A Not So Random Act of Kindness: Being A Bone Marrow Donor

The One Year Update and reflections

noreply@blogger.com (Unknown) — Wed, 30 May 2018 14:38:00 +0000

A little over one year post-donation my phone rang again. My work-up specialist (the woman who walked me through the steps of my donation and the mandatory 1-year follow-up) was calling with my one year update on my recipient. The news was not good.

Unfortunately my recipient had passed. Since information is highly restricted she was not able to tell me when it had happened or from what. All we could say is that she passed sometime between the 6 month and 1 year mark. Everything else would just be guessing. In the years that have passed I've since learned that most transplants work; usually when a patient passes it's due to a complication like an infection.

Some donors feel it's their fault when their recipient passes; as if their cells should have done more to help. While this is an understandable feeling, it's simply not true. Each donor has done everything in their power to help. Period.

To this day, when I meet donors who are about to donate and I have a conversation with them. I tell them that their attitude is critical. If they go into this thinking they're going to save a life, there's a chance they may not. If they go into this thinking they're giving the precious gift of a second chance at life then they're going to succeed. Their attitude makes a world of difference.

A year and a half after my donation, I joined Be The Match as a full-time recruiter. My current job is to add potential donors to the Be The Match Registry. In my time with the organization I have added >12,000 members to the Registry. Several hundred of them have been identified as potential matches and 23 have gone on to donate to a patient in need. Many more of the members I've added will be called as donors in the future, even after I've retired my recruiter hat and moved on.

My life's journey has been somewhat akin to the ball found in a pinball machine; zinging in different directions as various paddles, ramps and holes appear. For me, my donation was like a paddle knocking my life in a 90 degree turn from the path it was on. What a ride.

Second Patient Update

noreply@blogger.com (Unknown) — Wed, 27 Nov 2013 02:47:00 +0000

My recipient is alive! She has encountered some side effects of the transplant that are considered normal and is being treated for them. In spite of these side effects, the doctors say her recovery is on track.

At this point in the recovery she should have returned home to begin adjusting to her “new normal” – as transplant survivors call it. The risk of infection is slowly decreasing as her new immune system continues to grow stronger. Her immune system should be fully functional around the one-year post-transplant mark.

Bone marrow transplants are a brutal treatment that is literally a last resort. To choose to undergo a transplant means you have something to fight for. I hope she is surrounded by a strong and loving group of family and friends who are supporting her on this journey back to full health.

The next update will be in another few months, around the one-year anniversary. At this point I will be able to re-join the registry and will be able to donate blood again. Donors are temporarily removed from the registry and are asked to not donate blood for a period of one year post-donation. This is in the event your recipient needs another donation of stem cells or other blood product you will be immediately able to donate (there would be a waiting period of 8 weeks if you had just donated blood). I have gotten out of the habit of donating blood and am very much looking forward to being able to do that again.

The one-year anniversary is also the time we will be able to make direct contact with each other (assuming each of us signs releases allowing our information to be shared). I would very much like to know my recipient’s story but am preparing myself for this to not happen. Sometimes recipients (and donors as well) choose to not share their information. This is a highly personal decision and there is no right or wrong choice. I respect my recipient’s wishes regardless of her choice.

I continue to volunteer with the Be The Match registry at local donor drives. Each drive is different but the common thread is the kindness present in the hosts, volunteers, and attendees. In a world where the evening news is dominated by tragedies, it is refreshing to know that love and unselfishness still exist - and dare I say even widespread?

First Patient Update

noreply@blogger.com (Unknown) — Sun, 14 Apr 2013 14:29:00 +0000

I received wonderful news recently. My recipient has engrafted (meaning my stem cells have migrated to her bone marrow and are now successfully producing white blood cells, red blood cells, and platelets), has been released from the hospital, and is doing well.

There should be another update in a few months.

I am relieved to hear that my recipient has successfully cleared the first and second major hurdles (engraftment and release from the hospital) of the transplant. Her next major hurdle is the 100 day post-transplant mark. During this time she is still currently at high risk for infection and other complications such as Graft-versus-host-disease. She will be closely monitored during this time.

Since my PBSC donation I have begun volunteering with the Be The Match registry at local donor drives. I've found that sharing my donation story with others eased their concerns about joining. Several people commented to me, "After hearing your story I'll definitely donate if I get the call." Hearing those comments made my day and has pushed me to continue sharing my story.

Additional Resources

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 02:58:00 +0000

If you go to only one source, let this one be it! The Be The Match Registry run by the National Marrow Donor Program. The most critical link with the mother load of information ranging from how to sign up to be in the donor database, what the PBSC and bone marrow donation procedures are like, FAQ’s, donor and recipient stories and first time meetings:

- Donor stories (blog)

- Donor experiences (short videos)

- Recipient stories (blog)

- The Donation Process, Step-By-Step (web page)

- The Search for a Donor (blog with video (2:10))

- Check out the Be The Match Channel on YouTube

General Information and The Bone Marrow Donation Process:

- You could be 'The One' someone is looking for (Video, 1:01)

- Bone Marrow Donation by the numbers (Video, 3:51)

- Robin Roberts PSA, "What would you say if you were asked to save a life?" (Video, 0:32)

- Want to watch a 6 year old explain the process to you, while acting out all the parts? (Video, 9:08)

- An animated/short clip of how to sign up and donate. The cow is the best part (Video, 2:44)

- Donate your baby’s umbilical cord blood to a public cord bank (Video, 0:55)

- Dr. Jeffrey Chell, CEO of NMDP in 2007, speaks with Katie Couric (a bit awkward at times but

great info!) (Video, 5:23)

- Someone is looking for their "Perfect 10", it might be you (Video, 1:34)

From the Donor’s Point of View (Blogs and Videos):

- A PBSC donor's blog. She continued to write after her donation and the site includes her

donor advocacy work and meeting her recipient (be prepared to spend some time here!)

- A wonderful blog of a PBSC donor with a comprehensive resource list of weblinks

- A blog written by a serious foodie I found by accident because she mentioned her PBSC donation

experience. Read her donation experience then go back for the recipes.

- A short(ish) blog of a marrow donor’s experience.

- A donor's blog who gave PBSC in November 2012.

- Mandi's blog about her PBSC experience, one of the first donor blogs up detailing the process. To
locate older posts, click on the 'Home' tab then scroll to the bottom of the screen. Click on the black
"Older Posts" button to navigate to the beginning of her Filgrastim injections.

- And just to show that all donor experiences are different, a PBSC donor's blog who did a follow-
up T-cell donation. Navigate to the Archives on the right side of the page and go to May 2011 to
start at the beginning.

