Sunday, February 12, 2017

Anonymous PBSC (Peripheral Blood Stem Cell) Bone Marrow Donation via Be The Match

If we are IG and/or Snapchat buds, you've likely been inundated with my copious after-school-special PSA stories / snaps about my experience as an anonymous bone marrow donor through the Be The Match Registry. If you're at all interested in the anonymous marrow donation process and are hankering for an honest donor testimony, you've come to the right place! {And, if you found my updates highly obnoxious or smug, hold onto your butts, because I'm not done yet.}

Every3min

Registering with Be The Match

I first registered with Be The Match in 2004.  On September 11, 2001, I was a college freshman, just 3 weeks into my first year at Wake Forest. Surrounded by strangers and feeling helpless, I started donating blood monthly at the American Red Cross.  I soon discovered whole blood donation made me feel like complete ass {I have low iron}, but I could donate platelets through apheresis {whole blood is taken out from a needle in one arm, spun through a centrifuge to separate platelets from the rest of your blood, platelets are collected, and the rest of your blood is returned through a needle in your other arm} with no issues.  Needles don't bother me so being hooked up to the machine for an hour was no big deal and I could donate more often. Through my involvement with the American Red Cross, I helped with a bone marrow registry drive on campus my junior year.

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Back then, registering required a blood sample.  Now, anyone who is interested can order an at-home cheek swab through BeTheMatch.org. For registrants ages 18-44, the process is free of charge.  Interested persons between 44 and 60 years of age are welcome to register but will be asked to make a $100 donation.

Once you've registered, you wait! Just remember to update the registry whenever your contact information changes so you can be reached quickly if you are preliminarily matched!

The Preliminary Match

I sat on the registry for 10 years before I heard anything from Be The Match.  In June of 2014, I was contacted as a potential match for a woman in her 60s living in the United States who was battling Acute Myeloid Leukemia {the patient's age, sex, specific blood cancer and whether s/he is domestic or international are the only pieces of information a donor receives about the recipient at the outset}. After confirming I was still interested in being a marrow donor, I was sent for a blood screen to determine if I was the best match for the patient {the registry often pulls up multiple potential matches for a particular patient; the transplant surgeon will ultimately determine who is the very best bet for donation after reviewing the blood screens}.  The blood screen occurred very quickly after the first call -- within the week. I also completed a super, super thorough phone interview regarding my health {get ready to answer A LOT of questions about your sexual history}. My coordinator also reviewed the two processes by which donation occurs {more on that later} and asked if I would be okay with either the PBSC donation or the traditional hip aspiration. While most people think of the hip aspiration when they think about marrow donation, the PBSC is actually more common by far nowadays {the aspiration is normally only requested for recipients under the age of 19 because the cells collected are more immature and align more perfectly with a child's biology}.  PBSC requires 5 days worth of filgrastim injections {again, more on that later} to mass produce white blood cells.  This is not a medication that can be taken when you are nursing, which I was at the time.  I was honest and told my coordinator I wasn't entirely sure I'd be willing to give up nursing {B was only 3 months old} at that point, but we decided to wait and see what the results of the screen were before crossing me out as a potential donor.

I was told the timeframe for the recipient's doctor to make a decision on the bloodwork would be anywhere between 30 and 60 days.  A month after my blood test, I was informed that I actually was the best match for the patient, but that the patient had decided not to go forward with the treatment. Potential donors are not given a concrete reason for why a patient makes this decision.  I still think about this woman and hope against hope she made a miraculous recovery thus negating the need for a transfer.

So, I went back on the registry and waited.  Two years to practically the day in June 2016, I received another call -- this time asking if I'd be willing to donate to a 59 year old man living in the States, also suffering from AML. I went through the exact same process again -- the long health interview {now with Zika and Ebola inquiries!} + the bloodwork.  About a month later, same result -- I was the best match for the patient, but he had decided not to pursue treatment.  I have no clue how this scenario stands in the odds game {but here's a general registry numbers breakdown for you, if you're interested}, but I definitely had a ton of mixed emotions after that second "rejection" call -- mostly, I just felt deeply for the patient, knowing what a horrible disease AML is and understanding that declining treatment usually doesn't happen for happy, healthy reasons.

