A Daughter’s Gift: Donating Stem Cells to Save My Dad Part 2

When I found out that I was going to be my dad’s stem cell donor, I was excited and nervous. I wanted to help him but I also wanted to know the process and everything that it entailed. The donor coordinators at Hopkins were very helpful and  set up all of the appointments for me. However, they didn’t have first hand knowledge of what really happened as a donor.

Luckily, I actually knew of a previous donor. My husband’s uncle through marriage had a similar diagnosis and treatment as my dad. And his donor was his niece. Her and I got in touch and she was the most helpful part of the whole process. She told me way more than the paperwork ever could. I didn’t know about the shots that I had to administer, didn’t know about the side effects of the shots, didn’t know how it felt to be hooked up to the machine that separated my stem cells from plasma. She told me all of that and more.

First, she told me that she would do it again in a heartbeat. So that alone helped put my mind at ease.

Then she explained that Evaluation Day at Hopkins was super easy, you just went to many appointments, had easy tests done, and gave blood. She explained that one of the appointments on Evaluation Day was to learn how to give yourself the shots. I actually didn’t know about these shots until she told me about them, and the thought of them made me stressed out. But she talked me through it. Her dad would administer them in her stomach early in the morning for 5 days leading up to donation day, that yes they did hurt but it was worth it, and she told me what kind of side effects she experienced and how she coped. She was very open and honest, and that is exactly what I needed. She even had screenshots of her side effects after each day of shots that she shared with me.

I already knew I wouldn’t be giving the shots to myself. I planned to have my husband administer them in my stomach, with my next door neighbor who is a nurse on standby in case we needed help. You have a choice of when you want them administered, they just have to be 24 hours apart (except on Donation Day, when they have to be given in the morning before your donation appointment). I chose evening since I am more of a night person and would only be relaxing and getting into bed later. Each day I received 2 shots in my stomach of Neupogen, which is a growth stimulant, in order for my body to produce more stem cells. Each day, I texted my donor friend and told her how I was feeling, how the shots, and my side effects.

My first day of shots was on a Saturday. We waited until after dinner, put the dog in his crate with a peanut butter treat, and headed upstairs to a room where we could close the door. I was nervous, scared, and not looking forward to it. I put on a podcast, closed my eyes, and hummed a little while it happened. Yes there was some pain from the shot, and as the other donor describes–more than a bee sting. But when it was done, we sat outside with a neighbor who is in the medical field and socialized. I took 1000mg of Tylenol before I felt any side effects so I could hopefully nip it in the bud. I was advised to do this by both a nurse on Evaluation Day and by the other donor. That night went pretty well with no real side effects.

The next day I started to feel achy, like when you have the flu. But there were no other flu-like symptoms. No stomach issues. I was eating and hydrating like normal, and even a bit extra. I made no plans to do anything social for these 5 days, and I worked from home.

As each day went by, the bone pain did increase, but I took Claritin and Tylenol as they told me to. I texted my donor friend who said this was all normal. She told me to take the Tylenol at exactly every 6 hours so that you can avoid feeling the bone pain, and I took her up on that advice.

After my 4th day of shots, the Tylenol wasn’t fully working anymore because the stem cells were increasing so much in my bone marrow, they didn’t have anywhere else to go, so there was a lot of bone pain. But I knew the next morning was my donation day and the last day of my shots, so I powered through.

I knew ahead of time what happened on Donation Day, both from my donor friend and from one of the appointments on Evaluation Day where they explain everything and have you actually lay in the bed where the donation occurs. So I was more than ready.

My donor friend gave me so much advice and shared all of her fears, anxieties, and truths, which made the process so much better. She was there for me and wanted to know my side effects so that she could compare

them to hers. And even though her donation was years prior, she took detailed notes so she could refer back to them. We kept in touch before, during, and after the donation. Two months after my Donation Day, we met in person. Even though I had never met her before, I felt so close to her because she had opened up her stem cell donation diary to me. We had sent a lot of texts to each other, and shared a lot of information that only actual donors could.

Having a donor friend was the most helpful part of this process. And I would gladly pass the torch and help out the next donor.

By: April Gottsagen
Bone Marrow Donor