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    What's New in Transplant
    Megan Glosson

    How Roe v. Wade Being Overturned Harms People With Health Conditions

    This past Friday, the Supreme Court voted five to four in favor of overturning Roe v. Wade. This landmark court decision from 1973 established the constitutional right to abortion. Now, individual states will get to decide whether or not they will allow abortion. People across the country are experiencing mixed feelings about this perplexing court ruling. However, many people, including the justices who voted in favor of overturning the court’s previous ruling on the matter, are not thinking about the way in which this decision will impact the millions of American women and people with a uterus who live with chronic health conditions. So, here are just some of the people the justices of the Supreme Court of the United States failed to consider when they overturned Roe v. Wade and all but outlawed abortion for over half of the states in our country. 1. The Transplant Recipients Whose Medications Make Pregnancy Problematic Although it is possible for a transplant recipient to get pregnant and carry a baby to term, there are many potential complications. First and foremost, many anti-rejection medications can cause birth defects that would make life unsustainable for the fetus. They can also build up to toxic levels in the fetus’ bloodstream, which can lead to other complications. Although there are some medications that are safe for the fetus, any change in immunosuppressants must be made gradually so doctors can measure if these medications are actually doing their job (because not every medication works for every person). Also, because medication levels are based on weight, pregnancy can impact the medication levels in a way that leads to organ rejection during the pregnancy, making it a life-threatening situation for parent and fetus. 2. The People Whose Autoimmune Disorder Could Cause Complications Many autoimmune disorders cause your immune system to attack healthy tissue. This means that a pre-existing autoimmune disorder can interfere with the pregnancy by harming the fetus. Even if the autoimmune disorder allows the pregnancy to continue, the mother’s antibodies can enter the fetus’s system and disrupt its development and growth. Furthermore, some people don’t even know they have an autoimmune disorder until their pregnancy triggers it. In these cases, a person may find that being pregnant is interfering with their life so much that it’s not possible to continue living while pregnant. 3. Those Who Live With a Genetic Disorder That Could Prove Fatal for the Baby Living with a rare disease is not an easy road. However, some genetic disorders can be fatal, and passing them down to a child can increase the risk of fatality for the baby. These conditions include Huntington’s disease, vascular EDS (vEDS), cystic fibrosis, Marfan’s syndrome, and many other genetic disorders that someone can either have or be a carrier for. Even if the baby makes it through delivery, they will have a hard life (assuming they can sustain life). 4. The People Whose Endometriosis Caused an Ectopic Pregnancy People with endometriosis are twice as likely to experience ectopic pregnancies than the average person. Unfortunately, there’s zero possibility of an ectopic pregnancy becoming viable, no matter what marvels of modern medicine an OBGYN can perform. Usually, ectopic pregnancies are treated with injections that end the pregnancy or surgery to remove the fallopian tube. Either way, these life-saving medical procedures can be considered forms of abortion, and would now be punishable by law in some states. This means that people could face jail time for something completely out of their control just because they chose to save their own life. And without Roe v. Wade, there’s nothing a person can do about it if their state’s court system decides to rule against them. 5. Those Whose Cancer Treatment Would Affect the Fetus Breast cancer is the most commonly occurring type of cancer for women, and breast cancer rates are on the rise for women of childbearing age. Unfortunately, many of the recommended forms of cancer treatment can cause harm to a fetus and are not compatible with pregnancy. There are instances where a pregnant person with cancer can either wait until after their child is born to undergo treatment or select treatment methods that are least harmful to the fetus. However, there are also times when someone may need to decide whether it’s better to end a pregnancy during the early stages so they can undergo cancer treatment, or risk bringing a baby into the world while also dying. It’s not an easy decision to make either way, but the overruling of Roe v. Wade now makes it even more challenging. 6. The People Who Live With Mental Health Conditions That Require Daily Medications There are countless mental health conditions that require daily medications. Some of these conditions include depression, anxiety, bipolar disorder, and schizophrenia. However, even with the wide variety of available medications out there for each and every single mental health condition, the American College of Obstetricians and Gynecologists still says a majority of these medications are not safe during pregnancy, especially during the first trimester. Whether a pregnancy was planned or unexpected, a pregnant person who uses one or more psychiatric medications may be forced to decide whether or not they want to expose their fetus to the risks associated with the medication. In many cases, these medications can cause harmful birth defects or even harm the fetus in a way that makes life unsustainable. Therefore, these individuals need as many choices as possible available to them, including the right to terminate the pregnancy if that’s what they and their medical team feel is best. 7. Those Whose Epilepsy Puts Them At Risk for a Stillbirth Women with epilepsy are up to three times as likely to have a pregnancy that results in stillbirth than women who do not live with epilepsy. Sometimes, there’s no way of knowing whether they will experience a stillborn birth, whereas other times an OBGYN may no longer detect signs of life before the pregnant person even hits the third trimester. Without the option to abort, these individuals will be forced to carry a pregnancy to term even though the fetus will no longer grow and develop. 8. The People Who Almost Died With Their First Baby and Don’t Want to Go Through That Again There’s a lot that is still unknown about how pregnancy impacts the body. Conditions like pre-eclampsia are largely undetectable until it’s too late, as are other rare pregnancy complications. However, people who experience these issues during their first pregnancy are more likely to experience them again. This means a person may take active measures to avoid additional pregnancies. Unfortunately, no form of birth control is foolproof, and a person can still end up pregnant even when actively avoiding it. Should these individuals have to go through the same hell they endured during their first pregnancy if they don’t have to? And is that really someone else’s choice to make? 9. The Trans Man Who Would Struggle With the Dysphoria of a Pregnancy Thanks to the advances in modern medicine, trans men can do many things to counteract the gender dysphoria they experience. However, up to 30 percent of trans men still experience unplanned pregnancies. These pregnancies can lead to depression and other concerns due to the mixture of dysphoria and judgment from society. Before the overturning of Roe v. Wade, trans men could decide whether or not they wanted to go through with a pregnancy. Now that it is overturned, trans men in states with abortion laws in place may have no choice, and this combined with the stigma they likely already face due to society’s general view of the trans community in their geographic location, could cause depression and suicide rates to climb even more. This list isn’t exhaustive. However, it does provide a view into just how many people will be impacted due to the Supreme Court’s decision to overturn Roe v. Wade. In many cases, people who live with health conditions are already marginalized and mistreated by medical providers and society as a whole. Now they may face even more problems and harsh judgment just for making decisions that can help them continue to live. This isn’t the type of treatment anyone deserves, especially people who already have to fight for their right to live day in and day out.

