Brianne: Hey Reddit, my name is Brianne Dollar. I grew up in Hinesville, Georgia and at the age of 17, I was diagnosed with Acute Myeloid Leukemia. I endured countless chemotherapy infusions, blood, and platelet transfusions, and spent over 120 days in the hospital. Seven months after I finished treatment, I relapsed. My prognosis without a bone marrow transplant was not good. Luckily, I had my matching donor in the Gift of Life marrow Registry, and he thankfully gave me my life-saving transplant on February 28th, 2019. It was a tough road, as I battled severe complications and spent another 100 or so days in the hospital. But I’m now cancer free!! I do struggle daily with a condition that can happen after a transplant called “chronic graft versus host disease”, but I’m not letting it slow me down. I’m now in college to become a biomedical engineer and I volunteer as a Campus Ambassador for the Gift of Life Marrow Registry. I’m helping to add new donors to the registry so that no one has to wait for this life-saving procedure because they can’t find a match.

Tony: My name is Tony (TJ) Connell. I grew up in Burlison, TN and graduated from the University of Memphis in 2018. I currently live in Nashville, TN and work in research for a pharmaceutical company. My journey with Gift of Life started in college where I signed up at a ZBT fraternity event at the University of Georgia – Athens. In February 2019, I received a call that I was matched to donate bone marrow to a young woman battling leukemia. I immediately said yes. My experience donating was exceptional, and a year later I got to meet that young woman, Bri. It was a special moment for the two of us and now I want to help educate others about bone marrow donation and how to help those battling blood diseases.

We were given the amazing opportunity to meet this February at a Nashville Predators Game. Since then, we have both become involved with Gift of Life and help to add new donors to the registry. We hope to educate others about the importance of becoming a donor and the incredible impact that you can have in someone’s life. We are excited to answer any questions you may have about us or bone marrow/stem cell donation.

Proof )

Link to our Story here and here

You can become a donor here if you live in the US.

Comments: 452 • Responses: 70  • Date: 

Madanax276 karma

Is donating marrow painfull ? How it's look like?

breemarie99371 karma

Tony: No, because the way I did it, which is through donating marrow, you go the anesthesia route and you don't feel anything.

tari101190128 karma

are there any noticeable side effects?

breemarie99398 karma

Tony: Yes, there were mild side effects such as fatigue because it can take up to a month to replenish the marrow that you donated. I went back to work the next week.

ladysdevil41 karma

Did they use real anesthesia or did they do that combo mess with demerol and something else? My biopsy hurt like hell, I didn't stay under, and despite the "amnesia" properties they touted, I didn't have the pleasure of forgetting it.

breemarie9943 karma

Tony: Real Anesthesia

ladysdevil17 karma

Good to know. Are there specific health issues or medications that might disqualify you to be a donor?

breemarie9957 karma

Yes. Here’s a list of disqualifying conditions.

ladysdevil20 karma

Thanks. I got disqualified pretty much as soon as I opened the list. I stopped after the first 10 seemd silly to continue with 5 disqualifications.Thank you for the info though.

KnifelikeVow4 karma

Same. Any allergen?

breemarie9941 karma

It’s only allergens that cause anaphylaxis. Seasonal allergies and small allergies are okay, but recipients will usually develop their donors allergies, so life threatening allergies are disqualifying.

katsandtea8 karma

This is wild, I had no idea anaphylaxis reactions ruled you out. I’ve been on the registry for eight years with an anaphylaxis reaction to penicillins :( bummer. It’s also weird because it doesn’t rule you out at all when it comes to organ donation

breemarie9925 karma

Brianne: That’s because when you donate an organ, you are just replacing that organ. When you donate marrow, you are replacing their immune system with yours. This means that if your immune system produces antibodies to a certain substance like penicillin, then their new immune system will too.

ladysdevil2 karma

Which explain why autoimmune conditions would disqualify you. Whole reason I know what the biopsy feels like is they were worried I had leukemia. Took a couple of years to get the answers, but instead I have RA and AS.

