Multi-pandemic survivalist ahead of the K-M curve. Effective altruist: AIDS baby → living kidney donor. Producer:
@iaoefilm
#UncommonlyDecent
. She/her.
The last time
@DonateLife
could mention HIV was Dec 1, 2021. Another "pro-transplant" org that can't even state scientific facts on the reg but they want you to believe they support all donations, that they support HOPE. Another org like
@nkf
that lets stigma win
#DonateLifeMonth
The
#HOPEAct
provides donation and transplant opportunities for people living with HIV. 200+ lifesaving transplants have been made possible because of the HOPE Act and the generosity of donors & donor families. 💙💚
#DonateLife
#WorldAidsDay2021
@unosnews
I said fuck stigma, didn't I?
38 yrs ago, someone donated blood that fixed my anemia of prematurity. I was born 12 wks early, 30% chance of survival. And in the longest of odds, I survived, acquiring HIV from that blood.
2.5 yrs ago, I donated a kidney to another person w HIV.
Today, after 10 months of waiting, I formally started the living liver donor evaluation process.
My kidney was changemaking. My blood sustains me.
My liver (according to my last Fibroscans in 2019) has great fibrosis and steatosis scores.
Let's try this.
Am I going to narrate the play-by-play? Nah, I already had a very public first donation.
I share this to say, it's a decision I have already thought about for 2 years at this point. There are living donors who have done this.
Getting started is the hardest part. I did it. 🥰
@yorkierussell05
It's super odd to me that people think I should be angry at the blood that gave me life. Definitely the stigma that pisses me off.
Preemie power. 👊
When I dumped my ex in 2003, he said to me, "You're gonna kill everyone you ever love," bc of my HIV status.
Yeah, real winner there (/s)
Bc of my HIV status, I gave life back (a kidney) to a 47 yo Black man whose identity idk, made medical history, & helped change GA law. 💅
Potential barriers to donation:
- margs and fried chicken were part of this other pandemic survival kit
- I am a short, puny person who donated a kidney through a 2" incision. Idk if my liver is large enough to divide safely.
Donation is an intent, evaluation isn't a commitment.
@DrSomedayMaybe
Idk where I saw this on Twitter, but it resonated w me -- "people get offended when you aren't ashamed of things that they were taught to be ashamed of. They resent you for not caring what everybody thinks."
^helps me to "consider the source," which is my main coping strategy.
38 years of living with HIV today. My late friends deserved the same longevity. 💔
In their honor and mine, still gonna make the bigots mad. A swimsuit arrives today that shall be evidence that I'm definitely still 🔥 even if I am living with HIV and perimenopausal.
How I spent the last 5 yrs: registering Georgians w HIV to vote, defending the ACA that got them access to health insurance, enrolling them in the Marketplace to have access to health care, & trying to overturn Georgia's law that makes HIV a crime....
Yeah I cried this morning.
People love to explain HIV to me like I'm still the 8 year old kid when I was diagnosed instead of the 39 year old woman who has been in charge of her care since she was 18 and became the country's first living kidney donor and is co-authoring that paper.
Are you for real?
@DrSomedayMaybe
Idk where I saw this on Twitter, but it resonated w me -- "people get offended when you aren't ashamed of things that they were taught to be ashamed of. They resent you for not caring what everybody thinks."
^helps me to "consider the source," which is my main coping strategy.
I don't understand why it's so difficult for people to just write article titles like, "Heart Or Lung Transplant Outcomes in Recipients Living with HIV." No meaning is lost here, just stigmatizing language. When I get the flu, I don't call myself "flu-infected."
#LanguageMatters
It is finally out . HEART OR LUNG TRANSPLANT OUTCOMES IN HIV-INFECTED RECIPIENTS - The Journal of Heart and Lung Transplantation
#HIVtxp
@AST_IDCOP
I'm HIV+. Yes, I have been a registered donor since Jan 2016. The HIV Organ Policy Equity Act of 2013 legalized the transplantation of organs from donors diagnosed with HIV into recipients living with HIV. This helps everyone waiting for the gift of more time, HIV+ or -.
