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A Bloody Mess: Or, Why I’ve Been in the Hospital for 12 Days

Medieval Hematology Joke
It’s not Ebola.

It’s also not Leukemia. In fact, that’s how the phone call that changed my life began.

October 23, 9:25AM: Phone rings in hospital room:

“Kevin, this is Dr. Nassir. You don’t have Leukemia. You don’t have cancer. What you have are two rare blood disorders. You have PNH (Paroxysmal Nocturnal Hemoglobinuria) and Aplastic Anemia. PNH is destroying your red blood cells and puts you at risk for deadly blood clots, while the anemia means your bone marrow is depleted. In fact, it is severely depleted–a normal guy your age should have 35% bone marrow–

You have 5%.”

Dr. Nassir told me he’d gather a team of rare blood disorder experts, and get me more info later in the day.

You may find it odd he delivered that news over the phone. Well, my wife and I have a theory: Dr. Nassir, my Hematologist-Oncologist, is known for only visiting the hospital after midnight. We’ve actually only seen him between midnight and 1 AM. So, he’s only seen only at night, and he’s made BLOOD his life’s work…do I have to draw you a picture? The guy’s a vampire.

Dr. Nassir and I

Dr. Nassir and I

Anyway, after some Internet rare blood disorder cramming (have a seat, if you’re about to do the same), I spent the morning pacing the halls of Cedars-Sinai, trying to get my head around my diagnosis. On the one hand, I’d rather have what I have than Leukemia, which was what the doctors and I were fearing. On the other hand, I’d also rather spend a solid year being kicked in the nuts repeatedly while ex-girlfriends belittled my penis size than have Leukemia.

After a hospitalized week where the rug was pulled out from under me, to be diagnosed with two very rare blood disorders–you’re more likely to WIN AN OLYMPIC MEDAL than end up with PNH– the dearth of clinical history means still more uncertainty.

As a wise, spiritual man told me recently, “Human beings can handle anything, but uncertainty is the hardest. We crave control.” There’s nothing harder than not knowing what’s going to happen. But that’s life for all of us–it can change in a manner of minutes. I went to the Emergency Room on Sunday October 19th, still elated from my Oktoberfest birthday celebration the night before.

photo (3)

photo (2)

photo (1)

I decided to blog about all this because:

– I want you, the people in my life, to know what’s going on. Explaining all this crazy, at times life-and-death blood stuff over and over takes its toll. I’d love to get to a place where I can have FUN conversations with people again, know what I mean? So I figure if I explain everything here, everyone who’s interested will know my status by the time we talk.

– I haven’t done much writing since I’ve been in here, and that’s a problem. It’s good to get back to work and focus my mind–I think it’ll be a big part of keeping me sane in the weeks and months ahead. Writing about what’s on my mind helps me to make sense of it, helps me find connection, and allows me even to see the humor.

– In sharing this incredibly trying saga, I hope that the next person who goes through it can take some comfort and learn from my experience. Last week was a total nightmare, but this week has been a little better, with a plan in place–a plan, and lots of alarming conversations about blood counts, a few additional transfusions, and a chemotherapy regime that’ll probably make me sterile (note: I got to do some “family planning” for the sperm bank, so I’ve got that going for me, which is nice). Hopefully next week will be better too, but again…uncertainty!

NO.

NO.

I’m 32 and did not expect to have to deal with this stuff. No one does. I know I’m not the only person going through this, but PNH and AA are rare, and I’ve yet to find many accounts from the trenches of the fight against them. So, in the interest of keeping friends and family informed, here are the answers to some frequently asked questions:

1) “So, how ya doin?”

Physically, at this moment, I feel 100% fine. It’s the weirdest thing, to have two life-threatening conditions and not show any signs of it (aside from some strange bruises).

Emotionally, it’s been a process. I’m working my way through the stages of grief. I’m exhausted from constant stressful talks with Doctors and Nurses, who bust into my room with no warning, at all hours of the day, giving blood transfusions in the middle of the night and bugging me every 30 minutes for vital sign checks, blood draws, shower reminders.

