My life for the past 3 months

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 (bluemoonmagnolia@gmail.com) or just leave a comment.

Thanks for listening.

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24 comments on “My life for the past 3 months

  1. Marita says:

    Thanks for sharing. I have no experience with CF, only heard of it. Lots of warm hugs from Marita in Norway.

  2. Bridget says:

    I think a blog is a great idea. It’d be a great outlet to vent, share information, and get additional support (for when you can’t get ahold of me :)). This is such a hard situation for you and richie… i just want to wrap you in virtual bubble wrap and protect you from all the crappy stuff going on :(. You definitely need a smart phone so you can take your blog on the go for those long waits at the hospital. It’d be worth every penny. Though some nooks have internet access you could prob use? Kerp your chin up sweetie, you have lots of people who love you :)

    • Thank you dearie, I am trying to figure out the smart phone thing…but you know how I am with technology, so I may need your help :/ It was so good to see you and finally meet Mallory- it was a rare bright spot and I think it recharged my batteries, which probably helped get me through Saturday. Tell Mallory I said thanks for the snuggles :)

  3. Rinah Benoliel says:

    I stumbled upon your blog last year since I love all things outlander. I have been checking regularly, wondering if everything was ok, since you hadn’t posted in so long. I checked today, was so happy to see a new post, and then so saddened to hear your news. I don’t have any words to help you through this difficult situation, but I just wanted you to know that though I am stranger, I feel so sad for you, and I wish only better health and recovery for your husband. And I wish strength for you, to help you through this ordeal.

    Rinah

  4. Jennifer says:

    I was checking out your blog the other day, thinking “Where is she?”. I loved reading your blogs. Thank you for posting an update. You and your husband have been through so much and from reading your blog it is not over yet. What a blessing for him to finally make the list. You both will be in my prayers as you continue to seek treatment.
    God Bless You Both,
    Jennifer Irons

    • Hi Jennifer, it was a great relief for him to get listed, but unfortunately we found out today that he has been temporarily removed from the list until he can come back from this current decline. Thank you so much for the thoughts and prayers, we truly appreciate it.

  5. Claire says:

    I’m so sorry to hear about your husband. I love your blog and have missed your posts, but I completely understand your need to step away from it right now. You and your husband are in my thoughts and prayers. I wish I had something more helpful to say, I’m not very familiar with CF. I hope the next time you post it’s with good news :)

    Sending good energy and prayers from Tennessee!

    -Claire

  6. Marjo says:

    So sorry to hear, I’m sending your husband loads of healing energy and prayers. And for you too, to be strong. I’ve really enjoyed reading your blog, you’re a very talented and artistic lady and I hope your future with your husband will be happy.

    With best regards and healing energy,

    Marjo

  7. Addie Bratrud says:

    Oh my goodness. I am glad you are reaching out and I think blogging and connecting with other CF patients and loved ones would be helpful. I have been reading your blogs for a year now, and I just want you to know that your words are beautiful and so inspiring. I am sending you hugs and hugs, and know that so many people (virtual strangers or no) care about you and your husband. Lots of love,
    Addie

    • Thank you so much, Addie. I wasn’t sure if I should open up about this aspect of my life, but the supportive comments and e-mails (from people I don’t even know!) have truly been wonderful. I’m in the process of starting the other blog, hope to get it done very soon.

  8. Carolyn Cameron says:

    I have enjoyed your blog so much and I am so sorry that you and your husband are having to go through this illness. I don’t know much about CF, but I do know about being a caregiver. Much love and good thoughts to both of you. Carolyn

  9. I just popped back over to your blog after reading it for a little while last fall (the Jamie pumpkin brought me here!). I was playing on the internet and randomly thought, “Hey, I wonder what the lady who carved that awesome pumpkin is up to this year. She seems so charming and funny and talented…” I’m so, so sorry that you and your husband are going through this difficult time. Obviously I don’t know you at all, but I will send prayers and positive energy your way. And thank you for all of your absolutely lovely posts over the past year or so…they have obviously given lots of moments of pleasurable reading to people all over the world! Take care!!

  10. Hello Jessica, thank you so much for the encouraging words and we truly appreciate the prayers and positive energy. I’m going to pop over to your blog when I get home tonight (and don’t have to deal with pesky social networking restrictions at work…)

  11. daphne says:

    Hello! Thank you for coming by my blog. I am so, so sorry to hear about your husband. My partner is very ill with CFS/ME and although it’s not currently life-threatening, it is so very stressful and sad and scary and all those things. I’m going to catch up on your blog now. Thanks for commenting!!

  12. dreamingmoon says:

    Wow- yes- it is a good synchronistic way of connecting…will be adding you and Rich into my prayers this eve and hope to follow your blog. (Haven’t quite figured that procedure out yet.

    .

  13. Paige Turner says:

    Hello for the last time today. I’m so afraid that I appear some sort of cyber stalker for commenting on your site more than once today. But I just “discovered” your story and became intrigued. Just read this entry about your husband’s surgery. I do hope all is well.

    I work in a children’s hospital and we care for many CF patients. I know only a little of what you’re going through right now. Sounds as if your husband is a trooper and you are his loving cheer leader and nurse. Sending you the very strongest prayers, thoughts, and vibes. Consider me an unknown friend, please.

    • My husband has such wonderful and fond memories of his time in the children’s hospitlal (he still remembers the names of all his favorite nurses and is actually still in contact with one of them!), so I’m sure you are making a huge impact in the lives of your patients. I’m constantly blown away by the positivity and resilience demostrated by those living with CF. Richie truly is a trooper and I think most people refer to me as his fierce protector ;) Thank you so much for the thoughts and prayers, he is doing great so far and I pray that he continues on this path!

    • Oh, and you don’t appear as a cyber stalker ;) I love getting comments!

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