My experience donating bone marrow

The following relays my experiences of being a bone marrow donor in 2014. It’s my hope that this blog encourages at least one more person to sign up on the registry and possibly make a difference in another person’s world.

History

I’m not sure where to start on this so, I guess at the beginning.

Early in my government career - when I was in my 20s - we had an assistant director who had leukemia, so our organization held a bone marrow donor drive. The drive basically consisted of completing a form, and I think, a swab of your mouth (at least, that's what it is now days).  At the time, I was also a huge blood donor (eventually getting my one gallon pin/plaque), so I did this, too, thinking I may be able to help someone that way.

Fast-forward through about 25 or so years... it was always in the back of my mind that I had signed up, so I kept my address updated, and wondered occasionally if I would ever get THE call. Well, the calls - and letters - and emails came in October 2013. I literally received four letters (old address, with a forwarding label and new address) trying to contact me. I did call the Be the Match organization the same day as receiving the first letter, but with all of the efforts to find me, the sense of urgency kicked in over the next few days.  Receiving the call gave me both a feeling of elation for being able to help someone and stress in making sure that I did everything exactly right to give the transplant the best possible success.

My first contact was to see if I was still willing to be a donor, completion of a 4-billion question health survey, and consent to further test my original swab of cells. Technology is awesome, and this was done by telephone and email.  OK - the survey wasn't really 4-billion questions obviously; but after going through it at least four times in a few months, it seems like it. :) Questions were asked such as have you had your ears pierced, tattoos, hospitalization, medications, aches, pains, diseases, and my fav - have you traveled to a foreign country. Ha, I wish ~ someplace by the equator would be REAL good in the middle of winter!

Once the swab was tested, I received another phone call a couple of weeks later and was asked to do the next step which was having five tubes of blood drawn for additional testing. I think this one was for matching 'markers' which are found on most cells in your body, and your immune system uses them to know which cells belong in your body and which don't. I don't want to get too complicated here, but matching markers between the patient and donor determine the potential success of the transplant. According to the website, there can be as many as two matched and on up to 12. Mine was 8, so Step 2 was completed and we moved to the next step. 

Step 3 consisted of the mega-physical - heart reading, chest x-ray, general put-your-finger-on-you-nose-tests, and 12 tubes of blood.  Imagine seeing those put on the table by your arm! :) I commented to the nurse that it looked like a divided blood donation - lucky me!  Actually, refer to the first paragraph above - giving blood, while huge to the person that receives it - is not a huge deal from my perspective and history. The blood samples are used to complete a complete blood count (CBC).  I think this is the most extensive blood test you can get and it tells things such as how many red cells, white cells, and platelets, size and shape, and checks for a ton of diseases. Happy to know I passed this one! 

Oh, and with about every blood sample, is a pregnancy test which my younger sister got a kick out of. Her youngest (of 6) is 1 year old, but seriously, my youngest is 14, and there are no more babies in my future except for grandbabies in like 10 years or so!

Let me digress just a moment about the chest x-ray. My first ever true physical (in my early 20s), I had a chest x-ray that showed cloudiness at the top of my lungs.  Per my doctor at the time, I either had tuberculosis or was raised around a lot of birds. I just started laughing and said does 100 chickens every summer count??? (He gave me the TB test anyway just to be sure, which in case you don't know, it's a shot under your skin, and I think they look for a rash to develop or something.) Those chickens - yeah, we lived on a farm and every year my mom would get 150 or so chickens that we raised… and had to butcher...10 to 15 every Saturday until 'just the right time', and then all my aunts, grandma and some cousins would come to do the rest on one day.  THIS is why I have a cast-iron stomach and can easily kill, clean and eat dinner within an hour!  NOT that I EVER want to go there and do that again in my lifetime!!!

To throw out another unrelated interesting tidbit - after my second daughter was born, I received a letter from an organization saying that I had developed platelets from being pregnant that would, within a short time, would leave my body and would I be willing to donate these as long as they are available. The interesting, or ironic, part is that I think they said these are used in some way to typecast HLA markers for bone marrow donation. Mark and I agreed this would be good to do. When I called, they explained it all and said I would receive $100 for every donation. Heck, I was going to do for free! I couldn't supplement my income with this as there was a once-a-week limit, but I did do it as long as possible so they could use them.  They also said if I got pregnant again, my body would automatically develop them and to call as soon as the baby was born to further donate - which I did.