    Community Voices

    I'm new here!

    Hi, my name is BakDownThere. I'm here because I have the things tagged here, along with back spasms on my right side that wraparound to the front or sort of vice versa.

    It's cause is unclear, but I have spinal stenosis from a schwannoma (growth/tumor). I also have a bunch of eastern barr virus tumors in my liver and one in my pelvic floor. That is causing me tremendous pain.

    I also have a kidney transplant and take immune suppressants, hence the tumors and growths.
    I was born with persistent cloaca, where my uro, genital, and....digestive? Tracts didn't finish forming. I was born with an impersonate cloaca, too.

    I javelin a 7 year old boy whose school has stopped masking. My poor boy has been sick most of the week and threw up yesterday.
    I feel terrible in my tummy and am praying not to vomit. It will hurt so much, it will be hard to breathe.
    I'm so sick of. Every single thing.

    Sorry my first post is like this. I am so miserable right this moment.
    But...I did find some odansetron (anti-nausea pills). So there's hppe!

    #MightyTogether #Anxiety #ADHD

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    Community Voices

    Feel humiliated

    I was in good physical and mental health until 2005. My liver failed, my ammonia levels were high I was hallucinating and the outcome didn’t look goodI had to move from the state I lived back to my moms to get on the liver transplant list. I was so devastated. At that same time in 2005 my oldest brother was diagnosed with liver cancer and died within two months. The end of of 2005 my middle brother died of a heroin overdose. I lived and felt so guilty. My parents trudged forward in their 70s I was listed for a liver transplant in early 2006 at UPMC San Francisco. Over the course 3 years…I got better I jumped through every hoop there was, I was compliant. I have never been the same. Fast forward 10 yrs, I had been on Abilify and then lithium in addition. My PCP felt he couldn’t treat me as I need to be treated. I started seeing a Psychiatrist. After 2 years of trying to find a good dosage I had a psychotic break. I was terrified, I had no idea where I was who my husband dad or sons were. I got lost driving, fell regularly and my husband had no ideA what to do…it lasted a month and a half. My poor husband finally called my psychiatrist out of desperation. I have so little memory of that time except delusions hallucinations and confusion. I became incontinent, developed an essential tic in my right hand, lost a lot of memory and it took a piece of my soul by the time it was over. That was 2 years ago. Since that time I’ve had a host of health problems most have gone unfounded, I just feel like I’m crazy. It’s either in my head, it’s my anxiety. I don’t say anything to anybody anymore about how I feel, even if there’s something wrong I don’t disclose. I feel like I’m labeled a hypochondriac, I feel humiliated. My symptoms are not made up but I can’t convince anybody. I’m not crazy I know the difference between right and wrong, sick and healthy. I’m at a point now where after 3 years I feel so much worse than I started out.. I have a very miserable life. I have a PCP, a Psychiatrist , a psychoanalyst, a neurologist and a GI doctor. I feel like a fool and can’t see any hope.

