Rare Disease

Today i reflect on the amazing people on this forum thank you mighties for lending me your ears through triumphs and fears.💙 Thought i would share some pics of tge flowers on the patio because like them the mighty brings me peace 🙂☀️#Depression #MuscularDystrophy #RareDisease #Anxiety #Fibromyalgia #alodynia #Hyperalgesia #DegenerativeDiscDisease

When you live with health conditions, it’s so important to build and practice habits that help you conserve energy (since spoons are already limited to begin with!). 🥄

What small things, tools, or modifications do you use throughout the day to help keep your “battery” charged?

Let us know below! 🔋

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #ADHD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

The urine is red.

I'm standing in the bathroom holding my four-year-old son by the shoulders, because he can't stay on his feet by himself. It's Wednesday, February fourteenth, four thirty in the afternoon. Outside, it's getting dark. My son is urinating blood.

Three days ago he was diving in a hotel swimming pool.

***

Winter break was supposed to be a rest. A week at a hotel, two and a half hours from Kraków. Pool, skiing, peace and quiet. Wojtek can't swim, but that was never an obstacle — he jumps in, takes a breath, plunges his head under as far as his arms gripping the edge will allow, and surfaces with a shriek of joy. "Look, daddy" — every single time, as if he were showing me for the first time.

On Sunday the weather is bad, but we have the pool. On Monday the rain is so heavy we cancel skiing — no point in torturing a four-year-old in this weather. Pool again. Wojtek doesn't care. For him the whole world is warm water and a dad to show off to.

On Tuesday evening I'm reading him a book after the pool. He falls asleep mid-sentence. Wakes up an hour later, wet — he's wet the bed, which never happens. I touch his forehead. He's burning.

A night at the hotel. Fever managed with alternating paracetamol and ibuprofen. Magda and I circle the bed like sleepwalkers. Thermometer every hour. Every hour the same question, which neither of us says out loud.

In the morning we decide: we're going home. We pack the car. We leave the hotel with an absurd sense of irritation at having to write to management for a refund on the rest of our stay. The mind latches onto trivialities when it doesn't yet know what's coming.

Two and a half hours of driving. Near the end, a quiet voice from the back seat:

— I'm going to throw up.

***

Morning at the doctor's. I talk about the fever, the vomiting, the wet bed. The doctor examines Wojtek and notices petechiae — tiny red dots on his skin that weren't there yesterday. The test shows influenza A. He prescribes medication.

We buy it at the pharmacy. Give it to him immediately. Wojtek lies down all day. Complains about his stomach. Vomits. Won't eat anything, nothing helps.

And then, at four thirty, he says he needs to pee. He's so weak I walk him to the bathroom. Hold him by the shoulders. He sits down.

Blood.

For a moment I just stand there and look. The brain registers the image but refuses to process it. Then I grab the phone. We spend half an hour on hold with our private healthcare provider. Can't get through. We call another clinic. They direct us to the John Paul II Hospital.

The hospital complex at night looks like a maze — enormous, every building the same. We drive around the grounds, lost, Wojtek lying in the back curled up on his side. "My stomach hurts" — he repeats, each time quieter.

Infectious disease ward, second floor. They draw blood. Three attempts before they find a vein. Wojtek screams but doesn't cry — he's too tired for that. Magda holds his hand and speaks in a calm voice. I stand by the door, because in the small room there's no space for three adults with a child.

We wait for results. The hours drag.

At midnight they connect plasma. At one in the morning the doctor says something that changes the scale of the problem. The flu is now the least of our worries. Platelet count: twenty thousand. Normal is a hundred and fifty thousand. It's progressing very fast — yesterday he only had a fever.

Wojtek is asleep. Wired up completely — IV cannulas in both hands, monitor, pulse oximeter on his finger. Four years old. He should be sleeping in a hotel bed.

I text Magda. It's one in the morning, Valentine's Day. "Best Valentine's Day ever." She replies: "Life surprises."

First diagnosis: sepsis.

***

The next day Wojtek is transferred to the pediatric nephrology ward at the university hospital in Prokocim. An isolation room — bed, IV drips, monitors. Cannulas in both hands, cables, sensors. Magda has a cold and can only be with him during the day. I stay overnight — the only healthy one.

On Friday they convene a case conference. There's no E. coli in the stool, but in addition to the flu there's parvovirus, and two strains of staphylococcus are growing in the cultures. The doctor comes in the afternoon. Speaks calmly, matter-of-factly. Magda writes down on a piece of paper the words that will change our lives: atypical hemolytic uremic syndrome.

aHUS is a disease most people have never heard of. The complement system — one of the body's immune defense mechanisms — instead of protecting, begins attacking its own blood vessels. It destroys red blood cells, blocks the small vessels in the kidneys, heart, brain. Without treatment, it leads to multi-organ failure. For decades there was no medication. For just over a decade there has been eculizumab — a biological agent sold under the name Soliris, one of the most expensive drugs in the world, costing hundreds of thousands of dollars per patient per year.

Incidence rate: 0.0.0.23 per hundred thousand people annually. My son won that lottery.

We're enrolled in a drug program. Minimum one month in the hospital. Magda joins a Facebook group for families with aHUS. Everyone says things are good now, because the drug exists. That before, there was nothing. It's a consolation I can't take comfort in.

Friday evening. They administer Soliris, then transfuse blood. The effect is immediate — Wojtek, who for two days had been lying there like a shadow, lifts his head and laughs at Winnie the Pooh on the tablet. For a moment everything looks normal. Hope in a hospital is dangerous. It arrives fast and loud — and then vanishes and leaves you empty-handed at three in the morning.

***

Saturday and Sunday are a constant battle with blood pressure. Albumin, diuretics, IV drips. Urine output keeps dropping. Forty milliliters. Thirty. Fifteen.

On Sunday: zero. The kidneys have stopped.

Decision: peritoneal dialysis. Surgery to place a catheter in the morning.

On Monday I sit with Magda on plastic chairs outside the operating room. I text the family group chat on Signal: "waiting." Half an hour later: "waiting." And again: "waiting." Magda sits beside me. We don't talk. There's nothing to say.

At eleven twenty they take him in. The operation lasts two hours. At twelve forty-three the catheter is in place.

Dialysis begins. Every hour. Around the clock. Nurses come in non-stop — medications, changing bags, checks. Wojtek can't drink for three days. Can't eat. Has to lie flat.

— I want to drink — he says.

We give him water from a syringe, a few milliliters at a time.

— I want to drink NORMALLY.

Then louder:

— I HAVE to drink.

He's four years old. He doesn't understand why the adults who are supposed to protect him are refusing him a glass of water. I don't know how to explain it to him. I don't know if I should try.

In the evening Magda stays with him for the night. I go home to sleep. In the hospital parking lot I sit in the car and can't move.

Magda texts: "Go to sleep. If you collapse, I'm left here alone with him. I'm serious."

She's right.

I drive.

#RareDisease #AHUS #kidneydiseas #HospitalLife #ParentingWithIllness #ChronicIllness #pediatricicu #pediatricicu

Hi, Mighties!

This week our self-care challenge topic is all about cleaning. Yup, that recurring responsibility we know all too well. 😬

When it comes to tidying and de-griming, we may find that our health conditions impact how and when we approach and tackle certain tasks — which is totally normal by the way, no judgment here!

For example, disabilities can make it hard to dust certain shelves, chronic fatigue can make untangling the vacuum an Olympic sport, or depression can turn us apathetic and numb to our surroundings.

What’s your relationship to cleaning and health?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

We all have different levels of responsibilities, tasks, and daily chores that take up a portion of our day and brain space because, well... we just have to get them done. (Adulting is #fun!)

But, do you ever feel like there’s one or more of those things that take up much more time than it has to and could use a revamp or different approach?

For Mighty staffer @sparklywartanks , that “thing” is how long it takes her to send a detailed email. She could benefit from simplifying how often she rereads and contemplates her message so she feels more confident and can get her work done with less time and energy.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Whether it’s finding a better system to store your food, or taking unused clothes or shoes to be donated; to readjusting your furniture so you can move around your home more comfortably, different actions can be taken to simplify your living space — especially if you find you want to make some changes but don’t exactly know where to start.

What would simplify your living space and make it more comfortable for you?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Simplifying our lives requires us to examine and reflect on the different aspects of our daily routines, habits, and surroundings; and take out, change, or adjust what we feel isn’t necessarily adding value to our day-to-day. That can even mean looking through our belongings to see what we have, but rarely (or ever) use.

As you take a look around, what can you find that you own that you don’t use or haven’t used in a really long time? What can you do with that belonging that will help simplify that "clutter"?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie