The Life and Lungs of Kim

Yesterday, I started a blog post for my one-year lungaversary cause, you know, it’s a big deal getting this year wrapped up. However, today I spent the morning at the University of Washington for my one-year check-up and now I’m in a different emotional state than I was yesterday. So all that work is now merely a personal journal entry and not for thine eyes. Let’s pretend it was profound and poetic, shall we? I had all my regular appointments (x-ray, blood draw, lung function, transplant clinic) but it was extra meaningful for three reasons: one, today was the actual anniversary of the surgery. Two, my mom was with me. And three, we went up to the ICU and had a looksie.   Going to the Cardiothoracic ICU today was the end of the journey of Sick Kim.  It was wonderful for me to walk through those doors, unassisted, looking like the healthy person I now am. I stood outside my hospital room door for a while, remembering those five weeks I spent in there (then transf...

Last weekend, I was all fired up to write a blog post…but then, my computer went kaput so that put a damper on things.  And aside: I know many of you think I married Scot for his keen wit, his loving sensitivity, his ability to express his emotions…but no.  The truth is out: I married him for his computer prowess.  Seriously, how do you people DO IT, those of you without a honey (or at least a close family member) to assess the severity of the problem, grab a kid (with the promise of a hot dog) and head down to Fry’s and buy a new computer then proceed to transfer all the data from one computer to the other?  Put one more item down on my gratitude list. The reason I was fired up was because I had just come home from a 5-day vacation with the kids and Jen and her two kids and I rocked it. Raaaaaahhhhhked it.   We went to Silverwood Theme Park resort in Idaho – a 5 ½ hour drive away.  The last theme park I did was Disneyland in 2008 and back then, ...

Six months ago today, I received two wonderful, life-saving lungs.  It still catches me off guard that I can run errands in the morning and still have energy for a walk in the evening.  I can bend down to pick up a pile of clothes from the floor and not be out of breath on my way back up.  Scot and the kids have to catch up to ME when we’re walking together.  I can hop in the shower without all the effort to protect my central IV site.   I’m still seeing people for the first time since surgery and I see them try to place the differences in me: my coloring, the shape of my face, my shorter hair (have I mentioned my hair's starting to fall out?), the scars on my neck – it’s all just a little different than the Kim of last fall. My body is still in healing mode.  Although I deal with many side effects from my 17+ daily meds, my biggest issue right now is combating the migraine headaches I’m getting.  Migraines occur, in the 20% of the population who are...

We've established that I’m feeling stronger than before transplant and that we are pleased.  We, however, are starting to see some other effects that are discouraging: notably, the weight gain. (And perhaps the use of the royal We.  Like it’s not MY weight gain, it’s OUR weight gain.  And since it’s your damn fault, please stop.) In addition to blaming my chunkiness on you, I can also easily blame it on the drugs I’m taking but truth of the matter is I’m lazy.  And man, do I ever have an awesome excuse (uh, new lungs.  Duh.) but it’s getting more difficult to use that, being five months out and not consistently exercising.  And eating.  Oh, the eating.  Do you know what happens when you bake a batch of cookies “for the family” but said family is gone all day and you’re at home?  You eat.  The batch.  Of cookies.  And my brain!  The noggin ain’t what it used to be.  In fact, I’m writing this now though I...

It's almost 4 1/2 months post transplant.  I've been thinking for weeks that I should write an update...but man, am I ever boring now (woo hoo!  Boring RULES!).  I'm just plugging along and I have nothing particularly exciting to share but here it is anyway: I graduated last week from physical therapy!  I walked up five flights of stairs (followed by a loooooong rest to get my oxygen back up and heart rate down. But still.)  I've got a list of a dozen or so exercises I'm supposed to continue doing to increase my strength, mobility and flexibility (a sign that I'm a normal person again: "supposed to" is the key phrase there.  I'm a huge slacker and will never get to my goal of playing tennis this summer if I don't buckle down.)  This month is organ donation month and I was inspired to finally put my words to paper and send a letter to my donor's family (I've known since February that my lungs are from a woman in her 50s who left beh...