Shit can be really, really dark around here at times. But I make sure to have a good laugh every day. I meditate. And I remember the words of Rust Cohle: “You’re looking at it wrong. Once, there was only dark. You ask me, the light’s winning.”

My wife Stephanie makes it easy to remember the light’s winning–like Peter Quill’s father, she’s an angelic being of pure light. She’s been by my side every step of the way, spending most nights and days at the hospital. I am in awe of how she weathers this storm of suck on a daily basis, and has the strength to bring me all of the love, support, courage, and LAUGHS I need. All things considered, I’d say we’ve been enjoying our second honeymoon at the all-inclusive Cedars-Sinai resort.

2) “What kind of danger are you in?”

Significant danger.

PNH can lead to deadly blood clots and other complications. 10 years ago, average life expectancy with PNH was only about 5-10 years after diagnosis. Recent drugs have improved that outlook and neutralized PNH’s effects. I’m on one of them (Soliris) now, and we expect it to keep the PNH at bay, though it is one of the most expensive drugs on earth and I’ll have to get infusions every other week for the rest of my life.

That leaves my severe Aplastic Anemia, which has a five-year survival rate of about 70%. The effects of bone marrow failure are wide-ranging, but I’ll try and summarize. White, Red, and Platelet cells are all created within your bone marrow. Aplastic Anemia and other bone marrow disorders (like Leukemia) result in a deficiency of all of these cells.

Low white cells mean an increased risk for infection. Hence, I have to wear a mask when I leave my hospital room, and I can’t be near sick people.

Anemia Cartoon

Low red cells mean not enough oxygen in my blood, resulting in me getting light-headed often. It probably results in other, worse things, but lets move on.

Platelets allow your blood to clot. If you get a cut, platelets stop the bleeding. A normal platelet count on a CBC (Complete Blood Count–they draw this once a day) is between 150 and 450. My count has been as low as 10 these past couple weeks–I’ve had two transfusions to boost them up. They’re fine for right now (37), but when they get to 10 or 20, I have to be extremely vigilant about the possibility of internal bleeding.

3) “What’s the Prognosis & Treatment?”

I plan on living a long time. Believe me, I do. But this is some scary shit. It’s a little less scary knowing that the doctors have a plan, but a positive outcome is not guaranteed, and none of these treatments purports to be 100% effective.

I’m hoping upon hope that Soliris (Eculizumab) neutralizes the PNH and allows my bone marrow to flourish once again, but this is far from guaranteed. Soliris/Eculizumab is only prescribed for PNH, not Aplastic Anemia. My doctors hypothesize that the AA was caused BY the PNH, so there’s a CHANCE this one medicine will clear up both. If this happens, I would throw a party that makes Mardi Gras look like Bible Camp. (Note: I will probably wear a mask to this party).

If Soliris doesn’t clear everything up, the next step would probably be ATG, an immune-suppressive therapy. That can be pretty debilitating, as they essentially knock out my immune system, in hopes that’ll spur it to rebuild itself. This treatment usually plays out over a period of months.

If ATG doesn’t work, we’ll be thinking about a Stem Cell Transplant (aka Bone Marrow Transplant). This option could CURE both conditions, or it could kill me. Like everything else with this blood stuff, it’s complicated. I’ll try to summarize:

Snowman Stem Cells

First, they need to find a Tissue-Type Match. They’ll start with my sister (a 1-in-4 chance for a match), then widen their search to the donor registries. This can take a long time. Sibling transplants are considered less risky (5-10% mortality) than unrelated donors (15-20% mortality).

If I get a transplant, I’ll be in the hospital for about a month. First, they’ll use some pretty strong Chemotherapy to REALLY knock out my immune system, preparing me for my shiny new one (well, I guess it’s technically “Used”, but it’s new to me).

Then, they’ll infuse me with the donor’s stem cells.

