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________ would help me feel more calm about my health.

When you live with primary hyperoxaluria type 1 (PH1), it can be challenging to manage the demands, needs, and treatment that come with it. Reaching a state of calm and balance may mean taking intentional steps or seeking help if necessary (or it may even look like getting answers!). What would help you feel more calm about your health?

#KidneyDisease #Kidney #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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Our old, new house - Part two, The Garden of Needing

When I attacked the lawn last year, it was infested with about two hundred Hawkbit plants. Looking down the garden it was like green aerials poking into the sky everywhere. Getting down on my knees to pull them up, I found they were like hard, green, bifurcated plates, crushing the grass below. They almost completely filled a garden waste bin, by the time I had finished. I thanked God (or was it Lidl?) for knee pads I had recently bought. While this was a long and tedious job, worse awaited in the form of Snowberry Bush suckers, which made a sucker out of me.

Years of neglect had allowed them to creep under the lawn as roots, then burst out in various places as whole, new plants or at least that was their cunning plan: When we lived in Kilmarnock, in rented accommodation the same problem occurred with Japanese Knotweed.

Once again I partially filled a brown bin with ripped out roots, dug up with what looked like an ice axe, left by previous occupants of the house. A lot of the roots were feet long and had to be cut into shorter sections, to fit in the bin. It took me a lot of time to find and root out as much of the roots as possible. It was back breaking and pain not rain stopped work on several occasions.

Cutting back the laurels was also a hard task but in a different way. The far end of the garden, where the main bushes grew as a solid hedge, were several feet high, several feet long and several feet wide. Reaching some parts meant stretching and leaning into the hedge, quite a distance. Other bushes on the periphery, were also cut back, revealing other shrubs hidden behind them and bursting out of the top, including a Buddleia.

In another part of the garden I cut back ivy and clematis, growing over our fence, to reveal two, large, plastic planting tubs (a friend also pointed out a bird table, buried so deep in the shrubbery that I had missed it myself: I dug it out, pulled it out of its hiding place, dragged it across the lawn and replanted it closer to the house, where we could at least see the birds using it plus gave it a fresh lick of paint). I also dug up two hydrangeas, struggling to reach the light and also buried in the middle of this free-for-all chaos: they survived the winter but thinking they were dead from the transplant, I uprooted them again, only to find I was wrong and stuck them back in the earth (hopefully they will survive my gardening incompetence but only time will tell).

I didn’t know what else was in the flowerbed parts of the garden but planted primulas in abundance, only to discover other flowers pushing up from under them in places (they died equally in abundance too – see note above about incompetence). I also bought four azaleas, frost killing one totally and damaging two of the others but the fourth flourished because it was sheltered.

Daffodils and other bulbs either burst into bloom or I uprooted them up accidentally. One large clump of something in the middle of the square bed, turned out to be hostas. I found more in the ‘L’ shaped border, in a couple of odd lumps. I have now placed all of these in planters, to replace the winter’s losses. I also bought half a dozen geraniums for a couple of pots and an oblong wooden planter. Sadly they all seem to have succumbed to the frost, although a dwarf rose seems to have survived, despite being frozen to the ground.

One survivor of the ice and snow, I wish hadn’t. It was a rose bush gone mad. Great big branches, ten to twelve feet high, stretching into the sky, no longer attached to the rose arch meant for it. I thought I had killed it last year but fresh red shoots were visible this spring. The cheap option of using an old weed killer spray I found in the shed hadn’t worked. Apparently roses are notoriously hard to kill and after chopping off large chunks of root, it was still breathing (see illustration). I have now purchased stump killer and hopefully this will stunt its growth. I don’t like killing things deliberately but I am pretty good at doing it accidentally it seems.

On the gravel beside the dreaded rose bush, a fine fuzz of seedlings grew. It took me ages to pull them all up as they covered a large area of ground but came out easily as not deep rooted. Equally well established brambles proliferated but were again nothing compared to one I had to deal with in rented accommodation elsewhere. It used a tree as support and was once more a monster, growing ten to twelve feet high at least. The bramble canes were as thick as my thumb and the roots looked like a gigantic, twisted, gnarly hand – as though out of a Grimm’s fairy tale illustration. Compared to this later rose though, it came out of the ground relatively easily, despite the thorns ripping my old skin to shreds at times,

I needed somewhere to store the larger garden tools and larger items for garden maintenance, including lawnmower, wheelbarrow, strimmer and hedge trimmer. A joiner friend was going to make me a shed for me but was overwhelmed with work, so rather than hang about I ordered one over the internet. Before it arrived, I had to level off the cement paving slabs I wanted it to go on. Previously it had held a sizeable dog kennel, sloped for run-off when cleaning it down I assume. I also purchased a small wooden bunker, to replace the warper plastic one that was beside it, which again we inherited and was used for bikes by the original owners. Strong winds lifted the lid as there was no locking mechanism left in operation and one of the hinges was also broken, which made shutting the top awkward at times. I bought the replacement to store our roof box as I had with the plastic one but unfortunately the top wouldn’t open, only the front and it wouldn’t fit, so in went the wheelbarrow instead.

I have yet to paint these two wooden structures but at least managed to paint the fence and gate last year.

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So much fun…

So apparently they did a wipe and my previous posts are gone. That’s fun

Anyways, just a little rant - not having the best time here at the moment.

Need a heart valve transplant this year from my congenital defect, and dealing with doctors again is not something I enjoy. My mom is freaking out, my sister is being clingy, and my dad is demanding I try to schedule mutiple fact finding and question based meetings with the doctors. I’ve looked at some of his questions… they go into excessive detail. Painfully graphic detail. The kind of detail that forces me to remember the info dump I was given at 5 years old about how and exactly why I’ll never be able to match anyone else.

I just want this to be over. I don’t much care if it’s a success or not any more, I just want to go back to ignoring the fact I’ve never been healthy and just deal with the side effects I’ve gotten so good at suppressing. Or not… won’t have to deal with side effects at all that way. I’d like to stick around if I can, but right now I dont much care… I just want this done. #Depression #CongenitalHeartDefectDisease

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What do you feel is the hardest part about living with PH1?

Living with PH1 can be really challenging, and oftentimes looks different for everyone. What do you feel is the hardest part about living with PH1? What do you wish others better understood?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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6 Young Adult Books About Transplants

Going through a transplant can be extremely tiring, frustrating, and feeling like you’re in isolation. But you’re not alone! Here are 6 books that prove that:

1. “Faceless” by Alyssa Sheinmel
When Maisie Winters wakes up, she’s in the hospital. The last thing she remembers is running through the hills of her neighborhood one misty morning. Slowly, she puts the pieces together. Before she could make it home, a storm gathered. Lightning hit a power line and sparks rained down, the hot-burning electrical fire consuming her. Destroying her face. Where her nose, cheeks, and chin used to be, now there is…nothing. Maisie’s lucky enough to qualify for a rare medical treatment: a face transplant. At least, everyone says she’s lucky. But with someone else’s features staring back at her in the mirror, Maisie looks—and feels—like a stranger. The doctors promised that the transplant was her chance to live a normal life again, but nothing feels normal anymore. Before, she knew who she was—a regular girl who ran track and got good grades, who loved her boyfriend and her best friend. Now, she can’t even recognize herself. New York Times bestselling author Alyssa Sheinmel has created a gripping and gorgeously written tale of identity and love. This is a story of losing yourself and the long, hard fight to find your way back.

2. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

3. “Things We Know By Heart” by Jessi Kirby
In this unforgettable novel, Quinn Sullivan falls for the recipient of her boyfriend’s donated heart. After Quinn’s boyfriend, Trent, dies in an accident their junior year, she reaches out to the recipients of his donated organs in hopes of picking up the fragments of her now-unrecognizable life. But whoever received Trent’s heart has chosen to remain silent. The essence of a person, Quinn has always believed, is in the heart. If she finds Trent’s, then in a way, she will still have a piece of him. Risking everything to get closure once and for all, Quinn goes outside the system to track down nineteen-year-old Colton Thomas, whose life has been forever changed by this priceless gift. But what starts as an accidental run-in quickly develops into something more, sparking an undeniable attraction. She doesn’t want to give in to it—especially since he has no idea how they’re connected—but the time Quinn spends with Colton makes her feel alive again. No matter how hard she’s falling for Colton, though, each beat of his heart reminds her of all she’s lost . . . and all that remains at stake.

4. “Heart To Heart” by Lurlene McDaniel
Elowyn Eden and Kassey Messechek are best friends. They share every aspect of their lives. But one thing Elowyn has not yet shared with Kassey is that she checked the organ donor box on her newly acquired driver's license. Kassey only learns of this in a startling and devastating way—when Elowyn's life-giving donor wishes are about to be honored. Arabeth St. Clair has not had the luck to have a best friend. Due to her diseased heart, she's led a sheltered life. When Arabeth is sixteen, she and her mother receive the call that will change their lives—but they don't know to whom they should be forever grateful. When the worlds of these three girls and their families intersect, lives are changed in ways never imagined. Most especially, it is Kassey who sees things differently, for she can keep alive the memory of her dear friend by sharing the renewed life of another teenage girl, while helping to ease the pain of the two families involved and coming to terms with her own.

