I know it’s not their fault. They have held up as well as they can after being put through too much when they were just little gals. I’m not really mad at them. It’s always been easier for me to dish out sarcasm and give people shit for fun, it’s what I do. If you really know me, you know it’s all in fun and that underneath the jokes I’m really very sensitive and not at all that tough. So I poke at myself as well, calling my lungs names in hopes they will be feisty back and show me they can continue on!
That being said, I had my appointment at the University of WA last week. They have a pulmonary hypertension specialty clinic and I saw Dr. Leary. Let me just tell you how much I LOVED Dr. Leary! He was amazing! He took the time to study my records before seeing me! He did not rush me and answered all my questions and had some recommendations/ideas of his own. First, he feels that I may not have Pulmonary Arterial Hypertension. He feels I may have Pulmonary Hypertension caused by my poor lungs, being chronically low on oxygen and potential sleep disordered breathing. This is good news because PAH is a progressive disease without a cure. Whereas, PH with another cause can be treated more easily. Here is a link to the differences in the two:
Dr. Leary also was able to explain how my chronic low iron levels could play into this as well as the reasons I may be waking up with headaches every morning! He wants me to have a sleep study within the next month or so and go back to see him in April. He did say that he would still recommend a lung transplant for me and that I should get on a list as soon as possible. I cannot get my hopes up too much about transplant though. UW already turned me down. University of Utah and Standford have yet to get back to me.
My lungs will never recover and these assholes will need to be replaced! The thought of a kicking them out frightens me! However, I am willing to part with them if that means I will meet new friends who will be a breath of fresh air! (hahaha…..get it…see what I did there?) For now, I will hold out for some new 3D printed lungs! Wouldn’t that be cool!
PHightforyourrighttoparty 
My morning headaches problem went away with the use of a Bipap that I sleep with using oxygen bled in. Have you been scheduled for a sleep study? Don’t be nervous about it. I’ve been using a Bipap for well over 20 years.
Christine
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Yep my study is scheduled for next month. I’ll be happy to not have these headaches anymore!
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Hi Drea-I’m an old friend of Sandi’s, and as you know, she is sharing your journey with us! My heart & prayers are with you and your family! I have two forms of sleep apnea (discovered the additional form that doesn’t tell my brain to breathe when I stop, so I sleep with a Bi-pap machine. As cumbersome as it can be, with the mask covering my nose & mouth-I’m thankful for this machine as it is saving my heart and my life! You sound like a tough lady, even if you don’t think you are, and you’ve proved that with how long you have battled this disease, and my prayers will include that you be able to be on a list for a lung transplant!! Keep on keeping on-I really admire your spunk!!
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