Surprise! The Next Steps in Donation

To my dismay, my coordinator {coordinators are regional -- mine is located in Dallas} called me right before Christmas and said the patient I'd been matched with in June had a change in situation and was ready to attempt transfer!  At the time, I was 100% excited -- so happy this man still had a chance at treatment and so humbled to be able to be a part of that process for him.  During that same call, my coordinator told me the transplant surgeon was asking for PBSC donation.  {If you'd like to read about the alternative: hip aspiration, here's some info.}

Time Out: Peripheral Blood Stem Cell (PBSC) Donation:

The exact same cells found in bone marrow are also floating around in your blood like an immuno-charged lazy river.  PBSCs are collected through apheresis just like platelets -- whole blood comes out of one arm, PBSCs are separated in a centrifuge, the rest of your blood is injected back into the other arm... except this is platelet donation on crack.  Donors take a medication called filgrastim 4 days prior to the procedure as well as one last done the morning of; filgrastim stimulates your bones to mass produce white blood cells. The procedure itself can take up to 8 hours.  It might completed in one day or require an additional day of collection. Any bumps in the road can require a central line {yep, more on that later, too} or changing course to the hip aspiration.  Any procedure for the donor has to be perfectly timed with the recipient, who is taking massive doses of chemo in order to completely wipe out the entirety of his/her immune system.

Time In: My coordinator informed me the transplant team was aiming for a transfer date of February 6th or 13th.  Since my birthday is the 13th, we signed on for the 6th.  She FedExed me a massive stack of information and consent forms and gave me 3 weeks to look everything over before our big phone interview walking through all of the worst-case scenarios. Up to this point, I'd watched a bunch of donor testimonies and knew generally what to expect, but I hadn't done a ton of research on filgrastim. I knew most donors experienced bone aches, headaches, and very mild flu-like symptoms that disappeared very soon after donation. I wasn't aware that the most common {but still very uncommon} side effect is spleen enlargement / rupture... so I definitely asked a bunch of questions about that {my coordinator said they've never had a donor with a spleen rupture} and had a doctor friend assure me my spleen isn't actually terribly important.  Dosing healthy PBSC donors with filgrastim is an off-market use of the drug which was not all that concerning to me at this point in the process, but really bothered E. He was very much in the pragmatic "what if you take this drug while trying to do something good for someone else but end up with cancer yourself in 5 years because of it?" camp. I'll be completely honest -- I totally {and unfairly} dismissed his concerns.  I really never considered not donating, despite any risk, real or imagined.  I do wish we'd done more independent research together, because I definitely signed all those scary consent forms {and the very-worst-case-scenario life insurance policy} unilaterally without giving any pause to my loved ones' uncertainties.

Time Out: Long-Term Side Effects of Filgrastim:

Had we really delved deeply into research on filgrastim at this juncture, we wouldn't have found a ton of information on long-term side effects of taking the drug as a young, healthy PBSC donor. Filgrastim has been used for this purpose since 1999, and there is an ongoing study {that I am participating in}, but it won't be complete until 2022.  Currently, experts seem to agree a one-time use by an otherwise healthy individual *probably* doesn't increase or decrease that individual's likelihood of developing a related, life-threatening illness in the future.  But again, it hasn't been widely studied.  Here are three articles I found {after I started taking filgrastim and the side effects were more than I was anticipating and I had a minor-yet-intense internal panic attack} that were somewhat informative:

Risks for Healthy PBSC Donors? One Family's Powerful Experience

Long-Term Safety of Filgrastim Administration

A Response to the Article Above

I really do wish Be The Match would include articles such as these in their literature; obviously donors should do their own research, but I do feel like filgrastim was downplayed {once again... more on this later!}.  But, spoiler alert, if I had a do-over, I'd still go through the donor process again.

Time In: My other concern after reading the materials was the likelihood of central line placement. Be The Match stated 1 in 5 female donors necessitate a central line due to arm vein finickiness.  I read that a central line is a catheter placed in your jugular under local anesthesia.  Again, I feel like this description was downplayed.  I would have done a ton more research on this as a needle in my neck did not sound like a fun time to me, but my coordinator assured me we'd talk more about the central line if the doctor at my upcoming physical felt my veins might pose a problem. So, I pretty much tabled any further consideration of the central line, signed a million consent forms, and FedExed all my paperwork back.