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    Community Voices

    That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.

    <p>That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.</p>
    Community Voices
    Leslie Blumenstein

    Protecting Myself From COVID-19 After a Bone Marrow Transplant

    I don’t know how to be in the world right now. I don’t know how to be a good friend, partner, or parent. The weight of life is cracking and flattening me into an unrecognizable shape. I am entering my second decade of chronic illness and completing year two of a pandemic. I used to force myself to push through moments of feeling too tired, too overwhelmed, too underprepared — focusing on survival while maintaining the status quo. The status quo is now a constantly moving limbo bar. Right now, the bar hovers on the ground. Back arched, shuffling forward, the extension of my bend has met its limit. Two full years into a pandemic, the air is both muted and amplified with fear and uncertainty. Among adults in the United States, rates of anxiety and depression were nearly four times higher between April 2020 and August 2021, according to the Centers for Disease Control and Prevention. Anxiety, depression, and I are perpetual dance partners, opposing poles held together by a magnetized bond. Therapy, pills, writing, self-care: all attempts to pry us apart. Our proximity and constant motion keep us electrically charged. I want to put the anxiety down and tell my brain I’m out of danger. I am not under threat. I want to tell my depression, hey, I’m OK. I’m not hopeless. A brain and a body have different ideas about how survival mode works. Body survival mode slows down everything to keep all the essential organs working. Conservation of energy requires the cessation of anything extraneous. All energy is spoken for. There can be no asks. The body doesn’t care about the brain’s loneliness or fear. The body only cares about staying alive. Brain survival requires more. It requires connection to other brains. When the needs of the brain are not being met, it will shut down body functions in order to preserve itself. My body stopped making blood cells at some point. I don’t know how long I’d been sick, but it became unignorable in September of 2017. The cause of my disease was idiopathic — as are most cases. Severe aplastic anemia is a rare bone marrow disease that affects 600-900 people in the United States per year. It impacts all three bloodlines: red cells, white cells, and platelets. Your marrow, normally thick and lush with beautiful new blood cells becomes empty and brittle — aplastic. Once I heard it described as walking on hollow bones. The cure for my body was a bone marrow transplant on Halloween of 2017. The cure caused a system reset. A complete shutdown and reboot. I began to reevaluate the status quo. In February of 2020, before being vaccine eligible, I was told by my medical team that I would likely not survive a SARS-CoV-2 infection. Finally fully vaccinated in September 2021, I am still at high risk for severe illness. The protection offered to immunosuppressed people by the vaccine is unclear. When you have a chronic illness, you aren’t in charge of your body. You become dependent on -ologists of whatever specialty to tell you what to do with your body for the best possible outcome. There’s so little in your control. Maybe it’s the exact same amount of control you had before illness, but its omnipresence sucks the oxygen out of the idea of free will. Everything feels predetermined when system dysfunction prevails. My state lifted its mask mandate recently. While others are celebrating, I am preparing yet again to live smaller. Everyone is done with the pandemic. Everyone wants to live freely. To go to brunch, to socialize, to travel, to exist without worrying about KN95s and who is or isn’t vaxxed. I lost a friendship last spring because I don’t have the luxury of being done. She wanted to move forward and didn’t want to worry about accommodating me. “We have to move forward. We’ve done all the right things.” Her words burned. I couldn’t argue with her truth. I had compassion for her desperation to move forward, but my hurt was all I could express. We’d been friends for almost a decade. She’d been with me as I recovered from my transplant. After the phone conversation that severed us, I thought of my dad. How he’d had support in the first decade of his