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Hello I’m Vincent Pan, I donated my bone marrow to a 13 year old girl and I recently met her on May 1st 2013, Ask Me Anything!
I came up as a donor match for a marrow transplant a year ago. At the time the only information I received was the recipient's age, gender, and diagnosis. A year later I was very lucky to meet Vicky and her family, and more importantly to learn that she was doing well. Below are some links.
Vicky: https://sphotos-a.xx.fbcdn.net/hphotos-ash3/524791_512742962106982_565037090_n.jpg
Learn more about Vicky and her journey: http://vimeo.com/70431026
ABC 7’s coverage of our meet at University of California San Francisco Hospital: http://abclocal.go.com/kgo/story?section=news/health&id=9087230
EDIT: Thanks everyone who joined with questions and comments. I hope this was useful. I'm logging off now but you can keep posting questions and with the help of others, they will be responded to as soon as possible.
In the meantime you can visit www.aadp.org, email [email protected], or call 1-800-59-DONOR to learn more!
Vincent_Pan75 karma
Hello! Thanks for dropping by. It was a real treat to meet so many of Vicky's family members at the event at UCSF! Please tell everyone I say hello!
zakanddaizy24 karma
Hi Vincent, My son is a recipient and survivor. He is 15 years post transplant and turned 21 this year. Do you feel obligated or entitled to be a part of the recipients life? Some recipients have long-term effects and the donor may be asked for more help. Is this a worry for you?
Vincent_Pan23 karma
Hi. I'm glad to hear that your son is a survivor. I was very glad to meet Vicky and her family. The way the donor program works is that both the donor and recipient can remain forever anonymous if they wish. But if both parties want to meet, after a year, contact information is exchanged. It turned out that Vicky lived in the Bay Area not far from where I live so we managed to get together and raise more awareness for other patients. No, I'm not worried about being asked for more help. Though if I did have that concern, I suppose I could have remained anonymous. Thanks for the question!
zakanddaizy10 karma
Thank you Vincent. Your selfless act has added memories to Vicky's family album. Unless you've been in this position, it is hard to imagine the value of such a gift. BTW - We also had to wait a year and my son met his donor. We've only touched base with each other briefly over the years. One is able to become part of the donor registry here in Canada through the OneMatch program. It can even be done through the mail! It's a matter of registering and qualifying. You then receive a package and take swabs from inside the cheek and gums. There are many Get Swabbed events. Universities and Colleges are especially important venues since the population there is usually culturally diverse and younger.
Also, I'm not sure that the marrow is 'tissue'. When my son received his marrow, it was a gel-looking type of blood product. Very thick. I would characterize it as 'cells'.
Your work and gift is so very valuable. And of course, your selflessness is a great example to so many who want to do something good... and it doesn't cost anything but time. A humble thank you.
pushisti21 karma
Was it expensive for you to donate, or did somebody help with your surgery/medical bills?
Vincent_Pan36 karma
This is a really important question. I probably should have brought it up. There was zero cost for me to donate because the program that organizes the match pays for all the medical bills of the donor. In fact, they also paid for related transportation, etc... Which reminds me that another way to support is to financially contribute to some of these organizations. The one that recruited me was www.aadp.org.
olivezilla20 karma
Were you under anesthesia? From what I've heard about bone marrow transplants, it hurts like all hell. How long was recovery?
Also, good for you!
Vincent_Pan36 karma
From what I understand there are two ways that donors can donate. One does not require anesthesia and the other one does. The one that does not is very similar to donating blood for a few days in a row. The one that does is a surgical procedure and that's the one that I did. Basically I arrived at the hospital early in the morning, received anesthesia, and then woke up a few hours later. When I was in high school I had oral surgery once that required general anesthesia and this was just like that -- meaning you don't feel a thing except for the initial needle prick. When I woke up I was groggy for a while but they had basic pain medicine if I wanted it. So in my case, I can honestly say it did not hurt very much at all. I was maybe a little sore for 3 days? But no more than if I had gone to the gym and worked out extra hard. Oh, when I first woke up, my throat did hurt (from the breathing tube, I think) but they gave me some ice cream and lozenges and then that was fine!
Cancerwarrior17 karma
As a bone marrow transplant survivor (Dec. 2012), I just wanted to say Thank you for such a selfless act!
