Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you.