Discuss: Organ Donation

Mar 29, 2013

Earlier this week, I witnessed a frantic Twitter debate regarding organ donation.  Being a proponent of organ donation, I was shocked by some of the opinions expressed by detractors.  While I understand choosing not to be a donor for religious reasons or being unable to be a donor due to health concerns, some of the reasons that the anti-donation crowd were giving were just (in my opinion) ludicrous.

Some said that donation was “gross” or “icky.”  Others expressed their disdain for being “all cut up” or “harvested for parts.”  And others believed the old, erroneous urban legend that doctors and nurses don’t try as hard to save organ donors because they’re perfectly happy trading the life of the patient in front of them for that of another person that they’re never met.

It probably goes without saying that I’m an organ and tissue donor, but let me take a brief minute to tell you why.

My college boyfriend, S, developed a condition during his teen years that caused urine to leak from his bladder into his kidneys.  Over time, the acid in the urine destroyed the fragile tissue, leaving his kidneys non-functioning.  He was lucky and was able to get a transplant from his dad, but not everyone is.

According to the government, there are more than 117,000 people waiting on the list for organ donation.  18 people die every day waiting for organs.  What if that person was you or your loved one?

Want to become a donor?  All 50 states and D.C. follow the practice of “first person consent,” meaning that if the donor has consented (either by joining a registry or via driver’s license mark) then the family cannot override that decision.  However, if there is no clear evidence that the person wanted to donate, then the decision falls to their family, which in a time of grief seems like a hell of a burden to put on them.

Joining your state’s donor registry can be done easily and quickly online.  Registries also give you the ability to select which organs and tissues you want to donate, so you can spare your next of kin the pressure of making those decisions for you.

One organ donor can save up to eight lives.  You can also give someone their sight back or help burn victims by donating skin.  I figure that if I’ve shaken off this mortal coil, someone else might as well make use of whatever viable parts that are left behind.  Who knows?  Maybe one of my kidneys will become President or be the first pancreas on Mars or just give a perfectly normal person a chance to see their grandchildren grow up.

So what about you, are you an organ donor?  Do you know someone who benefitted from organ donations?  Or if you’re on the opposing side, maybe you can help me understand why.


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  1. M says:

    I am all for it (always have been). I want to share a story of a friend of mine. She unfortunately lost her child during childbirth complications. Her and her husband made the decision to donate his organs and that decision saved four other babies.

    I am for it because, well, when you’re dead, you can’t take them with you.

  2. Maddie says:

    I am an organ donor. A friend in college died in a tragic accident, but fortunately his organs were able to be given to several other people. I know I felt some comfort knowing that even if he wasn’t in our lives anymore that our loss had allowed someone else more time with their loved one. I was a donor before this happened, but I’ve definitely been more vocal about the benefits since.

  3. M says:

    Great post. I think that there are so many common misconceptions about organ donation that can be overridden if you just talk about things, but it is one of those issues that very few people talk about until families are dealing with some of the most awful times of their lives. Thanks for raising it – AND – I was just made aware of your blog and love your fashion tips, I know that I am going to be a better dresser before long!!

  4. Vanessa says:

    My third cousin has lupus and has had two kidney transplants already (I believe she’s in her 30’s). But I also had a major medical crisis as a child and while blood was the only donation I received, I can certainly imagine someone very close to me needing a vital organ and not being able to get one. My license had me listed as an organ donor. I really can’t fathom anyone being against organ donation if not for religious reasons

  5. Chinarette says:

    I was surprised to find, when we got drivers licenses together in a new state, that my husband felt squeamish about organ donation. When I asked why, he couldn’t really articulate his decision. I told him I felt strongly about it and that I hoped he would reconsider his choice.

    My immediate family (Mom/Dad/sisters) knew of my preferences, so I made sure to spell it out then and there to him that I want all possible organs donated. It’s also verified on my license, and I plan to sign up on my state’s registry.

    I understand why someone would choose not to do it for religious reasons; however, I too, don’t quite understand why someone *wouldn’t* sign up otherwise. Maybe it’s fear that your body will look scarred or mutilated? Which, from what I understand, is unfounded.

  6. Claire says:

    Thanks for addressing this! It’s an issue close to my heart.