disease. He lived with a chronic illness for almost 25 years. By his death, all he had was his family. I told my mom about the conversation with my friend. She looked at me with an understanding smile, “People leave when it gets hard.” Four years ago, I was dying. As someone who is still considered high-risk, despite being vaccinated, severe illness isn’t off the table, especially if I contract COVID-19. I have comorbidities and chronic graft versus host disease due to my transplant. A COVID-19 infection isn’t a simple 10-day illness. Graft versus host disease (GvHD) is the unfortunate side effect of my allogeneic bone marrow transplant. The graft (donor cells) attacks my healthy cells (host) causing an overactive immune response. It is systemic. I’ve had GvHD in my liver, kidneys, eyes, gut, skin, and mouth so far. A mouth full of blisters isn’t something I’m anxious to repeat. The prescription to control a GvHD flare is high-dose prednisone and other immunosuppression medications. The last time I had a flare, I was on prednisone for a year and a half. Prednisone is purgatory and punishment I never want to endure again. Anytime I get sick, I get a GvHD flare. The severity is an unknown that haunts me. If I get sick with COVID-19, it isn’t as easy as getting it and getting over it. The fallout could be years of hell. I am tired of fighting for my life. I want medical freedom too. I am also tired of being isolated. When you have a chronic illness, you can’t show up in the world like you used to. You can’t show up in relationships like you used to. You have to listen to your body. You have to rest. You have to say no. You have to put yourself first. When you’ve built relationships on putting everyone else first, they don’t work when you can’t do that anymore. People move on. They should. I expected them to. It doesn’t mean the sting of loneliness feels any less potent. We are in a transition with this pandemic. It will move to endemic, experts say, but until then, we’re still in the pandemic. “It’s dangerous to assume that Omicron will be the last variant and that we are in the end game,” Tedros Adhanom Ghebreyesus, head of the World Health Organization stated in a WHO board meeting in January. In this moment of division and politicization of a public health emergency, the world wants to move forward but the disease isn’t interested in our timeline or our pandemic fatigue. A virus doesn’t consider feelings. While healthy people may feel free to move about without significant consequence, what happens to the rest of us? I preemptively judged that my dad gave up 10 years into his disease. I perceived him to lose his fight to get better. He did not want to be poked or examined anymore. He didn’t want to try new therapies or unsolicited, imaginative suggestions to heal. At 20, I asked a psychic, “Will my dad get better?” “Only when he decides to,” was her answer. Maybe there was more my dad could have done. When your container has failed you for so long, defeat lingers. You lose so much about life that brings you joy. People came around for my dad in the early years. They trickled away. Eventually, he lived a house-sized existence. Medical appointments, television, weekly calls with his brother, and visits from his kids and grandchildren marked the days. At 44, I am not ready for a house-sized existence. The parallels sit unsettled in my gut. My life is mostly me, lapping up what attention my teenager will give me, driving around with my husband for date night, Netflix, Zoom, and medical appointments. I don’t know if I am choosing this existence, or if it is being forced upon me. My circumstances aren’t comparable to someone who’s healthy with no underlying conditions. I do see friends occasionally, but it’s usually after test protocols and boundary setting to give myself the best odds of not contracting COVID-19. I’m a pain in the ass to hang out with. I’ve already fought for my life once. I don’t want to do it again. I no longer judge my dad so harshly for how he lived. He was tired. He understood what really brought him joy. That was enough. I was not prepared for the loneliness of disease superimposed on the loneliness of a pandemic. I lack complete acceptance. I’m not ready to accept that my life may remain this way for an unknown amount of time. Discontent is a signal to shift. Sometimes things shift in your favor. Often they don’t. This time will end. Where will I be when it does?