So wait, is that immune system replacement permenant?

breemarie994 karma

Yes. The bone marrow is what makes the cells that make up your immune system. Hopefully, the donor’s cells stay forever.

tickingclocks25182 karma

Hi everyone! I wanted to say thank you to Tony and Brianne for sharing their stories. My mom was diagnosed with AML and her life was saved by a generous stranger who donated their bone marrow. She is going on 3+ years without having any trace of cancer in her system and it's all because someone registered to become a donor. We would love to be able to meet her donor to thank them but we completely understand and respect their decision to remain anonymous.

Since I know some donors choose to remain anonymous, what made you decide to meet Brianne?

Thanks again to Tony and Brianne for bringing awareness to this issue--it can save someone's life!

breemarie99100 karma

So happy to hear about your mom!

I thought it would be awesome to meet the person I helped and not leave her wondering who did it. Turns out we clicked so well’

bro-en_-eyboard110 karma

How long were you registered before you got the opportunity to donate?

I've been on the registry for 10ish years... still waiting. I hope I get to save someone.

breemarie99118 karma

Tony: I was on the Registry for 4 years before I was called to donate.

ZugginAround59 karma

I just got an email to reaffirm commitment and it made me realize I've been on the list for over 6 years. How out of the blue was the match?

breemarie9969 karma

It was totally out of the blue. I had actually forgotten I had signed up 4 years prior haha.

NOTRobertPera37 karma

Did you only receive a phone call or an email too? I'm on the registry, but I get so many spam calls I often ignore anything out of state.

breemarie9947 karma

Tony: Phone call and they left a voicemail Brianne: I know some people who have definitely received an email as well.

live_in_person93 karma

I was diagnosed with AML in April. I just finished consolidation and am checking into the hospital for my transplant on 9/9. Thank God, my brother is a 10/10 match. This has been a hard road, and I know the hardest is probably yet to come. Can you describe how graft vs host has effected you?

breemarie9956 karma

Brianne: Wishing you the best of luck on your transplant! I’m so glad your brother was a match! I had some Acute GVHD not too long after transplant. I had to be re-hospitalized with a lot of vomiting and dehydration. But steroids quickly fixed that. The chronic GVHD has been a different story. It changes every day. The main problem is my mouth, so I can’t eat everything I want. I also have a lower appetite because of the GUT part and sometimes, because it affects my muscles as well, I feel very weak a lot and there can be a good amount of joint pain. But it really changes every day. I hope you won’t have to deal with much GVHD. For me, it’s an obstacle but it’s not horrible.

live_in_person14 karma

Thank you for sharing your experience. I know it’s different for everyone, and I’m honestly scared of what will happen but I’m just taking it day by day.

penguin03216 karma

Hello, I had ALL in 2015 and received a transplant from my sister in 2016. I got acute gvhd and then chronic in various forms (skin tightening / fascia tightening, red itchy skin, some gut which manifested as appetite loss / weight loss, etc..) Ended up on steroids too long and had 2 hip replacements and a knee replacement and still not very mobile and continuing to battle the tight skin.

Please go over with your doctors any ways you can to mitigate gvhd and steroid use. I got horrible avascular necrosis (loss of blood to joints from steroid which kills your joints), while returning to school and now I am pretty much permanently disabled and it's been tough to do anything besides be at home. Gvhd is manageable, however damage from long term steroid use is a lot worse in my experience and I recommend you go over your doctor's plan of steroid use with them thoroughly or get a specialist in endocrinolgy involved so they do it right and minimize your chance of avascular necrosis.

I was so close to being like OP, doing electrical engineering, returning to school, but I just got destroyed by the steroid use unfortunately but this of course is avoidable!

breemarie997 karma

We have been weaning off steroids! I’m off prednisone, and we have tried to get me off the current steroid I’m on, but unfortunately I’m not making enough of my own yet. I’m sorry about your experience.

Tecumseh1363 karma

Hi Brianne- I’m one of the heme/onc nurses where you had your transplant. I don’t remember if I ever took care of you, but I definitely remember your name. I’m so glad that you are cancer-free and advocating for others! I only work night shift, so I don’t get to see many discharges and bell rings, so it makes me so happy to come across a post like this and know that the work we are doing is making a difference. Whether I helped with your care or not, I am so proud of you!