- Sara’s Experience as a PBSC donor from Day 1 of Filgrastim to post-collection (Video, 10:58)

- Two women share their marrow donation experiences (Video, 3:58)

- A Day in the Life of a Hero – follow multiple donors through different steps of the process. A bit
dated but still has great information. (Video, 10:00)

From the Recipient’s Point of View:

- Robin Roberts (Good Morning America host) blog detailing her bone marrow transplant.

- Donors give patients hope (Video, 4:21)

- Resources and support for the patient, family, caregivers, and friends of life post-BMT

- Youtube channel of a 2 time bone marrow transplant recipient as he goes through the process

- Cancer survivors talk about their diagnoses, search for a donor, and what being cancer-free
means to them (Video, 5:18)

- Graft versus Host Disease (GVHD): when it's good and when it's bad (Video, 4:23)

First Time Meetings between Donors and their Recipients:

- Donor and Recipient meet for the first time on Good Morning America. This segment inspired
thousands across the country to join the Be The Match registry (Video, 7:30)

- Katie, donor, meets her recipient, Gregory, for the first time (Video, 4:09)

- See more first-time donor/recipient meetings, there are plenty on YouTube!

How it all Happens, the People working behind the Scene:

- Take a tour of the facility where all the donor cheek cell swabs/blood samples are kept (Video, 3:21)

- A Be the Match Registry Search Coordinator speaks as to why she does what she does (Video, 2:10)

Courier stories (news articles):

- U.S. Based Courier for the Be The Match Registry of the National Marrow Donor Program
(http://www.bethematch.org)

- UK Courier for the Anthony Nolan Trust (http://www.anthonynolan.org/)

- Canadian Courier for the Bruce Denniston Bone Marrow Society
(www.dennistonsocietyottawa.org/)

- Some of the special challenges bone marrow couriers face while trying to complete their life saving
mission.

- A blog written by a bone marrow courier with the Be The Match Registry of the National Marrow
Donor Program (http://www.bethematch.org).

Talk nerdy to me (if you haven't had enough, delve into the medical side of transplants):

- From the Transplant Doctor’s Point of View: A scientific article from the journal Hematology
discussing how stem cell donors are evaluated and common side effects reported by both marrow
and PBSC donors:

- From the Transplant Nurse's Point of View: A newsletter for transplant nurses on a bone marrow
transplant floor at Stanford Hospital.

FAQs

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:56:00 +0000

Some of the questions I’ve been asked along the way

1) Do you have to pay anything to be a donor?

Absolutely not. All costs related to the donation process are paid for or reimbursed by the Be The Match Registry.

2) Will you receive updates on how your recipient is doing?

Yes. I will receive an update around 30 days, 6 months, and 1 year post-transplant.

3) Will you get to meet your recipient?

Possibly. My recipient is at a transplant center that allows direct contact after a period of 1 year, provided both of us sign consent forms allowing our information to be released to the other. Until that time, we are allowed to send anonymous letters. These letters must be sent through the registry and be devoid of all personal details such as names, locations, job titles, etc.

I think it is very important to not go into this process with an expectation of meeting your recipient. For many different reasons, you may not get to meet them. Meeting the recipient, while a wonderful thing, is not what this process is about. It’s about giving them a second chance at life.

4) Where are you having the PBSC procedure done?

I completed the PBSC procedure as an outpatient at an apheresis center located within a major hospital complex about 1 ½ hours from my home town.

5) Did it hurt? Did you experience any side effects?

Nope. The PBSC procedure is almost the same as giving blood, it just takes longer and they return the uncollected blood product into your other arm.

I did not experience any side effects from the collection procedure itself other than feeling stiff and having a sore bum from sitting for 6 hours. I did have some of the commonly reported side effects from the Filgrastim injections. These included a mild headache, bone aches, fatigue, and trouble sleeping.

6) Would you do it again?

In a heartbeat.

7) How can I register to become a bone marrow donor?

Attend a donor drive in your local area or go to www.bethematch.org to order your swab kit today.

Have a question that wasn't answered here? Send it to me and I'll respond back to you.

Reflections

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:47:00 +0000

Reflecting back on the donation process, I had thought my experience would slowly fade into a golden nugget of a memory. Instead, it has done just the opposite and seems to grow in magnitude every time I share my experience and hear the reactions of others.

This has been an incredible experience. Unfortunately I’m not enough of a wordsmith to be able to describe it in a more grandiose fashion. I apologize for that.

The greatest challenge for me as a donor was the mental aspect. The medical requirements were a breeze to get through, they just required a bit of my time. I found myself worrying often about my recipient and wondering if anything would happen to delay, or even worse, cancel the donation. To mentally psych myself up for the donation but simultaneously prepare for the fact it might be delayed or cancelled was not easy.

As someone who likes to be in control, it was difficult to be in a situation where I had very little. The only thing within my power was to ensure I completed all of the steps I needed to as quickly as possible in order to prepare for the collection procedure. This is where I tried to focus my energy.

For those who are considering joining the registry but wonder if they have what it takes to donate, I hope reading through my experience has helped you decide to join.

For those who have received the call, congratulations! You have been handed an opportunity to experience something incredibly rare. If you have questions, talk to your donor center representative or your apheresis/blood center staff. They are there to help you through the process. Feel free to contact me with any questions you might have about my experience. Also, and perhaps most importantly; this experience, while it seems to drag on at times, will pass very quickly. Engage in the experience and treasure it.

For those who are recipients or are related to a recipient, you have the hardest part of this experience. I have absolutely no illusions about that. Us donors have the easy part. I hope that by sharing my experience you understand what your particular donor might be experiencing as they go through the donation process. I wish every single one of you good luck as you continue on your journey back to full health.

For my recipient: during the numerous blood draws I went through, I had occasionally glimpsed your patient number on the blood tubes right next to where my donor number appeared. It was a suitable analogy for the donation process, two anonymous people, represented by two numbers, completely unknown to the other. Behind each number is a living, breathing human being; a human being who feels happiness, sorrow, and joy. Human beings who have one hell of a story to tell. This was mine. I hope to hear yours one day.

Recovery

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:38:00 +0000

Recovery has been extremely fast after the PBSC collection.

The day of collection

The most painful part of the procedure was when they removed the tape from my right arm that had held the “in-port” stationary. The tape unfortunately took some arm hair with it – a feeling similar to having your eyebrows waxed.

While this hurt I must admit I am a wimp when it comes to pulling band-aids off. You can draw all the blood you want, but please don’t smash that band-aid down into my arm hair.

The only side effect I felt from the collection procedure was the body stiffness and aching I felt from not moving for over 6 hours. Once I was able to get on my feet and moving, the stiffness worked itself out within the hour. The ache was solely in my backside from having lounged on it all day. This ache slowly worked itself out over the evening and was completely gone by the morning.