Vincent_Pan10 karma
I am very happy to hear that you are a survivor! Thank you for inspiring all of us with your life!
oh_fuck_you12 karma
Hi Vincent, I'm part of team Save Ryan, but as you know, what we do benefits everyone. I'd just like to say thank you for taking the steps to help save a life. A lot of people don't understand that taking a minute swab test can potentially save a family's loved one. Kudos to you!
Vincent_Pan17 karma
Thank you for doing what you are doing for team Save Ryan. One thing that I've learned from this process is how the donor (me) gets a lot of the praise and attention but how little of the work we (me) actually have to do. Yes, it's true it is our marrow that gets used, but I have actually found it very inspiring to see so many volunteers out trying to find matches, the various organizations who help support the volunteers, the researchers and scientists who are constantly looking for new ways to help patients, and the doctors, nurses, and hospital staff who are involved in the actual procedure and recovery. So on the one hand I know that having a personal story like mine as a donor can help explain things to people, but I also definitely encourage everyone to keep on doing whatever they can to help people in need even after or without registering as a potential donor. Helping people always takes a collective and individual effort, so again, thank you and best wishes to Ryan and your entire team. Let me know if there's anything I can do to help!
normalgrm9 karma
I understand you were a wide receiver in high school (Vinny Pan the Touchdown Man) - do you think being an athlete help to make you a better donor?
Vincent_Pan8 karma
HAHA! That was a long time ago and I was not much of an athlete. I think being a donor match is all genetic, meaning I had nothing to do with it.
Vincent_Pan3 karma
I think the potential side effects for the two different ways of donating are different. With one, which is often described like giving blood for a few days, the side effects are often described as flu-like symptoms. I have met some donors who have experienced this. With the other, which is the surgery that I had, there is typically soreness and fatigue after the procedure. I think the chances vary for every donor but there aren't any long-term side effects.
Nyolia1 karma
I have heard of some other possible worse sude effects which I can't link because I'm on my mobile besides typical soreness, and the only thing I can remember was the rarest was death. Is there any merit to this?
Vincent_Pan4 karma
I remember the doctor telling me that with every surgery there is always going to be some risk, but that no one ever died from donating bone marrow. But yes, it is surgery with general anesthesia and for every person I think it probably has to vary depending on their health, etc.
murricane5 karma
Don't have a question, just want to say that you did a great thing and that I hope to be lucky enough to one day be a bone marrow match to somebody who needs it. Lost one of my best friends to graft-versus-host after his second bone marrow transplant and if I could prevent someone from going through what his family and everybody that knew him went through I would do it in a heartbeat.
Once again, thank you. Vicky is a very lucky girl.
Vincent_Pan3 karma
Thank you for your comment and thank you for being in the bone marrow donor registry. I commend you for wanting to help alleviate the suffering of others. I believe others would help, too, if given the right information and opportunity to do so.
Spokes12155 karma
No question here, but a friend of mine passed away from cancer a couple years ago. He received a bone marrow transplant from a complete stranger in Germany and it saved his life and let him live a couple months more. Just here to give respect and thanks to you for everything you have done for that girl and her family.
Vincent_Pan6 karma
Thanks for your comment and for sharing. Sometimes there is an entire lifetime in short but precious moments.
tasty_unicorn_bacon4 karma
Hey! I saw them filming you and Vicky in front of the School of Nursing. A few of us NPs were moved to tears at our lunchtime. Thank you for what you've done. I cried like a baby when I heard her speak.
Vincent_Pan3 karma
Thanks for your comment. And thank you for being in a helping profession! Vicky is incredibly inspiring -- it was quite a day to for us to get to meet.
YingZ3 karma
Hi Vicent, thank you for sharing your experience here! My husband has leukemia, and will need find a donor as well. We just want to know, from a donor's perspective, what the procedure is, how hurt it is and how long for you to completely recover?
Vincent_Pan6 karma
I am happy to share my experience. There are two ways that a donor can donate, and it depends on what the donor needs. From what I understand, one method is similar to giving blood for a few days in a row. Some times people who donate this way have flu-like symptoms. The other way, and this is what I ended up doing, is a surgical procedure. After what I think are a standard battery of tests, I went in and received general anesthesia. While I was asleep, they removed an amount of my bone marrow using a special needle. When I woke up I was a little groggy from the anesthesia but didn't feel any pain because of medication for that. I was sore for a few days but felt completely recovered after that. I wish the very best for your husband and you. If anyone you know is on the fence about joining the donor registry you can send them to me and I can do my best to answer their questions.
odorlesshumor3 karma
Hi Vincent, any advice on how to encourage others to be a marrow donor?
