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.

 

 

 

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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

 

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!

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.

The Waiting Waltz

Dance2Two weeks in and I think I’m starting to get the hang of Life on the List. Thankfully, I no longer experience that little squirt of adrenalin every time my cell phone rings. Several calls from family and friends on my birthday last week were enough to break me of that heart-pumping annoyance. Even the calls that show up “BJH” (Barnes) on my caller ID don’t get me going — I know it’s probably someone from the transplant center with a question about my next appointment.

But my nonchalance over a few chirps and vibes belies a much more delicate dance taking place.  I had my first bi-weekly appointment with the transplant team a few days ago and emerged with a different picture of my situation. While my numbers haven’t changed that much — my FEV1 (measure of lung capacity) dropped a point and my blood work is the same — I’ve been struggling with my oxygen sats at home. We know that as long as we can push enough O2 into my lungs, my body will do its Energizer Bunny imitation (albeit a slo-mo verstion!)  The problem is my home O2 set up. Concentrators don’t deliver 100% oxygen, especially when they are running full-out all the time. They get close — mid 90s maybe. But my lungs are stingy.

When I need “bonus O’s” to supplement the two concentrators, I add 15 lpm on a non-rebreather mask from one of my portable liquid O2 tanks.  LOX, however, can get cantankerous, especially at high liter-flow. The tanks freeze up and flow can be inconsistent. Plus it’s difficult to know exactly how much O2 is left in a tank because LOX uses a fish scale gauge rather than a regulator.  Combine that with freezing and I find myself sucking on empties far too often.

The result is that at home it’s hard to force adequate Os into my busted lungs.  I’m fine while sitting still. In fact, I can nail sats in the mid- to high-90s while lounging about. But any movement… who would have thought going to the bathroom — something as simple as dropping trou and sitting down — would zap my sats down into the 60s. I’ve started using my scooter to get around the house and that’s actually helped a lot. It’s much easier to deal with the bathroom if I don’t have to walk 50 feet to get there. And I’m talking to Lincare, my oxygen supplier, about adding gas E-cylinders to my home O2 set-up. Gas cylinders give a more constant flow and they don’t freeze up.  And if I can get a 25-liter regulator, I’ll be in O heaven.

In the meantime, the transplant team told me I may end up spending my wait time in the hospital, where 50-psi oxygen, OptiFlow and ECMO machines will make it easier to stay oxygenated. For now, they are leaving that decision up to me. As I long as I feel like I’m getting what I need at home, I can stay put. And that’s exactly where I plan to stay, as long as I possibly can.

What the Heck is Going On?

Once I get The Call, my family will be updating everyone about my progress through CaringBridge.  The easiest way to keep in touch is to sign-up for email alerts from my CaringBridge page.

Until the Call comes, I’ll continue to post about “Life on the List” right here at Reality Gasps. So keep checking in!

The List!

OrganI made it! I’m on the lung transplant list! Well, almost. I will officially go on the list next week after I’ve met with the surgeon and signed the paperwork — that’s when the real waiting begins. In the meantime, I’m busy trying to get everything taken care of so I will be ready when I get “the call.”  And I am hopeful that my wait will not be a long one.

After a full evaluation at Barnes earlier this week, I’ve been assigned a Lung Allocation Score (LAS) of 62. The score is based on a 100-point scale and most people on the list are clustered in the 30s and 40s. A score of 50 is the 90th percentile. My score places me about the 93rd percentile, and that means that next week when I am officially listed, I will be #1 on the Barnes list.

That’s incredibly exciting, however it’s tempered a bit by some pretty serious limiting factors on my side. I’m relatively short (5’4″), so my donor will need to be my size or smaller. And I have HLA antibodies, which I developed during my pregnancies. HLA antigens are part of the immune system and in my case, this specific antigen occurs in 78% of the population. So, 78% of all donors are not a match for me — instant rejection. Among the 22% of donors that are available, we still have to match for size, blood type, etc.  To deal with the size problem, there’s a strong chance I will get only one lung. A single lung transplant would allow the surgeon to use a larger lung than would be possible if he was trying to fit two lungs into my chest. If I do get a single lung transplant, they would leave the less-diseased lung (my left) in as a “place holder” to keep my chest cavity from collapsing.