Upon returning home, Mom and I were able to take a slow, ambling walk through my neighborhood. I had expected to feel completely exhausted but I just felt a mild sense of fatigue mixed with a surprising sense of being hyper. It was an odd feeling.

The evening of the collection, I was feeling 95% back to normal with no ill effects from the procedure itself. My IV sites looked beautiful. There was no pain or bruising. You would have no idea I had done anything so serious earlier that day.

My IV sites ~5 hours post PBSC collection. No pain, no bruising, no problems!

I was still feeling some aches from the Filgrastim, but they had changed from a sharp pain back to a dull ache. I had been told that most of the aching would be gone within 24 hours of stopping the Filgrastim injections.

The day after collection

I awoke with the knowledge that my stem cells had already been or were currently being infused into my recipient. This thought left me with an incredible sense of happiness and peace.

Over the course of the day, Mom and I took more walks. Walking seemed to help my body the most by getting all of the kinks and knots out of my muscles and all of my blood flowing again.

I was still feeling a very slight ache in my pelvic bones from the Filgrastim, but this was the only noticeable symptom left from the entire process.

That evening I was feeling 99% back to normal.

In the days that followed

I felt 100% within 48 hours of the procedure. The fatigue and bone aches from the Filgrastim had completely disappeared and my sleep patterns were thankfully back to normal.

While I felt great, my post-collection CBC had shown a low platelet count, which is a normal side effect of the procedure. My body was already busy making new platelets, and my platelet count would quickly start trending upwards until they reached normal levels in a few days.

Until that time, I was advised to avoid the gym and alcohol. My surrogate drinkers once again stepped in like champions to help. Oddly enough, no one volunteered to be my gym surrogate.

The Filgrastim Injections and PBSC Collection Procedure

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:32:00 +0000

It’s the night before my first Filgrastim injection.

I’ll be travelling to my apheresis center to receive my first Filgrastim injection, as it has to be given under medical supervision in the event of an adverse reaction. Additional blood work (a Complete Blood Count, or CBC) also needs to be drawn prior to the first injection to determine the level of white blood cells, platelets, and stem cells in my bloodstream.

This CBC will be used as a baseline for comparison for CBCs drawn immediately prior to the PBSC procedure and immediately after the procedure. The results from all three CBCs will show how many stem cells my body produced due to the Filgrastim injections, and also how my body handled the PBSC procedure.

I’m nervous. I’m not going to lie about that. But I’m not nervous for the reasons you might think. I am not worried about the injections or the blood draws. I’m not even nervous about the collection procedure. I’m worried that something will go wrong and cause the PBSC collection to be delayed, or even worse, cancelled.

Today is Day -6 for my recipient. Six days until transplant (Day 0). This is the day she checks into the hospital to begin her chemotherapy and radiation. This is the day she fully puts her trust into the hands of her transplant team . . .and also into mine. I can’t imagine what is going through her mind.

Day 1 of Filgrastim

I am up early so I can get dressed, eat a full breakfast, and attempt to get my mind in order before heading to the apheresis center. I’m feeling calmer than I expected.

My wonderful friend, Cheryl arrives to travel with me. She has volunteered to be my hand holder for the day. Cheryl has a wonderfully calm presence and I knew she would be good company. Her duties for the day included: providing good conversation, driving my car if I felt unwell or simply didn’t want to, soothing any nerves (mine, not hers), and of utmost importance – she was to serve as my surrogate drinker.

Alcohol consumption is not encouraged while taking Filgrastim. This was unfortunate, as I had found a local brewpub near the apheresis center where I was planning on stopping for lunch. The pub had just brewed a double chocolate stout that I would not be able to partake of. I had hopes my surrogate drinker would be nice enough to drink a pint of it in my honor (and maybe even let me take a tiny sip of it).

The appointment lasted about 40 minutes. A vial of blood was drawn for the CBC and then the Filgrastim was injected. Two syringes, one in the back of each arm in that lovely strip of fat that us ladies are so fond of.

The amount of Filgrastim injected depends on your weight and since only a certain volume can be injected into any one spot of your body, more than one injection can be required. The injection needs to be into fat, so the back of the arms, belly, and thighs are the most frequent injection sites.

I only felt a slight sting when the needle was inserted and as the drug was pushed in. The sting was very similar to a mosquito bite and disappeared almost as soon as the needle was removed. I noticed that the doctor pinched the injection site immediately after removing the needle, which also helped to alleviate the sting.

The staff had me hang out and relax for the next 30 minutes so they could watch me for any allergic or adverse reactions. During that time we filled out additional paperwork, went over questions I had, and discussed information I needed to know for the next few days of home nurse visits and the day of collection.

Much to my relief, I had NO allergic or adverse reactions. This had been one of my main worries, one of those persistent “what-ifs” that had plagued me over the past few weeks.

Thankfully, that worry was laid to rest.

Now it was time for beer. Or, in my case time to watch someone else drink beer.

My surrogate did me proud. She reported that the double chocolate stout was awesome.

We arrived back home around mid afternoon. Fatigue was starting to set in. It had already been a long day for me, due more to the emotional side of the experience but also possibly to the Filgrastim kicking in as fatigue is a commonly reported side effect.

After recharging with a few hours of sleep, I was up in time to have dinner with friends at a new Thai restaurant in town. It was nice to kick back and relax and to update them on the donation experience to date.

But, after a few hours, I was tired again. I headed home and was in bed at the early hour of 8pm.

Day 2 of Filgrastim

As told in an e-mail update to family and friends:

Greetings from my couch!

It's the eve of Filgrastim Day 2. The home nurse arrived around 9 this morning to administer Day 2's dosage. The total visit took around 30 minutes.

Mentally I'm doing well. As we get closer to the collection date the number of things that can go wrong are exponentially decreasing. This has been my main worry to this point - possible delays or changes in patient status.

Physically I'm doing well, just a bit tired. I was exhausted yesterday so went to bed early, then ironically, tossed and turned all night. I made up for that with 2 naps today :) I am running a low-grade headache and the lumbar region of my spine is starting to ache. My tailbone and pelvic bones are also chiming in occasionally with a twinge here and there. This is a great sign the Filgrastim is working and my stem cells are migrating in mass numbers to my bloodstream.

I'll be taking it easy for the weekend; thankfully I don't have too much to do. I foresee many naps.

Mom is arriving Sunday around 1pm. I'll swing by the airport then we'll meander on up to the hotel.

Love to all

Day 3 of Filgrastim

I slept so much better last night! I was still waking up every 3 to 4 hours but thankfully I was actually sleeping in between waking up and not just tossing and turning.

