Yes, it’s me! I’m still here kicking the can down the road. I’m still alive. Hooray! Go me! This month has been filled with a lot of doctor appointments. K drives me everywhere now. So much has changed for us because of my health. K carries a heavy load of responsibility to care for the both of us and he does A GREAT JOB!
Years ago we discovered that my ascending aorta was slightly dilated. It’s been a “wait and watch” sort of medical issue. That was back in 2010, give or take a few years. Now, it’s gotten to the point where I had to see a specialist cardiologist who deals with surgical interventions of Aorta Aneurysms. We knew what the doctor was going to say before we even went to the appointment. However, knowing what the doctor will say and actually “hearing” it, puts the fact of knowing that I’m not a surgical candidate and there’s nothing they can do for the aneurysm, has a finality to it. But you know what? I’ve heard that before about a lot of my health issues. No big deal. I can deal with this. Sure, my heart skips a lot and I have an aneurysm… that kinda sound bad, right?… my primary cardiologist feels that my cardiac problems are NOT life-threatening. A big WHEW! I’ll take that answer.
I’ve slowed way down and that’s ok! I can still make dinner and clean the kitchen most nights. So, *thumbs UP* I’m up to 8LPM of oxygen 24/7 and still use my Bipap when I sleep or if I need to power up during the daytime. In fact, I’ll be going to my pulmonologist next and then to a “special” pulmonologist after that. K and I are going to see if I would benefit more using a Trilogy machine instead of just the basic Bipap. (NOTE: if you own one of these machines, there has been a recall for certain ones. Find out more here.) A Trilogy machine is basically one step under a ventilator but one step above a Bipap machine.
Our long vacations are over. I just use too much oxygen and my health is too precarious to risk a long vacation. Our vacations were usually about 10 days which also allowed me time to rest when we got where we were going. It is just too much for me now. However!!!! K surprised me the other day and told me he was secretly arranging a trip up to see my family! I’m so excited! It’s a 3 hour drive and I’m pretty sure I can handle that. We’ll be taking my pups with us.
Unfortunately, I won’t be able to get my 2nd covid booster shot before we go. I’m a little nervous about that but my family have all received their shots. So, I’ll be as safe as I can be while there.
It’s getting really stinkin’ hot here. I think we totally bypassed Spring and jumped right into Summer. We’ve already hit 99 degrees. So, let’s stay safe out there. Carry water with you if you have to go outside. Be well! =o)
Living On O2 for Life 
Hi there Ms. Christine, this is Ronald Corbin. It was great that you felt up to writing and sharing! I will pass this update along to my prayer group( they ask about you!). It looks like I can put my shawl away for now since it is soooo hot. I hope you get to go see your family soon. You both are in my prayers!
I’m getting excited about the roadtrip. Just waiting on the final word from my sister about the loaner oxygen concentrator. *fingers crossed* 😁🙏
Hi Christine! It is so nice hearing from you. So glad you are staying well and doing what you can. I’m so happy you will get to see your family soon. Hope all goes great so it can happen. I’m also on oxygen 24/7 and know what a struggle it can be daily. I’m on 4-5 liters depending on what on doing but I sleep with 5 liters. All we can do is take it each day at a time and enjoy life each day. I did want to mention that I also switched from a bipap to the Trilogy Ventilator to sleep 3 years ago. What a huge difference it made. I sleep so well! I wouldn’t think it would make such a difference but it has. My pulmonary doctor is so glad we switched. I feel so rested with it. I also bleed my o2 on it. Hope all your appointments go great! Take care and stay cool this summer! 😉
I’m really interested in knowing how much it has helped you compared to when you used your Bipap. I may have to use a trilogy in the daytime as well if I can’t improve my sleeping. I have bouts of insomnia at times. *hugs* I’m really glad the trilogy has worked wonders for you. There’s not much worse than waking up in the morning feeling like you haven’t gotten enough sleep. Then realizing that you’ve slept for nearly 10 hours. =o) I’ll be going to THAT doctor with lots of questions!
Hi there! Yes, not having a good night sleep definitely makes it for a hard day. I definitely need about 8-9 hours to feel good for the day. The Trilogy has more ability to control different pressures we need. They are able to get you more precise pressures thar will enable you to get a deeper breath when sleeping. It took a little while to get used to because it felt stronger when breathing in and out. But you do get use to it and after you should be able to sleep very soundly. We found that it has helped kept my carbon dioxide levels lower with the Trilogy. We are so glad to be able to use it. Hope this helps and hood luck with your appts. Take care 😉
My appointment went really well! Thank you so much for your information Vilma!
Hi Christine! I hope all is going great! Yes, getting a good night sleep is so important. Since I have been using the Trilogy, my sleep has greatly improved. The Trilogy has so many different pressures and is able to give you a deeper pressure to help with your breathing when sleeping. They are able to get more precise with what your breathing needs while sleeping so your can actually get a good night’s rest. It took awhile to get used to it because the pressures felt stronger than the bipap. But it was so worth it. I hope this helps a bit. Have fun vacationing with your family. Take care and be safe. 😉
My mini-vacation was GREAT! 😉 Thank you so much. Sorry for the long delay in my reply. *hugs*
If I may say, I am very proud of you. You are a strong woman. Yes, you are a warrior. Keep up your positive attitude and enjoy every day to the best of your abilities. Enjoy your trip to see family and keep that sweet husband of yours by your side. You are a great role model. Thank you for keeping up this blog and including us.
You are a sweet, sweet person. Thank you so much! You know I’m hanging onto my husband. He’s a good guy!! 😉 *hugs*
So glad you are hanging in there. Glad your heart is not as much of an issue as it might have been. I have been dealing with racing heartbeat and a high heart rate I will see a specialist soon. I had Covid in November, was in the hospital for just over a month. I was healing and almost back to my Lupus normal, when I came down with Pneumonia. That was a 7 day stay in the hospital. (My o2 dropped to 45 and I could not get it higher.) ( I have Asthma, COPD, Bronchiectasis, and Pulmonary Fibrosis.) I am learning to walk, regaining my strength. And I have been homebound as well. I am so happy for you that you have a trip to look forward to! Enjoy! Thanks for the info on the machine. I may have to go on a CPAP at night soon. Safe travels, and God Bless you both!
I’m so sorry you’re going through so much. I really like the bipap over the CPAP machine. If you do need one, it will help! I hope your strength returns quickly and that you stay out of the hospital. *hugs* ❤️ I got my oxygen arranged for my trip. Just need to pack all my stuff and the dos stuff and I’ll be ready!
Thank you Christine. Just wanted to let you know, I can relate to your situation. I visited some of your previous posts. Not sure how many I commented on, but I enjoyed the information you share. I have contemplated writing on my blog about my Lupus journey, for years. I still haven’t started. But you inspire me to do so.
God Bless you both! Sheila
Sheila I think if you do start a lupus journey blog it would be great. Lupus is a disease that’s difficult to diagnose from what I’ve heard. I think many people could benefit from your story. *hugs* Let me know if you decide to start blogging.