This is who I am

Living On Oxygen for Life

I was asked to contribute a little something for another blogger. She’s building a blog community for people who have PH or have just been diagnosed with Pulmonary Hypertension. This is what I wrote: (It turned out a little long!) find her blog at PHight or Flight

My life is a little bit different from someone who was just diagnosed with PH. It’s different in the way that I was born already having PH because I have congenital birth defects such as: ASD & VSD, Scoliosis, & Restrictive Lung Disease to name a few. So, I was pretty much told from day one that I’ll never be able to do this or I shouldn’t do that. Basically my time clock started on day one and after spending my first month of living at a hospital, my mother was told to come get me and take me home because there wasn’t anything left the doctors could do for me. That was in 1969. I will be turning 45 in September. Yippee!!!!

You’re probably wondering how I do it. How do I beat the odds? Never, ever give up. No matter how much life sucks or how dismal the outlook seems, you keep marching forward. I am a very realistic person who doesn’t want explanations from doctors sugar-coated. I want facts. Facts are something you can work with… Not the “what if” scenarios that can keep you in fear of a future event that may or may not even happen.

In 2006, I started going to a Pulmonologist who specializes in Pulmonary Hypertension. I went through the whole process of getting correctly diagnosed with PH for insurance purposes because my breathing was getting worse. At this time, I was already using oxygen 24/7 and taking cardiac medication for Ventricular arrhythmias. Although, I was still going out dancing at a dance club… Just no longer drinking any alcoholic beverages which I only did socially anyway years ago. Besides, I don’t need alcohol to have fun! *wink*

Since 2006, I’ve had a slow decline in health (so, no more dancing…boo!). I’m getting shortness of breath a lot more and I’ve had to increase my oxygen flow now. Instead of using 5 liters per minute 24/7, it’s now at 6 LPM. Each step of a decline in health hits me hard emotionally. There’s really no way to prevent the emotion side of things but if you can accept the fact that the human body wasn’t created to live forever in pristine condition, then it becomes easier to move past the emotional part. Once you are past the emotional part of accepting how you are physically today, you can actually learn new ways of getting things done in your daily life. There are going to be things you’ll find that you can no longer do on your own or at all. It will make you mad. It makes ME mad that I have trouble doing things that I once was able to do easier than before. It will help if you have family and friends who are willing to understand your condition and are able to pitch in to help without making you feel as if you’re an invalid which is so important! There is a fine line that helpers need to figure out with the person who has PH where the helper helps up to a certain point. I really believe if a helper does everything for the person with PH, the patient could end up giving up on life’s little joys. Then, depression sets in…which is a huge problem when living with PH. If you notice that you are getting depressed, talk to your doctor. Get help.. Don’t ignore it.

My advice for people living with PH or just diagnosed with PH is give yourself a break. You did not cause this to happen to yourself. It’s not your fault. It is very ok to allow yourself a “ME” day every now and then to give your body and mind a whole day to just rest. Find something that you absolutely love to do and have fun with it. For me, that would be reading, container gardening, or crocheting. Or just flip through a good cookbook to find a new recipe to experiment with. You need things that make you smile on days where you feel bad because, yes, you will have those days. Just don’t let yourself get lazy. Try to stay as active as you can but remember there will be days where you feel like you just can’t do it. Give yourself a break. It’s ok.

However you chose to battle PH, do not let it do more harm than good. Take your medicine as prescribed. If the medicine isn’t making you feel better or is giving you a bad side effect, contact your doctor to see if you can try a different medicine. Don’t just stop taking it and not tell your doctor. That’s dangerous. Also, if you are suppose to use supplemental oxygen, then use it like you’re suppose to. By not, using your oxygen properly, you are only harming your heart by making it work much harder than it needs to to pump more blood out to your body. You will end up starving your heart, brain and other muscles from that much needed oxygen that you refuse to use. So, give your heart and lungs a break and add possibly years to your life by using your oxygen and taking care of your body. Stay away from sick people. I do whatever I have to do to avoid getting sick. I get the flu shot every year. I haven’t had the flu in over 10 years. I also wash my hands a lot with just soap and water. You can use antibacterial soap but regular soap works just as well.. In my opinion! During flu season, my best friend are Lysol wipes….especially if my husband is sick. I tackle doorknob, tv remotes and light switches multiple times daily. Like I said, I do whatever I can to stay healthy.