Part of the difficulty in sleeping was finding a comfortable position. I found that the best positions were on my back with a large pillow raising my knees and on my right side with my top leg resting on a pillow. The pillow helps take the weight of the legs (or leg) off my lower back and sleeping on my side takes the weight off my tailbone.

The rest of the day was very much a repeat of yesterday.

The home nurse visited around 10am for my third injection.

I was able to finish up the laundry, vacuuming, bathroom scrubbing, and bed making that needed to be done before Mom arrives tomorrow.

More body parts are joining in the bone twinge craze. I feel the twinges mostly in my sternum, lower back, tailbone, and back of the pelvic bones but occasionally my ribs, shoulder blades, and top of my femur bones will join in the chorus. They feel similar to a muscle ache you would get from a good workout with the only problem being that you can’t stretch the ache out of a bone. Thankfully the twinges are gone within seconds of appearing.

Mentally I’m still feeling calm. Having a list of things to do is helping keep me occupied and moving. I also love that it’s the weekend. There’s no place I have to be, I can just slowly work my way through my to-do list and take naps when and if they’re needed.

Day 4 of Filgrastim

My sleep patterns improved again; I slept deeply last night, only waking up once.

The home nurse arrived at 9:30am to administer my 4^th dose of Filgrastim and to release me from her care.

I threw clothes in a bag and before I knew it, Mom and I were arriving at our hotel. The registry had reserved a room for us in order to remove any worries or possible complications of travelling the morning of the collection. Since it was still winter in the northeast I was happy to not have to be concerned about snow or ice on the roads.

I went down for a nap while Mom tried to walk out the stiffness of 7+ hours of airline and car travel. When I awoke I found her in the hotel bar enjoying the local paper and a second glass of white wine; which, she claimed, was in my honor. It was another shining example of my surrogate drinkers stepping up to the plate on my behalf.

Mentally, I was excited for tomorrow. I was ready to get my stem cells to my recipient. Thoughts of her had frequently been on my mind and I wondered how she was handling her treatment. I hoped she was surrounded by her family and loved ones and that she was as comfortable as possible.

Physically, this had been the most challenging day so far. My bone twinges had become very sharp. Thankfully they still only last a few seconds, but they definitely get my attention! I felt best when I was lying down in bed or sitting and relaxing with various pillows propped around me to lean on.

Day 4 as told in an e-mail update to family and friends:

Collection Day is tomorrow!

Mom and I have arrived safely at the hotel. We'll be checking in around 7am tomorrow to get my last round of Filgrastim and blood work taken, and then it's off for some breakfast while the Filgrastim kicks in and my CBC is processed. I'll probably be hooked up to the machines between 8 and 9 tomorrow and will remain a captive until they have collected the target number of stem cells they're looking for.

Wish us luck!

Love to all

Day 5 and PBSC collection

We arrived at the apheresis center just after 7am. My last dose of Filgrastim was quickly administered and more vials of blood were drawn.

Some of the vials were designated for the cryo-freezer, as these were the samples being submitted as part of the clinical trials I had joined.

Three of those vials were going immediately upstairs to be processed before the collection began. Some of the vials would be used for another CBC, Chem Profile, and Lipid Panel. And one vial would be tested for the all-important CD34+, the value that indicates the number of stem cells circulating in my blood stream. This number would allow us to ballpark how many stem cells would be in the final collection bag.

As I was to learn, today was going to be all about the numbers.

Mom and I left the apheresis center for breakfast in the cafeteria. We had one hour to eat. By the time we returned the blood tests would be in.

I had been advised to increase my calcium intake and to avoid caffeine. The calcium was to counter-effect the anti-coagulant that would be mixed into my IV of returning blood and the caffeine avoidance was to negate the need for a bathroom trip during the procedure.

My breakfast included a breakfast sandwich with a side of yogurt and fresh fruit. I skipped my normal morning cup of coffee and opted for a cup of herbal tea.

As Mom and I consumed our food at a leisurely pace, we watched some of the morning shows on the televisions in the cafeteria. Good Morning America (GMA) was on with Robin Roberts.

Robin had been diagnosed in 2012 with Myelodysplastic Syndrome (MDS) and had undergone a bone marrow transplant. Her older sister had been her stem cell donor. I had closely followed her through her transplant process and had been inspired by her grace and strength.

Following her mother’s advice of “make your mess your message”, Robin took to the airwaves to talk about bone marrow transplants and the crucial need for more donors. People across the country heard her message and flocked to join the registry. Patients who were currently facing the daunting process of a bone marrow transplant found inspiration just as Robin seemed to draw strength from the stories transplant survivors shared with her.

As GMA switched to the morning’s weather, they showed the national map. My heart sank.

A section of the country appeared to be smothered under a giant white ball of snow and ice. At the bottom of the screen sentences scrolled across in a newsfeed, snippets of which jumped out at me: “paralyzes parts of the country”, “hundreds of flights cancelled”.

Crap. I had no idea where my recipient was located. My stem cells, once collected, would be transported by a bone marrow courier straight to her. This might be a major hurdle my courier would have to deal with. I crossed my fingers that my recipient was nowhere near the affected area and the storms would not delay the courier.

By 8:40am we were back at the apheresis center. I had stopped by the restroom twice on the way back from the cafeteria to ensure I was starting the PBSC procedure on an empty bladder.

While some centers have bedpans if you need to use the restroom during a collection, I had been advised that this particular center did not deal with bedpans. Bathroom use was allowed, however they had to stop the collection procedure and unhook your lines (the IVs stayed in your arm, just the tubing was removed). You would also only have the use of one arm as the other would have a board velcroed to it to prevent bending of the arm.

I seriously wanted to avoid having to do this. My strategy going in to the procedure was simple: no caffeine, an empty bladder, and ice chips. The ice chip suggestion had come from a friend who had undergone chemotherapy treatment. The ice chips would be cold, quench the feeling of thirst, help me stay hydrated, but wouldn’t add large amounts of liquid to my body that would go straight to my bladder.

The blood tests were back. As expected, I had a high white blood cell count and the CD34+ count was in the ballpark for the amount of stem cells we needed to collect. Yes!!! I was also extremely relieved to learn the current snowstorms would not affect the delivery of my stem cells. My recipient was not located in the affected portion of the country.

Time to collect the stem cells. My “in-port” had to be inserted first. This is the IV that would return the blood back to my body after the stem cells had been removed by the apheresis machine. The needle is a smaller gauge and can be inserted in the back of your lower arm (a smaller needle means it can be inserted into a smaller vein). The IV placement allows this particular arm to be mobile enough to work on a laptop, write a letter, or work an IPod or Kindle. Since I am right handed I asked that the “in-port” be placed in this arm.