Donor Physical & Follow-Ups

Next on my donor to-do list was a complete physical. {Note: Be The Match coordinators set all these appointments up for donors and everything is free of cost to the donor (your insurance won't even know these appointments are occurring).  I found all the scheduling to be very smooth, and my coordinator was very cognizant of my schedule.}  The physical included all the usual suspects {weight, height, blood pressure, medical history, etc} as well as a pregnancy test, a very thorough inspection of my veins, and 14 vials of blood drawn. The doctor seemed to think my veins would handle the procedure with no issues -- not shocking since I've never had problems before but still a relief {FORESHADOWING}.  This is the point where I officially put the central line out of my mind.

After the physical, it's mostly a waiting game until it's time to administer the filgrastim and actually donate {unless, I suppose, bloodwork comes back with some surprise communicable disease that disqualifies you as a donor... it was nice to get a full blood panel for free!}.  There was a mixup with my bloodwork -- apparently there were 3 additional vials that didn't get drawn so I popped over to a lab to get that squared away.  Also, they REALLY do not want their donors to be pregnant, so I took 2 more pregnancy tests {also blood draws}.  There is a lab super close to work, so I just did these 3 draws on my lunch break in about 20 minutes. When all was said and done, the donation process involved over 25 vials of blood drawn in addition to the actual donation.

Filgrastim Injections

2 weeks prior to donation, a styrofoam ice chest was couriered to my home.  I was told to confirm its receipt, take everything out of the ice chest, and put everything in the fridge -- which I did.  Now, here comes my big critique of Be The Match... I was never given an itemized list of what SHOULD be in the cooler or what was ACTUALLY in the cooler.  Everything was packed in multiple zip locks {some opaque} and it was super hard for me to determine what they'd actually sent me, but I wasn't concerned; I assumed everything was ticking along as it was supposed to. This became a massive, massive issue when my home health care nurse {also scheduled by my coordinator} showed up at 6 am on Thursday, February 6 to give me my first injection and discovered we didn't have the actual vials of medication {they are TINY}. We are not sure what happened {and I was asked several times if I could have thrown them away... NOPE}, but it was a Drama Llama Situation.  This is the point where I realized just how nuts filgrastim is -- it is classified as a chemotherapy drug {the courier who brought me the meds on Day 2 reminded me to "call my hospice coordinator" if I had any questions -- this is a drug normally given to very, very sick people}, is not something one can just pop on down to the pharmacy to replace, and costs over a thousand dollars per vial {and I was supposed to have been sent 12 vials}.  We did get it all worked out, but my experience with the administration of filgrastim was much more "lively" than most donors {my coordinator said she's never heard of this happening before, so, thankfully, my experience is extremely rare}. I am just so glad we discovered the issue so early in the morning, because a new single dose {3 vials} for Day 1 didn't arrive via courier until 3 pm.  Timing is everything with these donations so we were all so thankful I was able to receive the injections according to schedule.

The actual injections themselves are given in fat deposits.  I did two in the back of my arms {I knew those sausage arms would come in handy someday} but vastly preferred my love handles and FUPA -- more bruising but way less pinch. 2-3 injections per day for 4 days prior to the donation and then an additional 2 injections the morning of.  My kids found Shot Time enthralling -- I think they're bummed not to see their nurse friends this week.

Day 1 - I felt 100% normal.  This was E's birthday, and, despite all the drama, we enjoyed a really nice day together and then a super fabulous dinner out.  You are allowed to drink alcohol while taking filgrastim {although you won't feel like it after Day 1} but it can increase the intensity of the side effects the next day.

Day 2 - I felt "off" but not terrible, although I did get a bad headache that evening after receiving my second round of injections are 6 pm.  Donors may take Advil or Tylenol {no aspirin} and are encouraged to take Claritin {which decreases side effects for some magical, unknown reason}. E left before the rest of us woke up for a partnership retreat this day {Friday} so the kiddos and I flew solo.

Day 3 - This was the worst day for me by far. I had my injections in the morning so I think the side effects just compounded with two rounds being administered so closely together.  My spine, hips, neck, and ribs generally ached {this I was expecting} and I had a dull, unending headache... but the killer was the sudden, "bone-crunch-contractions."  These would come in waves and my ribs and spine would feel as if they were shattering.  I felt like a laboring mother -- each time they would hit, I'd have to stop and try to breathe through them; they definitely took my breath away. I was not expecting this reaction -- none of the donor testimonies had described these waves of pain. They weren't constant, so I wasn't incapacitated, but they were pretty shitty when they occurred. I took the kids to the trampoline park that morning since it was wet and cold outside, and we were all going to go crazy in our house, and this was the moment I started frantically Googling long-term side effects of filgrastim and began to have some crappy thoughts {the most prevalent being "I really hope this dude isn't a xenophobic, racist, sexist, MAGA fanatic}.  I'd say the morning of Day 3 was my lowest point.  I actually did feel better after a ton of Motrin, Claritin, and a nap -- good enough to celebrate E's birthday with my parents at dinner time.