I have a cold!  A marvelously mundane, run-of-the-mill, COLD!  Never before (and probably never again) have I been this happy to have a sore throat, cough and runny nose.  See, I've spent these past three months worried about my super-suppressed immune system and what was going to happen once I contracted some virus (despite my masks and copious amounts of hand sanitizer): Would it settle into my new lungs and compromise them?  Would a mere ordinary virus render me incapacitated somehow?   Will a strong cough hurt my still-healing sternum? Turns out, none of the above.  I, being the mere mortal that I am, can get sick just like all y’all.  So bring on the tissue (and Sudafed!  For the first time in 7 years, I’m allowed to have regular cold medicines!  THESE ARE VICTORIES, PEOPLE.). I’ll be sniffing, snorting and hacking here at home with a big ol’ smile on my face. And in other update-news: I had clinic today at UW...

Tomorrow, I turn 41.  The past 12 months have been (pick a word, any word...) miraculous, challenging, heartening, triumphant..and way more.  Coming full circle, I'm taking the time to remember how awesome my 40th birthday was, surrounded by family and friends, and so fancy!  And I'm celebrating how lucky I am to be here a year later, having gone through so much.  I know I've said it before but I am incredibly grateful to hundreds of people -- my donor, all the medical professionals, my husband and mom, my family, my friends and even more folks who I don't know but are friends of you all and have been following this craziness and providing YOU with support and love. The slideshow shown at my party (still so wonderful, Deb!): http://nunesfamily.com/direct/KimsParty/Kims40thSlideshow_FromDeb.mp4 A slideshow of my party: http://nunesfamily.com/direct/KimsParty/KimsPartySlideshow_FromPhotographer.mp4 (If any problems opening those up, you...

Last weekend marked my two-month lungaversary.  It is a little stunning to me that it’s only been two months since we got The Call that Saturday evening about a set of lungs that may work and that I should come into the hospital to start the process. On Monday, October 15, I was granted an exception to my Lung Allocation Score and that put me at or darn near the top of UW’s lung transplant waiting list. Seven weeks later, I received my first call that there was a potential match and that I should come into the hospital…but after 18 hours of waiting, the donor lungs were too damaged to transplant so I was sent home.  The next 10 days after that are a blur: lots of holiday gift buying, decorating, planning; busy kid schedules; a brief respite from the hustle with a restful and luxurious visit to a spa, followed a few days later by an ambulance ride to the ER for some stitches in my chin after passing out.  On Saturday, December 15, we got The Call Part Two – Scot and I...

Definition of Mulligan: a free shot sometimes given a golfer in informal play when the previous shot was poorly played Today was a banner day.  It started off a tad grumpy, with sister-in-law Robin and me hopping in the car at the ungodly hour of 6:15am to make our way to Seattle.  But our drive-thru coffees were delightful, traffic was smooth and we were at the University of Washington Medical Center by 7am to have a quick X-ray and then meet Scot at Dr. Mulligan’s office for my official post-op meeting.   Dr. Mulligan is my surgeon , whom I have only met once before (well, when I was conscious) and the reverence with which he’s treated by colleagues and staff is unparalleled. It was a pretty quick meeting, maybe 15-20 minutes but it was huge.  Among other things:  We FINALLY clarified how he opened me up!  He used a clamshell incision to cut the skin under the breast, from armpit to armpit (this is where he took care to avoid any cosmetic implication...

I've been home a week and it's been WONDERFUL! Love my flannel sheets; the sounds of the kids (at the moment, Charlotte is singing loudly in the shower); all the yummy food that's still being dropped off to help out the family; the surprise new car Scot bought for me (apparently these lungs are too good for a mini-van -- I have the prettiest Toyota Highlander you've ever seen, though sadly I can't drive it until mid-March); and all the help I'm getting in the house -- currently, my awesome sis-in-law Robin Kinnard is here and it's such a treat for all of us...and I don't know what we would do without niece Jessi Nunes being the "primary parent" still, as Scot's been back at work and I'm not ready to take that on.  I'm getting stronger each day -- made it up 4 stairs unassisted twice today and am turning into a pretty good putterer around the house. I had my first post-tx clinic appointment yesterday and have my first outpatient ph...