Then, I’ll park my ass in the hospital, basically under quarantine so as not to get sick, as the new-to-me immune system builds itself up. There’s a high risk for infection, and most transplant patients get sick at one point or another. A roller-coaster ride is to be expected.

Evil blood cell

The big fear is something called Graft Vs Host Disease (GVHD). That’s when your old and new immune systems turn on each other…this can be bad news.

The first 100 days can bring what’s called Acute GVHD. This is the less life-threatening version. From 100 days to 400 days is where things can get really fucked up, with Chronic GVHD. Chronic GVHD brings most of the mortality.

Therefore, a Stem Cell Transplant is NOT a magic bullet. Or more accurately, it IS a magic bullet that you get shot with and wait a year to see if it decides to kill you or not.

The bright side: If you make it through to the other side of this, you’re cured.

Thank you for reading this far, I know it’s all very heavy. I’d love to make a few more jokes and laugh it off, but there’s no getting around how long and hard the road ahead could be.

The good news: the odds say I’d “probably” survive the transplant. Somehow that’s more distressing than comforting. I mean, if you boarded a cross-country flight and the pilot said “Welcome, ladies and gentlemen. As we prepare for takeoff, I’m required to inform you that this plane has a 20% chance of exploding in a fiery cataclysmic crash before we reach JFK. The good news is, we’ll probably make it”–you’d trample everyone on that plane to be the first one off, right?

Well, that’s not an option for me right now. All I can do is listen to my doctors and follow their best recommendations. I feel powerless, at the mercy of these diseases and how they interact with my treatment, but I take a lot of comfort in the fact that Dr. Nassir and Dr. Lill (a rare blood disorder/transplant expert) are the best possible doctors I could’ve landed with. Dr. Nassir may be a vampire, but he’s also a beast–the war stories I’ve heard of his saving cancer patients would amaze you. Dr. Lill is at the top of his field, and one of his severe Aplastic Anemia transplant survivors actually became nurse here at Cedars’ Oncology wing, 8 years after her transplant. I’ve met Jenny, and she’s a huge inspiration to me.

survivor-logo

I’ve got a long road ahead of me, but all I can do is put one foot in front of the other and stay grateful for this beautiful life I’ve been given. I take comfort in the fact that, whatever happens, I’ve spent my adult life living in the moment and making the most of every day. This may sound cheesy to some, but it’s allowed me to stay happy, and not be paralyzed by fear, grief, and sadness in this stupid hospital.

4) How’d you end up in the hospital in the first place?

This is part of the longer story of my first few days in the hospital, which I plan to get into when it’s not quite as raw.

Short version: Sunday morning, 10/19, after breakfast, I felt some phlegm in the back of my throat. I spat it into a tissue, and it was quite bloody. I freaked. For the next two minutes, all the saliva I spat was RED. We rushed to the emergency room, where the bloody spit continued. They took a blood draw, the results were alarming, and here we are…

5) What can I do to help?

Right now, you can comment and/or “like” this post. (Don’t worry, I’ll interpret it as “I like this positive outlet you’re finding on the Internet,” and not “I like that you have contracted two life-threatening diseases.”) This will help ensure my post gets seen by family and friends–I’d rather people hear what’s going on from ME, and not thirdhand.

Humbled as I am by this experience, I’m no longer shy about asking for help. I will take whatever encouragement you want to give. And it’s okay to say “OMG THAT SUX,” because yes, friends, this very much sucks…but, when loved ones tell me I’m not going through this epic suckitude alone, it has a way of really picking up my spirits. Believe me, your words are comforting. Don’t stop.

And don’t stop making jokes and sending me stupid videos, pictures, memes, whatever. I need as many laughs as I can get.

save_a_life_join_the_registry_bone_marrow_donor_magnet-p147118528663617468envtl_400-300x300

You can also help in a very concrete way–donate blood and get yourself on the bone marrow donor registry!

Both are extremely simple to do, carry no risk to the donor, and can very well save a life. I plan to gather all of the relevant instructions in my next post.

Stay tuned, people–I promise to try and keep everyone posted on how I’m doing in this battle.

