Ah, it feels good to be back in my cozy little corner of the interwebs, even if it’s only for a fleeting moment. I don’t know if I have any blog followers left after 3 months of MIA, but for those that have hung around, I feel like I should let you know what’s going on in my life right now.
My husband has Cystic Fibrosis. Looking back on my posts of 2011, there are a lot of little comments about how things weren’t going so well for us or that my hubs was sick a lot, and yet somehow his declining health managed to sneak up on both of us. CF patients have to undergo regular IV antibiotic treatments (for Richie this meant usually 1-2 per year) as a sort of “tune-up,” but starting in February of this year, he was needing IV treatments on an almost monthly basis. He was very ill in May and we were concerned that he wouldn’t be well enough to travel to Costa Rica, but he managed to get healthy for 2 weeks (long enough for travel) and that was probably the only time he’s actually been healthy in the past 8 months.
Things took a turn for the worst in August when he was hospitalized and diagnosed with “end stage Cystic Fibrosis” at the age of 30. Basically this means that he only has one option of treatment left, which is a double lung transplant. After he was released from the hospital, he went through a gruelling 2 week evaluation process to determine if he was eligible to be listed for new lungs. He managed to survive the bombardment of stressful and invasive tests to learn that he then had to have his wisdom teeth removed before being listed. We then went through that surgery (and the subsequent challenges) to learn of even more obstacles that would prohibit him from being listed.
Long story short, he was officially listed last Monday, but his kidney function started to decline on Wednesday and he is now back in the hospital. No word yet on whether or not this will impact his status on the waiting list. Needless to say, things have been crazy, hectic, frustrating, stressful, SAD, and generally overwhelming, especially since I am still working full-time in addition to my role as his primary caretaker.
I am tossing around the idea of starting a blog about his experiences. It would be both a way to keep family and friends updated as well as a resource or connection for those who may be in a similar situation. (There is a thriving community of CF bloggers that we discovered after getting the transplant diagnosis. We learned so much that the doctors didn’t tell us and I also like the idea of being able to help others in the future.) On the other hand, I obviously haven’t had time (or the mental capacity) to maintain this blog, so I find the prospect of a second one somewhat daunting. I don’t have a smart phone, so blogging on the go is not really an option right now. I will let you know if it pans out.
I am not abandoning Blue Moon Magnolia, I love it dearly and hope to find some time in the very near future to post again. I planned to come back at the start of the month and revive my “Month of the Pumpkin Challenge,” since Richie and I started it together last year and took great pleasure in it, but alas, life has not been so generous as to allow me the time.
Blogging has taught me that the internet has a remarkable way of bringing together people with seemingly random interests or rare shared experiences. If by cosmic coincidence, any of you have CF, have a loved one with CF, or have had experience with double lung transplants, I would love to hear any advice or words of wisdom. If you feel like sharing, please send me an e-mail (firstname.lastname@example.org) or just leave a comment.
Thanks for listening.