Day 4 - I received my last at-home dose of filgrastim in the morning. I did not wait to take Motrin and Claritin this time -- I took it right when I got up and kept up with the Motrin every 6 hours. The waves of intense pain were still prevalent but I felt well when they weren't rolling through. We ran a few errands as a family, hit up the park, and did our grocery shopping.  I took another nap when the kids rested, and we watched the Super Bowl pre-game {#SISTERHOOD} before my ride to San Antonio arrived at 6 pm.


Donation Day

The apheresis center where I was to donate is located in San Antonio. I was a little surprised Be The Match doesn't have medical centers they contract with in Austin, but I'm always down for a trip to the Alamo City. Since I had to be hooked up to the machines at 7:30 am, BTM hired a driver to take me to San An the night before and booked me a room at the Embassy Suites.   My driver was the best -- he owns a company in Austin called The Cheap Ride {recommend!}.  Both of his parents died from blood cancers, and he does a ton of work with BTM in their honor.  He is also a 6th generation Austinite and a life-long democrat, so we had a ton to chat about.  I arrived at the hotel around 7:30 and settled in with the 2nd half of the Super Bowl and a cheesy movie on HBO.

The morning of donation, I passed on the hotel breakfast buffet and hitched a ride with Andres, the Embassy Suites shuttle driver, over to GenCure.  Andres' grandmother's AML was cured by an anonymous marrow donor 6 years prior -- I cannot tell you how serendipitous it felt to randomly get him as a driver and hear her story when he realized where he was taking me.

When I arrived at GenCure, I met Dot and Elloy -- the two nurses who would be taking care of me all day.  Elloy gave me my last 2 filgrastim injections and Dot got me all settled in my recliner.  No one else was in the apheresis center so we had a lot of fun chatting {Dot donated 12 years ago to a then-19 year old girl in London who is now living a completely healthy, normal life! She and Dot still exchange letters.} while the poking began. Elloy was an expert with veins and I was on the machine before I even knew it.  The first cannula - the "sucker outter" - is inserted into the crook of your elbow which you have to keep ram-rod straight for the entirety of the donation.  The second cannula - the "putter back inner" - is inserted into the side of your wrist so that you have movement in one arm. The movement capability is nice but that insertion is a bit of a bitch - lots of nerve endings!  The center had just received brand new apheresis machines, and the staff was super jazzed about them!  I was actually the very first donor to use them -- a virgin voyage!  As such, the center's PR staff came to take photos of me and the machine {I was not aware this would be happening; hopefully their intended audience appreciates my One Bad Mother t-shirt}.  BTM's PR guy also came to interview me on camera about my experience.  And my padre drove up to sit with me which was much, much, much appreciated -- especially later on.

The average apheresis PBSC donation takes 4-6 hours.  During this time, the entirety of your blood volume cycles through the machine FIVE TIME!  Insanity!  After 3.5 hours, I asked about using the restroom and was unhooked from the machine {I was told I might have to use a bed pan, so this was a fabulous turn of events... for the moment}.  Dot came in with me to make sure I kept my arm super straight {the cannulas remain in your arms}.  Once I got hooked back up, things started getting a little nutty.  The "sucker outter" canula was not sucking as much blood volume as the machine wanted, and Elloy fiddled around with the needled for a good 45 minutes {super unpleasant, but I am so thankful for his calm persistence} before trying to place it two more times.   My vein just wasn't cooperating.  We don't know if the vein was just irritated from 4 hours of stress or if the movement from the bathroom trip messed up with the super sensitive needle.  Regardless, my biggest piece of advice for donors is DON'T PEE.  Or, at the very least, wait until you absolutely can't stand it... and then make yourself wait 30 minutes longer.  This is the worst advice ever for bladder health, but a UTI would have been worth avoiding the ensuing dramatics.

