What To Expect From a Bone Marrow Transplant

I received two bone marrow transplants this year and I was so surprised about how unknown and unclear the process was. Even after the doctors talked about it, and Be the Match gave information, it was really confusing for me and my close friends and family to wrap our heads around what to expect during and after. So I am writing a little to try and demystify the process and add visuals.

A bone marrow transplant is a complete transplant of a one persons bone marrow into another’s. In essence it is an immune system transplant — new cells: white, red and platelets. It is done for so many reasons now, but it is done through a vein, or a line that is placed in the transplant recipient’s body. Like this:

It is done through a bag of cells that is harvested from a gracious donor. They donate at their local hospital, or are flown close the the patient, after a ton of tests. They donate marrow or stem cells from either their arm, or a small puncture in their lower back, there is no “surgery” for either party. I found myself, and many people confused about this, as the word “transplant” makes think “cutting” or “opening” of the body. But nope, it’s a simple transfusion bag, like this:

After the cells are given you may have treatments, but the real name of the game is waiting for the engraftment to begin. That can take anywhere from 4–20 days. Mine took a very long time both times to kick in. But once it does it can feel very bad — like a flu but also you can swell, or not be able to eat, or not really be able to leave the bed. You can also become a little loopy, from meds or just being so out of it. During mine I thought the staff at MGH had put me in a BARN outside the hospital, which was obviously not the case. This is what my body somewhat looked liked during engraftment.

Swollen face made face almost unrecognizable, also had swollen throat and had to go on IV feeding.

Swollen feet with Neuropathy made walking very difficult for about 3 days

I think the very important part to say here though, is that after this short discomfort, the counts rise, and you start to feel better. And you very quickly will go home. Now this by NO MEANS indicates you are well and done!!! But getting out of the hospital is amazing, and being around your things feels good. However quickly after being home many may realize what an incredible toll this took on your body, and also you mind. Being in the hospital that long, dealing with all the emotions, really messes with a persons mind and soul. Don’t feel guilty, or upset with yourself for this — its an incredible part of the healing process, and you may be very fragile.

But believe me, you will be strong again one day. Don’t let the dark days worry you, know that the light days are coming. This is all I can promise to those of you going through this — both recipients and friends and family. Allow yourself to feel scared and worried, but allow yourself to feel the hope and excitement of “This is working” or “What if I (or my loved one) is getting better”. After all you have been through I am sure it is hard to feel that. I know for our family it has been hard to feel that after all the meds and tests and junk before. But be strong and feel the love from those who care.

Here is a bit of a visual journey of my last 100 days, a reminder that things can change so much, so always know a light day is right behind a dark day, and you can do this.

100 Days or 3 1/2 Months Between these photos, the left was right in the middle of engraftment and I barely knew where I was. The right I drove myself to my photographer/friends place and knew exactly who and where I was.

These two capture my return home. Still scared, unsure, but facing it as bravely as I could.

These three represent where I am now, a place of “new normal” where I still receive treatments, I still have a bald head which I wear, I also wear a wig — remember it is what YOU WANT. Have fun with your new look options!

And this last one, is a prayer for the future, for all of us transplant recipients. That we feel light more than dark, that we dream in hope not fear, that we walk with the wind at our backs and we believe in the power of ourselves.

In closing, the bone marrow transplant process is long, but beautiful if you let it be. Your nurses will become your confidants, angels that love you for being you. Your doctors will become you guides, giving you guideposts and signals along the way, your friends and family (who care) will support you in ways you never felt deserving of (and you ARE deserving of it).

So to all going through this process, be brave, have courage, and always remember there is light, right behind the dark.