Kevin

Comments

comments

40 Comments

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

  1. fiona says:

    Damn dude. I’ll be sending healing thoughts your way. Thanks for sharing your experience. I can’t imagine how you must feel. Stay strong – you can beat it! -Fiona

  2. Adam Bagger says:

    Beautiful writing, dude. Some of your best work. You’re one of the strongest people I know, a true inspiration. Tessa and I are here for you and Steph.

  3. Joan Linden says:

    Kevin:
    You are so courageous to share all of this so openly.
    Steve & I are thinking positive thoughts.
    Stay strong!
    Looking forward to future posts.
    With love & prayers:
    Joan (Abby’s mom)

  4. Sue Duncan says:

    Hey! I love Sarah and Neil and through the strange way my brain works I have decided I now love you. I’m sending you support, prayers and genuine delight in your ability to capture your situation and move forward.

  5. Kris Stewart says:

    Wow- I have a strong belief in the power of faith and prayer. All my prayers are with you all as you go through this. Stay positive, stay strong and stay determined. God does not give us things we cannot handle–all my love to you and Stephanie.

    I will rally all my family and friends in prayer for you.
    Aunt Kris

  6. Dear Kevin, as one of your spiritual advisors and someone who cares about you and Stefanie so much — keep writing – it is good for you and for us – sending you celtic prayers and jewish prayers for healing and strength as you navigate these rough waters. I’m imagining you and Stefanie under the chuppah just glowing with joy – your love is strong and the two of you have enormous support. We will walk with you.

  7. Stephanie Wilson says:

    Holy crap Kevin. I really dont know what to say. I know ypure an amazingly strong person and you will come out of all of this healthier and stronger. Sending all my love and a million hugs from NJ.

  8. Wendy & Rob says:

    Like we mentioned in other post, you will kick those thing’s a** big time! Sending you, your wife, and family lots of hugs.

  9. sandie chester says:

    Friend of Sarah and Neil… Your writing is wonderful. Sucks that the topic is so ugly.
    Sending healing thoughts and strength as you travel through this long trail.
    Thinking of you~

  10. Kathleen Cogan says:

    Be strong and keep up the positive attitude! I’m grateful for the technologies and drugs that are available to help today! We’ll be praying for your recovery!!!

  11. Angela Laguardia says:

    Kevin, you rock! Loved the way you described everything in fervor, with dashes of humor here and there. It most certainly does suck that you have 2 grade-A rare illnesses that is defining what your life may look like, but knowing you and your family – you stare right back at those illnesses and laugh.. Humor keeps me sane when dealing with my own diagnosis of Usher’s syndrome, it’ll definitely keep you sane as well! Keep up that tough McDevitt spirit and laugh when you can… Love to you and your family

  12. Rakel Gee-Burney says:

    Kevin prayers to you and you family.

  13. Sam Braff says:

    Dude. Our thoughts and prayers are with you.

  14. Mary Gachot says:

    Kevin,
    Stay strong as you and you’re entire family have always been. You’re an amazing person, son, friend…..& so many of us love and respect you. Your attitude is amazing and inspiring. Keep that smile & stay strong. My prayers are with you- hope to see you soon.

    The Gachot Family

    • Lavon says:

      Haha. I woke up down today. You’ve cheeerd me up!

    • http://www./ says:

      Martin Bílý: Pokud to bylo na mne tak – samozÅ™ejmÄ› si ono uvedené nemyslím. Jen jsem chtÄ›l rozvinout určitý styl myÅ¡lení, který se mj. v této kauze projevil. A tím ukázat, že se tím vynoÅ™uje zásadní otázka – kde je ta hranice? Kam až můžeme zajít? Existuje vůbec nÄ›co, co by se dalo označit pojmem "objektivní právo"?V. Loutocký

  15. Mary Gachot says:

    Kevin,
    You wanted funny….so here goes. Remember when you grew the largest afro ever. We could spot you a mile away! and remember when you and Christopher almost blew up your house when you were young kids? Funny now, not so much then-

    AND- this does SUCK!!! and why YOU? This sucks for YOU & everyone who loves you.
    Please visit us again when you’re in the area. What a pleasant surprise when you stopped by last time.