At this point, we tried switching arms.  Elloy then spent another 30 minutes trying to get my blood pressure {which had dropped} high enough to pull from the new cannula.  It became clear it wasn't going to work and my care team started talking about other options... I was asked if I could come back the next day {of course, the answer was "yes, I could work that out if it's needed}, but also told the transplant surgeon might request a central line or the hip aspiration.  Having not thought about a central line in weeks and since hip aspiration had NEVER been on the table for me, this was pretty shocking.  I asked each care member which they'd prefer, if given the choice, and they each emphatically said the aspiration, which surprised me since the recovery time is pretty intense and it's a general anesthetic surgery.  Then they explained that the central line isn't just a needle in your neck {as I'd assumed} but a catheter that snakes all the way down into your heart, and that the chances of big-time bleeding are higher than most people are comfortable with {especially an otherwise healthy person}.  T-Pop was like HOLD THE PHONE, WHAT?!  And, I am slightly ashamed to admit I stopped feeling so giving at this particular moment.  At what point do the personal risks override the benefits to a stranger? But at the same time, how can you go this far and then say "nope! never mind!" to someone who is putting all their trust in you to follow-through?  NOT A FUN MOMENT.

The care team decided the best thing to do would be to sample the cells I'd already donated and see if there were enough to stop.  Elloy had told me I'd be donating about half of this big ol' collection bag and, eyeballing it, it looked somewhere between 1/3 and 1/2 full to me.  Everyone kept saying "well, it does look like it's probably enough"... but they'd also been a bit noncommittal about whether my white cell count from the labs that morning was as high as they'd like it to be so I was very nervous. We asked a lot of questions about the central line.  I tried to remember if either of the surgeries I had prior to my c-sections were completed under general anesthesia {pretty sure they were both "twilight sleep"}. I suggested perhaps we could give my leg veins a shot.  It was a really long 40 minutes.

Thankfully, the lab results came back and the transplant surgeon phoned in to say the cell count was sufficient for the patient.  This was a huge relief {especially looking back and knowing what my arms looked like the day after -- I am not sure trying the apheresis on Tuesday would have been a success} -- mostly because I was really concerned about upsetting the trajectory of the recipient's transplant, but, yes, #SelfishSallyAlert, I really did not want to make a quick decision about the central line vs. hip aspiration.

Since I'd already been unhooked, I was able to leave pretty much immediately -- after big hugs for Dot and Elloy and Vanessa {who was overseeing the procedure and brought me a delicious breakfast taco at the outset of the apheresis and was kind enough to pretend not to notice that I spilled salsa all over myself attempting to eat one handed}.  Dad and I hit the road before traffic and were home in time for a nap before supper -- it ended up being a much shorter day than anticipated.

Recovery

I felt pretty crappy immediately after the procedure -- I still had the sudden, bad bone "spasms" and I just felt really worn down and mildly nauseous.  I felt better after a nap, but hit the hay early that evening.  The next day {Tuesday}, I was operating at about 80% -- I felt generally well but still experienced the bone spasms when I'd get up out of a chair or change position suddenly.  I was fine working a full day at the office, but I bowed out of a neighborhood wine tasting that evening and went to bed early again.  Wednesday I was back at 90%, and Thursday I went to my 6:15 am Orangetheory class with no issues. One week out, my arms look like I belong in a battered women's shelter, but nothing hurts. Overall, recovery has been super smooth.

The Recipient

Updates on and contact with the recipient depend on the rules of his or her transplant center.  My recipient's center will provide 3 updates on his health throughout this first year, and then we are allowed to contact one another {if we both consent} one year after the date of donation.  I do know he received the transplant, and I am so hopeful it turns out to be a success and I get to hear from him one day.  I haven't been very prayerful this last decade and I'm not entirely sure who exactly is listening, but I think of and pray for this man every day. By receiving my cells, he is essentially receiving my entire immune system -- he will inherit my vaccinations, immunities {don't need to worry about that swine flu ever again!}, and even my allergies {watch out for bees!}.  He and I will be as genetically linked as siblings for the rest of our lives.  Science really is miraculous.

Ruminations on Anonymous Donation

I'm going to start with logistics and work my way down into the deep stuff.

1. There are a lot of needles involved. Kind of a "duh," but its something to keep in mind if needles make you squeamish. I've done a ton of platelet donation and acupuncture and I've had two babies via cesarean and needles don't phase me at all and it still felt like a lot of pokes.

