Oh Say Can UCSF

by

Mackenzie Madsen - UCSF

As I’m writing this post, I’m hooked up to a machine by five sticky cylinders patched to my chest that monitor the saturation of oxygen in my blood as well as my heart rate.  An IV is inserted to the left side of my wrist; the tranquil sound of water bubbles from my oxygen cannula pumps 6 liters through my nose.

Katie, my nurse for the evening, just came in for her rounds taking my temperature, blood pressure, and flushing my IV with saline. There’s this shot that I have to get every 8 hours. She sticks my belly fat which I hunch over and exaggerate with pride. It stings like an Amazonian bee (that’s a thing, right?). She says it’s to help prevent blood clots while in the hospital (I’d almost rather get the blood clot).

Henry’s on the couch, watching a tennis match on his iPhone, the only “me” time he manages for himself in-between giving me sponge baths and pep talks and wiping my tears and…other things. All considered, I’d say that, after less than a week in San Francisco, I’m already working the 10th floor of the UCSF Medical Center like a boss!

Mackenzie Madesn - UCSF

We arrived on Tuesday after splitting up the drive from Utah to California into two days. We spent a day settling in to our new home with the kindest people on the planet who have become our adoptive parents (they wish to remain anonymous). Thursday was my day of appointments where I met with the lung transplant team that I had been introduced to in April. I updated my Pulmonary Function Tests (PFT’s), had a blood gas draw (for the third time…ouch!!!), did a 6 minute walk test and had another CT scan of my chest.

PFT’s are not my favorite. They’re used to measure your lung volume and airflow by inhaling and exhaling forcefully into a mouthpiece called a Spirometer. Sounds easy enough, but heavy breathing and my lungs don’t mix so well (I know, cue the worlds smallest violin).

And the blood gas…don’t even get me started. A nurse draws blood directly from the artery in your wrist – a wrist root canal, if you will. Yowza! There’s this seasoned Asian woman here at UCSF with a salt and pepper mullet and an unmistakable “I love bacon” lanyard who performed my last one. “Wow, you’re amazing at that!” I said. Her reply, with a head bow and a smirk, “…33 years.” “Bacon” went on to tell me how it’s encouraging to see me with so much support. She said sometimes you go through years of sickness and spouses stick around, but sometimes, “it’s just too hard and husbands leave.” …how lovely. Obviously her blood gas and social work skills are on two different ends of the spectrum.

Mackenzie Madsen - UCSF

Results: my lung function has gone down…way down.

The next day, Henry and I were making plans for the 4th of July weekend. By making plans, I mean, we had breakfast and were sitting pant-less in bed discussing Serena Williams Wimbledon outfit. We got a call from our favorite messenger, Kerry, our transplant coordinator. The team wanted me to come in to the hospital for the weekend. Because my lung functionality has declined so drastically in just a few short months, they wanted to see if they couldn’t get me feeling better over the next few days. They’d also have me meet with more of the hospital’s pulmonary and lung transplant team to try to get to the bottom of the mystery of my lung disease.

I checked into the hospital Friday afternoon. Over the course of the last 48 hours, I have met with nearly 20 different medical personnel. IS-THIS-REAL-LIFE? My doctor’s spoke with us this morning and Plot twist: They don’t think I have PVOD. They think I might have something else. Wha??? This has been a suspicion with my doctors at the U as well because all the symptoms of my disease don’t fit into one perfect box. Fun Fact: Typically with PVOD, lung function doesn’t decrease as much as mine has over this short amount time. Apparently.

Mackenzie Madsen - UCSF

In spite of it all, I feel so safe. I feel so much peace. My nurse  pointed out to me that this hospital is the #1 Lung transplant center in the US and that my doctors are a, “pretty big freaking deal!” These guys are the real slim shady. I can’t help but feel a sense of pride, that I’m finally here in a dimly lit 12X9 room on a Saturday night, watching Mariska Hargitay fight crime for special victims, Henry in three-day-old sweatpants, both of us anxious to see what the next test and the next test and the next test will reveal.

2 Responses
  • Sydne Davies
    July 7, 2016

    Love you before, love you now, love you forever!
    Thinking of you,
    Aunt Sydne

  • Lawrence Hyde
    July 12, 2016

    Been there, done that. I am a Latter Day Saint living in El Dorado County, CA. Four months ago today I had a double lung transplant at UCSF, different diagnosis, same treatment. So you are now plowing the same ground I did very recently. No doubt you are seeing the same doctors I saw and still see in post-transplant clinics. I really know my way around that hospital. So if you are interested in getting some first hand info, email me and we can talk for as long as you want.

    Larry Hyde

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