Hacker News new | comments | show | ask | jobs | submit login

IGNORANCE:

The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.

If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation.

I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.




My brother had a bone marrow/stem cell transplant a couple of years ago and I was a matching sibling able to donate. Yes, it's unfortunate that there are so many of us who don't understand how risk free this procedure is to a donor. There are a couple of problems that contribute to this in my opinion.

First, the name of the procedure itself is misleading. It's called a "Bone Marrow Transplant". A lot of times however, there is not even bone marrow taken directly from a donor. I was not even poked in the bone at all. In my case, I was hooked up to an apheresis machine for a few hours, and it basically pumped blood out of one arm, and then pumped back the blood minus stem cells into the other arm. A bag of stem cells is then intravenously given to the patient which then makes its way to the bone cavities and starts growing new bone marrow. The donor goes back home on the same day and hangs out like its any other day.

Second, there are some blood disorders for which they require bone marrow from the donor. Now, again, this is not scary as it sounds. They extracted bone marrow a few times from my brother for tests. There is no "drilling" involved. Yes, its a bigger needle, that they insert into your hip bone after administering local anesthetic. I don't know first hand how much it hurts, but they don't even admit you in the hospital for a day. And for the next couple of days, you are a bit sore from it. My brother has average pain tolerance and I didn't see him writhe in pain at all at any time once the procedure was done (happened in less than 10 minutes). I suspect that a torn ACL, a broken ankle or arm which many people on this list would have experienced are far far much worse.

Third, unlike other types of donations involved in transplant like a kidney or liver, this process doesn't take anything from the donor that is not completely replaceable. If you donate stem cells, they will replenish in your body automatically, and the same with bone marrow. Really, there is no easier way where it costs you almost nothing but average pain and minor discomfort for a few days at the most.

I spent over three months in the hospital with my brother in India when he had the transplant. Fortunately, I was a matching sibling so we didn't have to look in any registry. But I spent my days and evenings with countless families who had a loved one undergoing chemo, while just waiting hopelessly to see if they could find a matching donor in a registry. Few things are as heartbreaking to see as families just not being able to do anything and watch someone in their family just hinge on hope from a database. The least we can do is increase their chances for hope with a cheek swab.


I have donated bone marrow three times. All were during my undergrad years, and the motivation was supporting medical research but also that it paid well (from the perspective of an undergrad).

The donation process was exactly as described in http://www.marrow.org/Registry_Members/Donation/Donation_FAQ... but I was given only local anesthesia. The marrow was withdrawn from one of the two protrusions of my pelvis about 2-3 inches away from my spine (basically the very top of my butt). The process is certainly a strange feeling, but it's tame--not donating a kidney or anything.

It's a good opportunity to practice deep breathing and relaxation while focusing on the wonders of the human body.


> but also that it paid well (from the perspective of an undergrad).

The page you link to clearly says: "Donors never pay for donating, and are never paid to donate."

Is your story missing something?


> Is your story missing something?

Yes, I should have noted that I was donating as a paid research subject and not specifically to a marrow bank or to an individual who needed a transplant.

I commented to explain that the marrow-withdrawal process itself is nothing to be concerned about, actually involving less discomfort than donating blood.


Oconnore,

Being afraid of something like this is absolutely rational. Losing something that helps to keep you alive is scary, even when you're told that there's absolutely no risk to your personal health in doing so. But don't let fear hold you back. That sounds super high and mighty, but I understand your fear more than most.

I am terrified of giving blood. Terrified. The thought of having my blood drained out gives me goosebumps. Writing about it is giving me goosebumps. That being said, I donate blood platelets every month or two. The process takes 2 f'n hours, and God forbid I look at the blood leaving my system (because I will pass out). The trick for me is not looking.

Keep in mind that donating anything is a good thing, and they will never take anything that will hurt your body's ability to recover. Try it out. If you can stand it, at least you overcame your fear and tried it. If you can stand it, or think you can, find a trick to make it more manageable.

And last bit, I too have never donated marrow before. If you're willing to try, I will try it as well. Any other first timers are welcome to jump on the bandwagon with me. Thanks for sharing Oconnore.


I agree with you. I have no idea what's involved and because of my own ignorance all I know is that it could be a lot of pain and somewhat time consuming.

That being said, I just signed up. I had started reading the book "The Emperor of All Maladies" and then seeing Amit's post pushed me over the edge to go ahead and sign up.

Even in my ignorance I figure someone's life stands in the balance and my pain and time is more than worth it to potentially save a life. That being said if my # gets called I'm sure I'll be nervous as hell!


Thank you for doing so. You've got heart.


Hi oconnore,

I'm an Acute Mylogenous Leukemia (AML) survivor and a Level 2 ambassador with the National Marrow Donor Program. I'd like to thank you for your honesty, as a lack of awareness (and the resulting fear) is one of the biggest obstacles the NMDP faces when trying to recruit donors. Your perspective really is something that I think a lot of people feel but don't necessarily share, and I commend you for having the courage to do so. It's a step in the right direction for finding the right means of educating the public.

