Nisha
808 posts

Nisha
@NishaTri04
Rare disease advocate & company culture enthusiast. 2x clinical trial participant. @patientsrising Ambassador. CMS Level 1 🍷
California, USA Katılım Haziran 2009
351 Takip Edilen199 Takipçiler

If you live in the San Francisco Bay Area, please consider supporting the SF @plungeforelodie so that we can raise funds for @EBResearch !! I’ve put the link to the SF Team Page in the comments, where you can join or donate to the team. From patients like me, thank you 🙏🏽
Epidermolysis Bullosa News@EpiBullosaNews
The 9th annual Plunge for Elodie expands this year with a $1M matching gift to fund a cure for epidermolysis bullosa by 2030. epidermolysisbullosanews.com/news/1m-matchi…
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My heart is broken💔: As friends & family know, my wife was pregnant with our 2nd child, & about to begin her 2nd trimester. A few days ago she had severe pains, & bleeding, and had to go to the emergency room. There, it was discovered that our baby no longer had a heartbeat. Devastated doesn't come close to what that feels like.
Unfortunately for people like us, because of the current laws in the state of Texas, that was only the beginning of this nightmare. Jess (my wife) had an "incomplete miscarriage", and what needed to happen, what was best for HER, and her health, was to terminate the pregnancy, and get the baby out.
The doctor gave her a medication that would move this process along, and sent her home. Where, apparently we would be handling it ourselves. We were told it might take a couple of attempts before it worked.
I'll let you decide how you feel about that.
After a long, painful night of the equivalent of early labor, the baby was still with her. So, we went back to the Emergency Center to get the 2nd dose. A new doctor was on call. He was an older man. You could hear him in the hallway as he said, "I'm not giving her a pill so she can go home and have an ab*rtion!". Being well aware that our baby no longer had a heartbeat. Then, he came into the room to say, and I quote: "Considering the current stance. I'm not going to prescribe you this pill". Then, just sent us on our way.
The "CURRENT STANCE"?! Did he really just say that?!
No one should ever have to hear their wife say: "Get this dead baby out of me!".
Can you even imagine how that must feel?
The pain, and the bleeding continued. So, we decided to go to another hospital, about an hour away. There was a female doctor on call there, and we thought we might have better luck.
I should probably mention, the procedure to get the baby out is called a D & C. It's scary, & traumatizing, but sometimes necessary in situations like ours. Especially in emergency circumstances.
So we get to the next hospital. They take Jess in, ask her a bunch of questions, do a new scan... confirm that the baby is still there, with no heartbeat, and then disappear... for hours. Only to come back in and keep asking the same questions over and over. It's becoming clear that they're primary concern is NOT my wife's health. Instead, they seem to be worried about the legalities involved.
So, they decide it is not "enough of an emergency" to perform the D & C.
They do, however, prescribe another, stronger, final dose of the medication for us to try again... at home.
So, we go home to try again. Another long day/night of early labor pains. Only to discover my wife UNCONSCIOUS in the bathroom. Having to pick my wife's cold, limp body off of that bathroom floor, not sure if I was about to lose her, is something I will NEVER forget.
She had to be rushed to the hospital.
By this point she had lost so much blood, and bodily fluid, her body gave out.
They were able to stabilize her, give her the fluids she needed, and we came back home yesterday afternoon. We were also able to confirm that our baby was no longer with her.
Now, not only do we have to live with the loss of our baby... we have to live with the nightmare of what we just experienced because of political and religious beliefs. MY WIFE'S HEALTH SHOULD HAVE COME FIRST. PERIOD!
God knows what mental and emotional damage this has done.
If you consider yourself a staunch "pro-lifer" ... 1) You've never been through what we just went through, and 2) You should take a long, hard look in the mirror and reevaluate your reasons for supporting such a cold, barbaric, ignorant point of view.
It's not that black & white, and it's never going to be.
If you think your "Pray To End Ab*rtion" sign in your yard is "Christian", I suggest you revisit the teachings of Jesus and try again. If you support these laws that make ab*rtion illegal, and result in people being put through what we just were, you should be ashamed of yourself. I've never been so angry, or heartbroken... and the devastation I'm feeling must pale in comparison to what my poor wife is feeling.

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Biotech companies or CRO absolutely should hear the patient perspective when designing #clinicaltrials. However, patients need to be compensated for their time and insights. At the very least, do not charge them to attend a conference! #patientadvocacy
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Nisha retweetledi

In the past 8 years, my life has involved an intense cancer battle, the death of our daughter during a global pandemic, the travails of being in a family full of untreated addicts and mentally ill relations, and my town burning down.
All while bearing witness to our democracy under attack and wondering what kind of future our surviving children will have. I’m tired.
If I signed up for this, I’d like to renegotiate my contract please! #TEAMMOLLY

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@Tellthetruth122 @washingtonpost Is that what they have all over Europe and Australia, where this virtually never happens?
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@washingtonpost It’s not that complicated ..you put up a fence around the school ….you have one point of entry and exit with an armed security guard.
but they don’t want to solve the problem they want to take your guns away .
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Natalie Rupnow died of an apparent self-inflicted gunshot wound after police say she opened fire in a study hall classroom at Abundant Life Christian School. The 15-year-old had a turbulent home life, according to court records. wapo.st/3BmbJ80
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Nisha retweetledi

@aliciaandrz This is timely - I’m about to fire my ob-gyn, in what will end up being a far less literary fashion.
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Nisha retweetledi

Jesus fucking Christ. We are not aborting children in the 9th month or executing them after. Unless you count school shootings. #Debate2024
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Horrendous experience w/ @qatarairways SA. Checked in online hours before departure. They delayed flight. Arrived 1h 30m before departure & they REFUSED to check my bags & suggested I fly without luggage. I fear the workers wanted a BRIBE. Disgusted & upset #crookairline #crime
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@qrsupport We have, once again! But I won’t stop posting until I get my refund
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@NishaTri04 @NishaTri04 Hi, Nisha. We empathize with the unfortunate experience you've had. For further assistance, kindly send us a direct message with the details. Thank you.
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@qrsupport you have the WORST customer service known to man. I’ll never forget when you denied my husband boarding on unjustified grounds since you were overbooked. Refund us now or I’ll keep posting this
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@granolalawyer What an entitled jackass. I’m sorry you had to deal with that. The bigger question is: why is HE like this?
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