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I started reporting on the dearth of reproductive health care. Then I had my own emergency.

Texas Tribune journalist Jayme Lozano Carver has written about health care for years. Most recently, she reported on how little access there is for women and new moms in the Texas Panhandle.

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Tick. Tick. Tick.

The clock in my OB-GYN’s office was taunting me.

Any moment, I thought, this could kill me.

For more than a year, I knew something was wrong. Crippling migraines radiated through my skull, I would get dizzy standing up, and I felt like I was being ripped apart from the inside during my period. Every month, my husband offered to take me to the emergency room after I doubled over in pain. I usually objected, convinced I’d be brushed off because, well, periods are supposed to hurt.

As it turns out, periods aren’t supposed to hurt that bad. A cyst the size of a peach was growing in my ovary, and they found an even bigger fibroid was on the back of my uterus. An urgent care doctor said I had to find an OB-GYN. I likely needed a hysterectomy, she said.

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“You’re done having kids, right?” She asked.

I had told her 10 minutes before that I didn’t have any children yet.

I’m 33. My husband, Johnathon, and I married in 2022, after five years together. The doctor’s words cut especially deep because this was the year we wanted to start a family.

My body was frozen, but my mind was racing. What does this mean? Am I in danger? She said hysterectomy. I have to be in danger.

That was January. Yesterday, we published the second story in a series dedicated to maternal health in the Texas Panhandle , in partnership with the Journalism and Women Symposium. My reporting paints a bleak picture for women who live north of me in and around Amarillo, where health care is difficult to come by.

The same can be said around Lubbock in the South Plains, where I’ve always called home. As I was working on that project, I was on the brink of an emergency with my own reproductive health.

My experience showed me a little bit of everything wrong with our health care system, including the high costs and how hard it is to see a doctor. Conditions like uterine fibroids, tumors that grow in the uterus, are common — 26 million women in the U.S. are affected by them, women of color more. And up to 77% of women develop fibroids during their childbearing years. And yet, many go undiagnosed because of a lack of public education and research.

The rest of that day, my phone was hot from calling nearly every OB-GYN in Lubbock. I told them how big both masses were and cried while I waited on hold. Some weren’t accepting new patients, some said it wasn’t severe enough, and others had waitlists as far out as 2025.

As a Texas city debates an abortion travel ban, maternal care is scarce in nearby rural counties

June 14, 2024

I didn’t have that kind of time.

I finally found an OB-GYN’s nurse who could see me, then refer me to the doctor if needed. It was an extra step, but I just wanted to get in the door. From the time I was diagnosed to when I met my new doctor, a month passed; it was the end of February. Every day felt like a day too long.

She got straight to the point — the cyst was dangerous. At any moment, it could flip and twist my ovary, which could make me lose the ovary or, in rare cases, cause infertility. It had to be removed.

Then there was the fibroid. It was closer to the size of a grapefruit but I could live with it. If we took the cyst but left the fibroid, there would be no guarantee that my pain would go away. This option meant a more extensive abdominal surgery, paired with a longer and harder recovery.

I booked the surgery to remove both. My doctor had an opening six weeks away — an eternity handcuffed to my cyst. Intrusive thoughts swirled around my head: What if the cyst flipped? What if it popped? My internet search history reflected my anxiety: “Can a cyst make my ovary explode?”

Words like “common,” “harmless,” and “without treatment” weighed heavily. My assailants were huge. I was part of the 8% of women who develop large cysts that needed treatment.

I won a lottery I never wanted to play.

I scrolled social media endlessly for other women’s experiences. Some women with more fibroids or bigger cysts than mine commented that they couldn’t afford their surgeries yet. It gave me a small taste of survivor’s guilt. For so many people, medical care is a matter of debt or health, and some don’t have the option to choose. I could split the $2,600 I had to pay upfront between two credit cards, and suffer with interest later.

A few days after scheduling, my doctor’s office called and said my surgery was moved up to the following week. Someone else had canceled, and I was their first call.

I wasn’t even close to coming to terms with my body betraying me. And I was frustrated with myself. I have reported on health care for years, and yet I fell into the same trap as so many of the people I’ve written about.

An urgent health issue caused by ignoring routine care? Check. A long wait because patients outnumber providers in my area? Check. Sticker shock from what it would cost to return to a clean bill of health? Check.

