An Update

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It’s been a little over two months since my hospital stay in February and there are a couple of things I know for sure:

  1. Needing to buy a plunger is one of the more awkward experiences in life.
  2. You will always run into someone from church when buying condoms.
  3. Change is hard. Especially when you’re as stubborn as I am.

Just so you’re up to date on all that’s happened, after months of building and tapering off medications with the hope of improvement, I went home for the holidays and my condition worsened. I was admitted unexpectedly to the hospital after a routine check-up with my UCSF pulmonologist. Within the span of three days, I was given two completely different diagnoses from the lung transplant team. First, the doctors were convinced my lung disease had progressed and I would need to be listed for the double-lung transplant.

THEN, after observing all the data and seeing how I was doing in the hospital and responding to medication, the team had a much more optimistic view. While they were still pretty convinced I had Chronic Hypersensitivity Pneumonitis (aggravated by my Christmas trip to Utah), they were also hopeful that I wouldn’t need a lung transplant for a while (maybe I’ll never need one). Talk about a 180 degree turn.

There was a catch, of course:

  1. I could never go back to Utah, not even to visit (at least in my current condition). Seriously.
  2. I’m back on a combo of Prednisone and Cellcept (until I hopefully don’t need them anymore)
  3. I need to eat insanely healthy
  4. I need to vigorously exercise every day

Overall, this hospital stay was a very positive experience in regards to “information gathering.” The fact that I wouldn’t need the transplant…at least yet…was a HUGE sigh of relief. Bottom line: prayers were answered (with a mixed bag)! They still don’t know how much of my lung scarring is permanent and how much can be reversed. But if everything goes as planned, there’s a chance I could heal from this and get off all meds and oxygen in a few years.

After my hospital stay, the Doctors told me I couldn’t gain anymore weight (I had gained 30 lbs in 3 months on Prednisone last time). They not only said it would be really hard not to gain weight but that I’d need to try to lose weight. (They need me in tip-top shape to give this process the best shot I’ve got and if I end up needing a transplant down the road, my body will be in optimum health). As a result, I’ve been trying to eat as anti-inflammatory as possible. So basically I’ve been eating like a homeless Bear Grylls: fruits, vegetables, chicken and fish. I’ve joined a community center, grown a dependence on grapes and driven my husband completely mad. Not bad for a girl on oxygen 24/7. Henry’s been more than patient considering every meal we have revolves around what I can and can’t eat. Not to mention breakfast, lunch and dinner typically involves some form of gentle mourning and gnashing of teeth.

Making these changes has not been easy. What started out looking a lot like an episode of Naked and Afraid – lots of crying, trembling and hungry rage – has grown easier! I’ve found I feel so much better, my heartburn has stopped and I even look forward to my daily workouts (for the most part). And for a really indecisive person like me, it makes picking what to eat when we go out really easy. I’ve lost a total of 15 pounds since I started, something I didn’t think was possible on Prednisone (which makes me hungrier than the backstage crowd at a Victoria’s Secret Fashion Show).

Amidst my own personal melodrama, Henry has been in the thralls of job-searching-awesome-sauce. His Utah job has been kind enough to allow him to work here in California remotely while we waited for a transplant, but since we can no longer return to Utah per doctor’s request, he has to find work out here come June.  It’s like that scene in U571 when their boat gets bombed and they have to figure out how to make it home on the German boat? Well, California is the German boat. How Henry manages to have time to apply for and interview at a million jobs, work full-time, go back to school (oh yeah, Henry’s studying software engineering at UC Berkeley), wipe the drool off my straight-from-a-Jamanji-boardgame-face and still take care of himself, I’ll never know.

As it is in life, anything worthwhile takes work and time and patience and faith. I can’t speak for Henry, but I find myself wanting what I want NOW. I say to myself, “I’m doing everything I’m supposed to do, so where’s my reward?” We’re slowly learning that progress can be slow and it can also be so easy to give up, whether it’s looking for the right job to support a family, or trying to make better lifestyle changes.  But I have to remind myself that my life and the time I get to spend with those that I love depend on my determination to play by the rules. And sometimes, there’s wisdom in the waiting.

PS: I have a check-up appointment next week to see if I’ve improved…so I’ll let you know how it goes. And this time I’m packing a hospital bag, just in case.

7 Responses
  • Katie
    April 21, 2017

    I’d love to hear what you eat on a day to day basis! I have some medical conditions and I need to eat better as well. But I have a hard time figuring out what to eat. I get overwhelmed and then I get hungry and just grab something.

  • Stephanie
    April 21, 2017

    I can’t imagine what you’re going through. The waiting is so hard. The only thing I can relate to a bit is drug induced weight gain. My current meds (that I have to take for 10 years) causes weight gain, but my doc says the best thing to help prevent recurrence is keeping my weight down. Grrr. I gained 30+ pounds in a fairly short amount of time on my medicine, but after persistent efforts to eat better and exercise I’ve lost 15 pounds, with my meds working against me. It can be done. It’s not easy, but it can be done. I know I still have work to do to get back in to a healthy weight, but I feel hopefully. You can do it too, just keep on going one meal, one day at a time.

  • Joni
    April 21, 2017

    You have no idea how much you inspire me as i strive to be a better person. I love you Kenz!

  • Cindy Smith
    April 21, 2017

    Have you tried whole30? Its is amazing!! Wonderful support group and Kipp( your mom’s cousin)is doing amazing fighting cancer on it. Check it out if you havent yet… so much food to eat and an anti inflammatory diet as well. Prayers for you guys!!

  • Tiffani
    April 21, 2017

    I’m proud of your dedication and optimism. Henry is talented, likeable, and intelligent. I’m sure he’ll land the right job since you guys have such incredible faith and determination. Next time Will has a business trip to SF, I am tagging along to see you!

  • Net
    May 7, 2017

    How do you exercise vigorously with an oxygen tank and unhealthy lungs?

    PS I am SO inspired by your and Henry’s love story!

  • Aimee Lecointre
    June 1, 2017

    I recently came across your blog via IG. To be honest, I can’t remember how I came across your profile, but…I did. I hope things continue to improve for you.

    I agree with your docs, Utah is no place for anyone with any sort of lung disease. I was born and raised here then left 11 years when I married a Marine. We just moved back last year, and oh my! I knew the air here was horrendous, and I figured between that, the dry air, and higher elevation my health would face some challenges. But it’s been worse that I thought it would be. All our family is here, but we won’t be staying long because my lungs just can’t handle it!

    Wishing you the best!

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