Lung Story Short

by

Brad & Rachel Photography

I don’t know what possessed me to think I was cool enough to shop at Urban Outfitters. My family was in town and we, of course, hit the bay area shopping malls. I had my sister with me, so I was feeling especially bold. Also, I think the tubes on my face gave me a false sense of confidence in my bodily old age.

We hit the sales section which I naively thought was occupied solely by my sister and me. I then proceeded to, how can I say this politely, let one rip. I was so proud of myself, “Kiki, did you hear that?! Haha! Aren’t I amazing?! GUFFAW GUFFAW!” She then looked at me in terror as she pointed out the Gwen Stefani look alike, hanging clothes up in the corner. I ran as fast as my loose little cheeks could take me.

I should have left then and there, but no, I headed to the crushed velvet turtleneck dress section. I was pointing out to my sister how I hate the styles these days and how dresses aren’t long enough and all the ways in which clothing could be better..blah blah blah…at the top of my lungs. Welp…not my sister. Nope. Not even close. I was going off on some unsuspecting shopper (who I thought was my sister) as she, in horror, tried to quietly sneak away.

Bottom line, I’m too cool for Urban Outfitters. The End.

Medical talk: I’ve been to the doctor’s twice since I last posted, once in April after three months of a strict diet/exercise regime and again in June for a PFT update. In April, my doctor was happy to report that my lungs had the best numbers they’d since since I started attending UCSF for treatment. All my PFT numbers had improved except for the diffusion numbers which have managed to stay fairly the same. Diffusion refers to a gas exchange (and I’m not talking about the Urban Outfitters sales section kind). This gas exchange is in reference to my lungs ability to oxygenate the blood cells in the lungs. Because my lungs aren’t very good at this due to the disease, my reliance on oxygen to function is, well…what it is.

My lung capacity is still at about 30%. But progress is progress. I went in again in June and my PFT’s reported the same thing: an upward climb in lung improvement. I will continue to be monitored until I either plateau or decline again. Their hope is that I will not need a lung transplant and that I will continue to improve with a reversal of lung damage. Hopefully someday I will be off all meds and oxygen. It sometimes feels like that day will never come, but if there’s anything I’m learning by the truck loads through all of this, it’s patience.

Call me Bane, “Now is not the time for fear. That comes later.” I fly in style.

I gently brought up to my doctor the dismay I felt about my limitations visiting Utah. “So…can I never, ever visit Utah? Like, seriously??? Not even the entire state? All our family is there!” He chose his words carefully, “Well…family is family and I understand you need to be able to see them. You’re ok to visit, just be smart about it. Wear a mask when necessary. Don’t visit in the Winter months and…you can’t go in your mother’s house.” “Oh!…ok. We’ll take it!” Because my health declined so drastically when Henry and I visited over the holidays, they wanted to make sure that I didn’t lose any positive momentum by returning to Utah and picking up again whatever made me sick in the first place. Utah is no place for people with bad lungs. Bad air + elevation = one sick sista.

The whole fam damily

We pushed our luck. Henry and I just went to Utah over 4th of July weekend to send off my youngest brother Carter on his church mission to Japan. For those of you who don’t know, these missionaries (18/19 year olds) dedicate two years of their life to teaching the gospel in various locations around the world. Our only communication with Carter for the next two years will be through letters. I’m so glad Henry and I were able to be there to send him off and basically hug him till his head popped off. We’re both dehydrated from the loss of tears and sweat (it was so HOT in Utah! We’re spoiled living in the Bay) but it was such a wonderful weekend! It’s moments like that that make you appreciate and love your family all the more – glimpses of heaven, for sure.

Speaking of glimpses of heaven, we went to Stadium of Fire for the first time. I don’t know what it is, but I always cry when I hear the National Anthem or see anything remotely patriotic. To see people honored who were so brave in the face of such great adversity touches my heart, every time. If that wasn’t enough emotional trauma, I thought Henry was going to pass out from screaming and wonder during the Fireworks show. We had friends who spotted us in the crowd because we were the ones, “dancing and laughing like crazy people.” Ahhh…l’amour.

