Pink, Shiny and Perfect!

post-tx

Look Ma, no hose!

Seven weeks ago today on April 15, I had a double lung transplant at Barnes-Jewish Hospital in St. Louis. And what an amazing, confusing, awesome, scary, thrilling, crazy, frustrating, inspirational seven weeks it has been.

I will dedicate a series of posts to my transplant experience. And yes, I will be giving you all of the gory (and not so gory) details.  On this, my first post following my transplant, let’s dive in at the beginning — the Call and the Surgery.

A little background first:

I’d been in the hospital for about a week, trying to stabilize after an exacerbation of my IPF. I was on the Optiflow, a special machine that heats and humidifies oxygen, at a flow equivalent to 20 liters. Moving required the addition of another 15 liters via E tank.  The Friday before transplant, my doctor had basically given me 3 to 6 months. In short, I was fading fast.

At the same time, we were discussing plasmapheresis, a procedure that runs the blood through a machine to remove and temporarily suppress the production of antibodies. My heavy antibody load, which ruled out 78% of the general population as potential donors, was making it difficult to find a good match. Pheresis was a 50-50 shot, but it was the only option we had left to try to improve my chances for transplant. When I think back now, I wonder why we agonized over this decision — it should have been a no-brainer!

The Call

As it turned out, I never went through pheresis. About 10 minutes before I was to start the procedure on Monday, April 14, my nurse Leann came in and told me, “We might, might, might, might, might have a donor for you.” (Yes, there were 5 “mights”. I counted them.)

The moment I heard there might be lungs for me.

The moment I heard there might be lungs for me.

When Leann walked in, I was finishing up pulmonary rehab and Yvonne, my therapist, had just quipped, “Either I’ll see you tomorrow or you’ll be getting new lungs.” Yvonne was just one of many little Divine Messages that came through during that life-changing 24 hours.

The news sent an electrical current ripping through my body, from the top of my head to the tips of my toes. My first comment was, “Really?”, followed by a huge grin. Not exactly the brilliant statement I’d dreamed about, but I was caught completely off-guard. I looked over at my husband in disbelief, then quickly took a deep breath and reminded myself we had a long way to go before those five “mights” became the real thing.

An hour later, Leann announced we were moving forward. I burst into tears and made a soggy mess of my husband’s shoulder. Though we were far from a solid “Go”, we were on our way to finally realizing what we’d been working toward for so long. At the same time excitement and emotion overwhelmed me, my heart broke because I knew someone had died suddenly and their family was wrestling with one of the most difficult decisions they would ever face. I bowed my head to pray — for them, for my donor, for my family and for me.

Waiting_1

Homework helped pass the wait.

I went down for pre-transplant testing — blood tests and a chest x-ray.  And then we waited. About 10 p.m., I learned that I would be going down to surgery at 2 a.m.  It was a go.  Another miracle. They’d found a donor who had almost no antigens — my antibodies suddenly were a non-issue.

The next four hours were a blur of texts back and forth to my family on the West Coast, as well as prayers and good wishes from my Facebook friends across the country.  Two a.m. finally came and we headed downstairs.

 

The Surgery

pre-op

Waiting in pre-op. The family is sitting in front of me, munching away!

I was the only patient in pre-op, so my family was able to sit outside my cubby and chat with me. What I remember most is the sound of munching — they were chowing down on chips and soda. I, of course, had had nothing to eat or drink since around 2:00 that afternoon. My stomach rumbled mercilessly. But the mood was upbeat, and when my surgeon arrived, he announced that he’d had a good night’s sleep and a full breakfast.  He was ready to go.

Surgery was delayed three times as more transplant teams arrived at the donor site. The generosity of my donor family cannot be overstated. Because of their selflessness, they turned a profound loss into a second chance at life for many others. I am eternally grateful!

All the instruments, prepped and ready!

All the instruments, prepped and ready!