As for getting use to wearing your oxygen in public, it can be a little scary at first. I write a blog all about Living On O2 for Life. People are going to stare because they are curious. Little kids will ask about my oxygen a lot to their parents first and then to me. I ALWAYS take time to talk to people who stop and ask me. There’s usually a family member or a friend who they know who uses oxygen or about to start using oxygen. If I can help them make life just a little bit easier for them, it’s worth a few minutes of talking with them. Don’t you think? I didn’t have anyone to ask back when I started using oxygen when I was 17 years old and still in high school. Of course, there was no internet either!

Life is worth living. So get out there and live it the way you can not by what you can no longer do.

Christine

Doctor appointment & medicine update!

Living On Oxygen for Life

I’ve been keeping myself busy with my fun garden which I’m growing in pots near the back door of my house. I’ve added more herbs and I’ve attempted strawberries but I think only one strawberry plant has survived. My raspberries tastes awesome! I’ve not given up hope yet! The day is so beautiful outside. So, my windows and back door are open until it starts heating up to the point I can no longer stand the heat. I’m sure it won’t be long. After all, I live in Texas. But all that aside, I wanted to tell you that yesterday I went to a new doctor. He’s a cardiac electrophysiologist. I sure hope I got his title right! His title takes up the whole left side of his doctor coat with the MD and PhD added to it.

The big reason I chose to go to this new doctor was because of the current cardiac medicine that I’m taking and have been taking for the past 20+ years. It’s called Cordarone (or amiodarone HCl). This medicine is used specifically for ventricular arrhythmias. It also has a pretty bad side effect of possible Pulmonary Fibrosis. I have been very lucky to not have developed this so far… but my ability to breathe has been getting worse over the years and really, I don’t want to be taking a medicine that could potentially be harming my lungs. That is why I went to see this doctor. I wanted to know if there were any new medications out that I could take for my arrhythmia problem.

Luckily for me, there is a new medicine out and of course, wouldn’t you know it… it’s a “Specialty” drug called Tikosyn. Not only that, to be able to start taking this medicine, I will have to stop taking my Cordarone for two weeks and then be admitted to the hospital for three days. It’s the only way the doctors allow patients to start this medicine. It’s because the patient has to be connected to an EKG to be monitored to determine the correct dose and to make sure the person’s body will tolerate the medication. The patient information packet that I was sent home with to study was geared towards people who are diagnosed with Atrial Fibrillation/Atrial Flutter (AF/AFL). That confused me because I have what I’ve been told is called Ventricular Tachycardia. Once I figured out that Tikosyn is a general purpose Arrhythmias drug, it only made me feel a tiny bit more comfortable with the possibility of this drug. It’s all a little scary to me. I haven’t decided on if I will do it but I’m leaning towards it. K is letting me decide this but I think we are both playing this off as a possible mini-vacation for him. LOL! Don’t get me wrong! He will be worried about me. He’s a great man.

Right now, I’m trying not to think about it other than for this post on my blog. I just thought you’d like to know what’s going on. I’m also still on the new PH medication called Opsumit (macitentan). I am doing a lot better on this go around. I had taken this medicine for the first time only for a week when I must have developed a sinus infection and had to stop the medicine for a whole week. I’m now restarted on Opsumit and am on the 5th day with no serious sinus problems and only a twinge of a bad headache occasionally. I think I will be okay on this stuff. If it helps my aorta artery and my breathing ability, then it will be worth it. Plus, there is the bonus of only needing to get lab work done once every three months now. That rocks!

I’m so looking forward to heading to Oklahoma to see my family. That means if I decide to try Tikosyn, it won’t be until sometime in June, after having all the fun I can have with my family. Besides, I don’t want to be off Cordarone while away from home and away from my doctors. To me, that’s risking a little too much. I’ll play it safe!