Vincent_Pan3 karma
I have volunteered at recruitment events and in my experience people do want to help others. It seems people just need to be asked and to be given the opportunity to do the cheek swab (this is where you rub a q-tip on the inside of your cheek, and along with a form, it is all that's required to get signed up) on the spot. It is also important to be patient and to try and answer questions as thoroughly and without any pressure as possible. Those are just some of my observations -- maybe others have actual research on what works and what doesn't work for encouraging others.
Vincent_Pan6 karma
It turns out that there are a number of different ways to join the registry, which is a fancy way of saying the list of people who are willing to consider being a donor. All of the different ways are quite easy. As some of the other people posting have indicated, you can visit websites like www.aadp.org as well as others to learn more. Or you can email [email protected] or call 1-800-59-DONOR. AADP recruits with an emphasis on minority communities because those recipients often have a harder time finding a match, but they are very happy to accept potential donors of different ethnic and racial backgrounds! And you will also see various campaigns for particular people who are looking for a donor match. When you sign up through these efforts, it ends up going back to the main national registry so you don't have to sign up more than once. A lot of these campaigns are out and about recruiting through in-person drives at different events and functions. It was at an event like that where I first got signed up. I know there are lots of campaigns right now so if you are affiliated with one of them please feel free to post!
scooternak3 karma
Vincent, I'm hoping the media attention that you and others are getting will help increase the number of people in the database. It's encouraging to see the result of the media blitz the Save Nina folks have generated. Times Square, wow!
Ruby keep up the wonderful work you and the others at AADP do to help those needing a bone marrow transplant. You are the unsung heroes.
Vincent_Pan3 karma
I share your hope about increasing the number of people in the donor database! I was recently in NYC and saw the digital billboard in Times Square for Save Nina and it inspired me to think that more people are learning about the process and how they can help! We can all do a little more, I think.
Vincent_Pan9 karma
I'm not a scientist but with that caveat I'll do my best to explain what I can. For me, what was important to understand is that we all have bone marrow that helps produce certain types of cells namely (and mostly?) blood cells. With certain types of cancer and other diseases, getting a transplant of bone marrow can save a person's life because the cells produced by the new / transplanted marrow are healthier and produces what eventually replace the unhealthy cells. I think some other important things I learned in this process is that bone marrow, like blood, replaces itself. So when you donate bone marrow to someone who needs it, your own bone marrow regenerates after a while so it's like you never lost it. Like donating blood in a way, though much less commonly understood.
Vincent_Pan2 karma
The way it works is both the donor and recipient can separately check off a box saying that they are willing to have their contact information shared. So only if both parties agree does that happen. But it is also possible to exchange cards anonymously through the program. Prior to meeting (there is a one year waiting period for confidentiality and other reasons) Vicky sent me very well-drawn and nice cards and I sent her a get-well message, too. I think we both were glad to meet one another, and also agreed to do it publicly in order to help raise awareness. Thanks for the question!
Vincent_Pan7 karma
Hi, it's 7pm on the west coast so I guess it's time to start answering some of these questions! Thank you for your question -- it's a good one to get started with. I'm doing very well this evening. Though I live in San Francisco, right now I'm on the east coast visiting with family including a 4 month-old niece and a six year-old nephew. They are both healthy but there are lots of children and adults who are not, and a large number of them need bone marrow donors as well as other transplants. So hopefully this reddit will answer questions people have about what is involved in donating! Hope you are having a good evening, too!
Vincent_Pan1 karma
There is zero pain the process to get tested to see if you are a match. You swab a q-tip on the inside of your cheek and that's it. Later on if they identify you as a match you have to do more blood tests, and as posted above there are two ways the procedure can go. Both involve some discomfort but it seems to depend on the person.
ANerdMomHatesYou2 karma
How were you contacted when they found you were a match? Phone? E-mail? Mail?
Vincent_Pan1 karma
I think it was both by phone and email. Later on forms came through mail. But there was an assigned person to follow up with me throughout the process so it felt pretty personal.
oh_fuck_you2 karma
Vincent, how has life changed for you knowing that you've helped out someone in such a big way? Also, how is Mr Weston doing?
Vincent_Pan2 karma
I guess I would say that I feel very, very lucky to have helped Vicky, and that I have even more respect and love for all the patients, their families, and their friends who are battling different diseases and cancers. My friend Kevin Weston had a transplant surgery very recently. I'm hoping anyone who sees this can offer him your prayers, wishes, thoughts -- whatever you believe in or works for you - for his recovery.