    My boyfriend’s father has a donated liver which he got about a decade ago. He’s a musician and always ends his shows by telling the story about how his donor saved eight lives, and how he honors his memory with every song he plays and everything he does in life- then urges everyone in the audience to be an organ donor too. It’s both tragic and touching. Obviously, I can’t think of a single reason not to be an organ donor.

    My understanding is that in high-stress situations where organs can potentially be donated, it usually comes down to the family rather than the registry- legal or not. So it’s also important to tell your family that you want to be an organ donor. Can’t hurt to have that conversation, at least.

  7. meghan says:

    I’m an organ donor. My dad had the kindest man I’ve ever known and had the most beautiful brown eyes that I did not inherit but I was always envious of because they expressed so much emotion. When he died very suddenly and unexpectedly, he had not joined the state registry, so the doctor came to me and my mom. We opted for some organs to be donated, and I specifically asked for his eyes to be donated. He died the year before I got my driver’s license, and checking that box to register to donate was really important to me.

  8. DCQuarterlife says:

    For some reason I keep getting images from the book & movie Never Let Me Go from this post (different there as they are clones who are “grown” just for organ harvesting but I digress).

    I am in a weird state where I am Jewish and while there are debates in the Rabbinical world on whether organ donation should be allowed have been taught that I shouldn’t “mutilate” my body in any way (from tattoos to organ donation). The thing I struggle with is I’m not religious but I don’t want to be “rejected” for cutting up my body. I am still very undecided on it at the moment…

  9. erika says:

    Anyone else read the One Last Wish/Lurlene McDaniel books as a young adult? I loved them, and they completely shaped how I felt about organ donation. Also, in addition to donating your organs after you die, you can also register to become a bone marrow donor, which allows you to save someone’s life while you yourself are still living. Thanks for raising awareness about this important issue.

  10. Jenn says:

    Claire – are you dating Phil Lesh’s son?

    I am an organ donor. I agree with the previously expressed sentiments that if I’m dead, I’m not using them and I would surely rather someone’s life be saved if my organs are in such condition that they can be salvaged and used to save a sick person.

    Personally, I can’t even fathom the religious reasons – I’m not here to make waves or criticize those preferences, but when self-sacrifice is a major thing in many modern religions, wouldn’t that be one of the greatest gifts you could give? Just sayin…

  11. Mountaingirl says:

    I am so happy to see all these comments from potential future donors! One thing that I’d like to add is that even if your health isn’t the greatest, please don’t assume you can’t be a donor. Many people who are elderly or in poor health can still donate some organs like corneas- wouldn’t it be wonderful to give a blind person the gift of sight?

  12. Lisa says:

    I’m an organ donor. It is my understanding that some people think that organ donation can be painful. See this (slightly insipid and poorly supported) WSJ article: https://online.wsj.com/article/SB10001424052970204603004577269910906351598.html

  13. Lady Lawyer says:

    I am an organ donor, over my family’s objections. I have been since I got my license. I also dontate blood…frankly because it scares me a little and I think it’s a good idea to do something for someone else, even if it is a little scary.

    I don’t know about the opposing arguments for this. My family was on the “it’s icky” train, which is silly to me. If I leave no other legacy behind, I can at least leave those.

  14. Stella says:

    I’m signed up to donate when I die. I don’t have any issues with doctors taking anything of use after I die, but I do get kind of squicked about having my corpse prodded and probed via medical studies (I know, I’m dead–why should I care?) so my position is: take everything you can and cremate the rest. The end.

    • Belle says:

      Yeah, the medical studies one kind of freaks me out. But there was a book about something similar years ago, I think it was called the Immortal Life of Henrietta Lacks (?). Basically the woman died of cancer and her tissue has been used for groundbreaking research. So maybe it’s not so bad, but I just don’t want to think about it.

      • Kay says:

        My only issue with Immortal Life of Henrietta Lacks is that her cells were taken without her knowledge or consent and her family was never compensated in any way.

  15. CM says:

    I am absolutely for it. I work at a children’s hospital and watching a child die while waiting for an organ transplant has probably been the most heartbreaking thing I’ve ever seen. On the other hand, seeing a child who was formerly hooked up to countless machines to stay alive and is now healthy due to transplant is amazing. I was already an organ donor but I now feel very strongly about it after meeting many families that have been directly impacted. Thanks for bringing up this topic.