Don’t forget to follow my blog so you won’t miss anything! I haven’t forgotten the “Need a Hug” giveaway! I’m making the afghan and it will be finished very soon! I will get a preview picture up soon. Here are the pictures I took of my garden this morning. What do you think?

Herb garden in a pot with: chives, lemon thyme, spearmint, lemon balm & peppermint.

Herb garden in a pot with: chives, lemon thyme, spearmint, lemon balm & peppermint.

Newest herbs in my 5-in-1 dwarf apple tree pot: basil, cilantro, & dill.

Newest herbs in my 5-in-1 dwarf apple tree pot: basil, cilantro, & dill.

Tomato plant and jalapeño plant (can't wait to make salsa!)

Tomato plant and jalapeño plant (can’t wait to make salsa!)

What to do with leftovers…

Living On Oxygen for Life

Every so often I ask my Pulmonologist and Cardiologist if there are any new medications available that can better help my health conditions. Most of the time the answer is no from my Cardiologist. But sometimes, surprisingly, a “Yes,” pops up from my Pulmonary Hypertension doctors. I’ve been taking Tracleer since 2006 and since then, my doctors have discovered that I’ve developed a dilated ascending aorta (an aneurism). I know.. That really bites! So, here I am trying the newest PH medicine on the market thanks to the grant assistance for co-payments of Caring Voice Coalition and the drug manufacturer, Acetlion, which gave me the first month’s supply free. The first week of trying this medicine was rough and I had to stop taking it for a whole week. Now I’m back on Opsumit for the past 3 days. So far I’m doing fine. *knock on wood* Yes, I really did just knock on some wood. *wink*

Trying new medicine can be brutal for me. If it’s a new heart medication, it will generally affect my breathing (worsen my shortness of breath) and the new PH medication reactions range anywhere from all over body pain to headaches, sinus pain, and/or worsening SOB. My lungs are really compromised by my scoliosis. But I keep trying even though I always wonder why I put myself through this brutality. Surely some genius somewhere in the world will figure out the right pharmaceutical recipe for the future wonder drug for us. I’m clinging to the hope as I’m sure the rest of you have that in the back of your minds as well. Until that day comes, though, I keep myself marching forward! Go team Christine!

So, yes, I have tried so many different medications for multiple reasons. Sometimes, I think that I should nail up a shingle on the front of my house that reads: “Pharmacy.” Trying different medications means that you can accumulate various amounts of unused, leftover, medicine in their medicine bottles. You should never dump those leftover medicine down the drain or toilet. There really is a proper way to dispose leftover medicine. Never let anyone use your medication either. That’s dangerous and I believe illegal. I occasionally get information in with my water bill about where you can dispose these medicines. Please don’t contaminate future drinking water with your medicine.

In other news, I tried my first raspberry from the raspberry bush I’m growing. Sooo delicious!! I can’t wait until a bunch of them are ripe enough to pick and munch. Maybe I will pick some of my mint leaves with some raspberries and make a tea with them! I’ve noticed a tomato flower and some jalapeño flower buds growing. I think I’m really getting the hang of this gardening stuff. In fact, I’m going to try to set up a drip irrigation system for my potted garden. This will definitely keep me busy and active this summer.

Be sure to follow my blog so you won’t my a post or catch me on Facebook or Instagram. The links are on the right! Love to you all! *wave*

New PH Medication!

Living On Oxygen for Life

tiny pill

Opsumit

Opsumit is a new medication on the market that treats Pulmonary Hypertension. It’s in the same class of medication of Tracleer that I was told it may have less liver side effects. It also requires only once every 3 month liver lab testing. Awesome! Now, I think I told y’all that I recently went to see my Cardiologist because my PH doctors want him to keep track of my dilated ascending aorta (an aneurism). My cardiologist doesn’t think that I have any medical reason to have this aneurism. I’m wondering if Tracleer is what’s causing it. This is the only reason why I have subjected myself to trying Opsumit.