Home. Relieved. Overwhelmed. Tired. Love. Grateful. Home.

Yea for getting up out of the squishy chair by myself! Yea for the Jennifer Justus Rees sighting today! Yea for Cheryl Long who is been a rock these past many weeks and has to take care of her own self, too! Yea for Downtown Abbey being free on Amazon Prime! Yea for the triple grande mocha that I'm drinking right now! And yea for the HIGH likelihood that this is really, truly and for real my last night in this hospital!!!

Today's visit with the kids, along with an afternoon of sun shining into my hospital room and a wheelchair ride throughout the hospital, did good for my soul. I wake up each morning (well, I really wake up at 10pm for an hour-long nebulizer treatment, midnight for vitals, pills and blood draw, 4am blood draw and weight check, 5am X-ray, 6:30am doctor visit, 7am pills...and this is still a better schedule than when I was in ICU) trying to figure out what I can do. Can I get out of bed myself? No, unless the bed is super high. Can I walk to the sink by myself? Yes. Can I get off the commode? Nope -- and do I need one or two people to help me stand up from it? Can I get back into bed without someone getting my legs up for me? Most of the time. And everyday it's a little different and it's mostly two steps forward, one step back so my overall trajectory is great though I go through times of just wanting my legs to work again, darn it, and be able to feel like I'm ready to p...

Tomorrow will mark 5 weeks since we got the call and checked into the ICU. It’s been a pretty wild ride, but the rumor is we’re looking at a high probability of a discharge on Monday! There are a few things that need to be done before then (nutrition info, drug education at the pharmacy, general home care stuff), but there is confidence that we can all get wrapped up and bring her home. Her trache finally came out (picture below), and it’s been replaced with a gauze dressing while the hole in her throat heals up. The medical issue still holding things up a bit is the tubes in her chest for draining excess fluids away from her lungs. She was down to one of these (from four), but they ended up putting a second back in to speed things up a bit. They’re looking for a very low amount of drained fluid for the day, and while Kim’s close, she’s not QUITE there yet. Still, her progress has been taken into account when considering Monday as the possible go-home day. She’s still pretty weak, but...

Yes, ok, I know, I know. I am SORRY. Please forgive me for skipping a day. Or two.  Or *cough* three. Here’s the thing: Now that Kim is doing so well, there is a lot less to tell you guys! Each day is an incremental gain on the day before, in which Kim walks more, eats more, talks more… everything is more! Which is great and all, but makes it challenging for me to write anything incredibly interesting, e.g., “Kim is doing better. Again.”.  However, after a few days the small news gathers into bigger news, and I’ve got some tidbits for you at last. So forgive me? Here goes.. Kim has been officially transitioned to “floor care” which means she’s no longer technically an ICU patient because she’s doing so great and doesn’t need the constant nurse attention. I say “technically” because they haven’t actually MOVED her to the floor (AKA across the hall to the rooms with better paneling and fewer nurses) because there aren’t any beds available over there. Even still, the in...

...so this is the flip side, eh? Last time I wrote on Facebook was a month ago, as I was readying to be wheeled into the operating room for my double lung chronicle of events from my amazing husband has been invaluable. I've got bits and pieces floating in my head, intense emotions, blurry thoughts, and so many other things. And it's still hard to focus for too long on many things like writing as my attention is necessarily devoted to relearning to walk, breath, eat, talk and other talents I thought I'd mostly mastered a few years ago. But I wanted to let you all know I'm on the mend and am finally more "Kim" than not. Love to you all and so much gratitude for my village, it hurts my heart (but this time in a very good way).