It was a cycle I couldn’t escape. I was stuck in anger, close to depression, but far from acceptance.

By the morning of my surgery, some of my anger was replaced with resolve. I checked in, begrudgingly paid $100 toward my growing hospital bill, and tried to stay calm while my husband, parents and sister distracted me. My doctor stopped by my room to remind me that she’s done this hundreds of times. She was confident. I was terrified.

Bright bunnies for Easter led the way along the walls of the hall toward the surgery center. I wondered if it was too late to turn back now.

Then, as my eyelids grew heavier from the anesthesia, I finally felt calm.

I woke up a few hours later. A little blue pillow, sewn by a local church, was on my midsection. I moved it and felt the bandages covering the seven-inch cut along the bottom of my stomach.

The surgery went as planned. She got everything, didn’t find any more growths, and took photos in case I wanted to see, which I did. The fibroid looked like an anatomical heart. The cyst that I was so afraid of, was like a water balloon. Nurses warned me I would feel sore as the shots to numb my stomach muscles wore off.

I told myself to breathe. It’s over.

But, the truth is I’m not sure if this is ever actually going to be over. Depression hit when I had my first period post-surgery — it was the most painful in my life. My body ached any time I got up, walked around, or even coughed. I wondered if the surgery and all the pain from recovering was even going to be worth it.

Then there’s the scar. It’s different from the one on my arm when I scraped it against my car’s trunk as a teenager. It’s not like a scratch from my cat. It’s dark and sensitive to the touch. I see it and relive the whole experience all over again.

Months later, it’s a good reminder of how I survived something that could have destroyed me.

I think back to the eight weeks between my diagnosis and my surgery, and I’m proud of how I managed to keep it together and write and prepare, knowing what was growing inside me. My friends, who know my love for horror movies, joke that I’m a real scream queen now, since I’ve been sliced open and lived to talk about it.

The price of everything does frustrate me when I look back on it. Some charges included $37 for inserting the needle in my vein for a blood sample or $11 per ibuprofen pill. After the first 30 minutes of my surgery, I was charged for every minute I was on the operating table. In the recovery room, I was charged per minute after the first 15 minutes while the anesthesia wore off. Before insurance, the surgery was nearly $31,000. My share after insurance was nearly $5,000.

There is something surreal about knowing the faults of our health care system first-hand now, instead of through collecting other people’s stories. I still feel random rushes of pain, though not nearly as powerful as they were before. I’ll probably always be worried that any little sign of change in my body, like my hair not growing or the return of my dizzy spells, means something is growing back.

All I can do is go to my annual screenings and stay ahead of it.

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Information about the authors

Jayme Lozano Carver

Reporter/south plains and panhandle.

[email protected]

@jayme_lozano

Learn about The Texas Tribune’s policies , including our partnership with The Trust Project to increase transparency in news.

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Blood tests for Alzheimer’s may be coming to your doctor’s office. Here’s what to know

FILE - A doctor points to PET scan results that are part of a study on Alzheimer’s disease at Georgetown University Hospital, on Tuesday, May 19, 2015, in Washington. (AP Photo/Evan Vucci, File)

• Copy Link copied

WASHINGTON (AP) — New blood tests could help doctors diagnose Alzheimer’s disease faster and more accurately, researchers reported Sunday – but some appear to work far better than others.

It’s tricky to tell if memory problems are caused by Alzheimer’s. That requires confirming one of the disease’s hallmark signs — buildup of a sticky protein called beta-amyloid — with a hard-to-get brain scan or uncomfortable spinal tap. Many patients instead are diagnosed based on symptoms and cognitive exams.

Labs have begun offering a variety of tests that can detect certain signs of Alzheimer’s in blood. Scientists are excited by their potential but the tests aren’t widely used yet because there’s little data to guide doctors about which kind to order and when. The U.S. Food and Drug Administration hasn’t formally approved any of them and there’s little insurance coverage.

“What tests can we trust?” asked Dr. Suzanne Schindler, a neurologist at Washington University in St. Louis who’s part of a research project examining that. While some are very accurate, “other tests are not much better than a flip of a coin.”

