The Blog

Making Plans: ATG, or Transplant?

Gr Canyon Raft4:45 am. A year ago, I got up before 5 in the morning, just to make a phone call. Actually, I made about two hundred and seventy-six phone calls.

Ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah. When was the last time you HEARD a busy signal? I still hear one, thinking of that morning.

For years, Stephanie and I dreamt of hiking to the bottom of the Grand Canyon and staying at the mythical hotel there, the Phantom Ranch. Tens of thousands of others shared our dream, which is why you have to call at exactly 5am to book…13 months in advance.

After hitting “call” repeatedly for more than an hour on two iPhones, I finally got through and booked a room for two nights, beginning March 22, 2015. We knew the school where Steph works would be closed for Spring Break, and figured I could arrange my freelance schedule accordingly.

“When else can we KNOW we’ll be able to take time off, a YEAR in advance?” we asked ourselves, thinking we had it all figured out.

A lot can change in a year.

Now, it’s looking like I’ll be on a much less scenic vacation this March, nursing a white blood cell count of zero at my favorite all-inclusive resort.


IT’S NOT ALWAYS FUN TO HAVE OPTIONS

To bring you up to speed—Soliris, the IV drug I receive once per week, is doing its job and neutralizing the dangerous effects of PNH. However, my blood cell counts have still been in a sorry state, thanks to Aplastic Anemia (AA). Blood and platelet transfusions still run my life and keep me hooked up to an IV at the Cancer Center for 8-9 hours at a time, sometimes. A second bone marrow biopsy (they kept me awake this time) revealed only minor improvements in my bone marrow—not enough to signify a recovery.

While I feel fine (aside from the chronic fatigue, the existential dread, and the fact that I occasionally fart blood)–ultimately, this treatment method is unsustainable.

angif-caught-between-a-rock-and-a-hard-place

Thus, Decision Time. The two treatments offered for AA are Immune Suppression (in the form of horse-serum drug ATG), and Bone Marrow Transplantation (BMT).

The ATG requires a week in the hospital, followed by 3-9 months of waiting for levels to return to normal. It works about 50-60% of the time and would only treat the AA/bone marrow failure, not my mutated PNH cells.

Transplant, on the other hand, is the only known cure for both AA and PNH—albeit one with a survival rate (not success…survival) rate of 80-90%, for those lucky enough to have a matched sibling donor. A Bone Marrow Transplant would mean at least 1 month in the hospital, for me. First, I’d receive a week of heavy chemo, to “nuke” my bone marrow and empty it out completely, making room for the Donor cells. I’d then receive Meghan’s cells via an IV, and spend the next three weeks waiting for the donor cells to “engraft.”

During this time period I’d essentially have no immune system, and be susceptible to infection. The people who die from transplant generally die from these infections, or the later complications of Graft Versus Host Disease (GVHD). It takes about 100 days, post-transplant, to recover, followed by a year of close monitoring for chronic GVHD, which can strike at any time and effect your body in a mind-boggling assortment of ways, some of them potentially fatal. On the plus side, there are ways to manage most of these complications.

Most importantly—post-transplant, my white blood, red blood, and platelet counts would return to normal–I’d be cured.

This is me, making big decisions.

This is what I look like, making big decisions.

So…just make a decision, right? Well, for better or worse, I’ve always been someone who has to examine a problem from every angle…

We’ve seen 15 doctors. Gotten 2nd and 3rd opinions from specialists at USC and City of Hope. Read all of the transplant and ATG research on the National Institute of Health’s web site. Talked to thriving transplant survivors, an ATG patient who’s living a very full life while managing PNH, and read terrifying transplant-gone-bad stories on marrowforums.org.

Though I’d leaned towards transplant since December, facing the decision head-on meant acknowledging the very real risks…

I’d be facing a 10%-20% chance of being deceased, and some day very soon. As I’ve said before, if you got on a plane and the captain announced you had a 90% chance of reaching your destination alive, you’d be trampling old ladies to get off that damn plane.

Sure, the doctors think I am young and relatively healthy, and the fact that I have a perfectly-matched sibling donor is a huge stroke of luck. But still…What if the presence of PNH causes adverse effects? How are things so completely out of my control? And how can I trust my body at all, after how it’s betrayed me?

Man…shit is real, in these streets.

I considered ATG. The fact that nobody really dies from it. Would I be CRAZY to go through with the transplant and risk leaving Steph behind? To say goodbye, after a decade of hard, lonely work, having never even made one of my scripts into a movie, or published a book? When there’s an alternative that won’t KILL me?