Kim’s physical therapist, the alluring and dynamic Brandon (just for you, Shannon) asked her to walk 170 feet today, so naturally Kim did 470 instead. Her loop around the ICU resembled an Indy 500 victory lap, complete with cheering fans and a winner’s medal (the nurses made her one on gold paper and pinned it to her chest). In short, she rocked it and the fans went wild.  She also passed her barium swallow test with flying colors and celebrated with her first real food in a month: meatloaf, mac ‘n cheese, sherbet and ice tea. Her CT scan showed a bit of fluid buildup around her heart, but not enough to be overly concerned about. They’ll keep an eye on it over the weekend, but the team doesn’t feel like it’s going to impede her progress at all. Personally I think they’re just using it as an excuse to keep Kim around a bit longer since they’ve all fallen hard for her.  More tomorrow!

Status: ROCK STAR. Kim doubled her previous walking record, and afterward said she felt fantastic doing it. Vent? What vent? She is talking up a storm. Remember how I told you her first words to her mom were “Thank you for all you’ve done” ? Well, her first words to me were “I’m pooping.” And yes, she’s going to kill me for telling you that. And no, I have no regrets Her voice is kind of hilarious. She sounds just like Marge Simpson would if Marge was a cranky old New Yorker. When Charlotte heard her on the phone she said “Your voice doesn’t sound like you, but I love you anyways”. So big relief there. She also had a long talk with our favorite physician’s assistance, Becca. Becca has been with Kim since she was discharged from the OR and has been right there for all the tough, and sometimes confusing, times of Kim’s stay in ICU. Kim gave Becca a really great perspective on what it was like being the patient during this whole thing, and Becca expressed just how thrilled she ...

Oops, almost went to bed without filing my report! I briefly flashed on you guys outside my house with pitchforks and torches! Sorry to make you wait for what was a rather uneventful day. Kim walked further, talked more, and was off the vent the whole time. Seems like for good at this point. She also ate some blue vanilla pudding, which is the first official thing she’s eaten in almost four weeks. We’re supposed to watch the trache tube for signs of that blue dye (which would mean it’s going where it shouldn’t) but we saw no sign of it. Her tests results following the plasmapheresis FINALLY came back and told the right story, so they FINALLY removed the really huge and uncomfortable catheter from the side of Kim’s neck. I know it’s an awkward metaphor, but every time Kim gets disconnected from something I think of it like a beautiful hot air balloon, throwing off its lines until it can finally float freely away into the sky. Makes me pretty happy to see :)

SHE SPEAKS! The speech pathologist came to visit today and Kim managed her first words in 3.5 weeks! To accomplish this, the balloon that holds the trache in place down in Kim’s throat was deflated a bit to allow air to pass by, and the it was just a matter of dusting off the old vocal chords. Kim’s first (quite hoarse) words? “Thank you for all you’ve done, Mom”. I mean, how sweet is that? Right?! After a few more words her balloon was re-inflated and it was back to reading lips. She’ll work a bit more on this each day to slowly bring her vocal chords back to full strength, but it’s already a relief to know that they weren’t damaged by the tubes. Also, Kim walked 90 feet today, doubling her previous record! All this without vent support, so it seems super likely they’ll just call it quits on the vent once and for all tomorrow. She’ll still have to wean slowly off the trache, but she can be much more mobile not having to lug that machine around wherever she goes. Slowly but surely...

All is well… not much to tell! Kim was off the ventilator all day today so I like her chances of being off of it permanently starting tomorrow morning. She did more exercises, walked a bit further, and the doctors confirmed no biopsy will be necessary because she’s doing so great. I’m hoping that my reports are going to be shorter and shorter from here on out until the day I tell you all she’s coming home.

