Apologizing for Existing

The first five words of Katie Riegel’s insightful post reveal a crippling secret I’ve kept hidden for nearly a year. I am stuck. Strangely, bewilderingly, frustratingly stuck.

Somewhere between the desperate hope of a terminal woman and the overwhelming joy of one delivered from death, I began to question why. Why was I saved? Why did so many people I don’t even know support me? What have I done to my kids? And how can I ever live a life that truly honors my donor, my family, my friends, my medical team and all the rest?

Will you have the same epiphany I did?

The Manifesto

I’ve been a little paralyzed to write since the utterly unexpected popularity of my “Depression is a Trip” post. How do you follow something that seems to speak to so many people? And of course, depression tells us that we can’t, that any success was a fluke, that really we’re fakes, and the world will soon discover our deception and unmask us as the failures we are.

I wrote that post for myself, because metaphor helps me think, and for my husband, who wants to solve everything for me because he is an engineer and a man and he loves me. I wrote it because I couldn’t not write it.

All of which is, perhaps, an apologetic lead-up to this post. Which is exactly the point.

thanks-1025339_1920One of the most interesting comments on that other post was about apologizing. The commenter’s point was that people with depression should…

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Transplant Checklist: Get Ready for the Call!

ChecklistThe testing is finally over and you’ve gotten the good news, you’re on the list! Now comes the long days of waiting, and the stress of having to be ready at all times to head to the hospital when the call comes.

It took me several weeks after I made the list to finally get my bag packed and myself ready.  I talked to my transplant center and reached out to friends on Facebook to gather their suggestions on what to take. Even with lots of input beforehand, my husband still ended up shuttling necessities back and forth to me throughout my hospital stay. And then there was the mad scramble to get everything ready for my homecoming! If only there had been a checklist ….

Well, now there is! With additional advice from the transplant community and insights from my own experience, I’ve created a checklist of what to bring with you, what to prepare ahead, and what to have ready for your recovery at home.

Let me preface everything with a reminder that an organ transplant is complex and all-encompassing, It’s a shock not only physically, but mentally and emotionally as well. Apart from a few basic supplies, concentrate on creating calm and comfort for yourself.  Don’t worry about appearances. If it works for you, it’s important. Remember, too, that these are just suggestions. Pack what you are most likely to use.

Hospital Bag Checklist

Basic Essentials

  • Toothbrush (new/unused)
  • Toothpaste
  • Brush and/or comb
  • Lip balm (new/unused)
  • Lotion (the hospital supplies this, but if you prefer a specific brand or scent, bring your own)
  • Hand sanitizer (I kept a small bottle so I had it available whenever I needed it)
  • Dry shampoo (sponge baths only for the first three weeks!)

Comfort Suggestions (Whatever works for you)

  • A favorite pillow or blanket (wash well)
  • Stuffed animal or other “snuggly” (clean well)
  • Pajamas and/or robe (you’ll be in a gown until the catheter is removed, and on a heart monitor the entire stay. If you choose to wear your own PJs, bring a few pairs so you can stay fresh

Entertainment and Communication (Distractions!)

  • Phone (to keep everyone updated, take pictures of your progress, etc)
  • Tablet or eReader (watch movies, read books, post to Facebook, etc.)
  • iPod and headphones
  • Books and Magazines
  • Notebook and pen (write questions for your doc, document your thoughts and feelings, or use it communicate if you are trached and can’t talk)
  • Disposable camera with flash (if you want photos from surgery. Confirm with your center that they allow this. Keep the camera sealed in its foil pouch and write your name on it)

Other Suggestions (Confirm first with your center)

  • Gum
  • Mints or hard candy
  • Small snacks

Home Needs Post-Transplant

  • Clean and sanitary (infection is always a threat. Hire a service or ask family/friends to clean the house before you get home. Remember germ hoarders like door knobs and light switches)
  • Shower chair or bench (you’ll be weak for awhile and don’t want to risk a fall)
  • Raised toilet seat (high-dose prednisone especially turns quadriceps into jelly)
  • Protein drinks and snacks (you may have little appetite when you get home — protein is essential for healing)
  • Full-time Caregiver(s) (Until you can drive, you will need transportation to and from frequent clinic and therapy appointments. For the first two to three weeks as gain strength, you may also need help with things like preparing and taking your meds, meal prep, basic chores,  etc.)

Your transplant center will have its own checklist for you. Different centers have different policies and requirements, which always take precedence over suggestions you find here or anywhere else. But this is a start, and will help get you thinking and planning.

Do you have additional suggestions? What were your “must haves” during your recovery both in the hospital and at home? Please share you thoughts in the comments below.