Boom. The needle was in and the port and various tubing was taped into place then wrapped with gauze.

The “out-port” was placed in the crook of the elbow on my left arm. This is the IV that would remove the blood and feed it through the apheresis machine. The needle size is the same as those used for regular blood donation. The IV placement in this arm unfortunately means that the arm must be fairly immobile.

And again, at lightning speed, the needle was in and the port and tubing was being taped into place. The pain from insertion was minimal; I honestly think the sting from the Filgrastim injections lasted longer than the pain from the needle placements.

All of the lines can be a bit intimidating, but in reality you only have 2 IV sites.
My left arm was the "out-port" and my right arm was the "in-port". The extra lines
mixed in saline and anti-coagulant as needed to keep the process running
smoothly (literally). I referred to those lines as my Lime-Aid and Gatorade lines
as they had a faint green and yellow tinge.

It was 8:50am, we were off and running. Or more appropriately, the procedure was off and running. I, on the other hand was attached to a 40-pound machine via an IV leash. I, most certainly, was not going anywhere for the next few hours.

Time to plug in my earbuds, turn on my IPod, and take my first nap of the day.

I awoke shortly after I had fallen asleep. The apheresis machine was beeping. A nurse came over to check the machine’s computer screen. She explained that it is common for the patient’s veins to take 10 or 20 minutes to “plump up” and deliver a continuous flow of blood. The beeping was the machine simply alerting there was not a smooth flow established yet.

The nurse asked me to squeeze a foam disk in my left hand to help establish that flow. A few minutes later, my veins had plumped up and the apheresis machine was happy. I went back to sleep.

I slept off and on for the next few hours. While I slept Mom sat at the foot of my bed, keeping watch.

During the times I was awake, I talked with the staff. Dan, the head of the center, had been doing stem cell collection for over 20 years. He was able to explain what would happen inside my recipient’s body when she received my stem cells.

Depending on the preparatory regimen my recipient had undergone, her bone marrow might have been either completely obliterated (myeloablative), or only partially obliterated (non-myeloablative). If she had undergone the non-myeloablative treatment, she would have some bone marrow remaining in her body.

After treatment, her body would begin signaling her marrow that it needed to produce more red blood cells, white blood cells, and platelets. At the same time her marrow would be producing new cells, my infused stem cells will begin settling in and creating new, healthy marrow that would also produce it’s own line of red blood cells, white blood cells, and platelets.

And that’s when our two bloodlines would go to war.

My cells will quite literally be on a “seek and destroy” mission. Each of our cell lines will recognize the other as foreign and move to kill them.

The hope is that my cells will kill my recipient’s cells faster than hers can kill mine. My cells have several advantages in the fight since they’re healthy and my recipient is on immunosuppressive drugs to decrease her reaction to my cells.

If my cells win, they will establish a new system of bone marrow that is completely mine. All of her future blood draws would have my DNA (and blood type). If some of her marrow survives, it’s possible she will have 2 sets of DNA in her blood – hers and mine. This is known as chimerism.

Up until this point in the procedure, I had been giving my stem cells a pep talk (in my head, not out loud) to let them know they were going to a new home, one they needed to recognize as theirs and fiercely protect. When I heard my stem cells were possibly going to battle, the pep talk quickly changed to a new one that told them to burn their new house down to the foundation, re-build it from the ground up and protect it from all foreign invaders.

Silly, I know, but I’ve seen the power of positive thinking and optimism and was hoping that my thoughts would somehow rub off on my stem cells, providing just that extra bit of luck for my recipient.

I thought frequently of her during the collection procedure. She had completed her chemo regimen the day before and today was her day of rest. I wondered how she was doing and what she was thinking. I hoped she had a loved one nearby, keeping watch over her, just as I had someone with me.

Around noon, the collection bag had a respectable amount of fluid in it. It was time to draw a lab off the bag to tell us how many stem cells were present. A nurse gently mixed the contents of the bag to ensure the cells were evenly mixed so the sample drawn would give an accurate estimate of the contents. She opened a valve at the bottom of the bag and one of the attached vials filled with fluid. The vial was gently clipped off and it was immediately sent upstairs for analysis.

The CD34+ count was back within the hour. Based on the number of stem cells present, we would fall just short of the number the patient’s transplant team had asked for. The courier was scheduled to arrive between 3 and 3:30pm. The apheresis staff hoped to have the stem cells packaged and ready to leave with the courier by 3:45pm.

There were two options available: let the collection continue for 45 minutes longer than planned, which would get us the number of stem cells the transplant team had asked for or end the collection at the scheduled time and send the number of stem cells we had.

Each option had its pros and cons. If we let the collection go longer we would collect the target number of stem cells but we also ran the risk of the courier missing his flight. Given the time of day, he was likely on the last flight of the evening. If he didn’t make it he’d have to spend the night and get the first flight in the morning.

This would cause a delay in the patient receiving the transplant and possibly pose a challenge in keeping the stem cells fresh during transport. From the time the stem cells are collected, they have a natural life span. The goal is usually to get the stem cells to the recipient within 12 hours of collection (24 hours for international transplants).

The other option was to ask the transplant team if the projected number of stem cells to be collected was acceptable. If the transplant team said yes, the collection would end as scheduled and the courier would make his flight. On the down side, more stem cells are always better than fewer when going to transplant.

The decision was up to the transplant team. The apheresis center made the phone call.

Due to strict privacy rules enacted by the Be The Match registry, the collection center where the donor is located does not have direct contact with the transplant center where the recipient is located (and vice versa). This is to protect the privacy of both individuals and to ensure that medical decisions are made in the best interest of each patient (while I was the donor, I was also considered to be a patient at my apheresis center).

Phone calls from the apheresis center had to go first to my donor center representative, be routed through the national office of the Be The Match registry (the only party that had access to both donor and recipient information), and finally to the transplant center where my recipient was located.

As you can imagine, this took a bit of time.

Just after 2:30pm, the transplant team’s decision came in. They were happy with the number of stem cells we had! The collection procedure would end as scheduled at 3:15pm.

The apheresis center exploded into a frenzy of activity. The apheresis machine was kicked into a faster collection rate in an effort to collect as many stem cells as possible. While the machine was being adjusted, the rest of the staff started working the phone lines. One call was to the lab upstairs to notify them I would be “off machine” at 3:15pm and to expect 2 vials soon after that. One of the vials would be from the collection bag; the second would be from my IV line for one last CBC.

Specific tests had to be run on the final “product” as the stem cells are called. The all-important final count of CD34+ is just one of the tests that would be run. Since a transplant depended on these tests, a lab person would be waiting for the vials in order to immediately begin the testing. The CBC would give a post PBSC collection “snapshot” of my blood levels. Specifically, my platelet levels needed to be checked. If they were found to be below a certain number I would need to be carefully monitored.

