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Memory of lupus!!

Hey everyone 😊 Just wanted to share a bit of my journey. Earlier this year, things got really rough for me. The main blood vessels in my chest were blocked, which made things a lot more serious. The doctors told me I needed another central line procedure. I went in calm, thinking, "I’ve done this before, no big deal."

But the next day, right in the middle of it… my heart stopped 💔 They had to bring me back and put in an external drain to remove excess blood from around my heart. My world flipped upside down in that moment. Since then, I’ve been dealing with depression, panic attacks, and honestly… I feel like hope just isn’t there anymore. I wonder if I’ll ever get a kidney transplant or feel "normal" again.

What breaks my heart the most is being away from my kids 😔 As a single mom, I just want to be there for them, but my health keeps getting in the way. They’re always in my heart and prayers, and I hold on to the hope that one day, I’ll get to be with them fully 💙

Thank you from the bottom of my heart to everyone reading this, for all the love and prayers. I’m sending so much love back to each and every one of you 💫🙏

#ChronicFatigue #lupusfighter

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I'm new here!

Hi, my name is Wisam_khalaileh. I'm here because I have a kidney fauiler problem and I need a life saving kidney transplant 😔

#MightyTogether

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Relationships & defeats where do we discuss that?

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

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Petrified. And the normals don’t get it.

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

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Recent Fibromyalgia Flare is the worst ever.

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?

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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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