 

 

 

PLM Interview: No Oxygen!

No_OsThe passionate and dedicated folks at PatientsLikeMe have followed my journey almost as closely as I have. Recently, they asked me to share my transplant experiences from getting “the call” to rehab and recovery.

If you haven’t checked out PLM yet, I strongly recommend you do, starting with this interview!

 

“No Oxygen”

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)  Read the full interview

 

UN-Tethered

CIMG2308When the doorbell rang, I was as giddy as a little kid. It was a gorgeous afternoon, just perfect for taking back one more piece of my independence.  At the door was TJ, my awesome oxygen dude and a twice weekly visitor for most of the past year. But TJ wasn’t dropping off this day, he was picking up!

I’d been staring at empty liquid oxygen (LOX) reservoirs and silent O2 concentrators (two of each) for nearly two months, and it was seriously bumming me out. While not

TJ wheels one of my liquid O2 reservoirs!

TJ wheels one of my liquid O2 reservoirs!

long ago all that equipment kept me alive, it quickly become an unwelcome reminder of the struggle that nearly ended me. Since I’m not a dwell-on-the-past kinda person (at least not anymore), I couldn’t wait to get rid of all those tanks and machines so I could fully focus on what’s ahead: rehabbing my lungs and body, eating right, staying active and living the kind of life that will make my donor and his family happy they made the decision they did.

It took me a little longer than most to get rid of the actual equipment. Barnes Jewish, my transplant center, requires patients to keep their home oxygen equipment until after their one-month bronchoscopy. But I had to hang onto my relics until my team could schedule an overnight pulse oximetry test. It’s a simple test — my oxygen company dropped off a special pulse oximeter that recorded my sats while I slept. I don’t know the actual results yet, but I do know that my sats still drop at night, so the nocturnal Os continue (for now).  I did, however, convince my team that a home system designed to deliver up to 35 LPM was kinda overkill (not to mention expensive!)photo 1(1)

So when TJ wheeled the last concentrator out the door, I couldn’t help but shout So long huffers! He left a smaller, quieter 5-liter concentrator to supply the 2 LPM I still use at night —  my “sculpted lungs” have a little extra healing to do. But 2 liters is a whisper after the 15-30 liters I had blasting in my nose before.

Every day I see improvement.  Every morning that I wake up and take a deep breath is another miracle. And every day I give thanks for the many people who have worked so hard to keep me going: the folks at Lincare, who created an O2 system that could feed my need; my pulmonologist, Dr. Dan Potts (and Linda), who recognized my IPF immediately; everyone at St. Luke’s Respiratory Therapy and Pulmonary Rehab, who problem-solved with me and accommodated me in every way; the incredible team at Barnes-Jewish Lung Transplant Center, whose expertise and compassion are beyond compare; and my supporters, who have showered me with prayer, good humor and lots of encouragement. This little victory belongs to all of us!

 

 

 

 

 

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.

 

 

 

I Got The Call!

This afternoon I learned that they have found a donor for me. I was already in the hospital, about to start plasma pheresis, a procedure that removes and temporarily suppresses antibodies. Our goal was to expand my potential pool of donors to improve my opportunity for transplant.

But “the call” came right before my first treatment. That was 2:00 this afternoon. It’s now 10:00 pm and we are still waiting for final confirmation from my surgeon that the lungs are good. I don’t think they are even here yet. It’s an involved process: recipients for as may organs as possible are found before anything is removed. So, there’s still potential that this could be a “dry run” — a no-go. I have a good feeling, though. I woke up feeling like this day was going to be extra special and so did my husband. I have faith that all will happen exactly when it should.

I always wondered how I’d feel when I got the call. When I heard the words “We may have a donor for you”, an electric “zing” ripped through my body. Could this really be it? After a few deep breaths and a quick reminder that we were still a long way off from actual transplant,  I calmed myself down. An hour later, my nurse came in and said we’re moving forward. At that point I burst into tears. During the past seven hours I’ve felt everything from pure elation to fear to sadness for my donor to an almost Zen-like calm. My emotions are truly a roller coaster, shifting and spinning moment to moment.

My family will be updating my Caringbridge page from this point forward. I will return to Reality Gasps after I’ve recovered a bit. I’ll even have pictures of my old and new lungs!

Rub A Dub Dub

shower_benchI remember when a shower was pure delight — hot water pelting sore muscles, luxurious lather washing away the grime of the day, and fragrant steam rejuvenating every pore. I could stand there for hours (or as long as the hot water lasted), feeling the tension melt away. It’s been a long time since I had a shower like that. Bathing now is something to be endured rather than enjoyed. It has become an Activity of Daily Living (ADL), like grooming, dressing and “toileting”, all of which elicit groans from me and my fellow puffers.