Based on other posts that I’ve written on my blog, you probably know that my body doesn’t tolerate most cardiac or most PH medicine. So, a week into taking Opsumit, I started getting serious sinus pain and congestion. Ugh! I contacted my PH doctors and they told me to stop taking Opsumit for a week to see if what I’m experiencing is either a Sinus infection (bacterial or viral) or if it is truly the new medicine. I was pretty desperate to have to contact the doctors. Knowing my track record with trying new medicine being unsuccessful, makes me try hard at giving the medicine a gung-ho and a heave-ho spirit of a try before I throw in the white towel…. if you know what I mean. So, yes, I was suffering.

I’ve been off Opsumit for almost 2 days and the sinus pain is gone but the congestion is still there a little bit. I’m still going to go back to Opsumit at the end of the week just to see for sure. It may suck but this is something I have to do for myself. I’ll at least know that I’m trying my best. It’s just so hard.

Anyone else out there trying this medicine? I’d love to know how you are doing.

*hugs* to you all! Be well and take care!

Christine

Little successes…

Living On Oxygen for Life

In February or so, my older sister came to visit us. She brought with her an order form for her daughter’s fundraiser project and being the awesome aunt that I am, I ordered a few things. haha! One of the things I bought is a hanging strawberry planter and today I finally opened the package and planted the little strawberry plants. It was a little more difficult for me to do than I thought it would be. I had to get my portable oxygen on and walk out to the barn (which is really a small shed). I didn’t have enough dirt…errr planting soil in the garage from my last gardening adventure. So, out I went with everything I needed in my hands. I had my oxygen and strawberry planter (careful not to spill what dirt I had already put in the bag) in my hands approaching the barn.

Going in the barn isn’t something that I usually do because my 50ft tubing is only long enough to get the barn doors stretching from my tanks inside to the barn. I don’t have enough slack to actually go inside the barn which is ok with me because I normally don’t do any of the yard work. But, today, I needed in that barn for dirt. With my portable oxygen tank on, I carefully set everything down on the ground because the first time I attempted to open the door, it was stuck. (Yes, we need to replace the barn… It’s so old!) I’m tugging and tugging and lifting and tugging when suddenly the stupid door opens. I was so happy that I got the door open that I walked right into the barn forgetting one important thing. My portable. I walked off forgetting the oxygen (common thing for me) and it tipped over. Ugh! I picked it up and brought it in the barn and set it down on the floor AGAIN. I lifted the dirt and the darn thing is so heavy! Not only did I have to lift and carry it out of the barn, I had to carry my oxygen out of the barn too. I also needed a little scoop thingy. Where are you now McGyver???

I hitched my tank strap on my shoulder and hefted the bag of dirt out of the barn. Then I returned for the scoop after I set the tank somewhere halfway between my work area outside the barn and inside the barn. Now, I’m good to go. I shoveled in little scoops of dirt and I’m on my way to growing strawberries! The bag is filled and I successfully got everything put away, struggling to get that stupid barn door closed. I got the little strawberry plants inside and it’s time to switch back over to my inside oxygen supply. I turned on the 2 liquid oxygen tanks and put away my portable and then walked off towards the kitchen, forgetting that I didn’t even put my oxygen back on. What am I doing!!! Don’t worry… I put my oxygen right on. I have a lot on my mind and I’m really forgetful. I planted the strawberry plants in the little holes provided in the bag-type planter then I took them outside to water them. That part was tricky because it had to be laid flat (for a few days until the strawberries take root according to the directions). Yes, I’m a direction reader… K is not. haha! I’m finally done with my project for the day and I’m really excited because I accomplished something that I thought I would need K’s help with. Three cheers for me!

Being on oxygen makes doing some things a little harder but I try to find other ways (maybe a little stranger ways) to do them so that I can feel good inside… You know… Happy! I don’t know if I’m doing any of this strawberry stuff right but at least it got me out of bed, off the couch and out the door. That’s what matters… being active doing things that make you happy. For the rest of the day I plan to work on my crochet project that I’m doing for a friend and then I have to vacuum the family room because we are having company later today. I’m sure I’ll find other things to do today around the house. The crocheting helps me wind down and rest enough to battle to vacuum cleaner.

I hope everyone is doing well.

Shout out to Michelle: I’m SOOOOO glad that you are doing better now and are out of the hospital. *HUGS*

strawberries