OK - so enough digressing and on with the story - Because of timing, I ended up having to do the blood samples a couple of times, and there was a two-hour call with my donor advocate, hubs and me to discuss the procedure, side effects, recovery, etc. I did a lot of research about donating after the first call and know more now than I ever did. BetheMatch.org has tons of info. Some facts:

**There are two types of donation - marrow (the needle-in-the-hips type that scares most people away) and peripheral blood stem cell (PBSC) which I call a glorified blood donation process. Thankfully, I was the latter!

**They prefer 18-44 yrs old for the best success (ok I'm a tad over 44 - but not much!!!)

**You have a donor advocate assigned who takes you through every step via phone, email and text. That person answers every question you can think of, follows up on how you feel, finds out as much about you as your doctor and makes all arrangements and appointments so you basically just show up on the date and time of whatever needs to happen. 

**It's recommended to take four Tums a day to increase calcium starting five days before the donation to decrease changes of muscle cramps during the donation. I bought the mega-calcium in addition to $50 in dance makeup ~ but that's another story!

**1 in 540 actually go on to donate

A few days before my process was to begin, I received an overnight package with instructions from my advocate and trip documents. I outlined all of the information by day so I could print the document and make sure I didn’t miss anything. My advocate called me the next day to go over everything and see if I had any questions and then I was good to go.

Over the course of the months, I was asked why I would want to be a donor, and the bottom line was that putting my name on a list, doing blood tests, dealing with a couple of weeks of pain, or whatever else would be pretty negligible if I could be someone's best chance at life. According to the website, the patient has about a 70% survival rate, but it's better than none. There are several other reasons, too such as being an example to my children, friends and family.

Lastly, I was called an 'angel', 'good Samaritan', great person, etc., and while I absolutely appreciated all of the kudos, and more importantly, the support; I truly felt that I am just one human being helping out another and giving them a chance at having a life with their family and friends.  I would hope that if my family, friends, or I am ever in need, that there would be a person stepping up to the plate.

Filgrastim – Day 1

On each of five days before the donation, I got two shots of a medicine called Filgrastim to increase my production of stem cells. My body then pushes these into my blood stream which prepares me for the PSBC. There were two because of my height/weight and the limitation on how much Filgrastim could be in one shot. The shots can be given in the arm, leg or stomach (yeah, like I’m going to have a needle put in my stomach!) They hurt a tad, and reminded me of the little skin pinches my siblings liked to do when we were kids. There are potential side effects of the shots such as headache, bone/muscle pain, tiredness - but these are nothing compared to what the patient has and is going through. My recovery from whatever symptoms was likely less than seven days. I did hear a couple of ‘horror stories’ about the amount of pain, but I kept thinking positive that I would have only a few and even then knew that it would be short term.

The Be the Match organization truly cares about their donors and makes everything as convenient and safe as possible. As such, the first Filgrastim shots took place in a clinic so a doctor was available in case there was some type of reaction to the drug. My dear hubs went with me, and we were called into a patient room within a short amount of time when getting there. The doctor asked health questions, took my vitals and administered the shots. (Read Day 2 on my friendly tip on who to have give you the shots!) 

As we waited the 15 minutes, I was assessing myself looking for reactions and how I felt.  As I texted my donor advocate when she checked in on me later that evening – I was hyper-aware all day of any little twinge but everything was truly 100% normal for me.  She let me know that I probably wouldn’t feel anything until after the second injection.

Because I was having a home health care nurse give me shots the rest of the day, I brought the remaining doses home with me from the clinic.  Some of the guidelines in the overnight instruction package – don’t shake (Lord, help me not be a klutz and drop them!) and refrigerate but don’t freeze (I prayed my fridge didn’t do something wacky during the few days I needed it to be consistent!)

I ended the day with the first injections done and no noticeable side effects.

Filgrastim - Day 2

My donor advocate set up a home health care nurse to come to our house on the remaining three days to give me the shots.  I received a phone call saying that the nurse would be at our house around 9 a.m. on Sunday morning. Once she got here, she put my information into her computer then there were a few questions to ask about how I was feeling in the past 24 hours and some paperwork to do that Be the Match sent.  Everything was normal. About this time, my sister, nieces, nephew, hubs and daughters all arrive so it was a party to watch me get shots! I told the nurse about the shots hurting the day before as she was prepping them, and she asked if the doctor gave them to me. When I confirmed, she said nurses are usually more gentle.  Note to self: always have a nurse administer shots in the future! Shot #1 was no pain; #2 hurt just a little. I did see my oldest cover her eyes when I was getting the shots. The nurse wrapped up the visit, threw away the trash and took the needles with her.  I would have a different nurse the next day (beginning of the regular work week).

