#stem cell donation

[penrosesun]

I got a laugh from the long collection of countries, as if people in them don't have their own problems and would give a shit about some rando

Hey frankly? This is an unhinged thing to say in response to an awareness post that was trying to encourage more people around the world to become bone marrow donors. I made that post because a personal friend of mine was dying, and since none of her relatives were a transplant match, her best hope of survival was matching with a stranger somewhere, anywhere, who had joined the registry. However, nothing I said was about her, except for the fact that she was one of the many people whose lives could be saved if more people got tested and registered as potential donors.

People from other parts of the world have their own problems? Yeah, you bet they do, and one of those problems is that every single year, tens of thousands of them are diagnosed with life-threatening disease like leukemia and sickle cell, for which a blood stem cell transplant is the best or only treatment. Of those people, 70% don’t have a fully matched donor in their family, and therefore rely on the registry. Thousands around the world die every year because they weren’t able to find a match, and the percentage of the population which is on the donor registry in most countries is in the single digits. I literally do not care where you live. If you are in a country which has a bone marrow donor registry, and if you are eligible to register but choose not to because, in addition to helping any of the many people in need in your own country, it could maybe also ~possibly~ help someone in the US who you “don’t give a shit about”? Then fuck you and the horse you rode in on. Cutting off your nose to spite your face doesn’t even begin to describe it – there are people dying right there in your country’s own hospitals, but perish the thought that you could help save them when you might accidentally be a match with someone elsewhere in the world, and maybe end up saving my friend instead. Fuck you. Truly and sincerely, fuck you.

Anyway, for anyone reading this who has even the vaguest semblance of a conscience or a moral heart:

If you’re not registered as a bone marrow donor and are medically eligible, this is your sign to get registered, wherever you live:

Become a Donor | WMDA

[avoliot]

I wish I could do the match thing but I can't drive and there's no real public transportation where I live, so I wouldn't be able to get to where the recipient was quickly enough.

Good question to raise! Let me talk a little bit more about the practicalities of donating stem cells and/or bone marrow (for our purposes the same thing):

1. The registry charity makes the arrangements. They deal with the hospitals and help you schedule appointments. Now, this one is going to vary by country, so check the website for your country, but at least in the UK and US the charity pays for travel and any overnight stays. I couldn't get to the local blood test appointment (the first thing you do after the match) because I didn't have a car - I explained this to my charity contact and they sent a nurse to my house. I don't want to speak for exactly what an organisation will or won't do, but I can't imagine it would be a dealbreaker if you said "I need to be reimbursed for a taxi to get from X to Y". Helping donors get to donations is what these organisations do.

2. It's not a sudden, urgent event. You won't be rung up and told 'we need you to donate tomorrow'. It takes place over weeks - they make sure you really are the best match, and then you have a checkup appointment, and then finally you have the donation. It's all discussed in advance with your representative from the charity, who makes all the bookings with the hospitals for you.

3. You won't meet the patient. They may not even be in your country - I'm in the UK, and my recipient was in America! The donation is flown to where it needs to go. You'll just be asked to go to the specialist hospital that the charity works with (in the UK I was offered London or Sheffield). You and the patient get actually limited information about each other at the time to protect both your privacy, but you are allowed to make contact later.

Generally the charities behind the registries exist to connect donors and patients, and within reason they'll do the heavy lifting to make that happen (mine even booked my train ticket for me, though I don't know if that's standard or just what made sense for my case.)

If anyone is reading all this and wondering what it's about, google 'stem cell registry'/'bone marrow registry' in your country :) I've also just posted on Instagram - @ everina_maxwell - about exactly what my donation experience was like if anyone's curious (happy to port this over if there's a demand).

[thequintessentialqueer]

HELLO ITS 2:47 AM AND I JUST SIGNED UP TO BE A POTENTIAL BONE MARROW AND STEM CELL DONOR BECAUSE I JUST REMEMBERED THAT MIXED RACE PEOPLE ARE STATISTICALLY THE LEAST LIKELY TO FIND A MATCH AND DOING THIS COULD POTENTIALLY SAVE MY LIFE OR THE LIFE OF SOMEONE WITH MY RACIAL HERITAGE. also if you're mixed race, or a person of colour living in a majority-white nation, you should do this too if you're eligible because people of colour are chronically underrepresented in bone marrow/stem cell donation, and disproportionately suffer/die as a result

[ukftm]

Do you know if I join (and therefore donate them) a list to donate my stem cells if I'm on T?