Reddit is making me ask a question, or it will delete my comment, so... Who was your primary nurse? Any happy memories of your stay with us?

breemarie9929 karma

Hey, first off thank you for being a nurse! Y’all are amazing, especially at that hospital. I probably didn’t have you since I spent most of my time on the BMT side and I was originally treated elsewhere. Thank you. And I had a few “primary” nurses. Mama Duck May have been my favorite. Sherri was from my first hospital too so she was super special to me. And a few others whose names I can’t seem to think of right now (I’m a lot better with faces.) I have a ton of happy memories there. Getting to go to the garden, playing cards with a few nurses, getting to see Izzy, my friend coming on transplant day, etc. Those are just a few.

Responsible-Watch-5063 karma

If Brianne takes a DNA test will it show both of your DNA?

breemarie99131 karma

Brianne: If they do a blood test, it would show 100% of Tony's DNA. If it's a tissue test it will either show my DNA or be inconclusive. Tissue DNA doesn't typically change, but blood can mix with tissue and saliva so you might see both of our DNA.

CallMeHelicase117 karma

That's so cool! So if you committed a crime you could frame Tony!

If I wasn't already registered I would sign up right now!

breemarie99143 karma

Brianne: Yes I could MWAHAHAH

Crispy_friesz52 karma

Can you donate bone marrow again if you've donated it once? If yes, after how long can you donate it again? I had AML too last year and i know how hard it can be. Hope you're doing good

breemarie9960 karma

Brianne: You can definitely donate Marrow/stem cells again. It takes a month for the marrow to replenish itself usually, so you can usually donate a few months later.

JuanTheGrappler36 karma

Blood types can change with bone marrow transplants. Did yours change by any chance? Or are you both the same blood type? HLA Antigens can be very very very difficult to match, would you by chance know if you're a 5/6 or 6/6 match? Lastly to prevent GVHD depending on the patient there are numerous of drugs that are sometimes given, how many if any immunosuppresant drugs have they given you?

breemarie9949 karma

Brianne: my blood type didn’t change since Tony and I had the same blood type. And my hospital categorizes it out of 10 and Tony was a 10/10 match! And I was on an immunosuppressant called Cyclosporine, and that’s what I took for a few months. I came off of it and then started to show signs of cGVHD. I now take sirolimus, which is a different immunosuppressant. I think those are the only two I’ve been on.

VegHeaded3 karma

I used dexamethazone for oral GVHD. It helped a lot to stop blisters. That and no more spicy food.

breemarie997 karma

I use dexamethazone as well. And definitely no spicy food. Never cared for it anyways, so not much of a loss there lol

NoseParty5529 karma

I was contacted by DKMS after years of being registered as a donor. I was told I was a match to somebody and being I was still wanting to donate I went though all the paperwork and medical questions and had bloodwork done. I was waiting on a date when I was contacted and told that I was no longer needed. Do you have an idea as to why I would be that far along just to be told I was no longer needed as a donor? It wasn’t my bloodwork and I was told I’d be kept on the donor registry. I’ve always wondered what it was though

breemarie9947 karma

Tony: Sometimes the recipient's care plan changes and they either decide to not go through with a transplant or delay it, etc.

alicatmonster27 karma

His long did the donation process take from getting notified to donation? Btw thank you for doing this, I always encourage people to sign up for the registry but there’s a stigma about people drilling into your bones while you’re awake 😑

breemarie9929 karma

Tony: Just over a month. It was super easy and I was in constant contact with Gift of Life. They scheduled and did everything for me.

alicatmonster15 karma

Is gift of life a different organization than be the match?

breemarie9922 karma

Yes, it is, but they both go on the same international/national registry

LifeHighway101024 karma

Why did you decide to join Gift of Life’s registry in the first place?

breemarie9960 karma

Tony:I decided to join the registry because I had a family member who received an organ transplant and I knew the importance of being a donor

JungFuPDX18 karma

I just registered to Be the Match and sent in my kit last week. Are there other places you suggest?

breemarie9927 karma

If you’ve sent in a kit to one organization, you don’t have to send it to any other. They all go on the same national registry, and submitting a second one could give the appearance of there being more than one match when there isn’t.

poopa_scoopa16 karma

How did you find out you had leukemia? What were the warning signs? Is anyone susceptible to get it? Thank you

breemarie9938 karma

Brianne: I found out that I had Leukemia after being very ill for awhile. I had been feeling very tired and weak to the point of complete physical exhaustion. It started out by having strep, and I kept getting sick and feeling bad for awhile. I also had patichea and some bad bruising. We went to an urgent care out of town after bad experiences with the one in my town, and he ran a blood test. My dad got the call the next day to get me to the ER as urgently as possible. My hemocrit was a 3.0 and all of my lab values were critical. And yes, everyone is susceptible to it. I’ve known patients as young as a few months to great grandparents. Some completely healthy before, some not.