I'll try to respond to some of your questions as best I can, but please keep in mind that I am not a doctor and while I have received volunteer training from the NMDP, any thoughts expressed in this post are my own.

Your bone marrow is the mechanism in your body that generates blood cells. Blood is composed of a few different parts -- red blood cells, white blood cells, platelets and plasma. Red blood cells carry oxygen throughout the body, plasma is the liquid, platelets help in clotting to prevent bleeding and white blood cells act as the carriers of the body's immune system.

What happened with me (and likely with Amit) is that at some point a mutation occurred within my bone marrow so it began generating malformed white blood cells. Instead of behaving like a normal immune system these mutated cells did nothing but fill up my blood stream, inhibiting the growth and transport of normal white blood cells and platelets. As a result I began to get progressively sicker, with bruising appearing over my body. As you can imagine this situation gets very dangerous very quickly, as doctors told me that if I hadn't gone into the ER when I did I ran the risk of bleeding in my brain while walking to class.

Chemotherapy was used to effectively kill off all aspects of my blood -- white blood cells, red blood cells, platelets included. The hope here was for chemo to wipe out as much as it could in hopes of eliminating all traces of cancer in my bone marrow. Due to the human body's natural resiliency, after chemo eventually the bone marrow would start to regenerate. The hope was that after this regeneration happened no cancer cells would be reproduced.

For me, it was a waiting game: undergo chemo, wait to see if cancer reappeared. I did this six times (2 inductive rounds, 4 consolidation rounds). Thankfully after those first two rounds I was in the clear. I've been in remission for a little over four years now, and I still go into the doctor for regular blood tests.

While I'm not exactly sure of the medical reasons why bone marrow transplants are needed, I do know that a very simplistic view of them is that they're necessary when chemotherapy is not enough. Whether it's because the chemotherapy is ineffective or specific DNA markers or whatever, there are times when the body's natural bone marrow is no longer effective in producing normal blood cells. It's a dangerous procedure for the recipient (because of the possibility of the body rejecting the transplant) but it's not considered in circumstances where other viable alternatives exist. It really is something of a last resort.

For donors, joining the registry is painless and extremely simple. The NMDP asks you to check against a preliminary health screening (http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidel...), understand the commitment (http://marrow.org/Join/Your_Commitment.aspx), and fill out a form with some medical/contact information to make sure that you can be contacted in the event of a match. I read a statistic that less than 50% of those currently within the registry (1) can be contacted successfully and (2) are willing to donate once a match is found. (http://www.ij.org/about/2903) The form asks for your contact information and the contact information of two others who do not live with you, just in case you happen to move elsewhere at a later date. The NMDP takes privacy very seriously, and will not solicit you or others with the contact information you provide.

The form comes with a swab kit consisting of four cotton swabs. These swabs are processed by the NMDP to match donors and recipients by specific DNA markers. To register, you simply swab the inside of your cheek with each swab, for 20 seconds each. Put the swabs back into the kit and then they're sent off for processing. That's it; a form and four cheek swabs.

A donor's commitment when joining the registry is to be on the registry until they're 61, although they can remove themselves from the registry at any time.

Given the specific DNA markers used to match donors and recipients, realistically the chances are that you will never be called to donate marrow. According to the FAQ here (http://amitguptaneedsyou.tumblr.com/faq), the NMDP puts the odds at 1 in 540.

If you do one day receive a call to be a donor, there are currently two main methods of bone marrow donation. The first, Peripheral Blood Stem Cell (PBSC) donation, is used in over 70% of cases and is described in detail here: http://www.marrow.org/Registry_Members/Donation/Steps_of_Don.... Another good reference is this site: http://helpingtami.org/asian_bone_marrow_and_pbsc.html, which despite the cartoonish graphics, serves as a pretty accurate representation of what PBSC entails. You get a shot for a few days that kicks up your normal bodily process of bone marrow production into overdrive, to the point where bone marrow cells enter your bloodstream. You donate blood, after which bone marrow cells are irradiated out. The blood is then put back into your body. I've personally received the shot (called Neupogen) that is used to kick up your bone marrow production over 30 times, as it was used following each of my rounds of chemo. A common side effect of the drug is that it makes you a bit achy and sore, as if you had gone on a long hike the day before. I did not feel any significant discomfort on neupogen to the point where I couldn't go about my day as normal.

The other procedure is extracting bone marrow from your hip bone, which is performed under general anaesthetic. It is also depicted on the helpingtami.org link above. 30% of bone marrow donations are performed this way, and I believe it's usually due to restrictions of the recipient. Receiving a bone marrow transplant can be extremely taxing on the human body, and if a patient is too young or old for PBSC a bone marrow extraction is requested in its place. Admittedly this process is more invasive, and as a result donors are put to sleep. Doctors use special, hollow needles to extract little bits of bone marrow from your hip, and because the needles are small it does require a lot of sticks to collect enough marrow for a transplant. I've also had this procedure done to me, albeit in a lesser volume -- it's the same process used to perform bone marrow biopsies. I was awake for the procedure both times and received local (vs. general) anaesthetic. Needles are needles so there was discomfort, but it was very quick -- like a hard pinch. Patients are sore for a few days afterwards, more so than PBSC, but recover quickly. Donors perform a full health scan before donating in the interests of their own well being as well as the patient, so if you're not healthy enough to donate and recover, you will probably not be allowed to get to that point in the first place.