Things weren't all bad in 2019:
- Iguanas were reintroduced to Galápagos island after 184 years
- Two men may have been cured of HIV
- NASA completed its first all-female astronaut spacewalk
- And many more positive milestones
@drzigel
@fuzzymittens
All donations count! There've been >220 transplants from deceased donors with HIV to other people living with HIV since 2016, boosting all people on the waitlist, regardless of HIV status.
For real, y'all gotta stop following her. In addition, see my pinned tweet. If we're done with abusers, guess what, she is one.
#medtwitter
, she's no better than gu, just stop.
NB: It has been legal for ten years for people diagnosed with HIV to donate organs to other people living with HIV. 431 organ transplants of this type have occurred since 2016. Invite y'all to get with the times. 💙💚
It is not separate. It can’t live without a uterus. Separate would mean you could drop the blastocyst on the street and someone could give it a bottle.
39 years ago today, some scrawny ass 2½lb, 28-weeker was born. Had a grade III intraventricular hemorrhage, a collapsed lung, strabismus. 13 LPs + a blood transfusion later, ended up with a hitchhiker pandemic retrovirus. Later changed medicine and state law.
Oh, IT ME. 🥳🎂🦄👋
"You just haven't found the right person."
Oh, I have. It's me, I am the best for me. I don't operate from a lack of something in my life (except dopamine) and think a person is supposed to complete me.
Y'all wish you had this self-contentment. I highly recommend finding it.
So in 2010, the United States lifted the travel ban that barred entry into the country by people living with HIV because the government realized that such bans were not based in the tenets of HIV prevention as science knows it.
What the fuck is this? (h/t
@GilmerHealthLaw
)
Once I figured out starting in 2005 that being single was my power, oh y'all cannot get me to go back.* My heart is too big to have a worldview dictated by allocisheteronormativity.
*I will consider it at age 98, or whenever I am done doing what needs done.
@aNurseDad
@AfibWithRiver
I was 8 when I was diagnosed. Thankfully, I didn't know there was anything to be ashamed of, so I wasn't. ♥️
Now 38, pffffftttt these still ignorant people wish I had shame. No, the shame is on them.
The people who belittle
@AOC
for being a former waitress are the same faulting
@ewarren
for billing out at $675/hr. So how much exactly should world-changing women make?
Today is the 31st anniv of my first HIV test. It would be another 8 days before I got my HIV diagnosis at the age of 8. I grew up on Tricare and had to travel 2 hours each way to see my pedsHIV doc. I was called a waste of taxpayer dollars, trained in epi, and live to see this 👏
As we recognize
#WorldAIDSDay
and the progress made, I am proud of the
@usphscc
for changing its medical standards to accept future applicants living with chronic hepatitis B and HIV. Learn more here:
The 90-90-90, I'd like to see:
-90% of people living with HIV are paid a living wage through employment
-90% of people living with HIV are stably housed
-90% of HIV criminalization laws are modernized to current science
And just maybe you'll see that other 90-90-90
#WAD2019
@cadiulus
@DGlaucomflecken
As someone living with HIV, I have a 15:00 race pace on marathons. I volunteer as bear chow. I may not be competent at running, but, contrary to popular perception, at least I'm immunocompetent. 😆
@NBL2006
@yorkierussell05
I think it's in FDA IVF regs (2006) that neither sperm, egg, or surrogate have HIV or Hep, but surely trying to get medical care hurts owing to stigma, too. It was '97 (14 yrs post-transfusion) before I was tested for HepC.
A lot of the regs need harmonization w current science.
@redshoes721
@emmatsalageek
I was raised Roman Catholic am now atheist, HIV+ 37 years, and donated a kidney last year to another person living with HIV. Your dad deserved better. As did my friends whose end of life/burial wishes were not respected bc of family's religious views.💔
Happy 4th kidney divorce anniv to me, & happy 4th transplantaversary to my also medical history-making recipient. Hope the journey was smoother.
No regrets on the donation part, none. The research part, uh, they can do better. HIV has changed & so should we.
#HOPEtransplants
.
"We have to stop acting like catching [coronavirus] is some kind of personal moral failure."
