Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.
I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):
My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.
After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.
You know I love writing on my blog about living on oxygen and all that it entails but when an opportunity comes along where I share more of what I know to the world, of course I’d jump at it. I was approached by another blogger, Johan, who writes an incredibly wonderful blog. It’s not about his life. He took blogging to a whole other level. Have you ever been curious about things? Johan interviews people who have incredible stories to tell about all sorts of subjects. Sad stories, adventure, war, inspirational people, space travel… just a lot of interesting interview articles.
When I first visited Read an Interview and started reading the interviews, I thought…these are good! They are something that easily could be in a magazine. So, Johan, emailed me a list of questions pertaining to living with Pulmonary Hypertension and the equipment that I use to survive this incurable disease. I dug deep with this one. It’s the first time I’ve ever done an interview and I hope you like it. If you would like to read it, you can find it here: Living with Pulmonary Hypertension.
There are different reasons for needing to use a bipap machine. By now, if you have this machine, you know that a bipap is really different than a CPap machine. A CPap machine provides a constant, continuous positive pressure of air through your mask. It’s main use is for what is called Sleep Apnea. Sleep apnea can cause snoring. The continuous positive pressure of air the flows through the hose, tube and into your lungs keeps a your lungs open while you sleep. From experience during a sleep study, I could not tolerate a CPap but many people do well with them.
For this reason my doctor tested me on a Bipap. The pressure from the CPap was too much for me lungs. Bipaps and CPaps can be difficult to used to. I’m not going to lie to you. I had to change the way I breathed when I attempted to fall asleep. At first, I would have panic attacks because I would be so tired from trying to get myself adjusted to the machine that I couldn’t fall asleep. I ended up having my doctor put me on Xanax. It helped. Word to the wise, Xanax is only to be used temporarily. After some time, I found what worked for me. I started by staying up late to the point where I was really sleepy. Then I tried reading in bed until I became sleepy. Reading really helped because it distracted me from keeping my breathing synchronized with the Bipap’s pre-set of “breathing.”
Bipap’s are meant to function to continually breathe for you if in fact you stop breathing. That’s one of the main functions of a bipap. Think of a fail-safe or a backup to your own breathing.
This machine is considered a Durable Medical Equipment and you must have a Sleep Study ordered by your pulmonologist to qualify to receive one and for your insurance to pay for or rent one for you. A sleep study is an outpatient procedure where you sleep in either a clinic or a hospital sleep department. The techs will attach electrodes and wires and the mask attached to the Bipap or Cpap. You also get a nifty wire that reads your CO2 and another thing called a pulse oximeter taped on your finger. Oh! They expect you to be able to sleep with all these electrodes wired to your head. Does anyone ever sleep during one of these?? haha!
You may not start off wearing the Bipap or oxygen for the test. Try not to panic. They need a base-line of your breathing ability, oxygen saturation and other important data. Don’t try to change the tech’s mind about what you want because they are following the doctor’s orders. They will also attach a nifty wire that reads your CO2 and another thing called a pulse oximeter taped on your finger. Oh! They expect you to be able to sleep with all these electrodes wired to your head. Does anyone ever sleep during one of these?? haha! It will be a few days if not more before you hear the results. There is a lot a data to read from the sleep study.
Well, I took a nap and ended up sleeping until 10:30pm. I was very tired…obviously. The humidity here in my area of Texas has been hovering around 70% and it’s kicking my rear end. I can’t be outside for very long before my energy is sapped and I have to head back inside. But, I like sitting outside with K on a patio chair in the evening to talk with him while our pup sits at K’s feet. Yeah, that’s right. His feet. Darn that Rocco! My dog has turned traitor. haha!
One of the things I want to mention to you is that I started a section on my blog, the HOPE section, for those of us who have breathing problems and have a creative talent to design products to sell to further the awareness of their diagnosis. I hope you remember Ruthie from Josephine’s Jewelry. I had a giveaway of her HOPE necklace that she creates. She is on my Hope Page. I also want to give a shout out to another PH’er who creates bracelets to sell. She does this to raise awareness for Pulmonary Hypertension as well. I can’t wait to receive my bracelet that I just ordered Kayla! Her webstore is called Phantastic Jewelry.
When I know a person is truly trying to spread the word about needing awareness of their diagnosis, I try to help and this is what I can do. Posting a link to their blog or webstore is all part of staying connected and building a community of lung and heart patients. So, click on the HOPE tab at the top of the page and check out these two websites. Let’s stay connected! If you have a hobby that you want to use to further awareness of your diagnosis, email me at firstname.lastname@example.org
In other news, my mother-in-law is coming over tomorrow…or should I say today? Since I slept so long during my nap, I’m not going to be waking up early. That’s for sure. So, tomorrow may be rough. =oP I had only one day notice. K conveniently forgot to tell me that his mom was coming over to help him with a project. I was scrambling as best as I could to “tidy up” for her arrival. Can you ever tidy up enough for a mother-in-law? haha! We shall see! We actually get along really well now. Though, in the beginning it was a little rough. She was afraid for K with my health concerns. (Which is totally understandable!) K’s mom didn’t approve of us dating and certainly wasn’t too keen on us getting married but after a few years.. well, ok maybe a few more than a “few” years, she mellowed. We’ve really grown close and she now asks about my health and doctor appointments and how they went. It makes me feel very much part of the family now. Since all of my family is in another state, I know I have K’s family if I need them quickly.
Don’t forget that June 30th is the last day for the Need a Hug giveaway. I will draw the winner on July 1st!