You can certainly register with Anthony Nolan if you wish to donate your stem cells and presumably the other UK registries will also allow you to register too.  You would, however, need to make them aware of your trans status.

~ Alex

[anthonyreadsthecards]

Jay’s Adventure

So this week was it, the week that I got to donate stem cells to someone with cancer. It was a bit rough in the beginning. Out flight had gotten cancelled leaving me and my husband ( mostly me) panicking about what to do next. I had already received several injections to up my stem cell count and I knew that the patient would be going through chemo the day of or before the donation. We had to get this done. Thankfully we were able to get a room at the hotel near the airport and caught a flight the next morning.

We had a driver pick us up at the hotel and take us straight to the clinic and we immediately got started. The nurses there told me that my white blood cell count was at a 71, which is really good. The highest they’ve seen is a 76. So I got strapped into the chair and had IVs in both arms and we got started. Normally the process is anywhere from six to eight hours but since my cell count was so high we only had to stay for four hours. 

Beginning in the chair wasn’t so bad but it was hard to get comfortable. Also with the injections that I had over the last week my body was really sore. Every few minutes or so my bones seemed to tighten and throb. Add to the fact that could barely shift in the chair and I wasn’t the happiest of campers. Thankfully I had my husband there. We read Harry Potter and he kept trying to keep my mind off the clock. 

I was able to fill a whole bag up with my stem cells and the nurses said that it looked great. Apparently it supposed to look a little bit like tomato soup and be a bit creamy looking. Some people’s look really watered down but thankfully that wasn’t the case for me. I know the shipped it off to the patient after we left and with how big my stem count was they will hopefully go into remission and be able to live a healthier life. I don’t know if I’ll get any details on that or not but if I do I’ll make sure to let you guys know they’re doing better.

Anyway we got home yesterday and although I’m still a tiny bit sore I am feeling so much better. I’m bummed that I have to be at work at 4 am tomorrow but I’m happy that all of this is over with. Although I wouldn’t mind doing it again. It’d be really cool if I was like a universal donor or something. 

Make sure to keep the patient in your thoughts. Positive vibes, prayers, and wishes are totally appreciated. I hope I get to hear from DKMS soon about that. 

But yeah I’m fine, just tired. They said I should be completely recovered from any residual soreness in about a week but I’m ok to go back to work. It’s nice to be home and great to see you nerds again. I’ll check my schedule tomorrow at work and maybe I can get some readings in soon. 

Take care everyone,

Jay 

[avoliot]

A question about bone marrow donation. I'm seeing a lot of stuff that says they're less likely to want you if you're over 35. Given that I am currently exactly 35, is it still worthwhile for me to register?

Another good question. From what I've seen, the registries have different age limits, so if the filtering lets you through, then I would take that as the intended result? If it doesn't, then thank you anyway for reading the post - the orgs behind the registries are all playing a big numbers game that we're trying to rig in everyone's favour, so honestly just knowing about the registry and normalising knowledge of it really helps.

Edit as I'm not sure I really answered the question: I think you're actually asking if you're likely to get a call before you are no longer of an age where you want to donate. I think the only answer to that is 'it depends' - for the registries, it seems to be an issue of how long you might be on the registry until you get a match (could be decades) and how likely you are at that point to have any related health complications yourself, which means ethically they won't risk doing an unnecessary medical procedure to you. There are definitely people older than 35 on the registry who signed up younger. My answer's still 'why not, if the filter lets you through' but I recognise there's just an enormous amount of chance here.

[thepiedsniper]

Register at home - Stem Cell Donors Australia

Each year, around 1,100 Aussie patients facing life-threatening blood cancers search for a stem cell donor. We urgently need more people to

PSA for Aussies: it's really really easy to join the stem cell donor registry. You just enter your details, get mailed an envelope with three swabs, swab your cheek meat, then send it back. Simple and free.

If you're one of the few people called to actually donate, then not only is that process also quite simple (basically a long blood/plasma donation) but you very literally directly save someone's life. It means your specific ethnicity is similar enough to someone in need, and if you hadn't donated, there honestly might not have been another donor close with a close enough genetic match. Your donation can go anywhere in the world, too!

Non-Aussies, I highly recommend looking into the process for your country 😊

[glitterglueandgooglyeyes]

Everyone should donate stem cells to help ppl with blood cancer because I'm sad that I can't do it (I have fibromyalgia)