Disclaimer: I am not a medical professional – This is my own personal experience as a bone marrow donor with BeTheMatch.
Happy Sunday and 1st day of July! As usual, the month of June totally flew by but that seems to be the theme for 2018 so far.
This weekly wrap will be a little different as I actually didn’t do a whole lot this week, but I wanted to share my experience of being a bone marrow donor.
First, let’s back up a bit. Back in 2007 I joined the BeTheMatch registry. They were at an event I was attending and had the cheek swab kits on site. I filled out information, swabbed the inside of my cheek, sealed up the envelope and gave it back to the representative from BeTheMatch. It literally took one minute of my time that day. Fast forward to March 31, 2018 (Good Friday) – I got the call that I could be a potential match for a patient battling cancer and agreed to undergo more testing to see if I would be a match. Later on that week I got a ton of blood work done and waited to hear back. In May I got the call that I was the best, and only match, for this patient and agreed to go through with the donation. I know the patient’s gender, age, location and type of cancer, but I cannot disclose that due to privacy reasons.
We agreed on a surgery date of June 25th, but I still needed to do two pre-surgical appointments to make sure that I was healthy enough to proceed with the surgery.
June 5 – This was my first pre-surgical appointment. Again, I got a ton of blood work done (about 15 tubes of blood total), got a chest X-ray and an EKG test. I also met with a nurse practitioner for about an hour to learn more about the surgery and to answer additional questions.
June 18 – This was my second and last pre-surgical appointment. During this appointment I had a physical (height, weight, blood pressure, etc). I also donated blood in case I needed a transfusion after the surgery.
Finally it was surgery day! Here’s how my week went:
Monday, June 25
Surgery Day! I arrived to the hospital at 9:15am and they started my IV. Around 9:45 I went back to a room to change into the hospital gown and I hung out there with my family until around 11:00am and then walked back to the OR with a nurse. I was given anesthesia within 5 minutes and then the surgery started.
I was also given this cute gift basket from BeTheMatch!
For the surgery I was on my stomach. The bone marrow is extracted from the hip/pelvic area. The needle has to go through the skin and the bone. My surgery lasted a little over 2 hours (my bone marrow was slow to come out) and they removed about 1.5 liters of bone marrow. My hemoglobin levels dropped to around 7 or 8, so I needed a blood transfusion. I used the bag of blood I donated the week prior. Finally around 7pm, we left the hospital.
I didn’t sleep well Monday night (about 4-5 hours) because I couldn’t get that comfortable.
Tuesday, June 26
Monday night we stayed at a hotel near the hospital (just in case there were complications), and we went back home Tuesday morning. Thankfully I purchased this travel pillow and I was able to use that to get comfortable on the drive back home. For the rest of the day I pretty much spent my time on the couch watching TV. I made sure to get up every hour so that I could walk around (this helped with the stiffness). For some reason the pain medication did not make me sleepy or groggy, so I felt very alert the whole day, but I did go to bed rather early that night.
I also removed the wrapping that was around my lower back since I could now shower (I couldn’t shower for 24 hours after the surgery). This didn’t hurt at all but I noticed a good amount of blood on the gauze piece of the wrapping that was against my back. Luckily blood and needles don’t really bother me so it didn’t freak me out. My sister and mom helped me shower since I couldn’t bend down. Definitely a humbling experience, lol!
Just as an FYI, there are no stitches with the surgery. I have four “puncture wounds” where they used the needles to extract the bone marrow but I didn’t have any additional bleeding throughout the week.
Wednesday, June 27
This was the turnaround day for me. Although I was still sore and stiff, I could feel myself moving around better – this included walking, getting up and down stairs, getting up from a chair and sleeping.
Thursday, June 28
I went back to work today. Luckily I’m able to work from home so that’s what I did Thursday and Friday. It was good to be back to work and catch up with my team. They also sent me this lovely Get Well soon basket. I work with some very amazing people!
I also ventured out of the house for the first time in my car. It was only a 10 minute drive but it was good to know that I could do it.
Friday, June 29
Friday was very similar to Thursday. I worked from home and drove my car to an afternoon appointment. I also went to the grocery store with my dad. I’m not able to lift anything so he was a champ about putting the heavy things in the cart!
Saturday, June 30
4 mile walk 🙂
While everyone else was running, I was able to get in a 4 mile walk. Sure, it took me 20 minutes to walk a mile since I can’t walk super fast just yet, but it felt good to get the body moving. Besides the heat, it was a great morning!
I also treated my parents and sister to lunch at a local Argentinean Steakhouse. I wanted to do something to thank them for all their help over the past week. It was much appreciated!
Sunday, July 1
I ran some errands today with the family. I would say that the soreness/stiffness today is more localized in the middle of my back (instead of my whole lower back). Walking feels much easier but I still have to take my time going up the stairs and getting up from sitting down.