5. “Saving Jessica” by Lurlene McDaniel
Jessica McMillian and Jeremy Travino are a perfect couple. But now Jessica has been diagnosed as having kidney failure. She is on dialysis three days a week and is so depressed that she's not sure she wants to live. Her one hope for a normal life is a kidney transplant, but she's an only child and her parents aren't suitable donors. Jeremy is determined to donate one of his kidneys to her, but his parents are terrified of losing their only child. Will Jeremy find the strength to go against his parent's wishes and do what he must to save Jessica?

6. “The Arrival of Someday” by Jen Malone
In this heartfelt and emotionally candid contemporary YA, author Jen Malone delves into the life of a teen whose world is brought to an abrupt halt when she learns she’s in dire need of an organ transplant. Hard-charging and irrepressible eighteen-year-old Amelia Linehan could see a roller derby opponent a mile away—and that’s while crouched down, bent over skates, and zooming around a track at the speed of light. They don’t call her Rolldemort for nothing! What she couldn’t see coming, however, was the unexpected flare-up of a rare liver disorder she was born with. But now it’s the only thing she—and everyone around her—can think about. With no guarantee of a viable organ transplant, everything Amelia’s been sure of—like her college plans, the mural she’d been commissioned to paint, or the possibility of one day falling in love—has become a huge question mark, threatening to drag her down into a sea of what-ifs she’s desperate to avoid. Then a friend from the past shows up. With Will, it’s easy to forget about what’s lurking underneath the lightness of their time together. It’s easy to feel alive when all signs point elsewhere. On the other hand, with the odds decidedly not in her favor, Amelia knows this feeling couldn’t last forever. But what can?

📚 Happy reading! ❤️

#themightyreaders #Transplant #CysticFibrosis #HeartTransplant #KidneyDisease

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Young Adult Books Featuring Genetic Disorders

Having genetic disorders can be isolating. So here are 4 young adult books about genetic disorders to tell you that you’re not alone:

1. “A Step Toward Falling” by Cammie McGovern
*This book may trigger individuals who experienced sexual abuse, violence, or assault. Please do not read if this triggers you!

Cammie McGovern follows up her breakout young adult debut, “Say What You Will”, with this powerful and unforgettable novel about learning from your mistakes, and learning to forgive. Emily has always been the kind of girl who tries to do the right thing—until one night when she does the worst thing possible. She sees Belinda, a classmate with developmental disabilities, being attacked. Inexplicably, she does nothing at all. Belinda, however, manages to save herself. When their high school finds out what happened, Emily and Lucas, a football player who was also there that night, are required to perform community service at a center for disabled people. Soon, Lucas and Emily begin to feel like maybe they're starting to make a real difference. Like they would be able to do the right thing if they could do that night all over again. But can they do anything that will actually help the one person they hurt the most?

2. “Just Breathe” by Cammie McGovern
David Sheinman is the popular president of his senior class, battling cystic fibrosis. Jamie Turner is a quiet sophomore, struggling with depression. The pair soon realizes that they can be their true selves with each other, and their unlikely friendship develops into something so much more. But neither Jamie nor David can bring themselves to reveal the secrets that weigh most heavily on their hearts—and their time for honesty may be running out.

3. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

4. “Rules for 50/50 Chances” by Kate McGovern
A heartrending but ultimately uplifting debut novel about learning to accept life's uncertainties; a perfect fit for the current trend in contemporary realistic novels that confront issues about life, death, and love. Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult—including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

📚 I hope this list can help someone 🧬

#themightyreaders #DownSyndrome #CysticFibrosis #HuntingtonsDisease #SickleCellDisease

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3 Young Adult Books That Have Burn Survivors

To survive a fire can be traumatic and can also feel very lonely. Here are three YA books that focus on burn survivors:

1.”Scars Like Wings” by Erin Stewart

Ava Lee has lost everything there is to lose: Her parents. Her best friend. Her home. Even her face. She doesn't need a mirror to know what she looks like--she can see her reflection in the eyes of everyone around her. A year after the fire that destroyed her world, her aunt and uncle have decided she should go back to high school. Be "normal" again. Whatever that is. Ava knows better. There is no normal for someone like her. And forget making friends—no one wants to be seen with the Burned Girl, now or ever. But when Ava meets a fellow survivor named Piper, she begins to feel like maybe she doesn't have to face the nightmare alone. Sarcastic and blunt, Piper isn't afraid to push Ava out of her comfort zone. Piper introduces Ava to Asad, a boy who loves theater just as much as she does, and slowly, Ava tries to create a life again. Yet Piper is fighting her own battle, and soon Ava must decide if she's going to fade back into her scars . . . or let the people by her side help her fly.