    Community Voices

    Home sweet home

    <p>Home sweet home</p>
    2 people are talking about this

    I Have No Immune System: I Am the Reason COVID-19 Masks Still Matter

    I don’t know anyone who isn’t experiencing some form of pandemic fatigue. That’s just the reality. It would be nice to see one another’s faces, gather in large groups, attend concerts, travel like we used to (without fear), not have raw skin from washing so frequently, and just not have to be concerned about the virus. I know these examples are truer for some of us than others, and we have all been impacted by this virus. In March, my state (Oregon) lifted our indoor mask requirements. This week, I received my fourth COVID-19 vaccine. As I write that, it’s easy for me to imagine how someone reading it could think, “Wow! Four vaccines, she’s really protected!” However, things are not always what they seem. Let me give you some context. In my late 30s, I got mono and never seemed to recover. What started out as a virus turned into a “post-viral condition,” that became myalgic encephalomyelitis . This is much like what happens to people who get long- COVID . From there things snowballed, and I was diagnosed with fibromyalgia . Within two years, I contracted an autoimmune disease called polymyositis , which is a muscle-wasting disease – muscle dissolved off my bones at an alarming rate, leaving me unable to stand from a seated position, walk without assistance, or roll over in bed. This disease is part of a cluster of autoimmune diseases called antisynthetase syndrome. In two years’ time, my lungs were turning into scar tissue, I was using oxygen full-time and was referred for a double-lung transplant . My team of doctors has been able to slow the progression of my lung disease and keep me stable enough to get off the transplant list, although I live with about 17% lung function. In order to accomplish this, I take 33 pills each day to maintain the relative stasis I’ve reached over these last 11 years. Also, I receive IV medication to keep my immune system from attacking me so vigorously. The main action of the IV meds is to target a protein (CD20) on my B cells to keep them from maturing and deplete the overall number of B cells in my body. Because B cells are a big part of our protective immune system, they help us fight. In my case – that often means they are fighting me. Unfortunately, B cells are a major part of how vaccines replicate and protect us. If you’ve hung in here with me so far, perhaps you can see the problem. If I don’t have B cells, and the ones I do have aren’t mature, how can the vaccine effectively work in my body? The short answer (after years of studying the COVID vaccine and others): it can’t! In bodies like mine, vaccines do not effectively produce antibodies for my body to “remember” and fight the virus, as numerous studies have shown. In one of these studies, the effects of the vaccine in people taking my medication were described as “statistically insignificant.” That’s why the CDC keeps allowing us to get boosters – with the hope that we might produce some antibodies. “ I often get sick when no one else around me is.” So, when I hear “we’re dropping our mask mandates,” (as is now true across the nation) and “offices are returning to in-person work,” (without social distancing requirements) and that companies like JP Morgan Chase and others are no longer requiring employees to report COVID infections, I’m scared for my life. I’m not sure I would survive getting COVID-19 . All this at a time when the newest variant, BA.2, was described by the World Health Organization as “substantially more transmissible” than Omicron. I receive my IV meds at an infusion clinic within my rheumatologist’s office. Until quite recently (because of a mandate by our governor) many of the staff were unvaccinated. While I understand the matter of choice when it comes to vaccines, 100% of the population those four nurses serve are immunosuppressed, immunocompromised, or both. In cases such as this, it seems outrageous we don’t require the vaccine. By contrast, because I still get other treatment at my large transplant hospital, I have seen some of the best and most effective COVID protocols in place since the beginning of the pandemic. When I go to my infusion clinic, their standards have, at times, seemed feeble by comparison: not requiring the vaccine, not testing staff (ever), allowing cloth/personal masks rather than surgical or N95 masks, etc. I’ve requested changes and have been in touch with the manager of the facility. My fears were realized when, shortly after one of my IV treatments, one of the nurses came down with COVID . At this point, it seems like choosing to go to the infusion clinic to receive IV medications that are saving my life, means potentially putting my life at risk. It is a lousy way to feel. Now that mask mandates are changing, my very limited ability to leave the house for occasional outings for a bit of shopping or something social has ended abruptly. With such a severely suppressed immune system, I often get sick when no one else around me is. My wife brings home a cold that her system is strong enough to fight, I pick up something from hugging a friend that they weren’t even sick with. Much like what scared us early on about COVID , you can have it and not know it. And as a person who’s vaccinated or not, you can carry bits of the virus around and not be sick with it. We know face masks are an effective way to prevent the spread of COVID-19 and other airborne diseases. If you’d be willing to wear one when you’re out in public, it might help save my life. When we’re both wearing a mask, the likelihood of disease transmission decreases even further. Perhaps my story sounds extreme to you, but surely there’s someone in your life who has a child with cancer , an aunt on dialysis, or an elderly relative. Remember in the 80s when businesses had the “No shirt. No shoes. No service.” signs? We are all wearing shirts and shoes when we go out; what’s a bit more cloth? I’ll tell you what it is, it’s a somewhat inconvenient but compassionate, and thoughtful, choice to consider all our health and well being.

    Community Voices

    Slowdown and smell the flowers

    <p>Slowdown and smell the flowers</p>
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    Community Voices

    New life, new challenges

    I was diagnosed on February 29, 2000. My biggest issue now is my cognitive struggle, especially with executive functioning - math, scheduling, logic, memory, and, especially making decisions! In the midst of all of this, my husband had a lung transplant in September 2021 and I lost my sweet mother to cancer in October. Now I’m dealing with the switch from my excellent insurance to Medicare. I definitely realized I am much stronger than I thought. Mike’s doing well 7 months post transplant. Life is settling down. Faith and love pulled me through. I tell you this to encourage anyone who is feeling totally overwhelmed by our shared disease and circumstances. We can do this!! And it really does get better!

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