TonyNickels14 karma

What was the time frame from strep to abnormal CBC? My 6yo daughter got strep in March and has had a low grade fever every since. I'm told her blood work was OK, but the last time we checked her WBC was at the very bottom of normal, neutrophils were slightly below normal, and ferritin was slightly low. 6 months of low grade fever and no answers has me super scared.

breemarie9918 karma

It was a few months. With Acute Leukemias, typically it only takes 1-3 months to progress to life threatening (which was were I was at diagnosis). I hope you’re able to figure out what’s going on. Thinking of your daughter.

TrainCloud14 karma

How can I help my friend with aplastic anemia? She’s been given a time frame of 8 years and there’s a slim chance a donor could help but I want to know everything I can do to help as her long distance boyfriend. Is there anything I can do to support or even donate? I love her so much and I’d do anything for her

breemarie9912 karma

Has she not been able to find a donor? I would definitely try to spread the word about the registry, encourage others, especially those with a similar heritage, to join the registry. But more importantly than anything, be there for her. Message and ft her, make sure that she’s okay. Send her things to keep her occupied and her spirits up. Illness can be extremely isolating. Being there for someone is incredibly important. Don’t just ask what she may want-it’s hard to know or ask for it. Find out the things she needs and help her with that.

NotBaldwin14 karma

Hi Bri!

What Graft vs host do you have?

I'm 29, I'm just over a year post transplant for Philadelphia postiive B-Cell Acute Lymphoblastic Leukaemia. I was diagnosed in Feb 2019, and had my transplant in July 2019. Prognosis for my flavour of ALL without a transplant is extremely poor, so they transplanted me as soon as my disease levels were low enough. I had a 10/10 match similar to you! I had some gut GVHD immediately post transplant, however budesonide (steroids) cleared that up. I had sporadic skin GVHD until about March, and that seems to have cleared up on it's own.

My hair is now all back, I'm quite fit again, and on Wednesday I'm going to get most of my childhood immunizations which is cool!

Sounds like you had quite a rough time with your transplant all in all. I had a fair bit of mucositis of the anus, which was as fun as it sounds, but aside from that I was relatively medically boring.

I hope your GVHD isn't impacting you too much, though having it is 'good' as it should mean you've got a nice strong graft-vs-leukaemia effect.

breemarie9917 karma

Brianne: I have chronic GVHD of the mouth, gut, and muscles. It can be a challenge some days, but I’m doing well. I’m glad to hear you are doing good!

ddebritto14 karma

Congratulation Brianne! Tony your an angel! A friend received a bone marrow transplant she had AML too. Her brother was the donor. She said that she craved food that are her brothers favorite foods. She had arthritis after the transplant it was gone and I think her hair became a little wavy.

Q Bri, do you have any weird food cravings & have you noticed any physical changes?

breemarie9916 karma

Brianne: Not really any weird food cravings, but my hair is extremely curly now and a lot darker than it used to be.

Icemoyeye13 karma

What do they look for in your swab to determine if you’re a match for someone? Like what genetics do I have?

breemarie9931 karma

Brianne: so yes, it does have to do with genetics! They look specifically for your HLA proteins, which are genetically influenced. This is why diversifying the registry is so important. Only 25% of black or mixed donors have a match on the registry, and many other minority groups also have a lower chance of finding a donor.

thirdpager10 karma

How long were you on the registry before you got a match?

breemarie9915 karma

Brianne: Tony was already in the registry when my doctors checked, so I found my match pretty quickly. He was on it for four years before he was called.

eRmoRPTIceaM9 karma

I think I signed up to be a donor in college. They took a sample I remember (a mouth swab maybe?) but I lost the paper telling me how to inform them of change of contact info. I'm not even sure if it was the same organization you went through. Are there other organizations? Is there a way to update my contact info? I have had two phone number, 2 address changes, and a last name change since then.... Or should I just sign up again?

breemarie9914 karma

Brianne: You can check if you’re on the Gift of Life registry here but there are other organizations, the most common being Be The Match. I would check if you’re on there as well, they probably have a similar system to check. I would try not to sign up again, as it would give them the appearance of there being more than one donor available.