Y'all, it's been 40 years of HIV and you all still haven't gotten there yet with that pandemic virus.
But okay, sure, this one is different.
I updated my deceased donor registration semi-recently as the scope of organs for HIV-to-HIV transplants increases (currently livers & kidneys; forthcoming: hearts & lungs) so someday when I don't need them anymore, the party can go on. 💚💙
Today I’m 8 months post transplant. In this time I’ve celebrated our twins bday, spent time with Wyatt, enjoyed date night with my wife, and so much more. None of this would be possible without my donor. My life is more amazing than I could have imagined. 💙♻️ 💚
#DonateLife
I cringe when
@RepAOC
asks whether Truvada for PrEP is the only drug known to prevent the transmission of HIV.
The answer is no. People w HIV who have access to antiretroviral treatment that keeps their viral load undetectable for >6mos cannot transmit HIV to others.
An estimated 32.0 million people have died from AIDS-related illnesses from the HIV epidemic's inception through the end of 2018.
So no, life didn't just go on. 😠
INGRAHAM: We don't have a vaccine for SARS or HIV. Life went on, right?
FAUCI: HIV/AIDS is very different. We have effective treatments. And SARS went away. So your comparison is misleading.
I: But coronavirus could disappear too.
F: These kind of viruses don't just disappear.
I really do like doctors, but some of y'all have this patronizing, gatekeeping, savior, MDeity complex that my T-cells will not get down with.
I am a patient, but also a highly qualified skilled human in my own right. Your privilege will be checked.
The first person in the U.S. living with HIV donated a kidney to another person with HIV. Please consider making a donation to help pay for Nina's expenses not covered by insurance. Every little bit helps, and please share widely!
@nkf
@HopkinsMedicine
My follower count seems to drop when I tweet about asexuality, aromanticism, atheism, HIV, being childfree, being a brown woman, LGBTQ topics...
Toodles, unevolved beings. My existence is something I believe in, clearly.
Saying no to people who won't pay me for my time has been pretty great.
"We don't have a budget to compensate you."
And yet, YOU still manage to get funding to take up MY time. Your mag/blog/etc. still gets published.
I have donated enough, y'all.
@RyanMarino
*nods head in original intended kidney transplant recipient died four months before I could donate*
Today, I got the White House's attention.
Because of them, we keep going.
A disabled friend of mine who is a single parent called me to tell me Georgia is a terrible place for disabled people. She's an attorney.
(Don't I know it...)
Q: Is there a state that doesn't have snow, is affordable, that is decent to people with physical disabilities?
I'm not course correcting for funsies. I am course correcting because I know when I see something wrong, and how it harms patients.
Instead of mansplaining a pandemic I have also been a part of my entire life, learn to take a meeting
@CarlosdelRio7
.
@RyanMarino
I was responsible for a research group submitting an IRB amendment bc they asked potential participants with HIV, "Are you HIV-infected?," compared to a survey screener aimed at assumedly HIV-negative folks, "Have you been diagnosed with HIV, hepatitis B, or hepatitis C?" 🤔
It's txp centers & organ procurement organizations' job to decide what's transplantable. Your registration is a willingness to donate, not a commitment.
Txp candidates make decisions w txp professionals about transplantation.
Sincerely,
A registered HIV+ living donor.
This roach/virus analogy strikes again. It's a terrible analogy. Quit using it to describe illness. It is stigmatizing people who are sick. Do better. Find more appropriate
#healthcomm
messaging.
A dr treating coronavirus victims in hong kong just told me he doesn't think the world is aware of the dangers. Thinks, based on what he’s seen, the virus is far more widespread than being reported. “If you see one cockroach, you know there are more”
How romantically lovable or desirable you are shouldn't play such a large role in how much resources, support, and connection you get as an adult.
*that's* the injustice.
*that's* what we should focus on.
So much of HIV care could be improved if expert medical professionals would care enough to evaluate the knowledge and health communication expertise of their frontline clinicians. For years, Atlanta's HIV patients have lamented stigmatizing treatment.
@Tinu
40 years of people referring to my body as a vector, weapon, etc. did zero to stem HIV transmissions.
