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    Community Voices

    I’m new here!

    Hi, my name is npottle. I'm here because I’ve recently been diagnosed with prostate cancer and I’m hoping to find knowledge, comfort, and support here.

    #MightyTogether

    1 person is talking about this
    Kelly Douglas

    How Theranos Negatively Impacted People With Health Conditions

    Hulu has officially released all episodes of its hit series “The Dropout,” which follows the meteoritic rise and fall of Theranos founder Elizabeth Holmes — the Stanford dropout whose medical technology startup was based on the false premise that the company could run hundreds of lifesaving blood tests using a single drop of blood. Amanda Seyfried, who plays Holmes, has captivated the world with a convincing portrayal of Holmes’ signature unblinking blue eyes, black turtleneck tops, and shockingly deep voice, and the sheer ridiculousness of the true story is enough to lure audiences in. However, there’s another piece of the Theranos story that’s even more important to consider while watching “The Dropout” — the real people who used Theranos’s faulty blood tests to make health decisions and the dangerous ways in which their health was affected by Theranos technology. Holmes lured investors — and eventually, medical doctors and patients — in with the promise that one-of-a-kind Theranos medical devices could test just a pinprick of blood for hundreds of medical conditions — from high cholesterol to sexually transmitted diseases. Company employees noticed a culture of secrecy at Theranos and began to suspect the revolutionary blood processing technology wasn’t as functional as Elizabeth Holmes claimed, but that didn’t stop Holmes from inking a $140 million deal with Walgreens, which ultimately led to Theranos blood testing centers being rolled out in Walgreens drug stores across California and Arizona. Unfortunately, though, many patients whose doctors recommended Theranos blood tests used inaccurate Theranos testing results to inform their future medical decisions. According to ABC’s “20/20,” Sheri Ackert, a breast cancer survivor who needed regular blood tests to monitor her estradiol levels, took a Theranos blood test at Walgreens after her OB/GYN suggested she try one. When the results came back, Ackert was shocked — her estradiol levels were over 300, which her doctor said indicated a possible tumor. When she took a blood test at a non-Theranos lab, Ackert found her estradiol was “practically nonexistent” — hundreds of points off from her Theranos test results. Ackert was far from alone, though. Among numerous others whose Theranos test results were wildly inaccurate was Mehrl Ellsworth, who needed to test his prostate-specific antigen (PSA) levels to screen for prostate cancer. Ellsworth’s PSA blood test came back with a number nearly 1,000 times the typical amount, but a baseline blood test revealed his antigen levels were within a healthy range. Had Ellsworth and his doctor relied exclusively on Theranos testing, Ellsworth may have received treatment for a condition he didn’t have — which can significantly affect the body and may even be fatal. Holmes’s decision to partner with a high-profile pharmaceutical company when she knew her company’s product didn’t work wasn’t just unethical — it was also dangerous. The ways medical devices function — or don’t function — can be the difference between life and death for vulnerable patients, but Holmes and Theranos knowingly integrated faulty medical devices and procedures into public phlebotomy centers. The patients didn’t seem to be of any concern to Theranos, though out of everyone who was negatively impacted by Theranos, medical patients experienced some of the most profound effects. As Theranos continues to make headlines, especially in the wake of Elizabeth Holmes’ upcoming sentencing hearing, much has been made of the high volume of Theranos investors — many of whom were small business owners or individuals — who lost thousands of dollars on a company that was selling a lie. But financial loss tells only one side of the story — the patients who relied on Theranos technology, assuming it to be well-tested and yield accurate results, often ended up with inaccurate test results, medical scares, and in some cases, treatments and procedures they may not have needed. Patients whose doctors relied exclusively on test results from Theranos centers may have lost financially as well, particularly if their test results led to surgeries or treatments insurance refused to cover. These patients may not have only lost trust in Theranos, many may also have lost trust in their own doctors — which can be a difficult relationship to repair, particularly for patients with chronic conditions that necessitate frequent doctor’s appointments. The emotional toll of receiving false results that may indicate health conditions only to discover that test results are in a healthy range can also wear patients down. In her interview with “20/20,” Sheri Ackert was candid about the anger she felt with Theranos after receiving her false test results. “No one from Theranos called [me back] to apologize,” she said with an edge in her voice. “That’s the least you can do when you mess up so badly.” The Theranos story encompasses so much more than a wide-eyed young woman whose dreams of helping others crashed and burned after she lied about the failure of her company’s medical technology. Its consequences even are far more life-changing than the financial woes its plainclothes investors endured after the company’s collapse. Though every bit of the Theranos story may feel saddening and appalling, the most deeply ingrained Theranos legacy just might be the impact the company’s faulty technology had on its consumers — the fear, the anger, the betrayal, and the mistrust many patients experienced. As the Theranos story continues to cycle through the news — rife with tales of the financial losses people endured, remember the Theranos patients who lost so much more than money — trust, security, and even their health.

    Community Voices

    “Gift” of learning to live with a #narcissiticspouse /abuse.