Total Weekly Mileage: 0
10,000 Steps per day: Complete*
Weekly Weight Loss: +3 pound weight gain
Grade This Week – A
I’m not surprised at all about this week’s weight gain. I’ve been walking, but not able to break a sweat like I normally do. I also caved into wanting more comfort food this week while recovering. Also (sorry if this is TMI) but I’ve only been able to go #2 twice so I feel super bloated. I’ll get back on track with my eating this week and I’m sure that will help. Right now I’m more focused on recovering properly vs. losing weight to be honest.
I don’t know if I should *really* say I completed my 10,000 daily steps this week. I had a good amount of steps before my surgery on Monday but of course I couldn’t finish them that day. Also on Tuesday I got to about 8,000 steps before I was just too tired to finish. My mom felt bad and still wanted me to “hit my steps” so she wore my Fitbit and finished out the steps for me. She was doing the same monthly challenge as me so it all kind of worked out in the end. So…technically I’m admitting that I cheated those two days, but I did get in my steps all the other days this week!
Questions and Answers
I have received a few questions from family and friends that I thought might be helpful:
Q: What exactly is a bone marrow transplant?
A: Bone marrow transplant is a life-saving treatment for people with blood cancers like leukemia and lymphoma, and other diseases like sickle cell anemia. Bone marrow donation is a surgical procedure that takes place in a hospital operating room. Doctors use needles to withdraw liquid marrow (where the body’s blood-forming cells are made) from both sides of the back of your pelvic bone. You will be given anesthesia and feel no pain during the donation.
Q: Were you nervous?
A: Nope, not at all. As soon as I got the initial call I knew I wanted to do this. The initial call was on Good Friday and I took that as a sign. Also how I could I not follow through and possibly save someone’s life?!
Q: Who pays for the procedure?
A: I did not have to pay anything throughout this process. BeTheMatch paid for all of my medical tests, including the surgery, and my travel to and from my appointments and surgery.
Q: What are the things you cannot do currently?
A: I can’t lift heavy objects, take a bath, or bend over fully. I also cannot take aspirin or ibuprofen.
Q: How would you describe the pain?
A: It’s not really painful, but very sore and stiff. I still have bruising along my lower back. I would say that Monday night and Tuesday was the worst in terms of being uncomfortable, but it gets a little better everyday. I took my pain meds (Oxy) from Monday-Wednesday, but switched over to extra strength Tylenol on Thursday and I’ve been taking that twice a day ever since.
Q: How is your energy level?
A: I’m still wrestling with this issue. Although I am feeling better daily, I do tend to get tired faster. For instance, after yesterday’s 4 mile walk I felt fine, but ended up taking a 2 hour nap later on in the day. I just have to remember that it’s going to take a while for my red blood cell count to get back to where it was previously, but luckily I don’t feel light headed or anything.
Q: How is your mobility?
A: It’s getting better! I needed help showering and getting up the stairs on Tuesday, but I can do both of those things myself now. When going up the stairs, I always use the banister (I put some weight on it). When getting up from bed or a chair, I lean on a table or wall to help myself get up. I try to get up and walk every hour so that I don’t get too stiff.
Q: Will your body replenish the bone marrow?
A: Yes! My marrow will return to normal levels within 2-3 months.
Q: Will this affect your running?
A: In the short term, yes, but in the long term, no. I should be able to get back to running in another week or two. When I do, I will be starting off very slow with run/walk intervals.
So what’s next? Although recovery is going well, I’m still going to have to wait and see how I feel next week. I definitely don’t think I’ll be able to run (I want to wait until all the soreness/stiffness is gone), but maybe I can find other ways to workout. Later on this month I was supposed to run the Rock ‘n’ Roll Chicago 5K and Half Marathon. Obviously I’m in no shape to run a half marathon so I’m going to drop down to the 10K distance. I’m more than okay with this. Besides, I’ll still get the Remix Medal for doing two races that weekend 🙂
Finally, I just wanted to leave you with some important statistics (all stats from the BeTheMatch website). These stats are the main reason I decided to write this blog in hopes that it may inspire more people to join the registry.
– Every 10 minutes, someone dies from a blood cancer.
– 70% of patients who need a transplant to do not have a fully matched donor in their family.
– About 1 in 430 members of the Be The Match Registry in the United States will go on to donate bone marrow.
– Almost 50% of people who join the registry do NOT follow through with the procedure when called and told that they are a match. This is mainly due to fear and misinformation about the bond marrow donation process.
– To increase the diversity of the registry, they especially need members who identify as African American, Asian, American Indian, Native Hawaiian, Hispanic or Multiracial.
– Out of 16 million people on the registry, only 5% identify as Black or African American.
– If an African-American finds a match on the registry, there is an 80 percent chance that the identified donor is the only match on the registry.
– At least 3,000 people die each year because they cannot find a matching donor.
– Donating bone marrow is safe. More than 35,000 people have donated bone marrow to a stranger without a single donor death.
– You can join the registry for free if you are between the ages of 18-44.
– Donors between the ages of 45-60 are welcome to join online with a $100 tax-deductible payment. Research shows that cells from younger donors provide the greatest chance for transplant success.
I hope that you enjoyed this somewhat different weekly wrap. If you are interested in joining the National Marrow Donor Program, please visit Join Me for June Runfessions