Throughout the second day, I had a little bit of a headache, but it could have been due to staying up late the night before visiting with my family then getting up at my normal 4 a.m., needing to eat, and/or basically standing on my head cutting in the paint in a bedroom I was painting. I was on a mission to have that room painted before any symptoms kicked in!

Filgrastim - Day 3

On Day 3, my nurse was from a nearby town and was there a little after 8:30.  As a side note – they will work with your schedule to have the nurse come when it’s convenient for you.  Anyway, we did a repeat of Day 2 in the questions, shots, paperwork, and she was on her way pretty quickly.  She would try to be the nurse for Day 3, but was trying to arrange for her child care in order to be here earlier on Day 4 when we traveled.

My goal for the day was to paint a small bathroom, and I did get a large part of it done before running out of paint and energy. By lunch, I was a little tired so I hit the couch with a book and mainly laid around the rest of the day and evening. As the day went on, my headache continued, but I was able to knock most of it with ibuprophren.

Filgrastim - Day 4 and Traveling

The insomnia side-effect kicked in on Day 4, and I woke up a 2:30 with a headache  ~ ibuprophren was definitely my friend. I was ready for my nap at 5:30, but it was almost time to make my kiddos their last breakfast before they went to school, so I kept on going.

My same nurse from Day 2 came before 8 a.m. because hubs and I had to get to our 11 a.m. flight. The scenario was the same, and she offered to give me the shots in my stomach to try it.  Uh, no! I’m a shot-in-the-arm type of gal!

With shots taken care of, hubs and I headed to the airport to catch our flight to the east coast. Nothing major happened although I will tell you that the plane parked on the tarmac where we de-planed then had the lovely bus trip to the actual terminal. (Just an irritation.) After grabbing our luggage, a limo-service car was waiting to take us to our hotel.

Check in was uneventful as my donor advocate had a room reservation for us and a credit card of file for meals, etc. and our room was nice.  Since we were traveling at lunch time, our first stop was in one of the hotel restaurants. We did some pretty significant damage to three happy-hour appetizers and two sandwiches. Needless to say though, our eyes were larger than our stomachs, but not by much! 

We didn’t do touristy stuff – first because it was FRIGID outside (the hotel would take us anywhere within a mile) and also because I wasn’t feeling up to the walking around, so hubs and I stayed in our room. He watched the tube and I continued the series I was reading. The free first-in-a-series book got me caught then I ended up downloading the remaining eight books which was fine as I ended up reading seven books over the course of this time while I was laying around. Have to love the Kindle app with instant downloads! Anyone who knows me knows that I am generally two speeds – run and sleep – so this tells you the level of energy I had.

Filgrastim - Day 5 and the Donation

On Wednesday, I was up at 3:30 CST so I was already looking forward to nap time! By 6 a.m. EST, I was showered and ready to go. Hubs hit the shower then we headed to the amazing breakfast buffet.  Any buffet that includes smoked salmon rates high in my book! At 7:10, we went to the lobby to grab a cab to go to the center three miles away. There weren’t any cabs waiting so the desk person called…twice. Apparently snow caused a huge problem that morning. I wasn’t going to make the 7:30 appointment time (:/), but as I told hubs, they couldn’t start without me. My assigned nurse, Mary*, called at 7:50, and I relayed that we were then about five minutes away. 

Once getting there, my vitals were checked and questions asked, then I got the last two shots (finally - cuz I was feeling like a pin cushion by then.J) In my 20 minute wait, I kicked off my shoes and picked a couple of movies to watch, and then Mary reminded me that I may want to take a last restroom break…shoes back on! She brought me warmed blankets and an extra for my feet, which were freezing from the hotel lobby wait, and two bags of warmed liquid for my hands to keep the blood flowing. Twenty minutes passed (the wait time after the shots) then Mary proceeded to connect the machine to me.  I had a needle in my left arm where the blood was going out and one in my right hand for it to come back in which made my right hand usable.

There were two other people at the center with me, an older lady and younger guy.  While Mary was connecting me, the lady had some sort of problem overheating or something, but all of the nurses converged and it was quickly taken care of.