Demand for earlier Alzheimer’s diagnosis is increasing

More than 6 million people in the United States and millions more around the world have Alzheimer’s, the most common form of dementia. Its telltale “biomarkers” are brain-clogging amyloid plaques and abnormal tau protein that leads to neuron-killing tangles.

This article is part of AP’s Be Well coverage, focusing on wellness, fitness, diet and mental health. Read more Be Well.

New drugs, Leqembi and Kisunla, can modestly slow worsening symptoms by removing gunky amyloid from the brain. But they only work in the earliest stages of Alzheimer’s and proving patients qualify in time can be difficult. Measuring amyloid in spinal fluid is invasive. A special PET scan to spot plaques is costly and getting an appointment can take months.

Even specialists can struggle to tell if Alzheimer’s or something else is to blame for a patient’s symptoms.

“I have patients not infrequently who I am convinced have Alzheimer’s disease and I do testing and it’s negative,” Schindler said.

New study suggests blood tests for Alzheimer’s can be simpler and faster

Blood tests so far have been used mostly in carefully controlled research settings. But a new study of about 1,200 patients in Sweden shows they also can work in the real-world bustle of doctors’ offices — especially primary care doctors who see far more people with memory problems than specialists but have fewer tools to evaluate them.

In the study, patients who visited either a primary care doctor or a specialist for memory complaints got an initial diagnosis using traditional exams, gave blood for testing and were sent for a confirmatory spinal tap or brain scan.

Blood testing was far more accurate, Lund University researchers reported Sunday at the Alzheimer’s Association International Conference in Philadelphia. The primary care doctors’ initial diagnosis was 61% accurate and the specialists’ 73% — but the blood test was 91% accurate, according to the findings, which also were published in the Journal of the American Medical Association.

Which blood tests for Alzheimer’s work best?

There’s almost “a wild West” in the variety being offered, said Dr. John Hsiao of the National Institute on Aging. They measure different biomarkers, in different ways.

Doctors and researchers should only use blood tests proven to have a greater than 90% accuracy rate, said Alzheimer’s Association chief science officer Maria Carrillo.

Today’s tests most likely to meet that benchmark measure what’s called p-tau217, Carrillo and Hsiao agreed. Schindler helped lead an unusual direct comparison of several kinds of blood tests, funded by the Foundation for the National Institutes of Health, that came to the same conclusion.

That type of test measures a form of tau that correlates with how much plaque buildup someone has, Schindler explained. A high level signals a strong likelihood the person has Alzheimer’s while a low level indicates that’s probably not the cause of memory loss.

Several companies are developing p-tau217 tests including ALZpath Inc., Roche, Eli Lilly and C2N Diagnostics, which supplied the version used in the Swedish study.

Who should use blood tests for Alzheimer’s?

Only doctors can order them from labs. The Alzheimer’s Association is working on guidelines and several companies plan to seek FDA approval, which would clarify proper use.

For now, Carrillo said doctors should use blood testing only in people with memory problems, after checking the accuracy of the type they order.

Especially for primary care physicians, “it really has great potential to help them in sorting out who to give a reassuring message and who to send on to memory specialists,” said Dr. Sebastian Palmqvist of Lund University, who led the Swedish study with Lund’s Dr. Oskar Hansson.

The tests aren’t yet for people who don’t have symptoms but worry about Alzheimer’s in the family — unless it’s part of enrollment in research studies, Schindler stressed.

That’s partly because amyloid buildup can begin two decades before the first sign of memory problems, and so far there are no preventive steps other than basic advice to eat healthy, exercise and get enough sleep. But there are studies underway testing possible therapies for people at high risk of Alzheimer’s, and some include blood testing.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

Alzheimer's Disease

Blood tests for alzheimer's may be coming to your doctor's office. here's what to know.

WASHINGTON -- New blood tests could help doctors diagnose Alzheimer's disease faster and more accurately, researchers reported Sunday - but some appear to work far better than others.

It's tricky to tell if memory problems are caused by Alzheimer's. That requires confirming one of the disease's hallmark signs - buildup of a sticky protein called beta-amyloid - with a hard-to-get brain scan or uncomfortable spinal tap. Many patients instead are diagnosed based on symptoms and cognitive exams.

Labs have begun offering a variety of tests that can detect certain signs of Alzheimer's in blood. Scientists are excited by their potential but the tests aren't widely used yet because there's little data to guide doctors about which kind to order and when. The U.S. Food and Drug Administration hasn't formally approved any of them and there's little insurance coverage.