2. I wish I'd taken more photos on the day of donation. It was one of those "I feel weird asking at the time; this isn't really about me" moments, but now I am really sad I don't have a photo of me with Dot and Elloy. And I wish I'd taken a video of the machine putting my blood through it's paces.

3. Be The Match generally works as a well-oiled machine but there is room for improvement. Specifically, I think it's absolutely nuts I wasn't given an itemized list of what was supposed to arrive in my first cooler of meds and then required to confirm the actual contents item by item.  The filgrastim drama could have been completely avoided this way.  I am just not sure why this isn't protocol considering what's at stake for the recipient and how expensive and hard to get a hold of the medication is.

4. Outside Research, Outside Research, OUTSIDE RESEARCH. Be The Match's website is very informative but it really only scratches the surface.  I know no one {including me!} wants to scare off potential donors, and I don't want to accuse anyone of downplaying certain things, but I think there could be more material given to donors about filgrastim, central lines, etc. No where in any of the materials I was given did it mention these crazy intense bone spasm pains {everything was all "mild flu-like aching"}, but when I mentioned it to my coordinator and the home health care nurses, they were all like "oh yes, that's normal - take an Advil." And if 1 in 5 women really do end up with a central line {or even end up seriously discussing a central line}, the fucking central line needs to be explained way better.  I should have taken more responsibility in doing my own research {I did some, but not a ton, and, as I mentioned, I was super defensive when E brought up legitimate concerns}.

5. This experience taught me so much about giving without reservation. The doctor who did my physical did not have my very favorite bedside manner.  She kept joking about donating anonymously, starting by saying she always assumed donors hoped they were donating to children. I told her I knew my recipient was a 59 year old man, and she responded "well, you just hope he's a nice grandfather and not some creep."  Then she asked me if I knew whether or not he was in jail.  {Please note: this doctor was NOT affiliated with BTM in any way and was actually not the doctor who was supposed to do my physical. I'm assuming the physician who normally performs the physicals has a much more thoughtful outlook on the process.}  Her callous comments really metaphorically smacked me on the back of the head -- and I stopped mentally assigning "positive" attributes to my recipient {"maybe he's similar to my dad -- with a spouse and kids and grandkids who love him!" "maybe we share a similar belief system!" "maybe he loves to travel!" "maybe he does important work!"} and started putting my proverbial money where my liberal-elite mouth is.  I do sincerely hope he is surrounded by a special people who love him and that he gets more time to do whatever it may be that he enjoys doing. But this man deserves more life to live simply because he is my fellow human -- not because of some litmus test of worthiness.  I keep describing this experience as humbling -- yes it feels good to put some good out there in the world {especially this particular world we're living in at the present}, but it also makes you aware of just how tenuous and interconnected our lives really are. If I teach my children anything about giving {or really about living life in general}, let it be: if a need arises and you are able, fill it without the expectation of gratitude, strings attached or reservations assigned.

Phew.  That feels like a good place to end.  Please feel free to leave any questions in the comment section or shoot me an email.  I would be a first-time donor again in a heartbeat. And I hope you'll consider registering to do the same!

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19 comments:

  1. Kate,

    Thank you from the bottom of my heart. My mom passed away last year from Stage 4 cancer and I never knew how much a disease could rock your world. Your selfless donation to a stranger means the world to me--to see someone get the chance to live after the awfulness of cancer/chemo/pain/hopelessness.

    You changed someone's life and want nothing in return--that's a beautiful thing. I have read your blog for years and thought I could read this story without weeping. I guess I was wrong. Thank you again, from the bottom of my heart.

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  2. Thanks for the detailed post, definitely something to consider. And so strange I had for some reason yesterday suddenly wondered where you were with this because I remember you posting about the large amount of vials one day a while back

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  3. Thanks for the detailed post, definitely something to consider. And so strange I had for some reason yesterday suddenly wondered where you were with this because I remember you posting about the large amount of vials one day a while back

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  4. Wow. Thank you for sharing this. Five years ago we lost my dad to the bitch that is AML, while they were trying to clear his system enough to do a transplant. When he was diagnosed my whole family registered with Be The Match and I've actually gotten potential donation letters before. This is so insightful to see the process from the donor viewpoint. Your recipient could have been my dad, our dear family friend, someone's mother. My dad is missing out on seeing all his grandchildren, all from this horrid disease. Thank you for advocating for donation.

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  5. This was incredibly inspirational, and I am truly in awe of you and the process you went through. I signed up for BTM maybe 8 years ago, and while I haven't received a call (my info is up to date!) having your experience as something I could refer back to is invaluable. Cheers to you!

