When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)

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*

Happy September!!

Living On Oxygen for Life

Happy September everyone! I’m super excited! First because it’s September! Second because it’s almost my birthday. Third because it’s almost my 25th wedding anniversary! And fourth because, well, it’s almost Christmas!!! haha! Here in Texas the heat of the summer is starting to cool down. Unfortunately, a hurricane hit. It’s very sad. People are struggling to clean up the mess after realizing everything they owned is ruined or washed away. It’s most likely going to go down in the books as the worst hurricane disaster in the United States’ history. Hurricane Harvey dumped 25 trillion gallons of rain on Houston and the Southeast area of Texas. Please donate to Red Cross Organization if you can. God bless Texas.

I have been away from blogging for a bit (2 months!) and for that, I’m super sorry. I have been going through some health changes that needed some “lifestyle” adjustments (again)… which blows… However, I’m here now, ready to entertain you once again with my exciting life of living on oxygen. So, let’s begin! YAY!

Today, I went to my doctor appointment. As the nurse weighed me, she asked if I wanted to get my flu shot today. I was like, “What? You have them already???” [insert confused, surprised look on my face] I normally get my flu shot in October. Not that I find it superstitious to wait until October, but it’s always been my thing. Ok, maybe it’s a little superstitious. hehe! I could get it now but I don’t want to feel tired and achy around my birthday and 25th wedding anniversary. So, I’ll wait until next month. I never miss getting my flu shot. It really helps!

If you can get a flu shot, do it, but I know some people have negative reactions to them. Be extra diligent about washing hands after touching things in public.

As I was driving home from the doctor’s office, I was looking at the gas stations. They still have no gas in them. Some have diesel fuel left but not unleaded. A lot of people panicked and ran out to get their gas tanks topped off, filled up and some even filled a gas can the last few days. Now, no one has gas left. I’m sitting on just under a quarter of tank of gas. K’s car had a quarter tank left this morning but I’m not sure if he’ll have enough to get to work tomorrow. I hope gas comes soon. It’s starting to freak me out.

Up all night…

Living On Oxygen for Life

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

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

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

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

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

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

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

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

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

October Means Flu Shots

Living On Oxygen for Life

A little nervous. I have a doctor appointment tomorrow (Monday) and should be getting my flu shot. I’m nervous because last year when I got the Prevnar13 shot (a different Pneumonia shot) it nearly kicked my reared, leaving me feeling sore and wiped out. I told K that I wasn’t ever getting that shot again. He said, “Yes you will.” That shot is what stands between me and a stay in the hospital if I get sick and it progresses into pneumonia. I just hope the flu shot won’t hit me as hard as the Prevnar 13 shot did last year.

The flu shot usually gives my arm & joints achy pain as well an achy body with a mild sore throat and low grade temp (99 degrees) for a day maybe two. But that’s normal for me. It’s natural for your body to respond in such a way, to a degree, when it detects a foreign body. It tries to attack it and then it builds up antibodies to it to prevent future similar infections of that kind.

I hope if you haven’t yet gotten your flu shot and are not the few who have an allergic reaction to its ingredients, please get the flu shot. It can really help if you get a cold. It will help prevent that cold from turning into the flu or even pneumonia.

Here’s some information about Prevnar 13. Click on the picture to enlarge and read. This is the information my doctor gave me last year. You can also search my blog using the search box for a post I did about Prevnar 13.

PCV13

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!

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!

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]

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.

May Update 2015

Living On Oxygen for Life

You may have heard of all the rain Texas has been getting over, what seems like, the longest month of May in history. Even my garden plants have developed a fungus on the leaves. I’m hoping I can salvage the vegetable garden I’ve put a lot of work on.

It’s been extremely humid here and that has taken a huge toll on my breathing and energy level… not to mention triggering a number of migraines. When I get this way, I tend to get in a funk. I hate funks! So, if you’ve noticed me being pretty quiet on my blog lately, that’s why. I was getting a bit of the funk. Even the kitchen reno has taken a pause. Yikes! That’s scary!

But slowly I’m coming back around… that fun, personable, groovy self that you all know and look forward to hearing from, right? haha!

On May 22, 2015, I had my Pulmonary Hypertension appointment where I was hoodwinked into doing a 6 – minute walk. Darn those doctors!!!! I have no idea how far I walked. I forgot to ask. I walked with 6 LPM of oxygen and still felt really winded. Oh well.. better luck next time, right? I don’t pay much attention to the results anyway. They are way too easy to skew the results. hehe! Even K thinks so. We had a fun discussion about that.

After the PH appointment, I had my CT Scan on my heart. It was to measure my ascending aorta (my aorta aneurysm — it sounds more dramatic saying aorta aneurysm!). My Cardiologist measured it with a Echocardiogram at 5.1cm late last month, which TOTALLY freaked me out. At 5.5cm, he would order a stint. But, he wanted the CT done because my heart is positioned in a way that it’s difficult to measure.

I have to tell you that I was pretty stressed over it. I wanted to know the size of it, right NOW! Luckily, with a bunch of people thinking about and praying for me, all has ended much better that I could hope for. Thank you so so so much, y’all! Much love to you! The CT Scan came back with the measurement of 4.3cm which is significantly lower but still considered dilated. My Cardiologist will continue to monitor it annually or semi-annually. It’s just so weird because I don’t have a reason for this aneurysm to happen.

I did get to go to Oklahoma to see my niece in her first ever dance recital and on the way (I drove alone!), I nearly had ANOTHER blowout with a tire that looked almost brand new. I had to pull off the highway because my van was making a really weird noise. When I looked, I couldn’t see the missing tread because it must have been on the bottom of the tire. That’s got to be Murphy’s Law! Thankfully, I was very close to my sister’s house and my brother-in-law handled it from there. This is a prime example of why we have AAA.com.