  16. GoGoGo says:

    Hi all,

    OK, I’ll represent. I’m a non-donor. It’s not for religious reasons, but out of respect to some concerns from a couple members of my family.

    When I first went to get my driver’s license at 16, my mom asked me to please not put myself down as a donor. (* General upsetting-ness alert…)

    Her argument was this: while we don’t like to dwell on this, donor organs can’t come from just anyone who’s deceased. The chronically ill don’t make good donors, nor do the elderly. The ideal donor would in fact be someone like an otherwise-healthy and fit 16 year old, who’d just been involved in a serious but not mangling car accident. And the most ideal candidate would be one who arrived at the hospital still living, someone who was really close to the legal line on being deceased–which is why so many folks find themselves in the position of making these hard decisions really quickly. (I’ll note by the way for context that a girl my age that we knew happened to pass away in such a car accident, really young. That’s why out of respect for my mom have also promised never to be the sixth passanger in a car who offers to sit on someone’s lap instead of wearing a seatbelt–oy, sad stuff!)

    In circumstance like that, my mom’s worst fear was that out of all the many medical professionals who would handle my care in that worst-case-scenario, from the scene to the O.R. to anywhere else, one of them might learn that I was an organ donor and the knowledge might give them some infinitesimal pause as they dealt with my care. Even though obviously it’s no hospital’s policy to go “yippee, a donor!,” as you are all aware, there are lots of folks whose lives have been positively affected by the joy of a donor organ coming through, and are really powerfully aware that one life can turn into eight.

    Now, I’ve had several medical professionals tell me that these fears are totally invalid, that they insult the profession and its dedication to the hypocratic oath, etc, and I have no reason to believe they’re wrong. But, it’s a subject that’s upsetting to my mom, and it’s not one that I’ve really wanted to push.

    Thanks for letting me put out there a controvertial statement. Please note that my mom’s concerns, whether they’re factually valid or not, are at least not what you’d call aesethetic or based on a superficial squeamishness. They’re also consistent, for example, with her own informed wishes about how she’d like her own care to be handled if she were on life support, which is an area where we generally give people a lot of ethical breathing room. It may be that other people’s families who put their objections down to “squeamishness” also have more specific reasons, like this, that they don’t want to get into.

    Reading everyone’s thoughtful comments already reminds me powerfully of the very good arguments for donating.

    If folks have equally thoughtful suggestions about how I might tactfully allay my folks’ concerns, those would be appreciated.

    BTW I donate blood regularly.

    • Belle says:

      I get being deferent to your Mom. You might see if there is some material on the UNOS website or some personal stories that she could read. I think once you put a real face to organ donation it’s harder to look the other way.

    • ic says:

      I appreciate your concern, but as you said, it is totally invalid. Do you think there is any life that medical professionals fight harder to save than the one in front of them? And this probably goes double for a young, healthy person with their whole life ahead of them. In order for donation to happen, the entire ethics board is awakened to insure that there is no hope of saving the person and that they have fully agreed to donate. We all die. In being a donor it let’s you live on in others. It in no way, form or manner makes a doctor less likely to do everything they can to save you.

    • kt says:

      I’m a medical professional. I can’t speak for all medical professionals, but I can tell you that whenever I’ve seen a young, healthy, vibrant adult enter the health care system in crisis (trauma, cancer, whatever) I’ve seen everyone around me double, triple, quadruple their efforts to get a good outcome.

      I can’t convince your mom otherwise but just saying that the above is true, but I want to say it nonetheless.

      Besides, the best organ donors are the ones who are brain dead on ventilators but otherwise intact–withdrawing care early or not trying hard enough would probably actually reduce the number of donors. I imagine any “organ hungry” MDs would actually be going the extra mile to keep bodies alive.

