Bone Marrow Transplant: Removing the Mystery and The Minority Match Gap

It’s early afternoon of spring 2014 and I get a text from my best friend:

‘Hey, just letting you know I’m in the hospital getting a blood transfusion’

Being the nurse that I am – I immediately call her and say “um..what??”

My 26 year old best friend is living her best life in Baltimore, MD as an educator. She’s going to Orioles games and obsessing over Baltimore Raven football – never mind the amazing food and bev scene of Baltimore. My best friend does not need blood transfusions…

A little back story on her – Erika, by the way – when she was in college she was diagnosed with ovarian cancer. She had surgery and chemotherapy. My initial thought was her ovarian cancer had returned. But that was far from the case.

Turns out what made her realize she needed a blood transfusion was the moment she passed out from a bleeding uterine fibroid. Or rather, woke up on the floor.

Erika passed out on the floor in a pool of her own blood.

This is not normal.

Nothing about bleeding to the point of losing consciousness is normal. She spent the next several weeks in the hospital while they tried figuring out what was going on.

She was eventually diagnosed with Aplastic Anemia.

A Plastic What?

If you don’t know what Aplastic Anemia is – simply put your bone marrow starts to suck at its job.

There’s no plastic involved – plastic in this sense refers to the Greek word for growth. Throw the letter ‘a’ in front to signify without and you’ll have the basic understanding that important cells in Erika’s body were not growing like yours and mine are.

Your bone marrow creates three vital blood groups:

1. White blood cells – your infection fighting cell
2. Red blood cells – your oxygen carrying cell
3. Platelets – your stop bleeding cells

If your bone marrow starts to fail, these three blood groups will start to fall below a safe number. There are many potential causes of Aplastic Anemia – but most people develop it for unknown, or idiopathic, reasons.

Fight, Breathe, Patch

These blood groups are the building blocks of life and you can get really sick if they are out of balance.  

White blood cells are your warriors. They are comprised of many other cells – neutrophils, lymphocytes, monocytes, etc. This collection of cells is constantly surveying your body and looking for intruders like viruses, bacteria and allergens. That little sniffle you developed last week? Your runny nose was made of white blood cells that are fighting whatever viral junk you caught from your coworker. Those hives you get when poison ivy gets up close and personal? They’ve been triggered by your immune system to fight the toxins on your skin.  

Red blood cells carry oxygen throughout your body. Hemoglobin specifically – and if you’re running low on those little oxygen tanks – things like breathing, thinking, walking become a lot more difficult.

Platelets are your body’s patchwork. When you’re bleeding from somewhere – platelets arrive and start forming little blood clot beaver dams to slow and eventually stop the bleeding. They help the scab form on your skinned knee and they keep that pesky dry-aired winter nosebleed from gushing for hours.

When Your Fighters go AWOL

In addition to Erika bleeding from low platelets and passing out from low red blood cells – a few months later she also encountered something called sepsis.

When your white blood cell count is low, your risk for infection is high.

She was carving pumpkins for Halloween when she realized she was feeling hot and clammy. She then quickly realized she had a fever. Normally a fever acts like a siren to your immune system screaming

‘Hey guys, Erika needs our help! Something has breached the perimeter and we need to rally the troops!’

Having your bone marrow function compromised is like calling 911 and no one answers.

Erika’s bone marrow wasn’t working so there weren’t many fighter cells floating around to hear the call to arms. This allowed bacteria to quickly move in and take over.

When someone has sepsis, or becomes septic, this means an infection has become so severe it’s made its way into your body’s interstate system – your bloodstream. Sepsis is a dangerous condition which kills over 270,000 Americans every year and one out of every three hospital deaths is due to sepsis.

Erika became so sick she had to go to the Intensive Care Unit and she lost so much muscle mass she couldn’t walk. Her body was literally and figuratively defenseless – meaning every day functions had to be supplemented by:

• IV antibiotics
• Blood products – Red cells and platelets
• Oxygen
• Liquid nutrition through a feeding tube in her nose
• Nurses, PTs and CNAs helping her with all movement and functioning

Erika spent several more weeks in the hospital learning how to walk again before she was discharged home a second time.

How Do You Treat Aplastic Anemia?

Now that you’ve been brought up to speed on what Aplastic Anemia is and how it can affect your body – you may be wondering what can be done? The only way Aplastic Anemia can be cured is by a bone marrow transplant. Sometimes someone can harvest their own cells to be infused later – an autologous transplant – but in Erika’s case, she had to have someone else’s cells – an allogeneic transplant.

