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Where’s My life going?

Started right after high lost a university had to go to a Jc got two degrees now. During this had Hodgkins twice and a bone marrow transplant. Got into 3 different relationships. 1st one is my rapist the 2nd treated me like I wasn’t there barely answering calls always canceling most of the time without telling me then blowing me off. The 3rd was amazing never been happier then he leaves me saying his life is too complicated and then ghosts just like that. I’m devestated and havent been the same. Tired of being on the endless rollercoaster never knowing if my life will take off. Still stuck in a minimum wage job at 33 unable to get something else have tried. Still trying to see the positive but it’s hard to pretend it is all great. When life keeps slapping me back in the face laughing at saying you thought you were doing better here is another problem.

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I'm new here!

Hi, my name is Rod.

It is great to have come across this group! If I may, please allow me to introduce myself.

I am fortunate to be the President and Founder of CF Vests Worldwide, in addition to being a CF patient who underwent a bilateral lung and liver transplant in August 2017. CF Vests Worldwide is a small non-profit that has donated over 380 cystic fibrosis vests to patients in more than 60 countries.

As we mark our 5th anniversary this year, we’re expanding to help U.S. CF patients too.

Our mission is to make these essential airway clearance vests accessible everywhere, including Cystic Fibrosis patients in the United States who are underinsured or who have no insurance. Our vest donations are primarily geared toward those who can’t afford them, as is the case with most CF patients globally.

Thanks for reading, folks, and take good care!

Rod
#MightyTogether

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Cancer change my life but I didn’t take it

Cancer changed my life—but it didn’t take it. As a survivor and a hair transplant surgeon, I now see healing through a new lens. Every scar tells a story, and every day is a gift. Grateful for the journey, and here to support others on theirs.

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|+_)(*&^%$#@!*-+

I did not know what my title should be since I am having some major issues right now because of all my autoimmune diseases, mental health issues, and a host of other medical problems. I am having a major problem focusing on one task and getting it done. While I am trying to accomplish that task another task surfaces in my brain and I tell myself I should do that one because it will make the first task easier to finish. Before I can get started on any task a whole host of other tasks I need to do. That's when I become so overwhelmed I don't do anything. That is when the anxiety and depression over take me and I just shut my brain down so I can cope. I would like to see a psychiatrist but have been unable to find one who accepts insurance and we cannot afford to cash pay. I also suffer with #Fibromyalgia , #Bipolar2 , #PTSD , #ChronicPain , #MixedConnectiveTissueDiseaseMCTD , #GranulomatosisWithPolyangiitis , Buerger's Disease, #Kidney Transplant, #type 2 Diabetes, #Brain Fog

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I’m new here!

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

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The Silent Tremors of Survival

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

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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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