  17. heather says:

    My mom died at 37 after being chrionically ill (Seriously bad asthma) for 4 years and was severely obese. They harvested her corneas, liver, kidneys, etc after she passed. My great grandmothers (who passed in their 80’s) had organs harvested as well. It’s not necessarily that they’ll only take organs from the young and tragic. You just hear more about these situations I think. I’ve worked at Funeral homes in the past and they’ll take whatever they can get that might be useful. I think the only relative who hasn’t been harvested was an uncle who died from colorectal cancer, and I don’t think they’d pull from an aunt who had nonhodgkins lymphoma in her twenties. (I think the term harvesting probably makes it worse for people, too)
    I’ve known people who would be blind without corneal transplants and have other relatives who have needed replacement organs. I have a friend who needed skin grafts after a boatning accident
    I donate blood regularly, and am on the marrow and organ donors transplant list. If you are personally okay with doing this- than great! If not then it’s your body and your choice. GoGoGo- if you r mom doesn’t feel comfortable with this than that’s her decision, but it doesn’t necessarily have to be yours.

    • GoGoGo says:

      That’s interesting. I didn’t know that it was possible to donate that late in life and that’s awesome that all your family did that. (Also, man! Sorry that you’ve dealt with so much illness, that’s a lot!)

      It also means that becoming a donor is something I could consider in the event that I did have a diagnosis like this, or when I got older. I’d have to have a lot of tough conversations with my family in those circumstances anyway, and that could certainly be one of them.

      For now, though I appreciate that it’s my decision and not my mom’s, I think I’ll stay a non-donor on my license out of respect for her wishes, unless she becomes comfortable with the idea. Just like, out of respect for my mom and the girl who passed away, I’m going to continue being a total downer and telling my friends why I’m going to take a cab home after a party instead of piling in the back on a lap(with a D.D. behind the wheel of course!)

      • Dr. Juris says:

        I’m just wondering–if you needed a transplant, would you accept a donated organ?

        • GoGoGo says:

          Sure, absolutely.

          I don’t want to get too defensive of my situation here or put up a big intellectual fight. Everyone’s made lots of really good arguments, I’m clearly not terribly well informed and my decision isn’t based on a watertight philosophical position or anything. I should think about it. Maybe I will.

          But, just to explain, I don’t think of that as terribly hypocritical. (If that’s indeed the implication–don’t want to read into your post, Doc.) Plenty of people don’t donate blood, simply because it kinda hurts. (Perfectly legitimate, seems to me.) You wouldn’t call them hypocritical for accepting a transfusion. Plenty of people could volunteer to train as Red Cross disaster responders, but don’t. You wouldn’t call them hypocritical for accepting help in a disaster.

          • Dr. Juris says:

            Actually, it is hypocritical. I’m not trying to be a jerk, but if you’re willing to take someone else’s organ without considering paying it forward in the same way, then you are (in fact) being a hypocrite.

            Organ donation doesn’t hurt, because you’re past the point of feeling pain when you give them.

            I’d go one step further, and say that you’re being selfish. If you can take an organ without blinking an eye, but refuse to consider giving the same gift of life, then I’d define that as selfish. I truly hope you do consider this and separate out your belief system from that of your mom’s and consider why you would take an organ, but wouldn’t give one. I can’t imagine how you would dignify it.

            • Belle says:

              I’m not sure if the WSJ article reference above is true or now, w/ regards to pain. But I do think that if you’re willing to take an organ, you should be willing to give one up to. If you aren’t than it feels a bit like theft to me.

          • Belle says:

            I guess organ donation feels like it has more gravity to it than blood donation. But it’s a point that I hadn’t considered.

          • GoGoGo says:

            To Dr. Juris (reply function didn’t seem to be working.)

            Would you accept a marrow transplant, and should you be able to accept one if you have not put yourself on the list to donate?

            And to the whole gang–is there any reason you should be able to designate that your body can be harvested for organs, but not donated whole to medical research? If the only relevant test is whether or not the patient feels pain, then why does it matter?

        • Dr. Juris says:

          I’m actually on the marrow donation list too. 🙂 I URGE EVERYONE TO DO SO.

      • kp says:

        Or just sign up as a donor and don’t tell her. Her fears are ridiculous. My mom thinks psych meds are unnecessary and nobody should take them. So I just don’t tell her I take antidepressants.

        • GoGoGo says:

          Disagree. Do not have this kind of relationship with my mom. Have lots of respect for mom and do not want to mislead her.

  18. GoGoGo says:

    BTW, I realize Belle already kind of addressed this concern and posted the UNOS link, which I appreciate.