May has been a very trying time interspersed with a bit of joy. Just when we thought everything was going well in the beginning of the month, our heat pump (a/c) died and we had to get it replaced. That was NO FUN! But I did set up a donation GoFundMe account so that I can continue to create and send FREE of all charges crocheted afghans and lapghans to those who have breathing problems. This project has been so important to me. I recently sent out an afghan this month and will be sending out a few more within the next couple of weeks. It really keeps me busy and makes me feel happy to spread joy and comfort to those who need a hug and reminded that we all care about what they are going through. I want them to know that they’re not alone. So check out the Need a Hug tab above to see how you can qualify to receive a special made afghan/lapghan. Or, if you can spread the word about donating to this great cause, please do! www.gofundme.com/HelpNeedaHug. I keep this page updated as much as possible.

Have a great day everyone!

We bring you a Medical Update…

Living On Oxygen for Life

IMG_3990 Oh the joys of hospital gowns. I never have been given a gown that actually fits. They’re sizes range from Large to Extra Large. Yeah, I asked. A lot of times I can just wrap the gown around my front, back and then to front again to tie it. However, the gown I got today was the kind that had short ties. So no wrap-around action for me and of course the opening had to be in front. What a fashion statement I made today!

Today’s appointment was with my cardiologist who I’ve seen for the past 20+ years. He’s AWESOME! He always asks me how I’m doing, what I’ve been up to, and if I’m still doing whatever it was that I was doing the last time I saw him which was a year ago. After all the pleasantries were out of the way, we started in with my questions. First I asked him what he has diagnosed my cardiac problems to be. His answer was, “Which one?” Haha! We laughed. Nothing with my health problems is ever easy or simple. In fact, my body is very complex. One organ’s problems affects another organ’s problems and etc.. It’s very frustrating because my body doesn’t want to do what doctors seem to think it should do. I think there’s a Murphy’s Law for that somewhere.

My Cardiologist told me that I have Supraventricular Arrythmias as well as Ventricular Arrythmias and when I first went to see him 20+ years ago, I had premature ventricular contractions really badly. Thus, the reason why I’m on Cordarone because it was the only medicine at the time that didn’t cripple my breathing ability. Now that we got that straightened out, I told him what the Cardiac Electrophysiologist (maybe I got that backwards) that my Cardiologist sent me to suggested Tikosyn for my heart problems. You see, I was looking for a replacement for Cordarone. Being on Cordarone is not a very safe thing for my body. It can lead to Thyroid problems as well as scarring of the lungs which is called Pulmonary Fibrosis. Tikosyn is used for both A-fib and my problems. However, after reading about Tikosyn, I felt the risks of taking Tikosyn for my actual cardiac problems were too high to make me comfortable to trying it. Beside, you have to stay in the hospital for 3 days to start Tikosyn. So, my Cardiologist and I are in agreement for me to stay on Cordarone, since I have yet to have any problems relating to Cordarone in 20 years.

Now wait a minute, you say. Don’t the PH doctors think this current thyroid problem that I currently have occurred because of Cordarone? Funny that you asked that because I brought this up with my Cardiologist. I explained what happened when I tried Opsumit for 3 months last year which ended with me being hospitalized for 3 days. I told him how I was diagnosed with Hyperthyroid and that the PH doctors were saying it was only because of me taking Cordarone. They wanted me off of it. I told my Cardiologist the status of my thyroid now that I’m slowly decreasing the thyroid medicine I’m taking. His thoughts are that it could’ve been Opsumit interacting with the Cordarone. It wasn’t technically Cordarone giving me thyroid problems, it could be that Opsumit in conjunction with Cordarone, triggered a thyroid problem in me. It actually makes sense to me!

According to the ECHO I did today, my heart looks good, pressures ok, blood flow is good. Then there is the not-so-good news. My aorta. For some mysterious reason, my aorta measured at 5.1cm. I don’t have high blood pressure. So who knows why this is occurring. Now I have to go get a CT Scan to more accurately measure my ascending aorta. My Cardiologist says that if it gets to 5.5cm, he will want me to go to the hospital where my PH doctors are so that I can get medical intervention. Sounds like some sort of surgery to me. *pout* He said that there are ways to not have to cut me open to put in a stint. I’m not sure if that’s makes me feel more reassured or not. Either way, it’s gonna hurt somehow. haha! I shouldn’t put the cart before the mule, so to speak. Why worry over it too much. I’ll wait to see what the CT Scan says first.

I’m just a little disgusted with not getting a clean bill of health with my heart today. It’s always hard for me when new things pop up unexpectedly with my health. It takes me a couple of days to accept the news and to begin to move forward again. I did show him a copy of my heart cath that I had last December. He thought it looked great! Hooray! Sometimes I feel like my PH doctors are all about doom and gloom. It’s nice to get a little optimism from my cardiologist!

I hope you enjoyed this Medical Update! *wink*

Stay in touch and be well. *HUGS*

Health update… with pictures!

Living On Oxygen for Life

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

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

TSH March 2015

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

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

Dallas Arboretum March 2015

Dallas Arboretum
March 2015

Christine at the Dallas Arboretum March 2015

Christine at the Dallas Arboretum
March 2015

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

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

[April 2015]

Random Picture Day #13

Living On Oxygen for Life

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

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

tulips

cottage

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

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

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

 

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

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

Chicken what???

Living On Oxygen for Life

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

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

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

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

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

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

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

Heart Cath Results!

Living On Oxygen for Life

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

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

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

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

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

heartcathresults

Picture from The Merck Manual.

Picture from The Merck Manual.

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

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

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

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