    <p>“Gift” of learning to live with a <a class="tm-topic-link ugc-topic" title="narcissiticspouse" href="/topic/narcissiticspouse/" data-id="621d6ff416c7ec0025cd5bef" data-name="narcissiticspouse" aria-label="hashtag narcissiticspouse">#narcissiticspouse</a> /<a href="https://themighty.com/topic/abuse/?label=abuse" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5600553f33fe98c084" data-name="abuse" title="abuse" target="_blank">abuse</a>.<br></p>
    3 people are talking about this
    Community Voices

    Frustrated

    About a week and a half ago I changed psychiatrists. On the day I had my first telehealth appointment with her I had run out of my Pristiq and I asked her if she could put in a new script for me which she did. However, for some reason my insurance has decided that it needs a prior authorization even though I have been on the med for months if not a year or slightly longer. That's the fun thing about the trial and error of meds, you go on and off so many you lose track of what you've tried and how long you've been on one particular med at least thats the case for me.

    I did get a call the middle of last week from the psych office in response to a call I put in at the end of the week before about the meds issue. I explained what was going on and that I wasn't able to get the prescription. I stopped by my pharmacy last Friday as a follow-up and the script was still waiting for the pre authorization.

    This was a script that I was hoping to wean off of as part of the process to determine what meds were actually doing something for me and which were not. I don't want to be taking a handful of meds if there is no reason too.

    On Saturday I had someone over that I care a great deal for that spent most of the day and evening with me cuddling and talking. At one point I was talking about the sudden loss of my mother in 2010, that I was the one to find her and the process of cleaning out the house.

    My mother passed exactly a month to the day after my step-father passed from advanced prostate cancer. While it was very difficult to discuss for months after her passing I began to accept it and move on with my life.

    However, Saturday night while I was preparing dinner for the two of us is when the discussion came up and while talking about it I just broke down and cried a bit. The only thing I can attribute the breakdown to is having to go cold turkey from the med due to both my insurance and psychiatrist failing me.

    At this point I feel as though I need to find a new psych which is extremely difficult due to the insurance I have and I really don't want to have to go through the "meet and greet" once again, it gets very tiring having to tell your whole life story over and over again. This is why I have avoided the mental health institutions for most of my life but since my attempt in 2017 I haven't had much of a choice. However, I am considering going back to the way I was before my attempt which means closing myself off to people, relationships and meds.

    I grew up dealing with this bullshit on my own so I might as well go back to what I know best.

    4 people are talking about this
    Community Voices

    Cancer I already have

    My age is 78. Prostate cancer was detected a few weeks ago. In a few days I will have surgery for both prostate and testicles.

    #Cancer

    4 people are talking about this
    Community Voices

    What was innocent to you is surreal to me.

    I just come here to say things I can’t say anywhere else. On New Years Eve, my wife says “thank you for being here, can I get another year?” Beats the shit out of me. Stage IV brain met…I just live in the moment. Had radiation to my brain in November. I now feel different in a way I can’t describe. Friend sends an invite on FB to a men’s retreat titled “One Year to Live”. It’s for middle age guys with a future. If he only knew. I have dreams foreshadowing my death. No time line. Oncologist won’t say “stage IV” even though the brain met is prostate cancer. Psychiatrist suggesting increase in med she previously wanted to get me off of because of “long term side effects”. Not a concern anymore? Radiation oncologist gave me a packet about living wills and medical power of attorney (that’s a first) But “everything is going well”. The only certainty I’ve been provided with by multiple oncologists is that the cancer is incurable. So I am left to my imagination. I could live another six months or five years. Or Omicron could get me in a few weeks. Not looking for helpful input, this is just a little vignette about how surreal the cancer journey can be. I’ll shake this all off (or maybe just carry it) and try to stay in the moment. Statistically, I’ve made it pretty far to the right of the bell curve, so there’s that. I’m rambling. It happens when it happens. Peace to all of you.
    #Cancer

    1 person is talking about this
    Community Voices

    Anyone ever had an “inappropriate” emotional response to cancer progression.

    I was recently diagnosed with stage IV prostate cancer when a tumor was found on the base of my skull. Now the weird part. When I was initially told this, I felt an intense sense of relief. After six years of treatment, surgery, radiation, ADT, I went into an unexpectedly long 18 month remission, but was still told by multiple oncologists the cancer was incurable. So I’ve just been waiting for the other shoe to drop while struggling with permanent and dibilitating side effects of prior treatment. So when this tumor was found I thought” finally, I can get on with this and get this over with”. After the tumor was found, I had immediate Stereotactic Body Radiation Therapy, which only takes three blasts over a weeks time. Three weeks later, my PSA had dropped significantly, a sign the radiation was working. When I first heard that, I was profoundly disappointed. Again the thought was, I don’t want to keep prolonging this, I want it to be over. I have no thoughts of suicide…I’m just so weary after eight years. This is my confessional space. Who else can I tell and not sound absolutely crazy? The good news is I’ve been working really hard on an attitude adjustment. Remembering and re-examining things to be grateful for, for people and things that make my life meaningful and want to keep going. So I’m mostly over the emotional responses I had that were shocking to me when I experienced them. Maybe others have been in the same emotional spaces. If you have been, you are not alone, just know it’s possible to climb out.

    1 person is talking about this
    Community Voices

    I'm sick of being sick and tired.

    I'm 80 YO and see no point of being alive anymore. I have diabetes and prostate cancer. I'm at the point that Jesus is nothing but Caesar's Messiah and just there to keep us stupid people in line. Hopefully I will not live much longer.

    3 people are talking about this
    Community Voices

    Another TV show that I love that I want to shine the light on the illnesses they took their lives #bewitched

    <p>Another TV show that I love that I want to shine the light on the illnesses they took their lives #bewitched</p>