A bone marrow transplant consists of infusing healthy blood forming cells into someone who needs them. This is done through an IV like many other treatments including red blood cell transfusions. In order for this transplant to occur – a couple things have to fall into place:

1. Erika has to have very intense chemotherapy to remove all of the blood-making cells she has in her body
2. Erika has to find someone who she is compatible with in order to accept their blood-making cells

The chemotherapy regimen is several days long and very aggressive. In order to have this chemotherapy, you have to stay in a specially designed hospital unit that has many precautions in place to prevent infection. Patients are usually there for at least a month – long enough to start getting mail!

Finding A Match Is Not As Easy As 1,2,3 – or A, B, O

Finding a bone marrow match means finding someone who has cells that are very similar to your own. It is more complicated than a blood transfusion which mostly looks at A, B, and O antigens. In order to match as a donor, both people have to have similar cellular markers – or tiny proteins on their cells. These proteins create the identity of your cells so your immune system can recognize them as your own. The goal is to find someone with similar enough blood cells to trick your body into thinking their cells are yours – so they won’t start attacking them.

The first place a patient looks for a match is their family members, but this only works about 30% of the time.

That means nearly 3 out of every 4 patients needing a donor have to rely on someone who is not related to them.

Thankfully, Erika’s sister – Bianka – was a match and saved Erika’s life.

Bianka and Erika 6 months post transplant

Erika successfully had her chemotherapy and transplant in December of 2014 and was given a new life. Bianka donated her bone marrow cells during a short procedure and those cells were prepared and then administered to Erika. Bianka’s cells went to work and built a new immune system, new oxygen carrying red blood cells and patch making platelets for Erika to use.

She is now approaching five years post-transplant. Five years made possible because of Bianka’s cells.

Finding An Unrelated Donor – And Becoming One

Since most people don’t find a match within their family, they have to rely on the National Marrow Donor Program to find a donor. There are registries where strangers all over the world can provide a sample of their DNA to be placed in a database.

The registration process consists of using a buccal swab – think giant Q tip – to swab the cheek of your mouth for saliva. This sample is then sent and analyzed into a large database. It’s not painful or invasive and can even be done in the comfort of your home. The registry will mail you the swab and kit and you don’t have to interact with anyone!

There are also registration events that occur and you can look up to see where one is being done near you. That way you don't have to worry with mailing anything or filling any papers out – they can do pretty much all of that for you.

Closing the Minority Match Gap

If you’re white, you have almost an 80% chance of finding someone on that registry who matches with you. Taking into account the 30% chance of finding a family member match and then the 80% chance of the registry having a match – if you’re white, the odds are fairly good.

If you’re  African-American, that number is less than 25%. Erika is African-American. This means if Bianka hadn’t been a match – her odds were lower of finding someone in the registry who is a match.

Even if Erika had endured the chemotherapy and successfully removed all of the illworking blood cells in her body, there would have been a large possibility that nothing further could be done. This does happen – people undergo chemotherapy, get bills, crappy food and mail to their hospital room, and they wait.

And wait. And wait.

Waiting for a match to appear on the registry to give them that chance to continue living their life. The chance to eat more crab cakes and cheer on the Baltimore Ravens. The chance to make a difference as an educator, move to new cities, and support friends in hard times. The chance to fall in love, get their heart broken and fall in love again.

Finding a match doesn’t mean their life will be perfect – it means their life will go on.

If you're African-American you can help bridge the gap of available donors for people of color in need of a transplant like Erika. Your ethnicity and unique cells may be one of the few that someone can match with in order for a new chance at life. Your choice to send in your giant Q tip could mean hope for a child, mother, grandparent, or brother.

The easy and selfless choice to join the registry is something easily forgotten as the days pass after you mail it in, but could mean the difference in a person's every day after transplant.

How Will You Feel When They Call?

If you register by either going to a registration drive or by mailing in your cheek swab – how will you feel if a hospital calls and says you’re a match? Is it scary, confusing, or inconceivable?

I know it can feel overwhelming to think about hospitals, chemotherapy and even blood in general. It’s not something most people want to think about. Worrying about blood counts and infections are not great first date conversation starters.

But that’s the beauty in the registry – once you’ve sent your sample it – you don’t have to think about it. Your donor registry is present and accounted for, always waiting just in case. Waiting to be called when someone else’s bone marrow is no longer in service.

Waiting for you to be the voice on the other end of their 911 call.

Erika has made spreading the word about Be The Match one of her post-transplant missions. Her and her sister are dedicated to bringing awareness to the minority gap when it comes to representation on the registry. If you are interested in learning more about how to register- please go to www.bethematch.com to learn more!

Erika a few months post transplant with her new hair, eyelashes and eyebrows growing

Erika and me on my birthday - 2018