2.”Faceless” by Alyssa Sheinmel

When Maisie Winters wakes up, she’s in the hospital. The last thing she remembers is running through the hills of her neighborhood one misty morning. Slowly, she puts the pieces together. Before she could make it home, a storm gathered. Lightning hit a power line and sparks rained down, the hot-burning electrical fire consuming her. Destroying her face. Where her nose, cheeks, and chin used to be, now there is…nothing. Maisie’s lucky enough to qualify for a rare medical treatment: a face transplant. At least, everyone says she’s lucky. But with someone else’s features staring back at her in the mirror, Maisie looks—and feels—like a stranger. The doctors promised that the transplant was her chance to live a normal life again, but nothing feels normal anymore. Before, she knew who she was—a regular girl who ran track and got good grades, who loved her boyfriend and her best friend. Now, she can’t even recognize herself. New York Times bestselling author Alyssa Sheinmel has created a gripping and gorgeously written tale of identity and love. This is a story of losing yourself and the long, hard fight to find your way back.

3.”Everything That Makes You” by Moriah McStay

One girl. Two stories. Meet Fiona Doyle. The thick ridges of scar tissue on her face are from an accident twelve years ago. Fiona has notebooks full of songs she’s written about her frustrations, her dreams, and about her massive crush on beautiful uber-jock Trent McKinnon. If she can’t even find the courage to look Trent straight in his beautiful blue eyes, she sure isn’t brave enough to play or sing any of her songs in public. But something’s changing in Fiona. She can’t be defined by her scars anymore. And what if there hadn’t been an accident? Meet Fi Doyle. Fi is the top-rated female high school lacrosse player in the state, heading straight to Northwestern on a full ride. She’s got more important things to deal with than her best friend Trent McKinnon, who’s been different ever since the kiss. When her luck goes south, even lacrosse can’t define her anymore. When you’ve always been the best at something, one dumb move can screw everything up. Can Fi fight back? Hasn’t everyone wondered “what if”? In this daring debut novel, Moriah McStay gives us the rare opportunity to see what might have happened if things were different. Maybe luck determines our paths. But maybe it’s who we are that determines our luck.

📚 Happy reading! As always, if you want to talk about anything, please reach out. We can rise from the ashes together.❤️‍🔥

#themightyreaders #burnsurvivors

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Genetic testing for the parents of a fanconi anemia child # fanconi anemia

Hi! I have 5 children and I’m 42. In 2006 my daughter had her stem cell (unrelated ) bone marrow transplant. She did very well long story short she is now 22 and has had skin cancer and was treated with removing the cancer. Now she was just diagnosed with thyroid cancer. Also something is going on with her liver, continuos elevated liver enzymes. We’re waiting on results from a ct at this time. February 12 she sees the doctor for a surgical consult and then will receive radiation
I’m worried since there still isn’t much research on how they are doing as adults
Also my youngest son has another inherent disease called hyperlipidemia. He sees a cardiologist annually to see when he will need medication for this. My daughter was diagnosed by geneticists. I requested a referral today to see a geneticist to see what I’m predisposed to. (I took my data from ancestry and uploaded it to genapp. And it’s loaded with all the genetics stuff. I have 9 dominant disease that I carry (not sure which will be the one that affects me)
I plan to show the geneticists. My whole family has all sorts of disorders mental and physical and quite a bit are hard to diagnosi. Especially with the auto immune area

Has anyone done this? Does anyone have an adult child after their transplant ? I would love to know how they are doing…any advice or tips?
Thank you

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I'm new here!

Hi, my name is aintgettinanydeader, AKA Jim
I was diagnosed with MDS-EB1 in 2020 and received an allo stem cell transplant in March of 2021.
Still beating the odds, and hoping everyone else is doing great as well!

#MightyTogether #MyelodysplasticSyndromesMDS

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A Thought About Mental Health Professionals

#I have been living with schizophrenia for almost 40 years. I have found that many people have the common misconception that just because someone is a mental health professional, they are able to speak with authority on any mental health condition. This is like saying that because someone is an MD he can function as a general practitioner one day, a brain surgeon the next, perform open heart surgery the following day and just for good measure do a liver transplant the next. Dealing with psychosis requires a special skill set that most mental health professionals simply don't have. In their ignorance many of them think that they are qualified to deal with psychosis simply because they are mental health professionals and psychosis is a mental health issue.#MentalHealth #Psychosis #BipolarDisorder #SchizoaffectiveDisorder #Schizophrenia #MedicalProfessionals

(edited)
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