    Mary Gachot

    • Kevin says: (Author)

      I actually don’t remember almost blowing up the house (my mischief memory bank is on overload), can you jog my memory?

      Will see you guys soon, I’m sure.

  16. Stephanie Wilson says:

    My last comment is awaiting moderation, not sure why. Sending you love from NJ. I know you’ll stay positive and that you are surrounded by some amazing people.

  17. Kelly osmun daugostine says:

    Hey Kevin…don’t know if u remember me from noecker and high school..just happen to stumble upon this through Facebook, but I’m so sorry about this and wanted to let you know I’m praying for you.. And also you are an incredible and funny writer , seriously so talented!

  18. Peter S Fiek says:

    Kevin,
    JoAnne and my thoughts and prayers are with you. Hopefully the initial treatments are successful and you can go back to writing about more pleasant topics. On a side note, I don’t know exactly what is going on in the 3rd Oktoberfest photo but those paddles may explain those strange bruises.

  19. CC Leigh says:

    Wow, Kevin, I just read your story. How heartbreaking. I totally relate to the challenge of uncertainty you are facing, having walked hand in hand with Michael as he encountered his cancer diagnosis. Also to the grieving you and Stephanie must be experiencing, the grieving that goes with having to let go of the “happily ever after” dream. It’s really tough. Of course, life is always uncertain and no one ever knows what is around the next corner, but most people get to live with a degree of ignorance that is no longer true for you guys. I feel for you and if it would ever help, I’m happy to talk. Jeff and Allison know how to reach me. Meanwhile, you and yours will be in my prayers.

  20. katrina matheson says:

    Hi there,
    Reading your story reminds me of something I went through. I’m going to tell what happened to me, and take from it what you will.

    Last year, at age 33, I suddenly developed abnormal bleeding and bruising and was diagnosed with antiphospholipid syndrome – an autoimmune-related blood disorder that also leaves one prone to clotting.

    At some point during the battery of tests for the blood issue, I gave up gluten because I was also having a slew of other health problems and symptoms, and it was suggested that I try it.

    Shockingly, my blood condition reversed itself about 2 weeks after going off gluten. My hematologist told me that his best guess was that it was gluten-induced. If your conditions are categorized as auto-immune related illness then I would suggest that you try removing gluten (and all grains if possible) from your diet. Believe it or not, gluten can be catastrophic for some sensitive to it, even without Celiac.

    I am a real person and this really happened to me. Email me if you have any questions or need resources.

  21. jp garzone says:

    Kev. You are a beast. I know you are going to conquer this and come out the other end a stronger person, and an even funnier person. I got your back, McDeezy, whatever you need, blood, bone marrow, linguini and clams (I makes that real good). See you soon, brotha..

  22. Caroline & Justin Brown says:

    Kevin – your writing is amazing. So funny yet heartfelt – a tough combo to tackle.
    We are wishing you a speedy and healthy recovery. You are in our thoughts and we send our love to you, Stephanie & the family!

    Love,
    the other gangsta’ rap lovin’ couple :)
    Justin & Caroline

  23. Cindy says:

    Hi Kevin,
    Love your sense of humor thrown in-between grueling moments of sucky reality…I am friends with Neil and Sarah back here in Philly…you have another one here rooting for you and following along your blog…love your writing and your live every day in the moment attitude..way to go…
    Cindy

  24. Laurie Levin says:

    Kevin…you nailed it: learning how to live with the”uncertainty”–the unacknowledged uberforce in all of our lives–is a big part of what this journey is all about. Take comfort. Once you get that, you’re on your way to making this difficult journey a growing, healing, and productive one. Peter and I know this territory only too well–from all sides–and are just a phone call or visit away. Stay strong; stay wise; stay true to yourselves.