Another solid day of progress (and another brief update). Kim was rocking the low vent settings so well that they decided to just take her off of it entirely for the afternoon.  This means that while she still has her trache tube, it was hooked up to just good old oxygen like you’d get with a nose cannula rather than to the gangly vent machine.  So Kim was doing all her own breathing with zero pressure support! She even did some exercises while under her own steam without any issues. They’ll hook her back up to the vent for the evening so that she gets a good night of sleep, but most likely they’ll pull it again tomorrow for gradually longer periods of time as part of the weaning process.  As she continues to get stronger, they’ll replace the tube with increasingly smaller ones until she’s free of the tube entirely. Somewhere along the line in this process (maybe a week) she’ll be able to start talking a bit and perhaps even drinking something more delicious than diluted...

Today's update will be early, short, and awesome. You're welcome! The plan for this weekend is to just step back and let Kim do her thing, and that's exactly what's happening. She was on very, very low vent support pretty much all night and day, and at this point it's so minimal they're saying they may as well pull it Monday if she maintains her strength. But on top of that, even with the low vent support, Kim walked MUCH further today and say in the chair MUCH longer. She's still working herself to exhaustion but she's making enormous progress. No doubt tomorrow will be even better! She has a bit of a tough time focusing on the tiny words in texts and Facebook posts for very long, but she IS reading them and it really gives her a boost to hear from you guys. More tomorrow!

STEPS HAVE BEEN TAKEN PEOPLE! Which is to say Kim did a little walking today on her own power! HUGE MILESTONE! It was really, really hard but she grit her teeth and pushed through it. The physical therapist, Brandon, gave her just the right amount of encouragement, pressure, and praise, and when Kim made it back to her bed there was a lot of cheering from everyone.  Her oxygen levels remained perfect the entire time, and getting her body moving felt great in a “hurts so good” sort of way.  The work wiped her out and she was out for an hour or two of solid napping afterwards. And then, because simply WALKING for the first time in THREE WEEKS wasn’t enough for our Kim, she decided to impress us further by getting out of bed again and sitting in a regular old chair for a good hour.  This is also a first and shows how much stronger her abdominal muscles are becoming and how much control (i.e., balance) she’s gained.  Sitting in the chair was also a perfect opport...

End of day update for Thursday, January 03 Progress, progress, PROGRESS! We started off the day with the good news that based on the results of her CT scan yesterday, no lung biopsy would be necessary. They still wanted to do the cardioversion to correct the flutter, but this turned out to be a fairly straight forward procedure performed right in the room. It was not without excitement however! The cardio people came in with the machine that applies the shock and the nurse got Kim all set up with conductive pads applied to her chest and her back. The idea is the current flows through the pads and resets her heart’s rhythm to what it should be , eliminating the flutter. It works much like the paddles you see on TV but in a more controlled, less panic-y way. Still, it’s a jolt of electricity and they wanted Kim to be completely out for it, so they gave her a bit of fentanyl and started dosing versed. So they gave her the first dose, waited a few minutes, and then called her name. Sh...

Another great day of progress all around! MAJOR HIGHLIGHT: Kim and the kids got to see each other! The kids were pretty overwhelmed at first, but happy tears were quickly followed by excited updates on Christmas presents, friend sleepover stories, and how much they just plain old miss Mommy. The four of us had some time alone to just be together for the first time in 2 1/2 weeks (by far the longest we've ever been apart as a family) and it felt great for us all. They’re excellent lip readers, and they were not stressed, just curious, about all the tubes and machines. It was awesome. On top of that, Kim got a ton of needed mobility exercise, pushing herself beyond what was being asked of her. She stood on her own for the first time, did some in-place marching, sat up a bunch, and all sorts of other physical therapy stuff. Needless to say, this completely tuckered her out and by night time she was ready to crash. Still, she looks great and her spirits are high. In more medica...

Sorry for the late report! I'll keep it short: Kim had a really great day today and looks and feels better than any day thus far. The tests following the plasmapheresis showed they got two out of the three antibodies they were looking for so now they're targeting the third with a specialized drug. Her number look great and she's getting some mobility exercise although we'd like to see a bit more. Trying for bringing the kids tomorrow!