2017 A Year’s Review…

Living On O2 for Life

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

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

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

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

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

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

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

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

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

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

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


A Long Awaited Update! September/October 2017

Living On Oxygen for Life

Let’s be honest… I’ve missed blogging and I know it’s been since before my birthday (last month) that I’ve posted anything on my blog for you to read. In my defense, the last two months have been incredibly… what’s the word I’m looking for?… trying?…no. Hectic? You could say that. Let’s throw in challenging with a bit of a MacGyver twist and super stressful at times. If you wrap all that up and include my two road trips that I took (one to Oklahoma to see my family & one to South Padre Island for my birthday/25th anniversary), I have to admit, it’s been a pretty awesome adventure.

It all started with my birthday/anniversary vacation that we try to take every year. We both took turns driving down to South Padre Island which took us about 9 hours even while having to stop nearing every two hours (when K was driving) to get out and stretch our legs and walk the dog. Rocco loved sniffing new territory but I hated having to use convenient store or McDonald’s bathrooms. Not just because I never knew what to expect going into one of those things but also because getting in and out of the car and walking to the bathroom now wears me out and makes me short of breath in the worst way. That’s something new.

We made it to Padre and it was overcast but that’s ok because we knew Hurricane Harvey just past by and almost everything was up and running again on the island. Yay for us! Two days after we arrived, a boat washed up on the beach which drew everyone, including the Padre Beach police, to check the boat out. We should have set up a beach chair next to it and charged people for us to take their picture! It took nearly a week for the boat to wash up this far on the beach.

K and I normally go for a nice steak dinner for our anniversary celebration. But who knew that there wasn’t a restaurant on the island, nor close by on the mainland, that sells a good steak? Instead, we had a small party of two at our condo with a gigantic birthday/anniversary cake that K intended to share with the waitstaff had we gone to a restaurant. Thankfully we brought our big ice chest and I had some square foil pans to save the leftover cake to freeze and take home. You better believe that I ate it all once I got home (K had the last piece..darn him!). I LOVE birthday cake!

We really had a lot of fun and took a few goofy pictures. I was even a pirate! Argh! After ten days in Padre, it was time to go home and on the way home, the craziness began. We were north of Austin, Texas when it happened. I was reading and K was driving… thankfully. Our grill from the front of our van broke loose and flew over the hood and smacked our windshield and then continued over the top of the van. It scared us so bad. Thankfully, no one was behind us and we looked but didn’t see it land on the highway. We get home ok and called our mechanic to see what it would cost to get it replaced. $600! Are you kidding me? The thing was made mostly of plastic. K and I had the same idea… look on eBay for the part. K said he could fix it himself and I was, like, “You go Rambo…you get into that MacGyver mode!” Sure enough, it cost us a total of $200 and K attached it with no problems! YAY K!

What K didn’t tell me was that on the way home from Padre was that he was starting to see floaters in his right eye. Then when he went to work, he called his optometrist and they told him to come in RIGHT NOW. He had a detached retina. I was so worried because now he had to have surgery and this was his eyesight!. The first time I went with K to his optometrist, K told me that he had been telling the doctor about me because he has a daughter who has some similar health conditions. Let me tell you that I have no problem that K talked about me. I mean, I blog… so of course I don’t mind. I was really excited about meeting this doctor to learn more if he wanted to talk about it. Naturally, I knew this appointment was about K but I did bring a printed copy of an x-ray showing my scoliosis. This doctor was really neat and very personable. K and I really like him. But what excited me the most was his waiting room. Holy cow… the moment I walked into the building, I was thinking that EVERY waiting room should be like this one. There were crocheted afghans on a blanket rack next to the door and in each waiting area there was a card table with a puzzle to be put together. I immediately zoned in on the puzzle. K knows. I love puzzles and there was an older man sitting there working on the one I noticed. I just blurted out … “Oh yay a puzzle!!!” (I know you’re visualizing that.. aren’t you? haha!) The man heard me and started to get up saying that I could work on it. I told him to please stay and I can work on it with you. I told him that I love puzzles and this reminds me of when I worked on puzzles with my dad. Awww! I know, right? I was so engrossed that I didn’t even hear K’s name called by the nurse. What’s so awesome was that there was ANOTHER puzzle in the waiting room in the back! I was in waiting-room heaven!

K’s surgery went well but I wore myself out having to drive him to appointments and waking up to check to see if he wasn’t sleeping on his back for the first week after surgery. That was stressful but after the first week, he could sleep on his side but NOT on his back. You would think that it wouldn’t be a big deal but people move around while they sleep and K is accustomed to sleeping on his back. So, I had a lot of waking up to do to check on him. With everything that was going on with K, I truly had an eye opening experience about how much he does for me without complaining. He drives me to doctor appointments that are an hour away, he pushes me in a wheelchair when I need it, he takes care of everything in the background when I have migraines, not to mention doing most of the chores and all of the grocery shopping now…and most of this is done without me having to ask. I got a taste of what he does for me when I needed to take care of him for a change. I was definitely humbled and I gained a new appreciation for what he does for me. Not that I never appreciated it but my health is changing faster now, requiring K to do more and I don’t always see what he does for me.

Lots of love to you all! Don’t forget to subscribe to my blog to follow along! Leave a comment too! Have a great day!!!

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!

Sleep Study Time

Living On Oxygen for Life

There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.

I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.

So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.

Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.

If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!


Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.

Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.

Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.

Our Vacation Experience with Oxygen

Living On Oxygen for Life

Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.

Everything we need for vacation, including medical supples.

Everything we need for vacation, including medical supples.

When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.

This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.

Oxygen vs. Stairs

We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.

Flat Tire

The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!

After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!

It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.

Dolphins along the coast of Gulf Shores, AL

Dolphins along the coast of Gulf Shores, AL

This is how I sit at the beach under a tent on low beach chairs.

This is how I sit at the beach under a tent on low beach chairs.

Rocco would sit with me while I crocheted on vacation.

Rocco would sit with me while I crocheted on vacation.

We went out to celebrate my 47th birthday and our 24th Anniversary!

We went out to celebrate my 47th birthday and our 24th Anniversary!

We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!

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


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.