Other phone calls went to the courier to update him of my ending time and to my donor center representative to give a complete progress report.

Before I knew it, it was 3:15pm. The collection was stopped and the precious bag of stem cells was removed. As a vial was drawn from the collection bag, one last final vial of blood was taken from my IV line. The vials were immediately handed to a staff member who rushed it to the waiting lab.

My bag of stem cells just before the PBSC collection ended.
It is very humbling to think what this tiny bag represents to my recipient.

The apheresis machine was flushed with saline and then run in reverse to put any remaining blood in the IV lines back into my body. And then the lines could be removed. The “out-port” in my left arm was the first to come out, followed by the “in-port” in my right arm. The IV sites were covered with a small piece of gauze then bandaged into place with an adhesive wrap.

I was able to take a quick photo with my stem cells before they were hustled away. My impression of the bag was that it was much smaller than I expected. Mom’s impression was that it looked like V8 juice.

The collection had taken 6 ½ hours. After sitting still for that amount of time I had some critical business to take care of. I was able to slowly shuffle to the restroom.

Standing was interesting, as was walking. I felt heavy, as if my arms and legs weighed 50 pounds each, and very stiff. I was so ready to get my body moving again, to try and get the stiffness worked out of it.

Mom and I gathered our belongings and said our goodbyes to the staff. As we left the center with me using Mom’s shoulder for balance, we passed into the waiting room where a distinguished looking gentleman was sitting. My courier.

The man had a calm presence of competence about him. He was looking down at a folder of papers and did not look up as we entered the room.

I stepped away from Mom and gently touched the man on his knee to gain his attention. In that moment I wanted him to know how much I appreciated the life saving work he did and that I understood the responsibility he shouldered every time he was on a courier mission.

A lump came into my throat and tears gathered in my eyes. There was no way I was going to be able speak more than a few words.

I settled for two. “Thank you”.

As I uttered the words I felt my throat close up. Further speech was impossible at that moment.

He was startled at first but then seemed to quickly realize who I was. He smiled.

I turned back to Mom, and with my hand on her shoulder, we left.

I'm A Match! The Journey As a Bone Marrow Donor Begins

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:19:00 +0000

Last fall I received a phone call. On the other end of the line was a woman calling from the National Marrow Donor Program. She asked if I remembered back in 2001 when, as an undergraduate at Texas Tech University in Lubbock, Texas, I joined the National Marrow Donor Program registry.

Yes, I did remember. I had noticed an ad in the campus newspaper talking about efforts to add volunteer bone marrow donors to the national database. This particular donor drive was to find a match for an alumnus, Marilyn Young Stewart, who was suffering from lymphocytic leukemia.

At the time I was a regular blood donor and thought registering as a volunteer bone marrow donor would also be a good thing to do. I gave a sample of blood, filled out a short questionnaire and was on my way. Over the years I had moved frequently, zigzagging across the country as I changed jobs and went to graduate school, but I was always careful to update my contact information in the database- just in case someone needed me.

Someone did. I had been identified as a possible match for a woman with lymphoma. Was I willing to go through further testing to determine if I was the best match for them? I didn’t hesitate. Of course I was willing.

Within two hours of receiving the phone call I had filled out a short health questionnaire and been scheduled at a local lab to have blood drawn. Forty-eight hours later, the blood was drawn. I was told I would be notified of the results in 2 – 6 weeks. As the vials of blood winged their way to the lab for extensive testing, I settled in for a wait.

And I waited.

Work kept me busy writing reports and sending me to conferences.

And I waited.

I celebrated Thanksgiving on the West Coast with family and friends from college I had not seen in years.

And I waited.

The 6-week mark came and went. I contacted the registry. Any updates? No, nothing. But I should definitely hear by the 8-week mark. So again, I waited.

And 8 weeks later, just before Christmas, I received a letter. I was a suitable match! However the patient was not currently ready for a bone marrow transplant. I may be notified at some point in the future if the patient became ready to receive a transplant. In addition, since I had been through further testing there was an increased likelihood I would match with another patient in the future.

I was excited to know I was a suitable match for the patient. My biggest worry to that point was if the patient would find a match. And if she did find a match, would her match go through with the donation?

It was incredibly surreal to be so worried about a complete stranger. All I knew was their age, she was female, and she had lymphoma.

Yes, this person was a stranger to me. But this woman was someone’s daughter. She could also be a wife, mother, sister or aunt. She could even be a very young grandmother.

She was a someone to someone else. And she was loved.

If any of the people in my life were in this person’s situation, I would hope that a match would be found, and more importantly, the match would be a willing donor.

That letter could have meant so many things. Maybe the patient had gone into remission and was no longer in need of a transplant. Maybe the doctors had a few treatment options to explore before fully deciding on the transplant. Maybe several matches had been found and I was the second or third best match. Or, sadly, maybe the patient had passed away.

I sincerely wished the best for the patient and I hoped they felt comforted, knowing at least one match existed somewhere out there. I thought it was a rather wonderful Christmas present.

A month later, I got the call.

My patient had been moved to transplant status. I had been identified as the best match for them and they were hoping I would donate via Peripheral Blood Stem Cells (PBSC). Would I donate?

Yes. Of course. When?

The patient’s transplant center had a target date in mind for the transplant. That date was just weeks away, the second tightest turn around my case representative had seen. It was tight, but doable, provided the apheresis center could schedule my physical exam and PBSC collection procedure. Additional blood tests were needed (as they are at every step of the process), and while the blood is usually drawn at the physical, the tests can take up to a week to process. This was time we didn’t have, so I was sent to my local lab prior to the physical so we could get moving on the tests.

I received an information packet that included extensive information about the donation process and consent forms for the PBSC procedure and the scientific studies you are asked to join. The scientific studies are optional, participation is not required and declining to join will not prevent you from donating stem cells. However, each of these studies will further transplant research, help increase survival rates of transplant recipients, and decrease recovery time for both donor and recipient. Commitment to the trials ranged from a one-time donation of one vial of blood to a yearly phone call.

I wasn't kidding when I said the information packet was extensive.

Next up was a counseling session with my case rep over the phone. We spent an hour and a half on the phone during which we went over what to expect before, during, and after the PBSC procedure and all of the consent forms. I had many questions regarding the procedure, logistics as to how all of this was going to happen, and questions about my recipient and her condition. My case rep stressed how important it was to express any concerns I might have early in the process so they could be addressed. Backing out of a commitment to donate, especially later in the process, would likely have fatal consequences for the patient. I assured my case rep that unless she told me I was going to face long term harm from the procedure there was no way I was backing out of this. She quickly scribbled in her notes that I was “highly unlikely to back out”.

