Transplant

Hi, my name is Nikki. I'm here because I've got a kidney transplant and live with heart failure and osteopenia. I'm waiting on assessment for autism and ADHD.

#MightyTogether

Salma had always been careful—careful about what she said, what she showed, and what she hid. A five-year post-transplant recipient, she had spent years learning how to blend in. Diagnosed with chronic kidney disease in grade 7, she had endured six months of peritoneal dialysis before receiving her renal transplant. Now, in her first year of B.Sc. Biochemistry, she had perfected the art of invisibility.

No one at college knew about her past. The scar on her neck, where the dialysis catheter had once pierced her jugular vein, remained hidden beneath the folds of her hijab. The tremors in her hands, she dismissed as nervousness. The immunosuppressant pills, she took in the privacy of her home. Even her hospital visits, scheduled on Wednesdays, were easily concealed because she had a day off.

That Monday, her chemistry practical required her to identify an unknown organic compound. The choices were phenol, aniline, benzaldehyde, glucose, benzoic acid, phthalic acid, urea, and benzamide. Salma got glucose, and she recognized it immediately—just from its physical appearance. She carefully performed the solubility test, then proceeded with Molisch’s test, Fehling’s test, and Tollen’s test. The results were unmistakable. The violet-colored ring of the Molisch’s test and the silver mirror formed in the Tollen’s test were almost beautiful, shimmering under the laboratory lights.

Satisfied, she stood in line to report to the professor. She had gone over the procedures in her mind, confident in her explanation. But when it was her turn, she lifted her first test tube—and her hands began to tremble.

The professor, seeing her struggle, didn’t press her for answers. Instead, he simply asked for her roll number and the compound she had identified, then sent her away.

Salma walked back to her seat, her heart sinking. She should have been relieved—she wasn’t questioned, she wasn’t embarrassed—but all she felt was rage at her own hands.

She wasn’t nervous.

So why did her hands betray her?

That afternoon, she lay on her bed and cried herself to sleep, hating her body for refusing to stay silent. She imagined her hands trembling even in death—as if they wouldn’t stop until the whole world knew her story. Until everyone understood what she had survived.

But was it truly her fault?

No.

Her tremors weren’t a sign of weakness, but the lingering effects of survival. The culprit was Tacrolimus, the very drug that kept her transplant safe. A powerful immunosuppressant, Tacrolimus disrupted calcium signaling in neurons, causing them to fire excessive, uncontrolled impulses, leading to hand tremors and neuropathy. Years of kidney failure before the transplant had also exposed her brain to uremic toxins, altering neurotransmitter balance in ways that couldn’t be undone overnight.

And then, there was the adrenal connection. The kidneys sat close to the adrenal glands, which controlled stress hormones like adrenaline and noradrenaline. The trauma of surgery, the long battle with CKD—something in her autonomic nervous system had shifted, making her body overreact to stressful moments.

The tremors weren’t hers to control. They were the silent echoes of everything she had been through.

And yet, here she was. In a lab coat, performing experiments, building a future.

Her hands trembled, but she was steady.

Her body still carried traces of her past, but she was moving forward.

And that, more than anything, meant she had already won.#chronic #renal #diagnosisjourney

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine

I have been diagnosed with a couple mental health illnesses for a long time. Doing pretty good on that front.

About 2 years ago we added severe interstitial lung disease to the mix. The doctors have no idea how/why it happened but they were pretty doom and gloom. Recently I’ve started to improve a lot. Everyone around me is happy. My pulmonologists are surprised and optimistic. My family is over the moon. I may live longer, I won’t need the double lung transplant, heck, I may not need to be on oxygen at all.

So then, why am I so very scared? #InterstitialLungDisease #BipolarDisorder #PanicDisorder

I am having the worst Fibro Flare I have ever experienced. This time my whole body ached and was super sensitive to anything it touched. I have a constant headache, diarrhea, abdominal cramps, brain fog, no appetite and swelling in my hands and feet. However this time my blood pressure rose a lot and I had fever and chills. I take Duloxetine every day to help manage the fibro. This time I had to take Dicyclomine for the gut and Gabapentin for the headache and nerve pain. I also took Tylenol for the fever and chills. I had a kidney transplant 7 years ago which means I have to be careful of the medications I take. Has anyone noticed their symptoms getting worse?

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

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