Vincent_Pan1 karma
Good question that rarely gets asked. The marrow extraction is done with these special needles so no, very little to no scarring at all. I think it looks like I have a tiny birthmark where the needle was.
D2sWorld1 karma
How does bone marrow feel? And what prestige where you given for your donation ?
Vincent_Pan3 karma
Do you mean how does donating bone marrow feel? I guess I wasn't too nervous about it because I read up on it and asked a lot of questions. I was anxious for Vicky, the recipient. I didn't know her name until a year later but I was worried about her, anyway. The actual process was pretty straightforward - had some basic medical tests and answered lots of questions about my health, went in for the surgery during which I didn't feel anything because I had anesthesia, and then woke up and was a bit sore for a few days. But it was really great when I learned that Vicky was doing better and that the transplant worked! I am a little embarrassed that there has been a fair amount of media and other attention for me. Obviously that's not why someone does something like this, but you do hope that the attention raises more awareness and encourages more donors. Vicky and some of her very young cousins made me some nice cards and I will always appreciate those!
Vincent_Pan3 karma
In my case, and I think it's worth pointing out that there are two ways that people can donate depending on what the matched recipient needs, I was a little sore for about 3 days. I am pretty sure that is within the range of what others experience but I know that it does differ for every person. I definitely didn't use any of the pain medication after the first day. Maybe I was a little more tired than usual for a day or two after the soreness was gone. But generally speaking it was not worse than having a cold or a flu. Definitely better than that.
scooternak1 karma
Vincent, just want you to know that you and other donors are big big heroes to me. I had a friend who donated and didn't tell me until 5yrs after. He's one of the people I respect the most in the world.
Vincent_Pan3 karma
I think it's very kind for people to say things like this. Hopefully donating marrow will become more widespread as people realize how safe and convenient it is, and how much it helps people in need.
PeterKim21 karma
Can you share how did you feel when you first knew that you were a match?
Vincent_Pan2 karma
Sure. I think it was a combination of surprise, excitement, and nerves. Surprised because I really didn't think about being a donor after I had registered years before, and I know that the chances of being a match are low. Excited because having the chance to help someone in such a meaningful way is, well, exciting. And I had some nerves because I started to get worried for the girl (I later learned her name was Vicky) and hoping that this would help her.
donnareddithis1 karma
How long were you registered as a donor before receiving the news you were a match?
Do you remember where you registered? and what made you want to join the registry?
Vincent_Pan2 karma
I think I was registered for at least two or three years, maybe more. I only vaguely remember getting registered. It was either when the organization I work with was helping with a recruitment drive, or another event where volunteers were tabling. In any case, I joined because someone asked me very nicely and explained that there was a chance that I could help someone (by saving their life) without any risk to myself.
scooternak1 karma
Vincent Is there an increase in the number of Asian Americans in need of bone marrow transplants or are we just hearing more about the need?
Happy to have Ruby answer if necessary.
Vincent_Pan2 karma
This is an interesting question and I don't know the answer. I would encourage Asian Americans and others to help lead the way for getting everyone registered.
DiscoDiscoDanceDance1 karma
Thank you for doing what you did, man. I was fortunate to receive an auto stem cell transplant for my treatments, but my little buddy Santiago (who I think of as a brother) lost his battle with cancer because they couldn't find a Match for his bone marrow transplant.
Vincent_Pan3 karma
I am glad that you were able to receive a transplant. It breaks my heart that there are so many people, including children, who are losing their battle with cancer for lack of bone marrow donor matches. This is something that not only we as a society - but we as individuals - can change. Through this experience I have met many people who are in need. Let's keep on encouraging more people to become donors as that is something real we can do to honor the memory of those who are no longer with us.
scooternak1 karma
Vincent, If you are a match for another person in need, can you donate your bone marrow again? Is there a limit to the number of times one can donate?
Vincent_Pan3 karma
Though I think the odds of being a match twice are not high, it must be possible. I say that because in my case they asked if I would be willing to stay in the registry. I said yes! I don't know if there is a limit.
TwilightTink1 karma
Thank you so much for sharing your experiences! I joined the registry earlier this year after reading an ama from a guy as he was donating the nonsurgical way, but I didn't know much about the surgical way, and to be honest, was a little apprehensive about it. But after reading about your experience, I feel much more at ease and really hope that they call upon me to help somebody.
