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!

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*

My PH Story

Living On Oxygen for Life

While at the 2016 Pulmonary Hypertension International Conference in Dallas, TX on June 17 – 19, I met Steve Van Wormer, who helped create the PHAware Global Association. At the conference, he did interviews of PH patients to help get their PH Stories out to the public to raise awareness of this devastating and currently incurable disease. He asked me to do an interview. I tried my best to do the interview. He was SO gracious when my brain decided to blank out.. I explained that I write much better than I talk. The long term effect of high CO2 on my brain really has affected my memory and recall. Thank goodness for editing… and cut & paste. Hopefully, he can make something out of what I said.

For this reason, I want to get what I REALLY wanted to say here on my blog. Here we go!

**********

I'm aware that I'm rare. Rocco has now become PHAware. He's my PH Pup!

I’m aware that I’m rare.
Rocco has now become PHAware. He’s my PH Pup!

My name is Christine Liles and I have Secondary Pulmonary Hypertension. I was born with PH due to Congenital Heart Defects and Scoliosis that caused Restrictive Lung Disease. The doctors knew almost right away that I had Pulmonary Hypertension. The pressures were really high and since I was born in 1969, there were no PH medications or a course of treatment for this very rare disease. So, I grew up living with this disease taking Lanoxin for a short time to help slow my heart rate down. I was restricted from most gym activity because of the shortness of breath.

My parents & sisters were great at providing me with as close to a normal life as possible. Before the age of 10 years old, if my sisters bowled and played baseball in leagues, I was right there with them. Granted, I was much slower but I did it even though the doctors kind of frowned upon it. At the age of 10, my parents finally talked my Cardiologist into performing a corrective surgery on my Ventrical Septal Defect in my heart. My Thoracic & Cardiac doctors, both, didn’t want to do it because they didn’t think I had a chance to make it off the table. It was my most glorious moment walking out of the hospital 7 days later with a patched VSD. With that successful surgery, my PH pressures reduced slightly.

Life really improved until I turned 17 years old. I started having blackouts while driving, began becoming forgetful, and my CO2 was much higher. So I started using oxygen at night. As time went by in my life, I started having more Shortness of Breath. My oxygen flow increased, I started using a bipap to sleep with and I had to stop working all together. This happened when I was 23, just a year after I got married to the love of my life. It was a very difficult adjustment. He knew it was coming.. this health change. I told him when we were dating and then before we married. This is the best I will be. I won’t get better because there are no medications to fix my PH and only one pill that can regulate my heart arrhythmia that I now have. I asked him… Can you handle this? His answer was total honesty which is what I wanted to hear but was hard to hear because he said.. I don’t know. And then, I went on oxygen 24/7. My husband has been my rock and he’s made from the finest quality of human beings… his parents.

In 2006, my Cardiologist asked me to check out the medicine Revatio & Cialis with my pulmonologist. So off I went to see my Pulmonologist who then sent me to see a PH Specialist. I didn’t even know there were PH Specialists. Over the years, after trying most of the PH medications that are available, which there aren’t nearly enough, there is only one medication that my body can tolerate. This is what I will stay on until something new comes along that my doctor thinks might work. I’m not a candidate for lung transplant because of my deformed ribs. I spend my life finding different ways to do the things I need to get done. Picking things off the floor are by using my toes to lift it to my hands. Vacuuming is my husband’s job now. I bend at the waist to wash my hair. I have an adapter for my van to use my bipap on the road for vacations while in the car if have trouble breathing. I do things in short bursts of energy. What takes my husband 2 hours to clean the whole house, takes me all week and even then I can’t get all of the really hard things done.. such as scrubbing the tub, vacuuming or mopping the floors.

This is my life now and I’ve learned to adapt which is the key to keeping myself happy. I’ve found hobbies that I can do that brings me GREAT joy. Just to be able to garden, my husband has built me a raised garden at the height of 16 inches to help me not have to bend down to the ground to grow vegetables. Instead of growing my dwarf fruit trees in the ground, he planted them in half whiskey barrels. I had trouble with dragging a long rubber watering hose, so I asked for a Pocket Hose because it is SOOOO light!

Will there be a cure in my lifetime? I don’t really know. In all honesty, I’m not so concerned for a cure for ME. I’ve had a GREAT life, filled with love and so many adventures. What I am concerned about are all the children who have Primary Pulmonary Hypertension. They need a cure in their lifetime. They have their whole life in front of them but with PH and without a cure, all they have are the medications that are currently available. My passion is for these kids. I know what it’s like to grow up with health problems. PH is no easy disease to live with. Help us. Be PHAware and get the message out that we need a cure. WE ARE DESPERATE TO BREATHE. Check out PHAware.global to see how you can become involved in finding a cure and spreading the word about Pulmonary Hypertension. Or follow on social media @phaware

#PHAware

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!

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)

Change of plans? What?

Living On Oxygen for Life

I get a phone call today from my cardiologist to make sure I didn’t have any other questions before going into the hospital next week. I asked a few basic questions, one being, how quickly does this medicine take effect? We got to talking about Tikosyn and how the doctor will titrate the dose according to how my heart and body reacts to it. I’m sitting on my couch taking notes saying uh huh and ok. The conversation twists and turns to the part of the morning of my admission.