I went into surgery sometime around 6 a.m. on Tuesday, April 15. I’m a little fuzzy on times and details because by then they’d given me a happy shot.  I remember sliding over from the stretcher to the operating table. One team member read off the names of everyone there and what their job was (they tape the entire procedure). And then they placed a mask over my face and in seconds I was out. I’d sent a disposable camera into the OR with my surgeon, the amazingly gifted Dr. Bryan Meyers. The photos below are from my surgery:

Heart/lung machine

Heart-lung bypass machine

The heart-lung bypass machine.  In some transplants, they can let one old lung do the breathing while the other is removed and a new lung transplanted. My old gaspers were in such bad shape they had to use the bypass. I received my very first transfusion because the bypass requires extra blood volume. Technology is simply amazing!

Crappy lung

Crappy lung

My diseased right lung. It’s amazing that something this dark and shriveled could process any oxygen at all. Can you say “God’s perfect timing”? I couldn’t have waited much longer.

Warming Up 2

Pink, shiny and perfect new lungs!

My shiny new lungs! The one at the bottom is still covered in its protective cloth. They’re so pink they almost glow! Angie, my scrub nurse, said she’d never seen lungs so pink!

Dr. Meyers performing magic!

Dr. Meyers performing magic!

Dr. Bryan Meyers implanting my shiny new  lung. This photo brought tears to my eyes — at last, no more gasping. This moment marked the beginning of a brand new life for me!

Thumbs Up!Angie gives us the thumbs up — all went well!  I know this is me because I recognize the feet!

Old lungs packed for research

Old lungs off to the research lab.

My old lungs, ready to go to the research lab. I donated them in hopes they will help researchers discover better treatments or even a cure for pulmonary fibrosis. The small container at the top includes unused pieces from my new lungs. Since my donor was 6 feet tall and I’m 5’4″, Dr. Meyers removed the upper lobe of my new left lung and did a wedge resection on my right. The day after my transplant, Dr. Meyers went back in to remove some packing and clean up any blood clots or incidental bleeding. This is standard procedure at Barnes in many lung transplant cases. He saw that my right lung was still a little too big, so he removed a second wedge. I’m happy to say that they fit perfectly now and are working beautifully.

By 1:00 p.m. I was out of surgery. The whole thing took about 6-1/2 hours.  I remember nothing until they removed the breathing tube on Friday, April 18 — Good Friday! But that’s a story for another post…

Before I go, I want to thank everyone who prayed for me, sent me notes of encouragement and positive energy, and offered advice and insights from the perspective of “being there.” I couldn’t have done this without you. And to my donor family, thank you for giving me life. You are and will remain in my heart and in my prayers forever.

 

 

 

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Busted!

Image  PF has been an adventure for me in ways I never could imagine.  Not only have I experienced an illness once suffered exclusively by HIV patients (PCP pneumonia), and developed a perforated septum only a serious coke head could appreciate, now I’ve broken my ankle in a fashion befitting a fullback.  The xray above isn’t mine, but it looks pretty darn close to what i did.  And I blame it all on PF — okay, and some stupid choices on my part.

Last week I was up late doing my insomniac routine when I decided I’d get ready for bed and attempt sleep one more time.  I was on my way to the bathroom and noticed the bubbler was empty.  The bubbler is a small bottle attached to the concentrator that humidifies the O2, making it easier to breathe.  I bent over (mistake #1), unscrewed the bubbler and filled it, then screwed it back in place (mistake #2).  I was a little breathless but figured concentrator_cropit was because I’d just bent over (all those innards squeezing against my lungs).  What I didn’t realize was that I hadn’t screwed the bubbler on just right. As a result, the concentrator gauge read that I was getting my full quotient of O2, but a few precious LPMs were actually bleeding out of the bubbler. I took a couple of steps and my sats dropped hard and fast.  I got that hurky-jerky feeling in my arms that signals I am about to collapse…and I did.  Usually I end up on my knees or my rump, but this time I somehow twisted my ankle under me.

When I hit the floor, I splayed my legs in front of me, took one look at the odd angle of my ankle, and yelled.  I don’t think I even said words, I just yelled until I had no more breath.  I don’t think I passed out, because I remember thinking hard about…something.  But it did seem like a long time before the family arrived.  It wasn’t of course, they were there in seconds giving me alternate cannulas and making sure the O2 was flowing. Then I told them about my ankle and everyone gasped. The bone wasn’t sticking out, but you could see the contour of it beneath my skin and it was definitely not in the right place.  A quick call to 911 was followed by a bumpy ride to the ER (ambulances are NOT air-cushioned) with a very nice paramedic.  Xrays showed that I dislocated the ankle and had a spiral fracture of the fibula. Before this, the only bones I’d broken were a couple of toes. Two years of prednisone had weakened my joint and my bone.  Have I mentioned I have a loathe-hate relationship with prednisone?  For all that had happened, there wasn’t much pain. Even when the ER doc put the ankle back into position, it really didn’t hurt (okay, maybe the morphine helped a little there).