Adicted8 karma

Is such think possible in Eu? I would be happy to donate.

breemarie998 karma

Yes![this ](https://www.leukemia-net.org/content/treat_research/sct/links/index_eng.html) was the best I could find as far as a list of donor programs in the EU, but looking up where you live along with ‘bone marrow registry’ should help you find a registry!

MimeyWimey7 karma

Hey Brianne! I’m actually taken aback by how similar our stories are here: I was diagnosed with Hodgkin’s Lymphoma last year (currently 20M) and just went through my bone marrow transplant last month. Luckily my younger brother was able to donate his, but the fact that you got such a close match from a donor and are doing well is really uplifting!

I was wondering, though:

  • I just had my first blood chimaerism test done last week, and I’m waiting for the results. I don’t know how it was for you but I was scheduled to get them on Days 28 (last week) and 50: how did the ratio of your OG cells/Tony’s cells look after the first one? Was it a case of immediately having a totally new immune system?

  • I saw you mention cyclosporine in another comment, which I’m also on: did you feel particularly sick from the post-transplant medications?

  • About your GvHD, what were the main symptoms you first experienced and how soon after coming off the immunosuppressants did they start?

breemarie998 karma

I hope you’re doing well! I know the first one I had done I was around 90% in my marrow and 85% in my blood. So not completely immediately, but pretty close. Some of the medications made me pretty tired and nauseous, but not extremely. And my chronic GVHD started with mouth sores and weight loss. I came off the immunosuppressants mid September and started showing symptoms around the end of October.

blinknow7 karma

As a donor, are you given Neulasta? Or something else. Do you go for multiple sessions for extraction? Assuming blood, not drilling

breemarie9913 karma

Tony: So, I did donate bone marrow so I didn't have to get Neulasta or go to multiple sessions. But if I would have donated stem cells they would have given me Neulasta or something similar.

blinknow5 karma

So they drilled to get bone marrow?

breemarie9917 karma

Tony: Yes, they did an inpatient procedure where they extracted the marrow in two small spots from the pelvis. It was little pain and there are no scars.

blinknow3 karma

I know they extract it that way for biopsies, didn't know it's done that way for donations. I thought all they need is the stem cells anyway. I may be wrong, obviously :)

breemarie9919 karma

Brianne: 80% of transplants are stem cell transplants done through the blood. Only 20% of donors are asked to donate bone marrow, usually for younger patients.

Patricx57 karma

This is very uplifting to read! I was a match to somebody a few years ago and donated, but unfortunately they passed away shortly afterwards. I want supposed to know who they were, but. By coincidence it turned out it was the aunt of somebody that I knew. I have always wondered - how do they implant the bone marrow into the recipient?

breemarie995 karma

It’s done like a regular blood transfusion. Mine was done over about 6-7 hours but it did have be slowed at a point since I was having a bad allergic reaction (which was common for me with blood products)

Ruby_Tuesday806 karma

I signed up to be a donor a few years ago, but I put on a lot of weight. Can they really not physically harvest the marrow if you're fat? Or is there some other reason?

breemarie9911 karma

Brianne: I’m not entirely sure, I do know that they say on the website that it can pose a risk to your safety. So there may be some risks associated.

elly6276 karma

I just mailed my swab kit back in to see if I am a match!! How long was it till you found out you guys were a match?

breemarie996 karma

Brianne: For me, I found out that I had a match when my doctor searched the registry. Tony had been on the registry for about 4 years.

pw3x6 karma

What was the recovery Process Like?

breemarie9917 karma

Tony: I was fatigued for a little because it can take up to a month for the bone marrow to replenish and I went back to work a week later.