I don’t know who sang “God Bless America” better that night, Henry or Michael Bolton.

In regards to America, I’ve gained back the 15 pounds I lost those first three months I devoted to being good. I think after getting good news at my first doctor visit, I relaxed. We’ve had friends and family visiting and girls trips and vacations that it’s been so hard to stay strict to my diet and exercise regime. Why does food have to be such a social thing and taste so good! When I rule the world, cake will help you lose weight. Okay?! These past few months have just been a complete wash. And I’ve felt miserable. I really do feel so much better when I’m eating better and exercising! Here’s to starting over…again and again and again. If there’s anything that could help me fight this thing…I’m allll ears. Apps, or programs (traditional / holistic) or advice…please let me know! I need all the help I can get.

I started an Instagram account to sell my clothes (the ones that don’t fit anymore). It’s called @stitchhunt. It’s been a fun little project to keep me busy. I’m sad to part from all my clothes but I’m glad they’re finding good homes. And hey…it’s good for the environment! Shopping secondhand helps the world in some small way. It feels good to live consciously, recycling and reusing items. I love thrift shopping and garage selling. I’m all about finding a good deal.

Henry got a job! Huzzah! Christmas miracles! It’s funny because I don’t know whether to be excited about his job or depressed that I won’t get to hang out with him all day every day. Today was his first day and I literally stayed in bed all day. Granted it’s been a crazy couple of weeks and I probably needed the rest, but I think I was having a Monday morning mourning. I’m so grateful for all he does to support our little family and I know I’m being selfish, but sometimes I don’t feel like adulting and I want to just hang with my bud all day. #attachmentissues I told both of our mothers respectively that if Henry and I ever die together that I want to be put in the same casket as him, spooning. I’d be the big spoon, of course.

Oh, by the way, I turned 30. Yep. The big 3-0.

Brad & Rachel Photography

As we were getting ready for bed last night, I told Henry how sometimes I forget that I’m sick. With these recent improvements and “good news” doctor visits, it’s starting to feel like we’re just living life instead of a weird, limbo-survival-mode life (ok…it still feels like that, but not all the time). “Remember when it was really scary?” I asked him. We went on to hash through the events at the beginning of my diagnosis when we didn’t know how long I would get to live. It’s something you wouldn’t wish on anyone, and yet it has brought so much perspective.

This is our life now: a life of medcine and oxygen tubes and planning our life around good air and elevations. Sure, I miss feeling “free”and I miss not being followed around by a 50 ft plastic cord. But I know this disease is blessing us in ways seen and unseen. My favorite thing about this disease has been being married to Henry through it all. We don’t do this marriage thing perfectly, but we sure do love each other. And he looks good in everything from Urban Outfitters. At least one of us is cool.

Brad & Rachel Photography

5 Responses
  • jennimad
    July 11, 2017

    I loved having you in Utah… even though my house was off limits!!

  • Ashley
    July 12, 2017

    Mackenzie you will always be cool! I giggled through this whole post.

  • SLMorgan
    July 12, 2017

    I was so excited to hear you were heading to UT to send Carter off! So grateful Henry got a job and ecstatic about your health improvements! I love smiling and chuckling as I read your posts! Good ole weight watchers has always worked for me… I’m doing online and I’ve lost 25 lbs. (also exercising). It just makes me assess what I eat and if it’s worth the splurge – splurges are worth it I just plan accordingly! We always have you and Henry in our prayers! I talk to your mom so I keep updated but sure do love when you post! ❤️ Sherry

  • Stacy Knecht
    July 12, 2017

    About the weight loss thing, check out my IG account @stacy.building.health and DM if you’re ever interested. My dad’s stroke was a huge wake up call and I’ve lost 30 pounds since March. Huge blessing! PS. I love your posts and pictures.

  • Lina Lea
    July 12, 2017

    I love your blogs. Read every one you and Henry write. You lift my spirit and I love your positiveness.

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