    I think that answers like the one provided have never been totally satisfying, in that her concern was about more subconscious and emotional responses that my being a donor might provoke, totally removed from actual hospital policy. You know what might help is information about how many people in the course of an emergency are made aware of a patient’s donor status, and at what points in the process.If anyone hsa that, I’d be interested.

    Also in general, while I can see it’s frustrating to come up against a stone wall on this issue when you’ve been affected so deeply, but I think the most productive conversations on this are the ones that come with a lot of “I hear your concerns on this. But here’s why I feel differently…” Just like any other uncomfortbael healthcare issue, from end-of-life stuff to reproductive stuff to stem cells, it’s rare but awesome when the temperature comes down a notch in a conversation.

  19. D says:

    A few years ago I received insight into the process due to the loss of a family member who had a brain aneurysm. It was not until the doctors had done all they could before the idea of organ donation was approached with the family. The hospital answered all the questions of the family, including whether there was any chance of recovery. The decision was made and the family had an opportunity to say goodbye – because of the situation, the family had that opportunity before the process began. The family received general information regarding where the organs and tissue were going and have since received letters from some of the recipients. I had told family before then that I wished to be an organ donor. This situation made me sure of that decision and I have encouraged others to consider organ donation.

    As to the concern that doctors will not provide the level of care if they know you are an organ donor, I ask why would they? First of all, my understanding is that typically the treating doctor would not know whether or not you are an organ donor. Plus, even if you had indicated on your license that you are an organ donor or have registered as an organ donor, in most situations family authorization is still required. Finally, the doctor’s obligation is to you, their patient. Why would they want a person to die, just so that organ donation is a possiblity? Even if the doctor was concerned about another patient, the processing an available organ is complex as the organ has to be a match for the recipeint and the health of potential recipients is considered. The treating doctor does not make those decisions.

  20. MidwestChic says:

    I am defintely listed as an organ donor, and I wish I could donate bone marrow as well (sign up for it ladies!! it may be painful but I’ve seen that it is well worth it)… thanks for this post, Belle. I love coming to your page to read something fashion-y but I end up reading something much more touching 🙂

  21. I am an organ donor, I donate blood, and would consider being a living donor if necessary.

    I have so many physicians in my family and have heard so much about the amazing ability to transplant organs and reuse tissue that it almost feels criminal not to when I don’t have an objection. Thank you Belle, for dispelling so many of the myths surrounding organ transplantation…also to the earlier commenter, there are now precedents for transplanting chronically ill patients (HIV+, some kinds of cancer). Obviously, people are entitled to make their own decision with their bodies, even after death, but I would encourage everyone to consider it and hopefully be a donor as well!

    • Belle says:

      They’re def. doing amazing things expanding the pool of donors. The one that I find so funny was when Robin Roberts had her bone marrow transplant from her sister, she got her allergies. Something I’d never thought about, but I found it kind of humorous.

  22. Amy D. says:

    All I can say is, thank you so much for this post. I agree with you 100% and you nail it perfectly – compelling and eloquent.

  23. raquel says:

    Belle- awesome post. Always so good to see these unexpected life posts on here along with the jcrew goodness. I urge you and all your readers to join the Bone Marrow registry- it is so quick, easy and free. It does involve more than organ transplant after death obviously but it can save so many people’s lives. bethematch.com

  24. Lurker says:

    Hi, I’m usually a lurker on this blog, but I can’t not speak out about this issue. I actually used to be squeamish about organ donation myself, but when I was 19 my best friend died suddenly and unexpectedly at the age of 23 of a blood clot that led to a brain hemorrhage. It was devastating to lose her, especially since she had her whole life ahead of her. Her family chose to donate her organs, and 8 of them were transplanted into patients in need. Her family was able to meet some of the recipients of her gifts, and it means so much to know that part of her lives on in this world. The next chance I had, I signed up to be an organ donor and have been one ever since. It not only means so much to those who receive the donations, but to those who lose a loved one too soon and are able to see her live on through others.

  25. Rachel says:

    I’ve always been for organ donation. My grandma had a heart transplant 18 years ago and is still alive today thanks to the gift of a man who died in a car accident. It’s been so long since her transplant, I sometimes forget that she’s been a recipient of organ donation.

    Even in open caskets, only the face, with the eyes closed and maybe your hands are showing so… might as well donate. You can’t take it with you. If and when I die, they can take whatever they need.