A physical was scheduled at my apheresis center. The center was located in a large hospital about an hour and a half from my hometown, so I took the day off of work to complete the required exam.

I battled a snowstorm to arrive 45 minutes late for the appointment. I had left my house at 7 in the morning and it quickly became apparent I was not going to make my scheduled appointment at 9. Thankfully the apheresis center coordinator called as soon as they opened to check on me and knew I was going to be arriving late. He told me to take as long as I needed to arrive safely, they would hold my appointment for me. That was a huge sense of relief. In that hour before the phone call I had been worrying they would have to reschedule my appointment and was kicking myself for not having left even earlier. I knew that rescheduling the appointment would likely result in a delay in the transplant for the recipient. I did not want that to happen.

At 9:45am, having battled a snowstorm and navigated an entire hospital to find the tiny apheresis center tucked into the middle of it, I tumbled in the door. I sincerely hoped I had no icicles hanging in my hair.

I was given my hospital identification card and order forms for an EKG and chest X-Ray. An extremely kind nurse from the apheresis center led me back through the maze of the hospital and up one of the towers to the EKG suite. En route she showed me the location of Outpatient Radiology where I would stop for my chest X-Ray after the EKG. I was left in the capable hands of a technician for my completely painless EKG; which took less than 3 minutes to complete. Two of those minutes were consumed with attaching all of the wires to various points on my body. Right as I was about to ask if the test was going to start the EKG tech smiled over at me and said, “Done!”. Seriously? That was it? Yup, head down to Radiology.

Outpatient Radiology had a similarly short wait. I walked in, grabbed a number from the ticket dispenser and sat down to read my book. I hadn’t gotten any further than a paragraph when I was called back. I quickly stowed my clothes in a locker and donned a runway worthy hospital gown. The X-Ray Technician led me through two poses for the chest X-Ray, one view from the side and one view from the back. Well done, ditch the gown and get dressed.

Back at the apheresis center more tests awaited. I was given an empty cup and pointed towards the restroom. Always a fun moment, especially when you drop the cup and it ricochets across the tiled room. Thank goodness it was empty. More blood was drawn and the Hematologist on staff gave me a complete physical. She listened to my heart, lungs, checked my thyroid, lymph nodes, and reflexes. We discussed my medications and allergies. All of these questions and tests were to ensure I was healthy enough to go through the PBSC procedure and to protect my recipient.

Three hours after I had arrived at the hospital, I was out the door and headed home. The snowstorm I had driven through was projected to become an ice storm by early evening so I raced home before the roads could ice over. I made it home with an hour to spare.

The next week ticked slowly by. I had completed all of the necessary paperwork, blood draws, and physical exams. In the background, my donor rep and other people at the Be The Match registry were working furiously to get the logistics, paperwork, and final approvals in place.

And word came. Ten days after the phone call telling me I was the match, final approval was in place. The procedure was a go! My donor rep booked a plane flight for my mom who was coming in to support me, and a hotel room for us the night before the PBSC collection.

The next two hours were a bit of a high for me as I started psyching myself up for the process that would lead up to the PBSC collection. My recipient would check into the hospital mid-week to begin her workup. I would begin the Filgrastim injections the following day. This was only 3 days away from happening!

And then, as I was walking out the door at work that evening, another phone call that began with the words, “The best laid plans. . .”. My recipient’s pre-procedure blood tests had come back showing elevated levels. Her transplant team wanted to immediately re-schedule the PBSC procedure for a few weeks later. Was I able to delay? If not, I would go through with the PBSC collection as planned and my stem cells would be cryogenically frozen until my recipient was stable enough to receive the transplant.

I chose to reschedule the PBSC collection. The plane flights and hotel reservations were cancelled. And I went back to waiting.

I hated the wait. Since the moment I had been told I was the best match I felt like I was in a race against cancer. A race to get my stem cells collected and sent to my recipient. I was ready to pull on the boxing gloves and go few rounds with her cancer, but I had to wait.

I watched the calendar as the days ticked by. Some of my blood work such as testing for infectious diseases and pregnancy had to be repeated, as these tests must be negative for 2 weeks prior to the PBSC collection.

The days passed and then we were down to a matter of hours. I crossed my fingers that the phone wouldn’t ring with news of another delay. Then I crossed my toes.

The beginning of the week arrived. My recipient was scheduled to check in to the hospital and begin her work up the next day. I was scheduled to begin my Filgrastim injections on the day following that. So again, we booked the airline flights and reserved the hotel room.

I continued to watch the clock. As we drew closer to the day my recipient would begin treatment I knew the window of opportunity for things to go wrong was shrinking rapidly. If anything major had appeared on her pre-procedure blood tests I would have already been notified. However, I had also been told it was possible for my recipient to check in to the hospital and the transplant be cancelled at the last minute (for instance, if an infection is found). Depending on the physical location of my recipient and a possible difference in time zones between us, there was a tiny chance I could receive a phone call en route to the apheresis center to begin my Filgrastim injections and be told the procedure had been cancelled.

This was literally down to the wire.

My phone was silent.

Mid-week arrived, my recipient would soon be checking into the hospital and beginning her chemotherapy and radiation treatments. These treatments would destroy her immune system to prepare her bone marrow for my stem cells. If she did not receive my stem cells after having her immune system destroyed she would die.

I felt incredibly humbled by the amount of trust and hope being placed in my hands. Thankfully, the wonderful people at the Be The Match Registry and at my apheresis center were supporting me every step of the way. I was being watched over and taken care of.

And then- it was my turn. Time to start my preparations.

A Quick Description of Bone Marrow Transplants

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 00:13:00 +0000

Each year, over 10,000 people in the United States suffering from blood cancers such as leukemia and lymphoma are told they need a bone marrow transplant to survive. The doctors first search the patient’s family for a possible match. Unfortunately around 70% of these patients will not find a match within their family. In these cases, the doctors turn to public databases of volunteer bone marrow donors such as Be The Match registry. The registry connects patients with volunteer donors.

When a volunteer joins the database, they have a swab taken of their cheek cells (I joined long before this method was widely used and gave a blood sample). These cells are tissue typed to determine that persons HLA profile (Human Leukocyte Antigen). An HLA profile is simply a snapshot of the genetic markers that make up your immune system.

The donor and patient HLA profiles are compared. To be considered for transplant they must match at a minimum of 5 of 6 points on 3 major markers (HLA A, HLA B, and HLA C) in order to be considered for transplant.

Each of us inherits 1 set of genes from our mother and 1 set of genes from our father for each of these major markers. This is why there are 6 points for the 3 major markers.