Brianne: I developed a severe complication from transplant known as VOD, where the veins from your liver get occluded. This caused my body to hold onto fluids. My lungs filled with fluid, I gained a ton of weight over a few days, and my kidneys started shutting down. I was in the ICU for a week, and I don’t remember any of it. This made my recovery more difficult. I was in the hospital for about 50 days post transplant. After that, I stayed near the hospital until day 120. There were a lot of side effects to get through, but I made it out okay thankfully.

MaddieMorrisVA6 karma

Hi! Thank you for doing this! I have many questions!

My mom has CLL and will eventually need a transplant. We’re in sort of a holding pattern right now while they keep an eye on her blood work. We’d ideally put it off until the pandemic dies down, but that’s probably gonna be out of our hands.

How long did it take to find Tony after they started looking for a match for you? (My brother and I are both in the registry, but I figure we would have been notified already if we were even close to a match. Maybe.)

Is there any indication that your age had very much to do with your transplant recovery/subsequent dealing with GVHD?

And are you now on disability?

breemarie996 karma

I hope your mom is doing well and that they are able to hold off until after the pandemic! They found Tony pretty immediately as he was already in the registry. He had been in the registry for about 4 years. They consider age to be a really large factor when it comes to recovery after transplant, being young definitely does help. It has a lot to do with activeness as well. The number one thing you can do to help speed your recovery is try to be as active as possible afterwards. Not sure if it's impacted GVHD at all. And no, I'm still able to work in most settings that don't require physical labor with minimal accommodations, and I'm a full time student.

infinitedigits4 karma

Hi! I am on the Be The Match registry. Do these organizations share info? Should I register?

breemarie999 karma

You don’t need to re-register! Both organizations go into the National Registry, and re-registering will give the appearance of there being more than one donor

nescius4 karma

My father had AML and received a bone marrow transplant from an unrelated donor which gave him nearly eight years for which we are very grateful. So a big thank you to Tony and everyone else registered and willing to donate.

My mother was diagnosed with AML last year and received a bone marrow transplant from her brother who was a match, unfortunately she has recently relapsed and will probably need another transplant.

Brianne, I wish you all the best for your recovery, is there anything that you think would have helped you during your treatment to make it easier or at least more bearable? We try to make sure there is always a family member at the hospital, and we record all interactions with doctors etc so that mum doesn't have to remember everything. We also bring in as much home cooking as possible because hospital food here is diabolical!

breemarie992 karma

Definitely being able to talk to family/friends but also just having things to do to keep me busy. I really liked card games, board games, etc. And my favorite TV Shows to binge. Wishing the best for your mom!!

izzie1114 karma

How r are is it to find a bone marrow match?

breemarie994 karma

Brianne: For a patient, it really depends on your ethnicity. For a Caucasian non-Hispanic patient your chances are around 98%, for a black or mixed race individual your chances may be around 25%, so that’s why it’s important to diversify the registry. For a donor, you have a 1 in 200 chance to be called as a possible match and 1 in 5 of those matches will go on to donate

wtfranticmummy4 karma

How exactly is bone marrow extracted from the body? How is it used to make Bri better? Thank you for the AMA!

breemarie997 karma

Tony: Bone marrow is extracted during an outpatient procedure. I was given anesthesia and felt no pain during the procedure. They remove it from the pelvis. Brianne: I was given extremely strong doses of chemotherapy to wipe out my existing bone marrow. I then received Tony's cells via a transfusion. This allowed my marrow to be replaced by his healthy marrow. Since my marrow would just keep producing the cancerous cells, I needed his marrow to produce healthy blood and immune cells.

Pheuri3 karma

I've been on the Donor list for 26 years, ever so often I get called and asked to come in, once I mention I'm gay they 180, how does it make you feel knowing that I've matched maybe a dozen times and was not allowed to help?

breemarie993 karma

Being Gay does not bar you from donating bone marrow/stem cells

DragonSlayer2140003 karma

Is it possible for DNA in a crime scene to match back to the donor? I was watching some medical and some crime show and saw this and wanted to know if it’s true.

breemarie992 karma

Yes, if it’s blood sample, blood DNA completely changes to that of the donors.