Insurance companies, therapists and doctors focus a lot on ADLs because they indicate the degree of debility.  Everyone wants to know how much assistance I need with my ADLs — none, a little, significant.  How do I answer that? I still dress myself, bathe myself and brush my own teeth, but it takes a lot of time, a lot of effort and more than a lot of gasping. And, I’m not that far away from asking for help with stuff like washing my hair and scrubbing my back.

Bathing, actually is a frequent topic on puffer discussion boards. I think people are surprised at how difficult something so simple can be. But believe me, bathing can be a puffer’s worst nightmare. It doesn’t have to be, though. I’ve learned quite a bit from the pf discussions, and discovered a few things for myself, which have made bathing a little less daunting. I wouldn’t call it enjoyable, but it is tolerable now.  So I’m passing these ideas on to you.  We begin with two very basic, but very important rules:

  1. Never bathe alone.  Bathing is hard work and you are vulnerable.  Make sure you have somebody with you who can step in and provide whatever assistance you need.
  2. Never bathe after eating.  Remember when you weren’t supposed to go swimming for 30 minutes after eating? Well, I give myself a good couple of hours before stepping in the shower. Full bellies make it very hard to breathe, and this is one activity where you don’t need added stress on your poor lungs.

The rules will keep you safe.  The following tips will make everything a big easier:

Get the right equipment.

  • A sturdy shower chair or bench is a must. You can find them at just about every pharmacy as well as Wal-Mart, Target and the lot.
  • A hand-held shower wand makes it much easier to rinse the hard to reach places and is invaluable when it comes to hair washing.
  • And lastly, a good terry cloth robe will keep you warm and allow you to “drip dry”, foregoing the need for toweling off, which can zap energy very quickly.

Give yourself plenty of time.  “Quick showers” are a thing of your past. Plan for at least an hour — I usually give myself 90 minutes.  You’ll avoid rushing, which invariably leads to gasping. And you’ll have plenty of time for frequent “breathe breaks”.

Get ready.  This is the time to ask for help!  Place your chair/bench in the shower; position the shower wand where you can reach it; hang your robe on the shower and get your towel, wash cloth, shampoo, soap, etc. all ready to go. You may also want to place a chair or stool outside the shower so you can sit down and rest when you’re done.

Stop, breathe, recover.

Get set.  Bump your oxygen to your activity level — even though you are sitting, you are using your arms a lot, which increases your heart rate and sucks up oxygen big time. Get undressed, turn on the water and while it heats up…

Stop, breathe, recover.

Go.  Have a plan to be as efficient as possible while you bathe. I start with my hair, since that is the most exhausting and I have the most energy at the beginning. I’ve learned to hold my elbows down while I scrub my scalp so it isn’t as tiring. Then I work my way from top to bottom at a steady pace. Bending over compresses the lungs, so hang on tight to your wash cloth!

Before you get out, stop, breathe, recover.  It’s tempting to climb out of the shower as soon as you’re done, but don’t. You’ve worked hard and your muscles are tired.  It’s very easy for your sats to drop suddenly at this point, so give yourself a moment. Make sure your sats are in the 90s before you do anything else.

Drip dry and relax.  Wrap up in your robe and sit in a chair or curl up on the bed.  Give yourself plenty of time to recover (I take a good 15 minutes) before you even think about getting dressed.

Keep it positive.  Sometimes the angst over showering can make it seem much worse than it is. Take your time, relax and breathe through it.

One more tip — I’ve started using a non-rebreather mask when I shower and it’s helped a lot with keeping my sats up. It makes it a little more cumbersome to wash my face, but it is well-worth it!

Whenever you bathe, just listen to your body and you’ll be fine.  Clean still feels as good as it ever did — maybe even more so because these days it’s so hard won!

 

I Am a Middle-Aged Drama Queen

arrowAnyone who walks away with seven stitches and a near perfect arrow-shaped scar should have a good story to tell, right? Attacked by my recliner doesn’t seem to qualify, though. But that’s what happened. Really, I wouldn’t make up something so lame.

I blame the prednisone, of course. It’s made my skin so thin and papery that staring at it too hard can cause a tear. That’s why a simple scratch that should have left a red mark at most resulted in a 3-inch gash topped by a chevron-shaped skin flap.  I didn’t even know I’d injured myself until I saw blood dripping on the carpet. One look at the wound and I knew I needed stitches.

Luckily, we have a wonderful urgent care just five minutes from the house. Proximity is key not just for convenience — it also means if my portables run low, my husband can dash home for a quick fill. The doc was fast with his patch job, though, so we managed the outing on what I had with me. Still, the whole incident was full of drama — drama that we are all growing quite tired of.