Since I was going to be there a while, I thought I would take a nap which after wiggling around, trying to fix my blanket to my liking on my arm, Mark handing my jacket to me to cover my eyes and scooting here and there, I finally gave up. There just wasn’t a comfortable position to sleep with my arm out straight. Mark and I started watching The Hangover which I had only seen parts of previously. 

As the day wore on, I still shifted here and there, and talked with Mary off and on. I asked questions about how the machine worked, and she would check to make sure I was feeling okay. My donor advocate also called the center during my time there to check on me as well. Other than some arm pain where the needle was (to be expected), all was going well.

One note about the machine that you get connect to is that after the blood goes through the centrifuge to pull off the stem cells and some platelets, it goes through a warmer before it comes back into your body.  After a couple of hours, I began shedding blankets and finally mentioned to my nurse that I was getting a little warm. She turned the warmer off and a while later, I felt the needle in my left arm vibrate. I asked if that was supposed to happen and Mary said that it meant I was getting too cold for the collection to work right so a blanket went on me and the warmer went back on for my returning blood.

Around 11:30, my nurse took a bit of the cells and they were sent to a hospital fairly close to see how many were in whatever amount she drew.  Apparently, a patient’s doctor determines the number of cells they would like to have for the transplant. The amount going to be counted would calculated and tell the nurse how many had been collected at that point. The report came back as not enough yet, L so I continued on.  Around 12:30, both of the other donors were taken off their machines and left, and I was feeling kind of odd-man-out. L L  Mary said my blood sugar was dropping so Mark went to the building next door to get some lunch. A tuna melt on a pita wasn’t the most exciting meal I’ve ever chosen/had, but it was okay. My platelets were also dropping. Around 1:30, it was the max time for being on the machine so Mary began unhooking me. My left arm seriously hurt because of being extended/straight for so long and I had to use my right hand to lift and begin exercising it to relieve the pain.  Mary had said at the beginning of the day that my arm would be tired by the end, so I figured that this was fairly normal and would work itself out.

While my body didn’t produce the desired amount of stem cells, there was enough for the transplant. The most important time for me to excel and I didn’t. [sigh] BUT, both Mary and my donor advocate said that the difference between what the doctor wanted and was collected was negligible which made me feel lots better!  In addition to collecting stem cells, they also collect platelets to ‘feed’ the stem cells during transport to wherever the patient is located. I think I read somewhere that a transplant usually occurs within 1-2 days of the donation so this keeps them good.

The nurse gave me the release instructions which included to rest for 60-90 minutes, have a good dinner, drink lots of water, no activities that could cause bruising, no aspirin and no strenuous activities such as exercising for a week. (Hmm, I could do all of these easily – especially the no exercising part!)

Following the donation, a taxi returned us to the hotel and I took a nap which was wonderful. I texted my boss who worked in the city and we met up for an awesome Italian dinner close to the hotel.  Mark and I wandered a nearby exclusive mall that had a $56,000 watch in a jewelry store window ~ let’s buy it up!

*Name change

Traveling Home

The next morning, I was up early as usual and Mark and I got to enjoy the hotel breakfast buffet again. The car was scheduled to pick us up at 11:30 to head for the airport so hubs watched an educational movie about monkeys and I continued reading to kill an hour.

We hopped the plane and had an uneventful flight home which included a short nap.

Day 7 and beyond

My donor advocate contacted me the day after we got home to check on me and any symptoms that I had. Other than my left arm still hurting which I didn’t take meds for, all was good. I felt back to normal, enough so that I finished painting the bathroom that I had started before I went on the donor excursion.  I did have a nap, but I think that was more laziness than any symptoms! My advocate did say that my platelets were at 80K (100K is the base that it should be) so she scheduled another blood test the next week to check them.

Throughout all of this, my mom was majorly concerned as any mother would be and my sisters and hubs family checked in with hubs or me frequently. Dear hubs was great – doing lots to make this whole endeavor comfortable and making me laugh as usual and my girls asked how I was, did some cooking and cleaning, massaged my neck and shoulders a couple of times and welcomed us home with homemade chocolate chip cookies, flowers and a card.

So, as I close this, thank you for all of your support and I hope blogging my experiences gives you, the reader, encouragement to check www.bethematch.org volunteer as a donor, show support and/or just learn more.

And, most importantly, please say a prayer for the patient and that the cells I donated rocked and rolled in making the transplant a huge success!