When donors join the registry they commit to donating to anyone in need, not just the person the drive is in honor of. So although a local drive may be in honor of Amit, the power of the awareness being raised by the publicity of his sickness is that there are people who have never heard of Amit Gupta that will have their lives saved by his efforts, perhaps even decades from now. I know that Amit is a very important person in the technical community, but please remember that everyone who needs a donor is the most important person in the world to somebody -- a parent, a sibling, a child or a best friend. In that regard I believe that everyone who has someone in their life that they love more than themselves can empathize with what it must be like to be powerless to help that person in their time of greatest need.

Please consider joining the bone marrow registry. It truly is the opportunity to save someone's life.


I have been unable to donate blood because I take Avodart. Is this the same for donating bone marrow? I am 70 years old in good health and am a B+ blood type walter.lapham@gmail.com


Hi waltl, unfortunately bone marrow registration is limited to donors between the ages of 18-60. Please see this page for more information: http://www.marrow.org/Join/Medical_Guidelines/Medical_Guidel.... Thanks for your willingness to help!


There are several methods, here is one:

http://www.marrow.org/Registry_Members/Donation/Donation_FAQ...

And here is another:

http://en.wikipedia.org/wiki/Apheresis

The second one is the more likely one to be used, the other is quite rare. In this case it seems it is 'only' the second (which is still quite bit more time consuming than a normal blood donation in duration).


That fear is natural, and the reason why the various bone marrow organizations have all sorts of available brochures and web pages available.

For a first hand account: I've donated bone marrow by peripheral blood stem cell extraction, and it's mostly painless. I'd do it again any day (except I'm not allowed to by my country's organization's policy, but that's another problem). A colleague of mine donated by needle extraction, and didn't report anything traumatic.


In the general case:

It is a rather big needle that goes into you, but you're under anesthetics, so it'd not that big of a deal. Risks are minimal, and include unwanted damages to bone, muscle and nerves, plus any regular anesthetic-related effects. Realize that with any operation, these things are unavoidable and it is not unique to bone marrow donations.

Generally (quoted from Dal med school), there is about a 1% chance of adverse effects in the donor, and the 1% is almost entirely anesthetic related.

You will be sore for about two weeks. The amount taken, however, is very small, and it shouldn't really affect you all that much. All in all, it's worth saving his life--any life in general, really.


Pardon my ignorance, but: for those 1% : does the medical insurance cover you for any after-effects? Does the recipients insurance cover you for any medical expenses arising from the donation?


The first question of the FAQ (http://amitguptaneedsyou.tumblr.com/faq) should have you assuaged.


It really doesn't, sorry. I have no idea what any of that means, and I don't even understand what exactly my bone marrow does, never mind how much of it I can lose before something bad happens. I have lost blood before, like when I scraped my knee falling off a bike. I have never had my blood filtered for stem cells. Don't I need those?

And I am a college educated person. If I got through school with this level of ignorance about the bone marrow donation process, there are probably millions of other people with similar ignorance about the issue (and likely, those people are not as quick to do research, as I am doing now). I don't think a few sentences in a FAQ is enough to combat this.


Fair enough. I don't know much about Peripheral Blood Stem Cells in particular, but I am under the impression that stem cells in general are not serving much of a purpose besides waiting around to become differentiated into other cell types.

But I wouldn't be too worried about giving up any of your cells, besides brain/nerve cells.

Almost all our cells have the same genetic information (Red Blood Cells are one exception), so it is theoretically possible to turn one type into just about any other. Shinya Yamanaka's team made a huge step in that direction experimentally about 5 years ago: http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell

I'm not saying that this is a viable option if you run out of PBSCs (just as it is clearly not yet an option for you to donate skin cells to help Amit), so one thing you may want to find out is if your PBSCs are limited in supply--I don't know (and I am also not in the right demographic for this donation).


A PBSC-based donation is preceded by a few day's worth of treatment to activate the bones' BSC reproduction, so that they're numerous enough to outgrow the bones and actually become "peripheral". So they're really taking away cells that you usually don't have with you.


I have done the Peripheral extraction thing. You have a needle in each arm, and apart from that slight discomfort you can just sit/lie back and watch TV for a few hours. As tripa says, you get a few days of injections beforehand to stimulate the production - these are subcutaneous, like an insulin shot.

Here's some more information: http://www.beatson.scot.nhs.uk/content/default.asp?page=s22_...




Applications are open for YC Winter 2018

Guidelines | FAQ | Support | API | Security | Lists | Bookmarklet | DMCA | Apply to YC | Contact

Search: