Transplant

Hi, my name is Docj22. I want to share something I’ve kept mostly to myself for a long time.
I’ve lived with keratoconus since childhood. From the outside, I may look fine, but my days are never completely normal. Sometimes simply making eye contact, keeping my eyes open, or seeing someone clearly can be difficult.
I started wearing glasses around fourth grade and was embarrassed to put them on. I struggled to see in class but pretended I was OK. In 1992, I was diagnosed with keratoconus. As my vision worsened, I wore rigid gas permeable lenses that sometimes felt like glass scratching my eyes.
Basketball was a huge part of my life, and I played through my freshman year of college. Then, in 1999 at 19, I woke up one morning with a haze over my eye and could barely see. My keratoconus had progressed severely, and I needed a corneal transplant. Because a significant blow to my eye could put my vision at risk, basketball was over. There was no final game or farewell.
In 2000, the same thing happened to my other eye, and I needed a second transplant. My vision and surgeries also disrupted college and caused me to miss several semesters.
I’m incredibly grateful my parents had excellent medical insurance. I received the care and surgeries I needed without the added fear of whether we could afford them. I know many people don’t have that privilege, and it hurts knowing that access to vision saving care can depend on someone’s resources.
More than 25 years later, keratoconus is still part of every day. Scleral lenses gave me useful vision again, but they come with their own challenges. Some mornings I repeatedly insert a lens only to find an air bubble, remove it, clean it and start over. There are days when the pain is so bad I can’t wear my lenses or go to work. I deal with irritation, allergy bumps under my eyelids, cloudy lenses and sudden episodes of intense pain.
I carry lens supplies almost everywhere and constantly think about whether my vision will stay clear enough to drive or make it through the day.
For years, I didn’t consider myself disabled because I worked, raised a family and built a career. I now understand that invisible disabilities are still real.
I became a husband, father, friend and leader. I built a life I’m proud of.
For years I thought strength meant suffering quietly. I don’t believe that anymore.
If you’re living with keratoconus or another invisible condition, it’s OK to say that some days are hard. Your struggle is real even when others can’t see it.
I’m grateful that I can see my wife and children, work, laugh and live.
Keratoconus changed my life, but it didn’t take my life.
And you’re not alone.

Hello! I am new here, post kidney transplant - it has been a long, hectic ride. I don't understand what or how to deal with this. What are you guys doing?

When I heard about Selena Gomez's Transplant, I felt a little less lonely. I wonder if meeting more people like me would make me feel better about the situation?

It’s officially fall. The potatoes have been dug; the tomatoes have been harvested and pulled up; will need to pull up carrots and transplant several lilies and other plants. A little at a time as I tire easily. But the temperatures this week are perfect for doing all these tasks. I’m waiting on an order of bulbs (tulips, daffodils, etc) to enhance one bed. I feel really good about my gardening accomplishments this season. Canned 27 jars of tomato soup and 20 jars of purée. Froze corn and beans. Just a little at a time adds up to a whole lot by the end of the season.

Hi, my name is MarissaNicole. I'm here because I want to tell my story about being diagnosed with Aplastic Anemia at a very young age and then being diagnosed with epilepsy years later .
What Happened Is Part of Me, Not All of Me

What Happened Is Part of Me, Not All of Me

The Story of Marissa Nicole

My name is Marissa but most people know me as Rissa.

If there is one thing I want you to know before you read another word, it's this:

What happened to me is part of my story, but it is not my identity.

People often hear words like brain hemorrhage, coma, aplastic anemia, or epilepsy and immediately feel sorry for me. They see the diagnoses before they see the person. But I don't want pity. I want people to see proof that even after life knocks you down, you can still stand back up.

This isn't just a story about surviving illness.

It's about surviving fear.

It's about surviving the moments when I wondered if my life would ever be normal.

It's about learning that strength isn't pretending nothing happened. Strength is accepting what happened, carrying it with you, and still choosing to live a full life.

I hope that if you're reading this while you're scared, angry, or asking, "Why me?" you'll realize you aren't alone.

Because I asked those same questions.

And I'm still here.

Chapter One

From Fox Lake to Fighting for My Life

My story begins in Fox Lake, Illinois, where I grew up with my mom and dad. For the first seven years of my life, everything felt like a normal childhood. I laughed, played, dreamed, and never imagined that my entire life was about to change.

One night, while I was asleep, I suffered a brain hemorrhage that caused me to have a seizure. My parents had no idea that when they put me to bed, everything would be different by morning.

The situation became so critical that I had to be flown by helicopter to Lutheran General Children's Hospital in Chicago.

Doctors searched for answers and eventually discovered something much bigger than anyone expected.

I was diagnosed with a rare blood disorder called aplastic anemia. My body wasn't producing enough healthy blood cells. My white blood cell count was dangerously low. My platelet count was dangerously low. My body couldn't fight the battle it was facing on its own.

Soon after, I slipped into a coma.

For my family, every day became a waiting game. Every conversation with doctors carried uncertainty. Every moment was filled with hope mixed with fear.

To survive, I needed countless treatments, blood transfusions, and eventually a life-saving bone marrow transplant.

The months that followed were some of the hardest of my life, even though I don't remember every detail.

I spent nearly nine months confined to a hospital bed.

When I finally woke up, surviving wasn't the finish line.

It was the beginning of another fight.

I had to learn how to walk again.

I had to learn how to talk again.

I had to rebuild muscles that had forgotten how to move.

Simple things most people never think about became mountains I had to climb.

Just when it felt like I had overcome one battle, I faced another. I spent more time at Children's Hospital of Wisconsin in Milwaukee, where I became bed bound again and came frighteningly close to losing my life a second time.

Eventually, around the age of nine, I walked out of the hospital.

I was finally cured.

The scars didn't disappear.

The memories didn't disappear.

The fear didn't disappear.

But neither did I.

Looking back now, I don't see a weak little girl.

I see a warrior who refused to quit before she even understood what the word "survivor" meant.

That little girl had no idea what the future would hold.

She couldn't have known she would one day face epilepsy.

She couldn't have known anxiety would become another mountain to climb.

She couldn't have known there would be days she'd question why all of this happened to her.

But she also couldn't have known something even more important.

She was going to make it.

And years later, she'd be telling her story—not so people would feel sorry for her, but so someone else could believe they could survive too.

#YouAreNoAlone

Hi, my name is FierceArt55. I'm here because I have medical PTSD from treatment for several serious cancers. I had a bone marrow transplant in 1986 for Hodgkin Lymphoma and have recently been treated for breast cancer. I have seen the best and worst of caregivers and healthcare providers, and am looking for support for trauma and cancer survivors.

#MightyTogether #Anxiety #Depression #PTSD #Cancer

Hi, my name is CabbageTrader.42 yr old daughter needing liver transplant? I am not ok with medical industrial complex handling of her.

Hi, my name is Bluebird888. I'm here because I need another new heart. I’ve had a transplant since I was 17 months old, but never felt different until recently. It’s all quite overwhelming to process and accept. Looking for people/a community that wants to talk about living a “normal” yet not-so-normal life and how to balance it all.

#MightyTogether

Hi, my name is AndrewMcgarrigle1. I'm here because I'm really struggling with emotional personality disorder my symptoms have flared up over this holiday period it was my birthday in December I feel so alone I had a liver transplant 2 years ago won't go into it but this time of the year is always the hardest I have no one to reach out to either.

#MightyTogether #MentalHealth