FlygURL_GA3 karma

Do hospitals use only 1 of the two bone marrow registries or many? (Gift of Life or Be The March registries)?

breemarie996 karma

So all the registries’ information is on the national registry, and that is what doctors/hospitals check.

AsfAtl2 karma

Hi! I believe bone marrow can be replaced but I’m not sure, what exactly is it? Kay be a stupid question but what it it and what’s it used for to treat acute myeloid leukemia

breemarie996 karma

Brianne: So bone marrow is the soft, sponge-like part inside of your bones that makes your blood and immune cells. It's used to treat AML and other blood cancers/disorders by destroying the recipient's existing bone marrow with chemotherapy and sometimes radiation and replacing it with that of a healthy donor. For the donor, their body naturally makes new bone marrow.

patrokles2 karma

I registered back in ‘97 with the Canadian Red Cross. Later, sometime in the year after my parents died six months apart from different cancers I was contacted and told I was an excellent match (I forget what terminology they used but I think it was “5/5”). I was beyond elated and 100% willing but needed to answer a few questions before I moved to the next stage.

Even though I told them I’d be willing to be celibate for whatever length of time they deemed responsible and that I had never had unprotected sex, I was disqualified because I’m gay.

My question for Brianne — would you have been willing to take the risk?

My question for Tony — it seems like this has been a life changing experience for you ... can you describe what it feels like, physically, to have saved a life?

breemarie993 karma

Tony: I feel grateful. To have been able to do that for someone and to have become friends with that individual. I think most people would say they want to make a difference in the world. Being a donor or being on the registry makes that difference and it’s so easy.

breemarie992 karma

Brianne: I honestly don’t see it as much of a “risk” as anyone from another sexuality. I’m thankful that, atleast in the US, it’s no longer a disqualifying factor to donate bone marrow/stem cells.

OldGuyzRewl2 karma

Presumably this occurred after you were diagnosed and successfully treated.

Were there any misgivings about the slight potential of transferring your cancer to a recipient?

breemarie993 karma

Brianne: A little confused about this question. Tony didn’t have any cancer, he is/was completely healthy. He donated to me because I was battling cancer and needed the transplant. Those with a history of cancer that needed chemotherapy are ineligible to donate.

OldGuyzRewl1 karma

Thank you. As a myeloma survivor, I am interested. If I understand correctly, Tony donated to you after he was successfully treated, right?

breemarie993 karma

He never had any type of cancer or illness.

Caustic_Painkiller2 karma

Hi! First of all I want to thank you for doing this and I wish you the best. My question is: does a bone marrow transplant have any long lasting sequels or side effects? if so, are they temporary or life long? is there anything we can do to deal with them?

breemarie994 karma

Brianne: so yes, the transplant can definitely cause long term effects. There’s a lot, both temporary and life long, and depends on the patients treatment, drugs used, and complications. Chronic GVHD (which is somewhat common and I have) can last a few years to the rest of your life. I’m able to manage it with immunosuppressant medication, steroids, and special mouthwashes. There are other drugs that a doctor might try.

threecrazycats2 karma

Hi both! Thanks for doing things. Glad you're doing better Brianne! My mum is a heamatologist so I grew up hearing the terms bone marrow transplant and GVHD at the dinner table. She's always said she never ceased to be amazed by the progress in this particular field. Brianne, a personal question if I may, do you know your prospects in terms of fertility in future? I know this was an area that was problematic in the past and wonder if things have changed.

Wish you both all the best

breemarie993 karma

Brianne: So, I am in menopause induced by all the drugs, etc.

LunarAssultVehicle2 karma

Best of luck to both of you and Tony, thanks for your selfless act. I lost my brother to AML after a donation that didn't take and hearing these stories helps with that loss.

And since I have to ask a question.

Brianne, did you develop any new taste/food cravings after the transplant?

breemarie992 karma

Brianne: No, I didn’t, but I know others that have. I’m so sorry to hear about your brother.

pdmock2 karma

Know you are probably done answering questions, but wanted to say I am happy for you! Also, I am from Richmond Hill. Where do you plan to go from here?

breemarie993 karma

Thanks! A lot of my friends are from RH, you’re really close! And right now I’m at Georgia Southern, I’m hoping to transfer to Tech soon to get my degree in biomedical engineering. I want to create medical technology that could help cancer patients.

beastlet2 karma

Nice work! 20 year survivor of childhood AML/MDS here. My donor was the only match in the registry at the time— there were just 2.5 million people registered worldwide back then, compared to 35 million today.

Brianne, did you have genetic testing done before your transplant? I did recently (they used a skin biopsy!) and was surprised to learn that I had a genetic mutation (GATA2 deficiency) which caused the AML and bone marrow failure.

breemarie993 karma

I haven’t had any genetic testing done since my specific mutation doesn’t suggest a genetic component. It may be something I look to do in the future.

LightSweetCrude2 karma

Is there more than one donor registry in the US? I signed up with Be The Match, but if there are other lists I want to sign up there too!

breemarie993 karma

If you have signed up with one registry, then you don’t need to sign up with another, they all go into the same national database.

wallflower06162 karma

Is there any cost at the donors expense for the procedure, blood work and any follow up care?

breemarie993 karma

All expenses are covered by the recipient’s insurance or the organization! Donors aren’t expected to pay anything!

acornstu1 karma

Scale 1-10.

How much does it suck giving, receiving, and usefulness does it have.

1 being the worst and 10 being the best for all three.

I REALLY hate needles but if I'm donating blood i figure i may as well throw some plasma and bones in for someone that will put them to good use.

Any advice?

breemarie995 karma

Tony: giving: 9. I’m not the biggest fan of needles either but it was so minimal. Just regular bloodwork while I was awake. The rest was done under anesthesia. Minimal discomfort and I have no scars. Brianne: Receiving 2/10. I mean, I’m incredibly thankful for it, but it was an incredibly difficult process. The actual transplant was just given like another blood transfusion, but the recovery was difficult and I faced some severe complications. Usefulness: 10000/10 I wouldn’t be alive without it. I’m incredibly thankful for Tony. I’m lucky to have been able to get my transplant.

Advice: Talk to your coordinator if you’re chosen to be a donor. They can help ease your fears. And you’re allowed to bring someone with you, so bring someone that can help you get through the process.

majarena1 karma

Congratulations both and thank you for sharing your story! I’ve been having issues with my neutrophils count for nearly 15 years and I finally may be getting a diagnosis and potentially qualifying for BMT. I’m finding out in just over a week and getting pretty anxious about it. How long was your conditioning process and how did you tolerate it? Really sorry to hear about the complications you’ve had after the transplant, but in general, how long did it take you to regain strength and start getting back to “normal”?

breemarie992 karma

Brianne: So once I was back in remission, and we did a lot of tests to see that I was healthy enough to make it through transplant, I was admitted a week before my transplant. I had 4 days of very intense chemotherapy, and 3 days of resting before my transplant. I tolerated this pretty well, it did contribute to my complications, but if it hadn’t been for that, I had some bad mucousitis, weakness, etc. but nothing I hadn’t experienced with other chemotherapy treatments in the past. Overall, I would say it took me about 9-10 months to be at a more normal point. It wasn’t until September I was actually allowed to start going back out in public, eating what I wanted, etc. I’m not going to be where I was before treatment anytime soon, but I did get to a pretty good place around then.

happy04441 karma

What are the odds of a donor matching with someone?

breemarie991 karma

Brianne: There are some factors that make it vary some (like male v. female, tissue type/ethnicity, etc.) but overall 1 in 200 donors will be called as a potential match and ultimately 1 in 5 of those called as a match will ultimately donate.

GimmickNG1 karma

How do you donate marrow? I always thought marrow transplants were scary as a kid as I thought it meant you were donating your bones

breemarie991 karma

Tony: They did an inpatient procedure where they extracted the marrow in two small spots from the pelvis. It was little pain and there are no scars. Many people (80% of those asked to donate) donate peripheral blood stem cells. This is done like a platelet donation, where blood is taken from one arm, cycled through a machine to isolate the stem cells, and given back through the other arm.

VestuvianHalo561 karma

Has anything other than the marrow been transferred? Like suddenly a new taste for something? Idk if that’s how that works and it’s probably not

breemarie993 karma

Brianne: Not really for me but I know it has for others!