The woman says that the hospital will only call starting from about 8am if they don’t have a bed available. So if they don’t call, I’m suppose to go to the hospital registration/admission. From there, I have to wait around for a bed to become available.

WHAT? That wasn’t what I was told before. Last time, the hospital was suppose to call me when a bed was available and then I go there. I explained to the woman that I use oxygen 24/7, I’ve never been to this hospital before (which makes me nervous because they will only have whatever medical records that this doctor provides to hospital and I’ve only been to his office twice and actually seen the dude once!), and I can’t just wait around for what could possibly be a few hours for a bed. She told me to ask them for oxygen.

Now that K is home from work, I gave him the “Drama Update” and he was just as frazzled as I am about the whole thing. The GOOD news out of the whole conversation is that K can stay in my room with me the whole time if he chooses to which will be a hospital first for us. He always went home. I didn’t blame him. I mean our bed is much more comfortable than the provided chair, even if it does stretch out bed-style.

Today my heart has been skipping quite a bit. I’ve been relaxing a lot yesterday and today. I feel kind of sluggish or as if I have cabin fever or the winter blues. It’s been raining so much here. I’m just ready for some sunny days to bring a sunny smile to my face. Let me bask in the Sun’s warmth so that I may feel the glow of happiness grow into a smile on my face.

Tomorrow I head out to my PCP doctor appointment and catch him up on what’s been going on in the past 2 months. I should write some notes before I go so that I don’t forget anything. I have that much stuff to unload on him. Poor guy. He earns his paycheck with me as his patient. I think I keep things interesting for him though.

Well, I enjoyed this talk with y’all. I hope you did. I just shipped out a Need a Hug afghan to Washington state! Yay! If you want to donate to my Need a Hug project, you can do so by clicking the GoFundMe button. *hugs* Thank you!!! Have a great weekend!

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]

An Overload of Information to Catch You Up!

Living On Oxygen for Life

Oh my goodness… I have so much to catch you up on. First, let me show you my MacGyver invention that I took to two movies and a trip to see my sisters a few days ago. It enabled me to take both of my portable liquid oxygen tanks and not have to carry them myself.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

I put one of the portables in the bucket and strapped the whole thing in my van on the middle bench with the seatbelt. It worked really well! Next thing I need to tell you that my trial with Adempas is over. I didn’t do very well on it. I had a constant headache and my breathing had gotten worse. So, I talked with my doctor and she agreed to stop the medicine. Having Restrictive Lung Disease makes it hard to find Pulmonary Hypertension medicine that my body will tolerate. Right now, I’m back on 62.5mg of Tracleer twice a day.

Christmas was great!! K and I decorated the house again this year. Unfortunately he had to work on his days off but I had the energy to decorate most of the Christmas tree myself since I went slow. It took me a couple of days to get the ornaments on the tree. Here’s a couple of pictures of what we did.

Our 2015 Christmas Tree!

Our 2015 Christmas Tree!

K made our table look great with a live tree from Jackson & Perkins.

K made our table look great with a live tree from Jackson & Perkins.

I had fun crocheting some holly and berries... I turned them into knob ornaments.

I had fun crocheting some holly and berries… I turned them into knob ornaments.

My Mary enjoying the Christmas tree 2015.

My Mary enjoying the Christmas tree 2015.

 

 

 

 

 

 

 

 

 

 

 

 

When I was visiting my sisters a few days ago, we met up at Winstar Casino since it was the most central place to meet. My little sister is the one who went to Paris and she brought me back Klondike! It was good to get him back home but it looks like he is going to be a world traveler because my little sister said they will take him to Germany when they go. Germany!!! How cool is that? They really liked the Shutterfly book I made of all the pictures they took of Klondike in Paris. They texted them to me each day they were there. By doing this, it gave me a chance to travel by proxy to places that I’d never thought I could go. Overseas! Plus, I got a very awesome purse and a beret! Yippee!!

The French Beret I got from my sister!

The French Beret I got from my sister!

I know I’m overloading you with a bunch of information but I can’t stop now! I have more news to tell you! This one is super exciting because I worked all year to accomplish this one. My dwarf Meyer Lemon tree, that I’m growing in a half whiskey barrel, produced 3 whole lemons for the first time ever and it took all year to grow them. I think I’m going to make lemon brownies with a glaze on top. I forget what they are called but I found a yummy Pinterest recipe. The lemons are HUGE!

It took one year to grow these!

It took one year to grow these!

I’m still crocheting Need a Hug afghans. Even though 2015 was pretty rough and my Happy Jar doesn’t have a whole lot of “Happy Moments,” I’m determined to make 2016 a more awesomer year. Yes, I said AWESOMER which is a new word I invented and I’ll say it until it catches on! haha! Have a great year everyone and stay well and warm. Sorry I had to throw everything at you in one blog post. Believe me, I could go on but, I’ll let you digest this post for a bit before I post more. Lots of love and hugs to you all.

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.