"What tests can we trust?" asked Dr. Suzanne Schindler, a neurologist at Washington University in St. Louis who's part of a research project examining that. While some are very accurate, "other tests are not much better than a flip of a coin."

Demand for earlier Alzheimer's diagnosis is increasing More than 6 million people in the United States and millions more around the world have Alzheimer's, the most common form of dementia. Its telltale "biomarkers" are brain-clogging amyloid plaques and abnormal tau protein that leads to neuron-killing tangles.

New drugs, Leqembi and Kisunla, can modestly slow worsening symptoms by removing gunky amyloid from the brain. But they only work in the earliest stages of Alzheimer's and proving patients qualify in time can be difficult. Measuring amyloid in spinal fluid is invasive. A special PET scan to spot plaques is costly and getting an appointment can take months.

Even specialists can struggle to tell if Alzheimer's or something else is to blame for a patient's symptoms.

"I have patients not infrequently who I am convinced have Alzheimer's disease and I do testing and it's negative," Schindler said.

New study suggests blood tests for Alzheimer's can be simpler and faster

lood tests so far have been used mostly in carefully controlled research settings. But a new study of about 1,200 patients in Sweden shows they also can work in the real-world bustle of doctors' offices - especially primary care doctors who see far more people with memory problems than specialists but have fewer tools to evaluate them.

In the study, patients who visited either a primary care doctor or a specialist for memory complaints got an initial diagnosis using traditional exams, gave blood for testing and were sent for a confirmatory spinal tap or brain scan.

Blood testing was far more accurate, Lund University researchers reported Sunday at the Alzheimer's Association International Conference in Philadelphia. The primary care doctors' initial diagnosis was 61% accurate and the specialists' 73% - but the blood test was 91% accurate, according to the findings, which also were published in the Journal of the American Medical Association.

Which blood tests for Alzheimer's work best?

here's almost "a wild West" in the variety being offered, said Dr. John Hsiao of the National Institute on Aging. They measure different biomarkers, in different ways.

Doctors and researchers should only use blood tests proven to have a greater than 90% accuracy rate, said Alzheimer's Association chief science officer Maria Carrillo.

Today's tests most likely to meet that benchmark measure what's called p-tau217, Carrillo and Hsiao agreed. Schindler helped lead an unusual direct comparison of several kinds of blood tests, funded by the Foundation for the National Institutes of Health, that came to the same conclusion.

That type of test measures a form of tau that correlates with how much plaque buildup someone has, Schindler explained. A high level signals a strong likelihood the person has Alzheimer's while a low level indicates that's probably not the cause of memory loss.

Several companies are developing p-tau217 tests including ALZpath Inc., Roche, Eli Lilly and C2N Diagnostics, which supplied the version used in the Swedish study.

Who should use blood tests for Alzheimer's?

nly doctors can order them from labs. The Alzheimer's Association is working on guidelines and several companies plan to seek FDA approval, which would clarify proper use.

For now, Carrillo said doctors should use blood testing only in people with memory problems, after checking the accuracy of the type they order.

Especially for primary care physicians, "it really has great potential to help them in sorting out who to give a reassuring message and who to send on to memory specialists," said Dr. Sebastian Palmqvist of Lund University, who led the Swedish study with Lund's Dr. Oskar Hansson.

The tests aren't yet for people who don't have symptoms but worry about Alzheimer's in the family - unless it's part of enrollment in research studies, Schindler stressed.

That's partly because amyloid buildup can begin two decades before the first sign of memory problems, and so far there are no preventive steps other than basic advice to eat healthy, exercise and get enough sleep. But there are studies underway testing possible therapies for people at high risk of Alzheimer's, and some include blood testing.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Science and Educational Media Group. The AP is solely responsible for all content.

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WEATHER ALERT

9 warnings in effect for 11 counties in the area

Blood tests for alzheimer's may be coming to your doctor's office. here's what to know.

Lauran Neergaard

Associated Press

WASHINGTON – New blood tests could help doctors diagnose Alzheimer’s disease faster and more accurately, researchers reported Sunday – but some appear to work far better than others.