Bum lungs and bad-ass meds keep me teetering out here on the brink. A little stumble becomes a broken ankle and surgery. The sniffles morph into pneumonia. An extra half slice of pizza leads to an evening of difficult breathing followed by 20 minutes of roller coaster sats and projectile coughing at bedtime. Drama Queen is not my style and it’s a role I inhabit reluctantly. But maybe that’s the lesson here. Let the drama flow through me and over me without letting it define me.

Unfortunately, no matter how Zen I become about it all, everything that happens to me affects my family, too.  If I need to go to the ER/urgent care/doctor, someone has to drop everything and take me. If a tube becomes unplugged, someone has to untangle the snarl and reconnect it. If my tank runs dry, someone has to fill a new one for me. Caregiving is emotionally, mentally and physically draining work — especially for those who take care of patients like me, dancing on the edge.  I have the easy part: breathing, hoping, waiting. But my family? They’re the ones who deserve medals, parades and their own feast days.

 

PLM Interview

PLM_LogoRecently I was interviewed by the patient-support website PatientsLikeMe.com about “Life on the List”.  You can check out the full interview here.

I love PLM because it provides a single, comprehensive location where I can track everything from my meds to treatments, hospitalizations, and even how I’m feeling today. The charts feature offers a running history that I can review as needed with my medical team.  Plus, the forums allow me to connect with other patients to ask questions, share ideas and encouragement, and offer feedback on a wide variety of pf-related issues.

A key component of PLM is data sharing between researchers and members. Researchers frequently send out requests to members to take part in questionnaires, interviews or surveys.  And, I can give them access to my charted info for further research and analysis.

If you haven’t visited PatientsLikeMe.com, it’s well work a click.  They have communities for a wide variety of diseases, illnesses and conditions — even “rarities” like pulmonary fibrosis.

Tethered II

Today marks week #6 on the transplant list and my disease continues to progress. Everything slowly is getting more difficult, usually requiring more energy and breath than I can muster. As a result, I confine my bipedal forays almost exclusively to Pulmonary Rehab and the 6-minute walk I must endure at my bi-weekly clinic appointments.  Around the house, rather than hoofing from one room to the next, I rely on my trusty chariot — a zippy 3-wheeled scooter that miraculously squeezes into even the tightest alcoves and closets.

The scooter is truly a Godsend, affording me the kind of speed and agility I haven’t experienced for a very long time. It saves my breath for the really difficult maneuvers, like going to bed or getting a drink. But it also adds a whole new dimension of insanity to my ongoing issues with snarled cannula.  On my feet, it was no big deal to reverse direction and walk back around any obstacle my cannula encountered. Now, that same action often requires a deftly executed three-point turn, the occasional ding to cabinet or wall, a terrorized dog, and a bit of mild cursing.

Most annoying, however, is the constant battle between 50 feet of cannula and three spinning wheels. Toss in a persnickety “Y” connector that joins cannula to concentrators, and you have a disaster that plays out daily. Oxygen tubing is not cooperative. It does not lie flat or slide along in a nice orderly fashion out of its neat coil. It prefers to bunch and gather, especially around corners, ripping itself free of the Y connector on one end, or my face on the other.

But my cannula really shows its fickle ways while I am riding down halls, around furniture, and through rooms. It wraps itself around tires, knots up under the axle, or gets itself stuck in the tiny “anti-wheelie” wheels at the rear of the scooter. Often I will be jetting along down the straight-away (hall), only to have the cannula ripped from my face as it catches briefly under a wheel. I’ve tried coiling the cannula as I go, threading it through the arm rest to keep it free from spinning tires, and readjusting the tubing to keep it out of scooter range. But nothing is fail-proof.  I still hold out hope that some clever engineering student at MIT or Caltech will lay down their latest Robot Wars entry long enough to design a workable hose reel for oxygen tubing. They will be an instant Rock Star among gaspers everywhere!

Though cannula and scooter may not be the best-suited cohorts, together they provide a sense of freedom that I cling to everyday. Unlike Pulmonary Rehab where I can do 30 minutes on the treadmill (supported with 40 lpm of oxygen, constant monitoring, and a snail-like pace), taking three steps at home leaves me gasping. The scooter opens up the world (okay, the house) to me. With it, I’ve been able to enjoy a few sunny afternoons on the deck and get my own lunch — small but very important victories. If the call doesn’t come soon, I will likely finish out my waiting in the hospital. But for now, the scooter is helping to keep me firmly planted at home where I can ride to the end of my 50-ft. tether and view the landscape from a new perspective.