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
HoHo Runs says
Knowing you are the only match for someone is very sobering. What if you weren’t on the registry? On the other end, I can only imagine the immense gratitude of the patient and their family that you were on the registry. I applaud you for having the courage to sign up all those many years ago and going through with it when called! Thanks for linking.
kookyrunner says
I couldn’t agree more – it was definitely very sobering considering the patient couldn’t find a match in their family. When I got the call I had honestly forgotten that I signed up with the registry all those years ago but I’m so happy that I did. I believe in fate so I know this was the way everything was supposed to play out.
Deborah @ Confessions of mother runner says
This is just so generous and selfless of you to do for someone that you do not know. That is the way I imagine you are all the time. I am not sure I would be brave enough to do it. You are really a special lady!
kookyrunner says
Thanks so much for the kind words, but I think that you would be brave enough to do it too. You have a really big heart <3
Wendy says
Having taken care of MANY patients who’ve benefitted from BMT, I want to tell you how awesome you are!!! This is one of the most selfless gifts a person can give. Will you get to find out how the recipient does?
Have a wonderful week!
kookyrunner says
Thanks Wendy! That’s a great question – After 9 months I can reach out to my contact at BeTheMatch to get an update on the patient and after a year we will have the opportunity to communicate with each other. I’m really hoping that a year from now I’ll be able to meet the patient in person!
Lacey@fairytalesandfitness says
What you did was so selfless and I am sure very well appreciative from that family! Hope your recovery goes well. I enjoyed reading your process!
kookyrunner says
Thanks so much Lacey!
Kimberly Hatting says
You are such a hero for doing this, Kim. I’m on the verge of tears just thinking about the whole process and what it will mean to the recipient. I cannot wait to give you a hug in person 😉
kookyrunner says
Awwe thanks Kim but don’t cry! Can’t wait to see you in person in a few weeks and give you a hug as well!
Becca | Rabbit Food Runner says
You are such a wonderful person! I just registered for Be the Match for a friend’s birthday (he didn’t want gifts, just acts of kindness so the NP tribe organized a “registration party”) I hope to be a match one day!
kookyrunner says
That’s awesome Becca! I’m so psyched that you joined the registry and what an awesome idea to have acts of kindness instead of gifts for a birthday. I really love that idea.
AmyC says
You have such big heart!!
I have often wondered about this procedure and fly expected you to say the recovery was painful. I am happy that it is not and that you will get back to running so quickly!
PS – I love that your mom helped you get your steps 😉
kookyrunner says
Thanks Amy! Yes I really wanted to write this post to educate more people about the whole experience too.
My mom is awesome! she was like “you’ve come to far not to hit your 10,000 daily steps” LOL
Lisa @ Mile by Mile says
It’s so awesome that you did this! While it doesn’t sound like the most fun week for you, in the grand scheme of things its really not that much for it to be able to save someone’s life. Hope you are feeling better!
kookyrunner says
My thoughts exactly! Sure I’m uncomfortable for a few weeks but it’s all worth it to save someone’s life.
coco says
Thank you so much for sharing your experience. I have never considered doing this, but now I will. That hospital picture is the picture of a hero! LOL on your Mom taking over your fitbit. She is a gem too.
XXOOXX
kookyrunner says
Thanks so much Coco. I am so happy that you are now considering joining the registry! That was my biggest hope when I wrote the blog – to get more people interested in joining the registry since there is such a need for donors.
Lesley says
This is awesome, and good for you! Are they going to let you know if your donation was successful?
kookyrunner says
Yes, in 9 months I can reach out to them to ask for an update on the patient. After a year if the patient and I want to contact each other we can and I really hope that happens!
Tia says
This is absolutely amazing and so inspiring!! You did a wonderful thing and to think that on a whim you donated a minute of your time to eventually save someone’s life. You are applauded.
kookyrunner says
Thank you so much Tia for your kind words! It is really crazy to think about how I was at the right place at the right time to sign up for the registry. I definitely believe in fate!
Liz Dexter says
You are AMAZING! This is an honest and very useful post – I’m going to remember it if anyone I know needs to do this. The gift baskets were lovely, so kind of your work, too. Oh, and prune juice. Not neat (ask me how I know) (dont!) but cut with apple juice or water, will get things “going” again. Also if you drop your mouth open while sitting on the loo it relaxes everything. I know this from having gynae surgery last year and love to share the useful tips! Be well and well done.
kookyrunner says
Thanks so much Liz! Please feel free to share this blog with anyone that might be thinking of joining the registry.
Thanks for the recommendation on the prune and apple juice combo! I’m really looking forward to getting things “moving” again lol.
Jenny Albertson says
wow! That is pretty awesome. I’ve heard that donating bone marrow can be really painful but I’m glad you were under anesthesia for it! Feel better soon!
kookyrunner says
Thanks for the well wishes Jenny! I was definitely more sore and stuff than in pain which was good.
Stephanie says
You are such an amazing human being!!!!! What a selfless thing to do, I hope your recovery continues to go well, you rock.
kookyrunner says
Thanks so much Stephanie! I’m feeling better everyday and I’m so thankful for that 🙂
Chaitali says
Wow, that’s great that you did this. Thank you for sharing about the experience. I had no idea what was involved with a bone marrow donation. I hope recovery continues to go well.
kookyrunner says
Thanks Chaitali! At first I didn’t really tell anyone I was doing it but then I thought that I should share my experience so that people can learn more about what’s involved, etc.
Darlene says
You are so awesome!!! and deserve all the comfort food!
kookyrunner says
LoL thanks Darlene! I definitely enjoyed all the comfort food last week. Maybe it helped me recover quicker?!
