past 2am. Yikes! *hugs* to you all!

petstockings penguin

gingerbread FullSizeRender-4

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.

Who am I?

Living On Oxygen for Life

I know I mentioned on my Facebook page that I was going to write an “About Me” page. I plan to do just that. There’s so much to say. I’ve experienced a lot in my life starting from the very day I was born with serious health problems. In fact, I was told that when I was born, my father cried because I was not perfect.

I know all expecting parents wish for a healthy baby with ten fingers and ten toes. Well, I came out 3 weeks late and had eleven toes. That was just the beginning of a long battle for surviving.

So, if you want to know what kind of childhood I had growing up with pulmonary hypertension, cardiac & breathing problems, & scoliosis follow my blog because I’m about to pour it out in this blog of mine. My life has shown me that miracles do happen.