Crazy Awesome Weekend with Family!

Living On Oxygen for Life

I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.

When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!

After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.

While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay! 

We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out.  My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy.  I asked to borrow it but I didn’t think it’s transferable. Darn! 

We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen. 

So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.” 

I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me. 

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The date is set….for Tikosyn

Living On Oxygen for Life

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

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

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

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

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

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

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

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]

The hustle and bustle of December…

Living On Oxygen for Life

Oh the hustle and bustle of December. Are you feeling it too? Feeling a little overwhelmed… stressed out.. so darn busy? My December started, of course, with my heart cath. Though, I’m relieved with the results from the cath, the after effects of the catheter that was inserted into my heart and partially into a lung, gave me two days of mild arrhythmias and made me feel a little tired. However, I bounced back to tackle Christmas. Hooray!

Fireplace

I really enjoy Christmas but I don’t have a whole lot of energy for decorating. K really stepped up this year. He wanted to make this Christmas really nice because last Christmas was such a sad one. His dad was very sick and then he ended up passing away. This year was totally different. Oh my gosh! He went all out! He wanted this Christmas to feel festive and happy. I have to tell you. He did a wonderful job. In fact, I was asked to hire him out to decorate other people’s houses. That’s so crazy! Above is a picture of our Mantle he decorated.

We didn’t have a White Christmas this year. In fact, it was 70 degrees the day after. So weird… I know!!! I got busy creating a stocking for Mary (my cat) and Rocco (my pup) this month. I think they turned out pretty well. I got no complaints from them. In fact, Santa had NO problem filling them with goodies this year. Here’s the picture of them:

Pet Stockings

December is the hardest month of the year for me.. well, for K and my relationship. It’s all a lot of STRESS and a little bit of loneliness because K has to work longer days. He needs me to take care of him instead of the other way around. Then there is the Christmas shopping, wrapping, decorating, baking… etc.. Not to mention the weather turns cold and dreary which makes us feel a little blah, blah, blah. So, what do I do? First and foremost, I take a chill pill (no pill actually taken!) and tell myself, “It will be ok.” Then I turn to K and say, “K, (yes, I actually call him K) let’s do this Christmas thing!” Naturally, we remember baby Jesus was born on Christmas. Mustn’t forget that!

Part of breaking through the stress building up is realizing that my freezer and crockpot is my best friend in the kitchen. If I’m making lasagna, I make enough to make an extra 8″x8″ pan of it to freeze for a time where I just don’t have energy to cook. You can do the same with Chili, Meatloaf, Enchiladas, etc.. I’m in love with my Crockpot and have my mother-in-law as my go-to person for recipe questions. She has the best Spare ribs crockpot recipe in the world. Yes, I will share it with you. Be patient, I’m still typing this blog post. I’ll get to it next. hehe! Where was I? To be able to throw food in a crockpot and forget about it for about 5 to 8 hours, is truly a luxury and an energy saver. So, when you’ve mastered freezing meals and crockpot cooking, you are going in the right direction.

Another thing is, if you are cooking a Christmas meal, order a cooked turkey or ham from your grocery store or from a store that does that kind of business. That way, it’s done, you don’t have to worry about cooking it. All you have to do is send someone out to pick it up. The very most you would have to do is warm it up in your oven. Have others bring dishes of food to go with the meat. Why do YOU have to do it all? You shouldn’t have to. You can even make cookie dough, freeze it, and then pull it out of the freezer when you have the energy to finish the job. I know for a fact that my older sister freezes her sugar cookie dough after she makes it because she just does NOT have the time to make & bake all those cookies in one day. And she’s a healthy person! By the way… I’m getting a whole batch of frosted sugar cookies from her for my Christmas gift this year! Oh yeah, they are SOOO worth it! Yippee!! Ok technically, I’m not getting them until next month when she comes to visit but it’s something I look forward to very much.

Since it’s the end of the year, you know what next month will bring. Yep, new health insurance deductibles to meet for 2015. Well, I do and it stinks. I’m not real excited about that but hey, it is what it is. However, I’m not going to worry about it because I’m thinking about eating the Sugar Cookies that my sister will bring. Oh and seeing my sister and her family too. That’s what I really mean! *wink*

I hope you have a great New Year’s Eve! I have a great project for next year. I’ll blog about it in a day or two. Love to you all!

Reality…

Living On Oxygen for Life

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

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

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

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

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

Doctor appointment tomorrow…

Living On O2 for Life

1/30/2013 Correction Update: Wow! I was really tired when I wrote this post. I didn’t have a PH appointment scheduled today. It was another appointment all together. But, the post below is what I go through for an average PH appointment:

Tomorrow I have an early doctor appointment. This appointment is scheduled at 8 am and it’s an hour drive away. Now, I’m not really a morning person. I like to stay up late and wake up around 9 or 10 am in the morning. But tomorrow I will have to wake up at 5:30 in the morning so that I can get a shower and get dressed all for a doctor appointment that doesn’t really excite me. However, go I will! I will be seeing my Pulmonary Hypertension doctor and praying that I don’t have to do the 6-minute walk. My husband walks with me because he’s the one who carries my portable liquid oxygen tank. If I had to carry it, I would not get good results on the tests.

The day before I go to this doctor, I start getting stressed out and worked up to the point where I just want to call and cancel the appointment. I know better not to do that… sure.. but I still feel that way because…. gosh darn it… I’m so tired of going to doctor appointments. But I will persevere and be the trouper that I am. My husband’s famous quote when I get this way is: “You can do it!” Sure I can do it but does it mean that I have to like it? lol!