  26. Humanzee says:

    Just wanted to say I registered today because of this post. Thanks.

  27. Sarah says:

    I am pro-being a donor. My mom has struggled with chronic kidney disease (CKD) for the past 20 years of her life, and 2 years ago had to begin dialysis treatments. Due to her size (tiny) and various medical allergies, dialysis was rough on her body. Not a single member of our family (children, husband, brothers, etc) were blood matches. There is a program that allows someone to donate a kidney to a stranger, and as a result, a specific person would be bumped to the top of the recipient list, but even that was difficult to arrange.

    UNOS found 6 different matches for her, but in the final moments, cancelled the donation due to the donor organ having flaws…some of these flaws might have been fine, but the organization will only allow donations to occur when the match is 100% healthy and safe. Finally, after 3 years of waiting, a family friend whose father had just passed away offered to be tested. His reasoning was that if anything could have saved his father (lung cancer), they would have jumped at the chance, so why not see if he could save my mom? He was a PERFECT match, an Ironman, and willing to go through with it, and my mom had her transplant on January 18th. She is recovering slowly, and her donor is already back to running 4-5 miles daily. For the rest of his life, if his kidney fails, he will immediately be given a kidney transplant at Fairfax hospital. It just makes so much sense!


    There’s an article about their donation process. I should also mention that 2 years was NOT a long time to be on dialysis- many people wait 5-8, or re too old to receive a donation. However, if more Americans were listed as organ donors, or would consider becoming a living donor, then the wait on average would drop to below 1 year per recipient.

  28. Natalie says:

    Belle, Great Post!

    I and many of my friends currently have a friend who is in desperate need of a new heart. She is a beautiful 25 year old and has days to live unless they find a match. So needless to say, organ donation is heavy on my heart. While I am already a donor, I know it has convinced many of my friends to change their mind in regards to being donors. I fully believe knowing someone who is in need of an organ, or someone whose organ donation saved many other lives, helps change many opposing views. It becomes very un “icky” and very real.

    Also, being married to a doctor I can 100% say the person on the table is the MOST important life in that moment.

    Thanks again Belle. I hope this brings awareness to many people who may not have even realized they weren’t signed up to be donor, and eases the fear of donation to others against it.

    And for anyone who is spiritual, we would obviously love any thoughts/prayers for our dear friend Abbye and for peace for the donor’s family, if one is to be found, whose loss is unimaginable.

  29. GingerR says:

    You can be a bone marrow donor, and you don’t even have to be dead 🙂

    The blood work to put your tissue into the registry only requires a blood draw. The actual donation for a cancer patient whose bone marrow has been ablated by treatment designed to also ablate his/her cancer is a bit more involved, but not a great sacrifice compared to knowing someone is living because of your transplanted cells. Bone marrow transplants can give someone their life back; it’s worth it to register, which only involves a cheek swab.

  30. Hilary says:

    When my Granny died in her 80s, her corneas were donated and everything that was healthy and viable was also donated (sorry i don’t remember exactly what went where). She was able to give the gift of sight to 2 people and also her organs that weren’t able to be donated to a patient were donated to “science”. Meaning med students could examine them…etc. Even though my Granny hadn’t been specifically signed up to be a donor my Grandfather knew she would have thought it was selfish to keep her organs. Especially if the ones that couldn’t save one person helped someone learn to save several people by examining it.
    When the doctors’ told my Grandfather what had gone where and who had been saved because of my Granny he cried and said it was the best news he’d heard all week. Honestly as weird as it may be for some people to image their wife’s organs in another person’s body, this gave him some comfort.

  31. ~M says:

    I am all about organ donation. Theoretically, I’m for tissue donation as well; however, I have told my husband in no uncertain terms I do not want to donate my tissue. The reason for this is the number of recent exposes I have read on the practice. Many of the companies that harvest tissue are for profit; the sell the idea to the public by showing burn victims etc. that have benefited from skin they collected. What they don’t publicize is the fact that they sell most of the tissue they collect and earn tens of thousands of dollars for each body they get. If I could be sure that the company collecting my tissue would use it for victims and not penile implants, I’d be all over that too.

    • GoGoGo says:

      Whoa! THat’s not something I’d heard about.