The most distressing part was hearing that I would likely need surgery to put the ankle back together.  Surgery is a very scary proposition for me because I can’t be “put under” anesthesia. If I am ever intubated, I will probably never go off a vent  (and never get a transplant).  Which meant this surgery had to be done with me awake.  Dr. Wegman, my surgeon, was one month into private practice when I showed up in his office.  He’s part of a highly respected group recommended by my primary doc, so I figured they would only hire the best.  But I have to admit, I think I scared the new guy a little.  I would be his first “awake” surgical patient.  Lucky for him, I’m actually pretty mellow.  Anyway, as soon as the bone guy confirmed surgery, I called Dr. Potts, my pulmonologist and knight in white coat, to tell him what was going on.  He immediately called the head of anesthesia and demanded the best person for this gasless procedure.  He also called respiratory therapy and set up the Optiflow system for surgery.  Optiflow is an oxygen system that heats and humidifies O2 at flows up to 60 LPM.  I was on 55 LPM for surgery and my sats never fell below 93!

Thanks to Dr. Potts and team planning it all out ahead of time, everything went perfectly.  I had a spinal and epidural that left my lower half completely numb for the ORIF surgery (open reduction internal fixation).  A sterile drape over my face ensured I didn’t have to view the hardware application to my bone (one plate, 8 screws, plus a 9th screw to stabilize the tibia and fibula), and the noise of the Optiflow pretty much left me in my own little world.  I chatted with Dr. Settles, the wonderful anesthesiologist, about college-bound kids and career changes (he used to be an OB-GYN).  And when I hit recovery a few hours later, I didn’t have to deal with that awful grogginess.  I spent the night in the hospital to make sure my lungs were functioning well following the “stress” of surgery.  All was fine. In the morning, I got a quick lesson in the fine art of walkers and headed home.

Now, four days post-op, the hardest thing to deal with is that everything is, well, harder.  Walking around the house on two healthy legs uses a lot less energy (and a lot less oxygen) than holding myself up on a walker with two arms and hopping on one leg.  Even a two-hop transition from chair to wheelchair leaves me breathless.  I can’t bear any weight on my ankle for 6 weeks, so I will be dealing with this for awhile.  I’ve started working with a physical therapist to try to keep the blood flowing and get my muscles to be more efficient in oxygen use. Think chairobics.

In the meantime, I feel like a total invalid. The family freaks if I try to do anything on my own, because let’s face it, there’s a very real chance I could fall again.  And if I break anything else, they might as well just rig me up in a hoist and swing me from bed to bathroom.  Heck, they might prefer that now, but I do have a little dignity left. Not much, but some. Then again, the hoist idea may not be so bad.

The thing I have to keep in mind is that this is just another bump in a very windy, bumpy road. I will heal, and I will go on. And I will heed the lessons I’ve learned:

  1. Trust how I feel, not what I see. The concentrator said I was getting the right amount of O2, but my body told me I wasn’t. Next time I will sit down and take time to figure out what’s going on.
  2. Check the bubbler, check the bubbler, and check the bubbler. The same is true with all of my equipment. Everything is so routine that it’s easy to get careless. But my life literally depends on my oxygen apparatuses.
  3. Be grateful everyday for my caregivers.  My family are the unsung heroes in all of this. People tell me how brave I am, but I wouldn’t be here (literally) if my family wasn’t here to save my sorry ass when I do stupid things. They are brave for living this with me. I love them to the moon and back and will never be able to express just how much they mean to me.
  4. Trust the team. I called Dr. Potts because I wanted to make sure he was in the loop early. Because I contacted as soon as I did, he was able to work out a plan with my surgeon that ensured both of my issues were handled appropriately.

I wonder what the next bump will bring?