Judy @ Chocolaterunsjudy says
I wan to hug you for doing this. I don’t know that I could, frankly. And no hesitation? You’re pretty amazing!
As far as the bloating, constipation, etc. — not at all uncommon after any kind of surgery with anesthesia, I believe. And I know you can’t keep a good woman down — you definitely are a good woman!
kookyrunner says
Awwe thanks Judy – sending you a virtual hug!
I think you’re right about all of that being linked to surgery with anesthesia. Hopefully I can get things “moving” again soon, lol 🙂
Michelle @ Running with Attitude says
Wow, Kim – I hope this doesn’t come off the wrong way when I say I am so proud of you! The gift you gave someone is amazing. You were so brave to step up when someone needed you the most and I have no doubt you have inspired others to do the same. I’m going to sign up – hopefully, my marrow isn’t too old LOL! Seriously, you rock lady – can’t wait to see you and give you a big hug 🙂
kookyrunner says
Thanks Michelle for your kind words and can’t wait to hug you in person in a few weeks! I am so happy to hear that you are going sign up for the registry! 🙂
Renée @runlaugheatpie says
You are truly a hero Kim <3
I have done the swab for the organisation here in the netherlands and I'm just waiting for the call, whenever it happens. I'm ready to help, , however I can. I hope even one person you speak to about your experience will sign up and literally help save someone's life.
kookyrunner says
Thanks so much Renee! I have no doubt that when you get the call, you will be a blessing to someone by donating bone marrow.
Patrick@looneyforfood.com says
You are brave and amazing! I would not be strong enough to do this! So selfless of you! So much respect
kookyrunner says
Thanks so much Patrick
Debbie @ Deb Runs says
Oh my goodness, I love your mom! It just goes to show that moms will do anything for their children, even wear their Fitbits to help them get in their steps! LOL
I really applaud you for your selfless act of being a bone marrow donor. There’s a very lucky and grateful person out there that may want to meet you someday. You are truly amazing!
kookyrunner says
Thanks so much Debbie!
And yes, moms will do anything for their kids, lol! 🙂
Cari says
Lymphoma and myeloma have touched my family, so a personal thank you for doing what you did. I find your Q&A super helpful
Besides the #2 bloat, I’d bet there’s residual puffiness from laying down a lot and the IV, so I’d bet you lose some of that this week.
kookyrunner says
I am happy that you found the Q&A helpful! I’m sure there are some questions I forgot so I might update that list later.
You were definitely right about the residual puffiness! I weighed myself yesterday and all that extra weight is gone.
Kathryn @ Dancing to Running says
Kudos to you for your selfless donation. Somebody out there is going to be one lucky recipient. And there’s absolutely nothing wrong with turning to a bit of comfort food last week during your recovery. You more than earned it.
kookyrunner says
Thanks so much Kathryn. I often think of the recipient and hope that he or she is doing well.
Rach says
Wow – you’re so incredible for going through this to help save someone’s life. Rockstar!!
kookyrunner says
Thanks Rachel!
Michelle says
Thank you so much for sharing this amazing experience, and being so honest about it! What a wonderful gift you have given!! Blessings to you.
kookyrunner says
Thanks Michelle! When I was trying to find information about the procedure I found a lot of medical stuff but nothing personal from someone that went through the experience, so that’s why I wanted to blog about it. Hopefully it will help someone else going through the same process in the future.
Jenn says
Absolutely amazing! What a gift you were able to give!
kookyrunner says
Thanks so much Jenn 🙂
The Accidental Marathoner says
I don’t have to tell you what an amazing gift you have given; not just to the recipient, but to everyone who cares for him or her. You have given them so much hope! What an wonderful thing you have done. As your match data told you, you are truly unique and a very special person! You will be blessed many times over for your selfless generosity!
kookyrunner says
Thank you so much for the kind words! I am keeping my fingers crossed that my bone marrow is able to help him or her beat the cancer and go into remission.
Zenaida Arroyo says
This is pretty awesome!! I also did the whole swab cheek thing in April but was then was told that due to my age they couldn’t use it or something like that. I would have to call and have ask them to send me another kit. It was weird and I was annoyed by it. Anyway, reading this is definitely a sign for me to call.
kookyrunner says
I’m sorry that you didn’t have a great first experience with the organization 🙁 I hope that you have a better experience when you call them this time. IF you have any questions, just let me know!
Zenaida says
I went online to register but because of my age, I have to pay $100 to cover the cost to join the registry. Apparently doctors/prefer donors to be in the 18-44 age group.
Shathiso says
You are amazing. Wow. I loved this post – You were the only match and have given someone a fighting chance. That is quite something. I am going to investigate whether something like Be The Match exists in Botswana.
kookyrunner says
Thanks so much Shathiso. If Be The Match isn’t in Botswana, I hope that a similar program exists there.
Jessie says
Wow, somehow I missed this post Kim, not sure how…You are incredible! What a selfless amazing thing to do. I’m so inspired. Hoping you feel stronger every day. Wow.
kookyrunner says
Thanks Jessie! I was just happy that I was in the position to help someone else. I am feeling stronger everyday so thank you for the well wishes!
Amy W says
Wow, you are absolutely amazing and selfless – a true hero! Your post has been very informative as I really have known very little about the bone marrow donating process. The surgery and recovery sounds like a lot but very much so worth it to save a life. You are such a blessing!
kookyrunner says
Thanks so much Amy! The recovery has been a little longer than expected but I was able to get back to running this week so I’m thankful for that.