A perfect match is considered a 10 of 10 (they look at minor markers HLA DRB1 and HLA DQ). The better the HLA match, the higher the chance of a successful transplant. Blood types do not matter at all. In fact, if the blood types of the donor and recipient are different, the recipient’s blood type will switch to their donor’s after the transplant (see the cool facts below).

The name “Bone Marrow Transplant” is a bit of a misnomer. In reality, the donor is giving some of the blood stem cells that live in their bone marrow (called hematopoietic stem cells). These stem cells are the young cells that can become red blood cells, platelets, and white blood cells (the basis of our immune system). There are many different types of stem cells, check out this NIH page for more information about stem cells.

There are two methods of collecting stem cells; bone marrow harvest (used 25% of the time) and Peripheral Blood Stem Cell collection (used 75% of the time).

Bone marrow harvesting is by far the most well known collection method. This method is done as an outpatient procedure with the donor under general anesthesia. A small bit of bone marrow is extracted from the back of the donor’s pelvic bone. The bone marrow replaces itself naturally within 4 to 6 weeks. Contrary to popular belief, this procedure is not painful but donors will likely feel a bit sore at the collection site. Click here for a 46 second video of the bone marrow collection procedure:

Peripheral Blood Stem Cell, or PBSC, collection is by far the most common method used today. This method is also done as an outpatient procedure. For five days leading up to donation you are given an injection of Filgrastim, a drug that stimulates your body to increase production of stem cells and causes them to migrate from your bone marrow to your blood stream. Your blood is then removed through an IV in one arm and passed through an apheresis machine that separates out the stem cells. The remaining blood is then returned to you in an IV in your other arm. Your stem cells replace themselves naturally within 4 to 6 weeks. Click here for a 45 second video of the PBSC collection procedure:

The stem cells, once collected, will be sent via a specially trained courier to the patient's transplant center (the donor and recipient are not at the same facility). The transplant is a very anti-climactic IV drip into the patient and usually occurs within 12 – 24 hours of the collection. The infusion can take anywhere from 1 to 3 hours. Once in the patient's body, the stem cells know to migrate to the bone marrow where they will “engraft” and begin producing white blood cells and other blood products. Engraftment usually occurs in 10 to 20 days after the transplant and is signaled by a sudden and sustained jump in the patient’s white blood cell count.

In order to prepare the patient for transplant, they are given high doses of chemotherapy and possibly total body radiation therapy. The type and length of treatment varies between patients and is based on age, disease, and severity of the disease. The treatment hopefully destroys all cancer cells in the patient’s body along with the blood-forming cells in the bone marrow. This serves to “clean out” the old bone marrow and create room for the newly infused stem cells. The treatment also destroys the patient’s immune system to prevent it from attacking the new stem cells.

The new stem cells are responsible for not only creating new blood cells but also fighting any remaining cancer cells. They are literally on a “seek and destroy” mission. It’s very similar to a computer being restored to "factory settings" where the transplant team uses the donor’s stem cells to re-boot the patient’s immune system. If the transplant works perfectly the patient will become cancer free.

Sometimes (less than 10% of the time) an additional blood donation is asked of the donor for the recipient. The request could be for: T-cells (a type of white blood cell), PBSC, Marrow, Whole Blood, or Platelets.

For more information on what the transplant process is like for the recipient go to this page. This page also includes the benchmarks of the recovery process for the recipient.

Recovery time for the donor post-donation varies based on the collection procedure. PBSC donors usually report full recovery in 2-7 days and Marrow donors usually report full recovery in a few weeks. Both types of donors can usually resume normal activities within 24 to 48 hours of their procedure.

Really cool facts about Bone Marrow Transplants:

-Post-transplant, the recipient will switch to their donor’s blood type (if they’re not already). This is because the donor’s stem cells (which carry the donor’s DNA) are producing the new blood cells.

-The recipient will carry their donor’s DNA in their blood. This is called chimerism and the degree to which this can happen is explained here. (Look under “Steps of a reduced-intensity transplant”, #3.)

-The odds of a patient finding an unrelated donor with their HLA profile: 1 in 20,000.

-1 in 40 members of the Be The Match Registry will be asked to undergo further blood testing as a preliminary match.

-1 in 540 members of the Be The Match Registry will actually go on to donate.

-It is impossible to determine the odds of any one person on the registry being called to donate since the match is determined by tissue type. Due to the variation, you might have a common tissue type and be one of many possible matches for a patient. On the flip side, you might be the only person out of the 10.5 million registry members who can save a person’s life.

-The odds of a Caucasian finding a match in the database is >90%. Non-Caucasians are not well represented in the database so the odds decrease dramatically for non-Caucasians.

-Over 25,000 bone marrow transplants are performed worldwide each year. The Be The Match registry facilitates approximately 5,200 of these transplants. If you are called to donate it is possible your recipient lives outside of the United States.

-The Be The Match Registry receives around 3,000 queries each day for patients looking for donors.

-Identities of donors and recipients are required by law to be kept confidential. The donor will know the age, sex, and medical condition of their recipient. The recipient will know the age and sex of their donor. Depending on the specific regulations of the transplant center, contact may be made after a period of one year if the donor and recipient sign consent forms releasing their information to each other.

Still have questions? Information regarding all things Bone Marrow Transplant can be found on the Be The Match registry’s website: http://marrow.org. The information is written for non-medical professionals and is very understandable. For information focused on donors and the process they go through, go to this page: http://marrow.org/Registry_Members/Donation/Donation.aspx.

A timeline of what happens after you join the registry, are selected as a possible match, and are selected to donate can be found here: http://marrow.org/Registry_Members/Now_That_You_ve_Joined.aspx

The Voice Behind the Story

noreply@blogger.com (Unknown) — Mon, 11 Mar 2013 23:47:00 +0000

I am a young 30 something female living in the United States. I was someone’s match. This is my story.

Every year over 10,000 people in the United States need a bone marrow transplant to survive. 30% of these people will find matches within their own family. The remaining 70% rely on donor databases, of which Be The Match is the largest at 10 million. Half of these people will find a match. The other half will not.

More people need to be on the registry, period. It is easy and painless to sign up. Every person added to the registry gives hope to those who are searching for their match. Donors that are Hispanic/Latino, African-American/black, American Indian, Asian, and those of mixed race are especially needed. Matches are dependent on DNA and are therefore more likely to occur between people that share ethnic backgrounds.

There are 2 major barriers to people joining the registry: lack of awareness and fear. Most people have not heard of the Be The Match Registry, even the medical people I visited with throughout this experience. The other people believed the donation process to be extremely painful with a long recovery time. This is completely wrong.

I hope by sharing my experience that I can help spread awareness and remove that barrier of fear. If you have questions, please do not hesitate to post a comment or e-mail me.