I bargained with myself, “Couldn’t I just try the ATG, and if it didn’t work, then do the transplant? Wouldn’t that improve my overall odds? And 3 extra guaranteed months of life—at least I could finish my short story collection…”

Of course, ATG has its own risks. 3 to 9 months of waiting for blood counts to recover would mean a boatload of additional blood transfusions and, with a suppressed immune system, a real risk of serious infection. Even in recovery, I’d still be tethered to my weekly Soliris IV, with a 50% chance that I’d relapse, or worse—progress to MDS or Leukemia. I might end up putting a ton of rough miles on myself before eventually doing the bone marrow transplant anyway.

There is one expert I haven't consulted

There is one expert I haven’t consulted

I reviewed every single thing a doctor had told me these past 4 months. Got lost in 5-hour Internet research labyrinths. Took extremely long walks, searching my head for clues—anything that would make this choice easy. Laid awake at night, fearing what could happen to me. The stress revved up my PNH and made the fatigue even more debilitating than usual. I lost control of my moods, snapping at people for almost no reason–“This must be what Kanye West feels like all the time,” I thought.

Eventually, I accepted that I have the shitty luck of having this disease…with either treatment, something must be risked. The alternative isn’t pretty. I thought about how Dr. Lill and the Brotherhood of Hematologists didn’t come to their conclusion lightly—if you’re under 40 years old, with a perfectly matched sibling, you go with the BMT.

And, after a heart-to-heart with my wife, I remembered how much I believe, in my gut, that a transplant will work.

I decided to go through with the Bone Marrow Transplant.

I’ll be admitted two weeks from now, and spend the month of March at Cedars-Sinai Medical Center. It’s terrifying to take this leap of faith and face my mortality head on, but ATG felt like kicking our problems further down the road. To turn down a chance to be cured, just to bargain for a few extra months or years…what if things progressed to Leukemia, at a point when we had kids to look after? My kids are going to need lots of supervision, if they inherit my mischief and pyromaniac genes.

So…I’ve spent my adult life taking risks—moving to LA, building a freelance business, writing screenplays on spec—what’s one more?


SORRY FOR THE BLOG SILENCE

Between 2-3 weekly hospital appointments (8+ hours, sometimes), the ups and downs of chronic fatigue, and the paperwork…I’ve also had to put my freelance writing & video projects on hold, and let a comedy directing opportunity pass me by. But, no use wishing things were different. Acceptance is one of the keys to all of this.

How about I do both? That Franklin dude lacked ambition.

How about I do both? That Franklin dude lacked ambition.

On the plus side, I started writing a new book series I’m really excited about—it’s sci-fi/fantasy, and it’s also a detective story with lots of big laughs. It might be a little bonkers, and you might need to accept that. Should be available later this year—I’ll keep you posted.

Right now, I’m just trying to do the things I love, and stay on an even keel. We may not be hiking into the Grand Canyon this year, but I’ve got my sights on another trip: June marks the 100th anniversary of the founding of Fairview Lake Camp in New Jersey, where I spent the best summers of my life as a camper, a counselor, and a unit director.

To be able to return for the Centennial Reunion would be more than a nostalgia trip—that place stoked my love for the outdoors, sharpened my sense of humor, and taught me how to be a leader. To be in nature, surrounded by the most fun-loving people I’ve ever known…that would make all the months of isolation worthwhile.

They say it takes about 100 days, post-transplant, to return to normal activities. The big alumni reunion comes about three months, or 90 days, after my transplant. Here’s hoping I’ll be a week or two ahead of schedule.

2002 Fairview Staff. I'm in the back middle, w/the luxurious hair--can you spot all three Fro Bros?

2002 Fairview Staff. I’m in the back middle, w/the luxurious hair–can you spot all three Fro Bros?


WHAT YOU CAN DO

It’s really awesome that people have gotten involved. Many of you have signed up for the Be The Match Bone Marrow Donor Registry–all of you people are the best. My brother Neil even held a swab session, signing up donors at his office. If you haven’t signed up yet, it’s super-easy to do from home and could very easily save a life.

My sister, Meghan, who is for real about to save my life, will be running in the LA “Hope, Steps, and a Cure” 5K for Aplastic Anemia, this April 25th in Long Beach. I know many of you are runners, it would be so great to have some more support on our team–Aplastic Anemia is a brutal, invisible disease, and we could really use your help raising awareness and funds for the fight. To get involved, email Meg.