      It’s a little bit like the Locks of Love situation (which I believe Belle previously blogged about) taken to a whole new level…

      • Belle says:

        Locks of Love, where we charge cancer victims for wigs. It still makes me upset. Pantene Great Lengths, all the way.

  32. Emily says:

    I was diagnosed with MCTD (very similar to Lupus, but not quite as dangerous) when I was 18 years old. I am now 25 and doing well. I have annual organ tests (PFT, Echocardiogram, etc) and, thus far, they have all come back normal. My organs are doing a fabulous job of holding up (yay!) That being said, I have been told by my rheumatologist that I can expect to have organ failure later in life because I was diagnosed so very young. Most people are not diagnosed until they are in their 60’s so by the time their organs fail they are close to dying of old age anyways (not trying to sound callous, that’s just how my doctors explained it to me). My parents are fairly healthy but I have no siblings, so I worry about finding an organ match one day when/if I need it. All that to say, THANK YOU to those of you who are organ donors. One day the life you save may be mine!

  33. Heather B says:

    There are so many great posts already, but I just wanted to add my two cents. My dad died almost 5 years ago of a traumatic brain injury, and I have to say that agreeing to donate his organs was the best decision I ever made. He had actually signed up to have his body donated for medical research in the event of his death (he wasn’t aware you could donate organs later in life), but when the transplant team came in to ask the family if we wanted to donate his organs, there was no way I could say no. The only thing they actually transplanted was his liver, but I know out there someone is alive, even if my dad’s not. As hard as it is for him to be gone, knowing that someone else gets to live longer to be with their family makes me feel a little better. In addition, even if the organs can’t be transplanted, they can be used to further transplant research. I’ve always been an organ donor, but now I want everyone else to be too.

  34. Holly says:


    I love your blog and have been following it for at least two years. Seeing this post made me love your blog even more! I worked for an OPO for three years as a PR Coordinator. I did presentations about donation to every education, race, age, etc. population segment imaginable. The main reason people aren’t registered is due to a lack of education on the topic. Most people get their information from fictional TV shows like Grey’s Anatomy, so they don’t understand how the REAL process works. I spent most of my time and energy explaining the facts and fighting the myths.

    The top myths are people think they won’t be able to have an open casket (you can) or that the doctors won’t try as hard to save your life (they will).

    If anyone wants more information or has questions, I would be more than happy to help answer them. This is one of the most important decisions you can make in your life!

  35. Caring HCP says:

    I would like to mention something that might help put GoGoGo’s mother’s mind more at ease. In the majority of hospitals, specifically for ethical reasons, the transplant team is separate from the rest of all medical teams. It is the transplant team who pay attention to whether a patient is a viable donor, not the doctors and nurses taking care of the patient right then. Speaking as a health care professional. I have never known when one of my patients was a donor until the team has called.

    Only when a patient has been declared dead, neurologically or by cardiac death, is the transplant team notified.

    You should be able to find these policies on the UNOS website or at each facility.

  36. GoGoGo says:

    Thank you guys for sharing. That’s really valuable, HCP. A conversation I definitely need to come back to.

    • Caring HCP says:

      My pleasure! Also, the process of donating your body to science is a completely separate process than organ donation. You must contact a Deeded Body Program at a medical center/research facility that has one.

      Also, bone marrow harvesting is done throught peripheral IVs now, just like what you would get if you were in the hospital for fluids, etc. They rarely do the needle extractions from donors now-so no pain!! Less excuse to avoid registering too 😉

      Spotted those unanswered questions in the comments. Hope that helps!

  37. Jessica says:

    I am in a unique position here in that I have actually been in the room during a retrieval and transplantation. I work in an operating room and while I can tell you that a retrieval (we don’t call them harvests) is one of the most emotionally excruciating things I’ve ever done, I have never hesitated to list myself as a donor. The donor is treated with the utmost respect and dignity that we can give them – we want to know their name, their story. We thank them for the gift that they are giving and for how they are changing the lives of so many people. Being in a recipient transplant is truly remarkable too – to see the difference in the patient just from the time that they enter the operating room until they leave – it’s amazing. It is the most selfless thing you can ever do.

    My husband chooses not to be a donor – for the gross factor. And the whole idea just makes him uncomfortable. I hope that someday I am able to change his mind, but I respect his decision.

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