  25. JoAnne Fiek says:

    Kev, you really put the fright back into Halloween this year.
    Thank you for so bravely sharing your experience. I will be “lighting candles” for a complete and speedy recovery. All the very best to you and Stephanie. xoxo

  26. Colin Scibetta says:

    This is an amazing piece — heartfelt, heartbreaking, inspiring, hilarious, and very real. Thanks for sharing.
    I am one of Matt’s good friends from our high school years and also happen to be a physician in San Francisco. Matt was telling me about your situation a few weeks ago, and I’ve been thinking about you and Stephanie a lot since then. I have taken care of several patients with AA (fewer, but some, with PNH), and your perspective and experience with the uncertainty of it all really resonates with me. I will be sure to share your website to patients in the future, assuming thats cool with you (which I’m sensing it is). I have no doubt that it would be an incredible source of strength for many people going through the same thing. Thanks for sharing your story. You are awesome.

  27. Sue Mirkin says:

    Kevin, all of our Love and Good thoughts are with you (Mitch, Sue, Jeremy, Mara). We’re glad you’re doing this blog. If you’re interested, I’m happy to make you flower essence combinations that may help the spiritual, psychological aspects of your current journey (these can be applied to skin or sprayed in room.) Additionally, I’m off to a workshop to learn the Reconnection, another healing technique which I can do remotely (you can learn more about this on their website). If interested, let me know. Love us all. Sue

  28. Elyse Madgy Friedman says:

    Kevin,

    My heart goes out to you and Stephanie. It is hard to belover all this occurred since we together in Ojai. Attitude really does make a difference and I can see you will fight your way through this. I will share your story and request my network registers at bethematch.org. Also will ask for some special offerings in my a Yoga Community.

    Much love, prayers and light,

    Elyse

  29. Elyse Madgy Friedman says:

    Kevin,

    I wrote from my cell phone but am not sure it came through. After I heard, I reached out to Stephanie. I am also B+ so I am happy to donate blood for you. I am having trouble getting my arms around the fact that less than a month ago we were hanging out at my daughter and Pablo’s wedding in Ojai.

    Attitude is so much of the battle and your attitude is great so I know you will do great.

    Let me know anything you need that I can provide. While I know you are in great medical hands, there are many doctors in my family everywhere in the US.

    With your permission, I will share your blog with friends that might have insight or offer you a smile.

    Anything I can do to help (except at the sperm bank – that is Stephanie’s job) – comment made hoping to make you smile.

    This truly sucks!

    Sending prayers, well wishes, great intentions and love,

    Elyse (Victoria’s mom)

  30. Yasmine says:

    Thinking of you lots and grateful for the calm, the jokes and the information along the way.

  31. Clancy and Erica says:

    Hey bud! The Baggers briefly filed us in the other night. Needless to say, shocked. Thanks for writing about this on your blog and breaking it down for us normal people to understand. We are thinking about you and sending you the good vibes. And we are really looking forward to that mardi gras party you promised. So hurry up and beat this shit. Please let me know if we can bring you anything or whatever.

    And I love that my photos from Oktoberfest made your blog… Even though you didn’t credit me. Jk. Jk.
    Take care bud. Stay positive. See you soon.
    Clancy and Erica

    • Erica (of Clancy and Erica) says:

      Words cannot express how inspired and in awe I am by this blog post Kevin; truly well done and deserving of a book mark on my computer — ya know, right between TMZ & Gilt Group — to make sure it stays in daily rotation. I can’t think of which moment made me more proud to be your friend — your bravery to put your arduous experience over the last few weeks out there for all to read, or you putting on Dave’s old ass wetsuit a few months just to paddle out at County Line when you forgot yours. Tough choice ..

      Seriously though, you are such a stellar human being and with that hottie wifey by your side, I’m pretty sure you can beat the piss out of this. Clancy and I here for you both, if not for anything but positive thoughts, good energy and more attempts at cheesy jokes by moi.

      Much love to you and Stephanie 😉

      Stay strong and #seeyouontheotherside

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