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  6. So amazing. What a gift, thank you for sharing.

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  7. What a gift you were able to give this man. I really appreciate your honesty about the moments where you were like Oh My God What Am I Doing? when things weren't going exactly according to plan because I think that is such a part of being a human being.

    My husband, brother and I are all registered with BTM so reading about your experience was super-informative from that angle as well.

    Be well.

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  8. Loved reading your honest story. Hope everyone has a happy ending.

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  9. My cousin was diagnosed with non-Hodgkin's lymphoma four years ago and required a donor stem cell transplant...our family all registered with be the match during that time. It was a time in our lives that we were so grateful and humbled by a stranger willing to go through numerous painful procedures to change my cousin's life. You've made such a difference to a family going through one of the most difficult situations they have ever faced. My cousin is thriving now at 23 and currently in grad school studying public health. He has such a passion for public service and because of someone like you, he is going to have the opportunity to make a difference. Thank you Kate for sharing your story.

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  10. Thank you SO MUCH for sharing all these details, and such an amazingly personal but also educational post. This type of information is hard to come by, it seems, and there is a lot more to "be the match" than just a cheek swab if you are matched! My husband is registered - I am forwarding him your post to read. Thanks again!

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  11. What an amazing gift you gave to this man! I am so impressed that you made this choice despite the personal inconveniences and sacrifices. Also an incredible lesson to teach your children.

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  12. Thanks so much for sharing this story! Agree - amazing gift to give this man and his family...you are wonderful. I've been on the BTM registry for awhile now & always wondered if I will ever match and if I will be able to convince my husband that it is safe for me to do it (sounds like he and E are very much of the same mindset on this). Regardless, if I am chosen someday this post is the first place I will look for info!

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  13. What a gift you gave. I don't know if I'm just hormonal, but it really made me teary to read this, mainly because my own Dad is around that age (and we almost lost my mom to a similar disease APML when I was 12) and so it hits close to home. Bless you and your soul.

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  14. Thank you for sharing, this is one of the best posts I've ever read on any blog. I especially appreciated your insight about giving without reservations, it really gives me a push to evaluate my own giving and thoughts around it.
    Can you be matched with another recipient? Would you do it again?

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    1. Thank you for your kind words!

      I actually need to ask this question -- whether they put you back on the registry if you'd like. I would do it again as a first timer in a heart beat. Because of the unknown long-term effects of filgrastim, I am not sure what I'd do if I were matched and they requested PBSC again and I had to take the meds a second time. I think I'd be more open to hip aspiration. Definitely something to ponder!

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    2. Just jumping in here for a moment--though of course all registries/countries are different so I'm not speaking on behalf of BTM!--but in our case (UK), donors are 'linked' with their recipient for 2 years after donation and cannot be matched with another patient during that time. The patient's team may come back and ask for a subsequent donation (PBSC or bone marrow) or lymphocyte donation during those two years, but of course it is always up to the donor if they want to proceed if that comes up. After two years they are released back onto the register and could be matched with someone else, but there is a limit to the number of donations/recipients you will be asked to donate to. All match requests from the transplant centre are reviewed by the registries' medical team first to approve the donation request.

      Kate, also, just an fyi that I sent my work team the link to this post, so if you see a bunch of hits come up from the UK on your blog stats, that is why :) It's so interesting to see the donor perspective, and especially to see the similarities and differences in the way our registries work!

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    3. Cynthia -- Thank you for the UK insight! I think that follow-up protocol makes a lot of sense. Have you experience with donors who end up donating to multiple recipients? How often does that scenario arise? And do donors typically agree to donate again? I'm so interested in the "aftermath" at this point!

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  15. Kate - This is so wonderful and insightful. I know you didn't do this for you, but true giving really benefits the giver as well and this will experience will live in your heart forever (I always think of that Friends episodes where Phoebe searches for a truly selfless deed). I've been signed up with BTM for a few years and though you always hope there is no reason for someone to match with you, if I can be of service, it would be an honor to.

    I mostly came here to comment on giving without reservations. That is so close to my heart and but still something that is easy to struggle with on the daily. Thank you for stating it so blatantly. So often we choose charities and organizations that support the demographics that feel familiar to us and that needs to called out.

    I hope nothing but the best for this guy. What a ride!

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happy little comments!