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.

 

 

 

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 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.