All of this leads to the essential and yet unanswerable question: how long? Masina, my transplant coordinator gave me the best answer she could — I might get the call the day after I’m listed, or it could take several years to find a match. Of course, I don’t have several years, so I will continue to pray that my match comes through while I am still healthy enough to receive it. I’ve been thinking in the abstract about “the list” for two and half years.  Now that it’s a reality, I am feeling overwhelmed for the first time. A lot excited, somewhat scared, and a nagging sense of guilt that my second chance will come at the loss of another’s life. So many things to sort out. Luckily, the transplant program includes social workers and spiritual counselors to help me work through it all.

Throughout this whole journey, I’ve felt strongly that there is a plan for me.  The first part was to make me a better human being, a better mom, wife, daughter, sister, friend. I think I’ve grown immensely as my priorities have shifted, fallen away and emerged anew to reveal the simple truth about what is really important in life (love, relationships, the things that bring me joy).

The second part of that plan — getting me to this point — has progressed quickly. Until I saw my LAS score, I just didn’t realize (or didn’t accept) how sick I am. I’ve been dancing on the knife edge, but no matter what hurdle appeared before me, somehow I’ve maintained equilibrium. In fact, every hurdle has actually pushed me forward.  My broken ankle helped to bust through a weight plateau and I’ve dropped 23 pounds since September.  Even my evaluation at Barnes, dramatic as it was, turned out for the best.  The 4-day eval started off on Monday this week with blood tests, a chest xray and an EKG. All went well until the EKG.  The tech ran a strip, left the room, came back to run another strip, left the room, then came back to run a third strip. She kept asking how I felt — I was fine.  The tiny room suddenly filled with people and someone was shoving baby aspirin at me. The EKG said I was having a heart attack. I knew I wasn’t, but we went to the ER anyway. While everyone in the ER agreed I wasn’t having a heart attack, they admitted me for observation and to do a heart cath the following day. The cath went smoothly and my arteries are beautiful. Thank God for statins and a timely change in diet!

Since I was already there, it made sense to simply complete my work-up as an in patient. Over the course of two days, they finished all of the testing and delivered my transplant patient handbook to me before I left the hospital. The blessing here? Four days of outpatient testing, running from floor to floor, sitting in crowded waiting rooms and driving back and forth in frigid weather would have done me in. As it was, I got to breathe that lovely high pressure 100% pure hospital oxygen and be escorted from test to test with a nurse in tow (because of my high liter flow, a nurse was with me all times).

Blessings have surrounded me throughout my journey, and I know they will continue. I have faith that when the time is right, everything will happen just as it should. Until then, I will wait patiently and prayerfully (okay, we’ll see how long the patience lasts!).  As I get into the routine of being on “the list”, I will post about my experiences.

In the meantime, for those of you who hope to one day get on the list, here are a few things to think about:

  1. Work hard to get to your goal weight as quickly as you can. My weight is what held me back from being listed earlier.
  2. Get active. Start pulmonary rehab, or at the very least, start walking.  Fitness and strength will be essential to get you through the transplant and recovery.
  3. Stay positive. Your attitude is paramount. Celebrate every victory, no matter how small. Focus on what you can do rather than what you can no longer do.
  4. Surround yourself with a team as committed as you are. If your doctors don’t know anything about PF, find ones who do. Join support groups to talk with people who are in your situation and can answer your questions (check out the Resources page for links). Ask your family and friends to help.
  5. Have faith. You can control your own behavior, thoughts and attitude, but some things are simply beyond us. My faith has given me the patience to accept and deal with these unknowns.