Is This Progress?

ImageIs this progression or an infection?  A reaction to the weather or some other episode? These are the questions I ask every time my cough gets worse or I have more shortness of breath, or my sats just won’t stay up.  They’re the same questions everyone with PF asks. Because this is a ninja disease.  You may be stable for months, years even, and then BAM!  Without warning, your condition worsens almost overnight.

That’s what I’m wrestling with right now.  Is this progression, or just another infection?  I was in the hospital with bacterial pneumonia in early July — 6 days, including 2 in ICU.  But I responded quickly to treatment and came home almost at baseline.  Almost, but not quite.  I had been resting on 6 LPM and found I was more comfortable at 7 LPM.  And before the infection, I’d been moving on 10 LPM, but after I definitely needed 15 LPM.  My doc told me not to worry; it takes a long time to fully recover from pneumonia, and since this was my third bout, it would take longer still.

I settled in for a quiet summer of resting and steering clear of potential infection sources (i.e. crowds!)  But I still felt like I just wasn’t getting better.  We played with my prednisone but even that didn’t help.  Then, two weeks ago, I was having trouble making it down the hallway without getting short of breath. My sats weren’t holding, either, so I kicked up my oxygen another notch — 8 LPM.  When I woke up with a productive cough (my cough is ALWAYS dry), I called my doc.  He put me on oral antibiotics and bumped up my prednisone again.  After a week of antiobiotics, I wasn’t coughing up gunk anymore, but I still felt lousy.  And my sats were falling again.

As it was, I had maxed out the oxygen system I had available at home.  My 10 liter concentrator only yields 10 LPM if I use a 7 ft. hose — that’s the same length you use with a portable tank.  A 25 ft. hose — which allows me to move around my bedroom and to the bathroom — yields 8 LPM.  My portable liquid tank goes to 15 LPM, which means that anytime I want to move more than a few steps, I have to use my portable.  I talked to my doc and we added a second 10 liter concentrator.  They are Y’d together and with a 25 ft. hose, I get 16 LPM.  That’s perfect right now — sitting on 16, I can keep  my sats right around 90%.  I still need to use my portables if I want to go anywhere else in the house.  I’ve Y’d two of them together to give me 20 LPM so I can make it out to the kitchen to eat dinner with the family.  The problem is, at these high flow rates, even liquid portables don’t last long — maybe half an hour at 15 LPM.  I can probably get 45 minutes to an hour when I Y two together (10 LPM each for a total of 20).  That means excursions beyond home are impossible.  I can do doctor visits, but lunch with friends is off the table.

optiflow

MyAirvo/OptiFlow

One of the big side effects of pumping such high O2 levels is nose bleeds, lots and lots of nose bleeds.  Even with a bubbler on the concentrator, my sinuses are parched.  I use Ayr gel and Ayr saline spray throughout the day, which help.  But the assault on my mucous membranes is vicious.  My doctor prescribed a new machine called the MyAirvo to help with this.  I was on one in the hospital (where it’s called OptiFlow).  It humidifies and heats the oxygen, so it is much easier to breathe.  It’s also quieter because you don’t get the “rushing air” sound through the cannula.  On the downside, however, the tubing is only 3 ft. long, so I have to switch off to a portable to do anything.  And I will need to add a third concentrator to get enough oxygen flow to keep my sats up.  Right now, when I use the MyAirvo, I have to Y in a 3 LPM from my liquid to keep me sats even close to 90%.  And then there’s the machine rental itself.  It’s an expensive piece of equipment, and it’s so new that most insurance companies (including mine) don’t cover it yet.  So I’m deciding whether this is right for me just yet.

When I look at my oxygen numbers, they just seem ridiculous.  From what I’ve seen, most people don’t use oxygen at this level until the bitter end.  But I’ve always seemed to require higher O2, and my body still feels like it’s raring to go (okay, not raring, but eager).  I’ve had a couple of crazy instances where my liquid ran out and walked 20 feet or so without O2 — I crumpled on the spot like a marionette without strings.  I was still conscious and talking, and as soon as I got oxygen and brought my sats up, I was up walking again like nothing happened.  At least for now, I’m only limited by the Os I can get up my nose.  I pray the body hangs in there with me.