It’s tricky to tell if memory problems are caused by Alzheimer’s. That requires confirming one of the disease’s hallmark signs — buildup of a sticky protein called beta-amyloid — with a hard-to-get brain scan or uncomfortable spinal tap. Many patients instead are diagnosed based on symptoms and cognitive exams.

Recommended Videos

Labs have begun offering a variety of tests that can detect certain signs of Alzheimer's in blood. Scientists are excited by their potential but the tests aren't widely used yet because there's little data to guide doctors about which kind to order and when. The U.S. Food and Drug Administration hasn't formally approved any of them and there's little insurance coverage.

“What tests can we trust?” asked Dr. Suzanne Schindler, a neurologist at Washington University in St. Louis who’s part of a research project examining that. While some are very accurate, “other tests are not much better than a flip of a coin.”

Demand for earlier Alzheimer's diagnosis is increasing

More than 6 million people in the United States and millions more around the world have Alzheimer’s, the most common form of dementia. Its telltale “biomarkers” are brain-clogging amyloid plaques and abnormal tau protein that leads to neuron-killing tangles.

New drugs, Leqembi and Kisunla, can modestly slow worsening symptoms by removing gunky amyloid from the brain. But they only work in the earliest stages of Alzheimer’s and proving patients qualify in time can be difficult. Measuring amyloid in spinal fluid is invasive. A special PET scan to spot plaques is costly and getting an appointment can take months.

Even specialists can struggle to tell if Alzheimer’s or something else is to blame for a patient’s symptoms.

“I have patients not infrequently who I am convinced have Alzheimer’s disease and I do testing and it’s negative,” Schindler said.

New study suggests blood tests for Alzheimer’s can be simpler and faster

Blood tests so far have been used mostly in carefully controlled research settings. But a new study of about 1,200 patients in Sweden shows they also can work in the real-world bustle of doctors' offices — especially primary care doctors who see far more people with memory problems than specialists but have fewer tools to evaluate them.

In the study, patients who visited either a primary care doctor or a specialist for memory complaints got an initial diagnosis using traditional exams, gave blood for testing and were sent for a confirmatory spinal tap or brain scan.

Blood testing was far more accurate, Lund University researchers reported Sunday at the Alzheimer's Association International Conference in Philadelphia. The primary care doctors' initial diagnosis was 61% accurate and the specialists' 73% — but the blood test was 91% accurate, according to the findings, which also were published in the Journal of the American Medical Association.

Which blood tests for Alzheimer’s work best?

There’s almost “a wild West” in the variety being offered, said Dr. John Hsiao of the National Institute on Aging. They measure different biomarkers, in different ways.

Doctors and researchers should only use blood tests proven to have a greater than 90% accuracy rate, said Alzheimer’s Association chief science officer Maria Carrillo.

Today's tests most likely to meet that benchmark measure what’s called p-tau217, Carrillo and Hsiao agreed. Schindler helped lead an unusual direct comparison of several kinds of blood tests, funded by the Foundation for the National Institutes of Health, that came to the same conclusion.

That type of test measures a form of tau that correlates with how much plaque buildup someone has, Schindler explained. A high level signals a strong likelihood the person has Alzheimer’s while a low level indicates that’s probably not the cause of memory loss.

Several companies are developing p-tau217 tests including ALZpath Inc., Roche, Eli Lilly and C2N Diagnostics, which supplied the version used in the Swedish study.

Who should use blood tests for Alzheimer’s?

Only doctors can order them from labs. The Alzheimer’s Association is working on guidelines and several companies plan to seek FDA approval, which would clarify proper use.

For now, Carrillo said doctors should use blood testing only in people with memory problems, after checking the accuracy of the type they order.

Especially for primary care physicians, “it really has great potential to help them in sorting out who to give a reassuring message and who to send on to memory specialists,” said Dr. Sebastian Palmqvist of Lund University, who led the Swedish study with Lund’s Dr. Oskar Hansson.

The tests aren't yet for people who don't have symptoms but worry about Alzheimer's in the family — unless it's part of enrollment in research studies, Schindler stressed.

That's partly because amyloid buildup can begin two decades before the first sign of memory problems, and so far there are no preventive steps other than basic advice to eat healthy, exercise and get enough sleep. But there are studies underway testing possible therapies for people at high risk of Alzheimer's, and some include blood testing.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

Copyright 2024 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed without permission.

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