Vincent_Pan1 karma
If you are ever contacted as a potential match, they give you lots of materials you can read through and people to talk to so you can make an informed decision that is right for you.
dr1nkycr0w1 karma
As someone who had his nephews life saved by a person like you I thank you from the bottom of my heart.
Your selflessness and generosity have made a bigger impact than you will know.
Nonchalant251 karma
Were you somehow compensated for lost work or recovery time? Still an awesome thing to do either way.
Vincent_Pan2 karma
I think I missed two days of work? Because I did the procedure on a Thursday and took Friday through Sunday to recover. I had plenty of sick days stored up at work so used those.
sexyasshart1 karma
Hi Vincent, what was the discussion that you had together, was she thankful? Or did she cry and scream and jump all over the place when she saw you?
Vincent_Pan1 karma
Vicky was very thankful and polite. I also met Vicky's mom who was also very thankful. We all got along fine, and I also met many other family members, too. Vicky had some general questions about who I was and I wanted to learn more about how she was doing. I think it's like getting to know anyone you don't know, except you already have a unique connection.
climb_on_rocks1 karma
Every time I hear stories like this it makes my heart melt... Thank you, people like you saved my Dad's life too.
Vincent_Pan2 karma
There's more in earlier posts but basically there is a non-surgical procedure and a surgical one. The non-surgical is like giving blood for a few days with flu-like symptoms. The surgical one (what I did) involves general anesthesia so you don't feel anything except the initial needle prick until you wake up groggy and a sore throat (treated with ice cream, lozenges) from the breathing tube. They have pain medication for soreness from where they use a special needle to withdraw bone marrow. The soreness was basically gone after 3 days. I think there may be another procedure that is really painful called spinal tap that is often confused with bone marrow donation.
jajajajim1 karma
Do you have any regrets about meeting the recipient? Like the awkwardness of her or her family feeling indebted it you?
Vincent_Pan2 karma
I don't have any regrets. I know they are grateful but I don't believe they feel indebted to me as this was a voluntary choice I made without knowing them or without them asking me. It's actually quite nice to know a whole new group of people.
UCF20051 karma
Good on you for saving a life! Are there any long term heath issues, any pains and aches that last for a long time? I want to register, but my husband is worried about any health problems that may happen at a later stage in life because of this. We haven't had kids yet, so he is not very keen about it.
Vincent_Pan1 karma
I have not had any long-term health issues. The donor program calls me periodically with questions about my long-term health so they must be constantly trying to see if there are any long-term patterns, etc.. I think it is normal and advisable to be cautious, but learning more and making informed decisions can really help someone. And who knows, someday that person may be someone very close to you.
Vincent_Pan1 karma
I think we were both interested in meeting, partly because of curiosity. But on my end if we had never met and I never learned her name, etc.. it still would have been a terrific experience. I met lots of people in the donor program, patients, medical professionals, and volunteers. I also learned a lot. The fact that we did want to meet, and that it was easy to do because we both lived in the same area, meant that we were able to also help raise more awareness. Even if it is a little embarrassing to talk about oneself so much.
Indiesol1 karma
I've heard donating marrow is incredibly painful. More so than other donation procedures from living donors. I know you can only speak on the pain from your situation, but how bad was it ?
Vincent_Pan1 karma
I'm not sure where this comes from, or maybe my situation was just different. The pain -- mostly soreness -- lasted about three days but was no more than if I had overdone it at the gym. And the procedure involved general anesthesia so I never felt anything while it was happening. There is another procedure that does not involve surgery and is described as similar to giving blood several days in a row, where the symptoms are flu-like.
Vincent_Pan1 karma
I describe it in other posts and how there are different ways that people donate, but in my case there was never a sharp pain or anything like that because I was under general anesthesia. After I woke up I was groggy for a while, and then sore for about 3 days. The most similar type of experience is when I lifted weights really hard after not going to the gym in a year.
IamMcSqueeb0 karma
Im jealous of you. I have Ulcerative Colitis and I read that I'm not allowed to join the list because of it. It is apparently an autoimmune disease that they don't allow.
So screw you and your helping other people live. I wish I could do the same.
Vincent_Pan1 karma
Well, maybe one way to think of it is that the people who recruited me to join the list are the ones helping people live. You could do that once in a while?
bongo334144 karma
Hi Vincent, this is Wendy Tran, one of Vicky's aunties. I met you that day at UCSF. I just wanted to say THANK YOU again for saving our little Vicky's life!! She is doing great now. I hope you are doing well. My two boys still refer to you as "superman" for saving her life! =)
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