Also, PLEASE keep donating BLOOD & PLATELETS. I’ll be getting transfused EVERY DAY during my one-month transplant stay. I also accept moral support: prayers, positive thoughts, likes/shares/retweets, Giants Super Bowl DVDs, and Spotify mixes. It works, and I feel stronger because of all of you.

I’m not sure how much I’ll be able to write and share during the transplant process ahead, but I want you all to know I am entering it feeling very positive. I’m in good hands with Dr. Lill at Cedars, and I’ve got a ton of support from family and friends. I know there are risks, but whatever comes up, I really believe I’m going to make it through. Stephanie and I will do our best to keep you informed re: my progress.

Love y’all.

Comments

comments

4 Comments

Got something to say? Feel free, I want to hear from you! Leave a Comment

  1. Hi,

    Came across your story through a simple Google search on PNH and reading it I recognize a lot of struggles I’m dealing with right now. I was diagnozed with PNH and AA 5 years ago and still alive and kicking :)

    I’m not on ATG and just waiting for the moment the doctors tell me it’s time to do the transplant. Though it is not without risk, I am (crazy I now) hoping it won’t be too long before they give me a go.

    I hope all goes well for you and that you’ll make the reunion in time. Keep strong and positive!

    Regards,

    Sabina
    (The Netherlands)

  2. Leslie Hasty Militzer says:

    Transplantation is a modern blessing. I understand your fears and hopes as I went through with my husband, George, a kidney organ transplant back in 1997. We were lucky enough to eventually have a successful outcome and he lived many years with improved health. Enjoy all your time together, every day, every moment. You are at peril right now, but the truth is that none of knows what tomorrow may bring and we only have today. We love you and send our blessings to you.

  3. Laurie Levin says:

    Hi Kevin. Just wrote the following to Jeff and Alison but then I read your blog and thought why the hell not write YOU and Stephanie directly? As you may or may not know, initially Peter’s 3 week stay at UCLA also involved chemo to wipe out his immune system, followed by isolation, restricted diet, and then treatment that diverges from yours involving the ICU for 5 days. Nevertheless, we wanted to share some of the lessons that we learned that made this difficult stay a wee bit more comfortable. Of course, every person and treatment protocol is different but perhaps the tips are generalizable, with approval, of course.

    1) Peter could not eat anything that was raw/uncooked but was, apart from the bland cooked-to-death hospital food, able to indulge in DOVE frozen ice cream bars. Good for the weight. Refreshing. And a not-so-guilty pleasure! Available in the hospital cafeteria in great abundance—all flavors.

    2) If you lose hair from the chemo—I did way back when and so did Peter—sleeping in a cotton ski cap (not itchy) helps keep the body/head warm. Surprisingly, hair = heat retention and the opposite is true, too. No wonder bald guys like to wear those goofy caps. Plus, it doesn’t help that hospital rooms are often kept on the cold side.

    3) Peter found out he did NOT have to wear his hospital gown 24/7 and was able to change into sweats/sweat-shirt/t-shirt, preferably with buttons, during the day or after his bath. Very normalizing not to have your butt hanging out when walking the halls. Keep your eye out for any style that makes it easier to navigate IV’s and other tubing.

    4) Getting a good night’s sleep is possible in spite of all the 2am 3 am 4am wake-ups to take blood pressure/blood draws/temperature/and just-for-the-hell-of it pestering. Yes these indicators are charted meticulously but Peter was so desperate for uninterrupted sleep that he spoke to the head nurse and his doctor about the scheduling and found out they could space the check-ups more reasonably. Worth asking if this is an issue. Also the lighting in the room can also be addressed/modified if it’s sleep disrupting. Who knew?

    5) We also cut visitors down to a minimum. Suiting up and anti-bacterial dousing wasn’t everyone’s cup of tea anyway. Wonderful intentions notwithstanding, not only do people pose an increased risk of infection, keeping up the “happy face” was unnecessarily tiring.

    6) Stephanie, too, would benefit from ramping up self-care during this period. Spending days/nights in the hospital is comforting for you both–it was for us– but also draining. My solution was to force myself take a day or partial day off once every 4 or 5. People close to us were happy to spell me so I could return refreshed.

    Bottom line…apart from the unsolicited advice..we are thinking of you all, looking beyond this passage with great hope and anticipation of positive results. Our love, and if you want to call Peter for insight from someone who’s been there…he’s available (310) 454-5270.
    xLaurie/Peter

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