This isn't the first pandemic in which those in power politicized public health to achieve their racist, classist ends.
Dear person who has my left kidney,
Happy New Year off dialysis. 🎉 They say hindsight is 20/20, but in 2020, we will help move science & society fwd... all bc you accepted me as your donor.
Thank you for that privilege.
-Me
#donatelife
#shareyourspare
#HOPEtransplants
.
@Cannonfor58
has just informed me that we have passed legislation to modernize Georgia's HIV criminalization laws.
Not a joke, and I will proceed to uglycry.
I want to see the day that living organ donation is celebrated as much as we celebrate babies.
"I had a baby"
Everyone: *squee*
"I want to donate a piece of my body to someone to give them their life back."
Everyone: Omg-no why? Don't do it. You don't even know them.
"There is such a pressure on people w chronic health conditions & disabilities to be inspiring & extraordinary. Sometimes just getting out of bed in the morning is an extraordinary achievement. . . . Society needs to change, not you!"
*nods* *needs a nap*
@saltylungs
I was a more stoic person pre-donation, side effect of military brat life. I blame altered anatomy for lowered threshold for onion-cutting stories, such as the one you have shared.
Also, bc my orig intended recipient died, I like to hear stories I don't get to from him. 💙💚♻️
I wish ppl were more specific when they repeat the rhetoric of "end HIV," "end AIDS," or "end the epidemic."
What you mean is: ending new HIV transmissions & finding a cure.
Because the end of me & people like me (aka our deaths) will also achieve your fascist sounding aims.
From being born 12 weeks early, requiring blood to save my life, acquiring HIV in the process, to:
- donating an organ while diagnosed with HIV, 35 years later
and
- today marking 12 weeks of participation as part of a phase III coronavirus vaccine trial
Helluva job, science.
Day 1,460 living with one kidney.
Day 14,478 living with HIV.
I went from a 30% chance of survival to a very decent one, so much so, that I shared my excess. But that it was easy, no problem, or someone else didn't die because of it is untrue bc ~40 years of stigma is a lot.
As much as I hate to be that person who says "all people living with HIV," well...
^this one likes to hide her rilpivirine in a doughnut, is a marathoner, and donated a kidney. Mark can take his fork and shove it.
Persons born with HIV live healthy, normal lives because of pharmaceuticals.
Childhood lymphoma is highly curable with prescription medications.
I can run for miles in the freezing cold despite having asthma because of a couple pills and an inhaler.
Mark Hyman is despicable.
@jillosopher
Proximity to menopause (yay premature aging attributable to HIV) got my living organ donor biologic clock ticking, not the uterine one 😅.
Not that menopause is a contraindication to donation, but the body changes lots, and so would like to do it before then.
Happy Doctors Day only to the doctors who don't think my illness should be criminalized and who are rooting for my right kidney's survival bc you don't do that stigmatizing HIV BS. 😊
The hill am dying on today:
Surgically consenting a patient to a research procedure an hour before procedure time is coercive. I know y'all love to do it, and we consent anyway, but it's hella weird.
I don't know why that seems hard for researchers to imagine.
<-- Who has two kidneys and just today got her donor approval letter to get rid of one?! Meeeeee.
So when I said 7 mos ago, "I think I would make a great [living kidney] donor candidate because..."
I SAID WHAT I SAID
#shareyourspare
#donatelife
:) :)
On March 25, Nina Martinez had a healthy kidney removed at The Johns Hopkins Hospital, becoming the United States’ first person living with HIV to donate a kidney.
@mattbc
My left kidney came out of the surgical field in a plastic bag. Emptied into a bowl lined in plastic, filled with ice, to be prepped for transplantation so it could... guess... SAVE A LIFE.
Let me tell you about the time Matt Cortland, after insisting what I was talking about wasn't what he was talking about decided to drop me $10 for a concept he realized he got from me for a byline in the Independent... about brown children. 🤷♀️
Here's the spoiler: People in so-called COVID "advocacy" discourse and a bunch of long COVID "advocates" do not know a damn person w HIV they can run their shitty comparisons and (incorrect) recollections of history by and are uh, not surprisingly, serophobic.
They cherry-pick.