u/New_Philosophy_6168

Hey MDS crew,

apologies for the long silence – I've been discharged for a good week now, and home life has mostly consisted of attempting to remember what "energy" feels like. Apparently my strength decided the hospital was a nicer place to stay and refused to come home with me. Vacuuming one room now qualifies as an extreme sport; I need a nap and a medal afterward.

Still, recovery is creeping forward in its own slow, stubborn way. Every day I manage a tiny bit more than the day before – today I even made it through loading the dishwasher without calling for backup. Progress!

The craziest plot twist happened while I was still inpatient: my mom passed away. Her funeral was today. The doctors were crystal clear – with my immune system basically on vacation, showing up in person was a hard no. So I joined remotely via FaceTime, sitting in my living room like the world's saddest Zoom participant. No regrets, though. She had been fighting severe Alzheimer's for 15 years, bedbound and completely unaware for the last 5. In a way, her passing feels like the long-overdue end of a brutal chapter. Relief wrapped in sadness.

Back to the main storyline: my first set of blood tests at home came back surprisingly decent. Almost everything landed within normal ranges – who knew the new cells could actually behave? Next Monday brings the real stress test: my first post-transplant bone marrow biopsy. Fingers crossed the sample comes back saying "yep, everything's rebuilding nicely," but as we all know, you never really know until the pathologist has had their coffee and delivered the verdict.

Thanks for sticking around through the quiet weeks. Your messages and good thoughts have been the unofficial soundtrack keeping me going.

How's everyone else doing? Any tips for turning "vacuuming = marathon" back into "vacuuming = minor chore"? Or just general post-discharge survival hacks? Sending you all steady counts and zero surprise infections from here

Hey MDS crew,

apologies for going radio silent for the past 10 days or so – I’ve been running on fumes and the hospital Wi-Fi wasn’t exactly inspiring poetry either.

The truth is, hospital life has a special talent for turning even the most energetic person into a professional bed tester. I couldn’t muster the strength (or the brain cells) to type a single update. But here’s the headline: I got discharged this Wednesday after a grand total of 4 weeks and 6 days in the fancy inpatient resort.

Picture this: it was basically our summer holiday combined with winter holiday, except instead of beaches and snowboarding, the activities were “stare at the same four walls,” “count ceiling tiles,” and “attempt to nap through the hourly vital-sign symphony.” And for almost a full week, I was upgraded to the deluxe isolation suite – no daily walks, no hallway parades, just me, my thoughts, and the thrilling question of whether the IV pole would win in a staring contest.

It was tough. Really tough. But now? Home sweet home. Sleeping in my own bed feels like five-star luxury I never knew I was missing. The pillow actually remembers the shape of my head, the blankets don’t smell like disinfectant, and best of all – no one wakes me up at 5 a.m. to ask if I’m still breathing.

I’m still tired (surprise), but it’s the good kind of tired – the kind that comes with freedom instead of fluorescent lighting. Slowly getting my bearings, enjoying small things like making my own coffee without begging for permission.

Thanks for the patience and the quiet support while I was offline – it meant more than you know. I’ll try to pop in more regularly now that I’m not technically a hospital resident anymore.

How’s everyone else holding up? Any homecoming rituals or small victories worth sharing? Sending you all the “own bed” energy from here.

Hey MDS crew,

it's been a while since the last update – sorry for the quiet. I've mostly been running on empty, spending way too much time horizontal in bed. That said, I've stuck to my daily walks around the ward corridors, even if they feel more like slow-motion shuffling than actual exercise.

Doc swung by today with the latest blood work: values are creeping upward, slowly but steadily. The catch? That's exactly why the energy tank is running so low right now – the new cells are busy rebuilding the factory, and that takes everything I've got. It's frustrating, but it's progress in disguise.

Home return isn't looking likely this week. Earliest guess is sometime next week, fingers crossed. Until then, it's more of the same: rest, walks, IV support, and trying not to overthink every little number on the chart.

Thanks for the patience and the steady stream of good thoughts – they land when I need them most. I'll keep you posted as things shift.

Hang in there, everyone. Slow and steady seems to be the name of the game these days.

Hey MDS crew,

Day +14 post-transplant check-in – and holy crap, we actually made it to the two-week mark without the universe imploding.

The past week or so? Let’s just say it was sponsored by “Exhaustion: The Director’s Cut.” Chemo decided to wake up a sleeping bacteria party (you know, the kind we all carry around like uninvited guests), and boom – instant VIP isolation for almost a full week. Door sealed, family on the other side of the glass like we’re in a bad sci-fi movie, me stuck in the room wondering if I’d ever see daylight again. Mentally? Yeah, that was a rough ride. Felt like my brain was doing push-ups in quicksand.

And then, for the grand finale, the mucous membranes from throat to… let’s just say “the southern border” got absolutely nuked. Swallowing felt like gargling broken glass mixed with hot sauce. I’ve had more fun at the dentist. But – plot twist – that nightmare is finally in the rear-view mirror. History. Done. Buh-bye.

The real good news? Blood values are starting to show the first tiny green shoots of recovery. Doc actually used the magic words: “We can start talking about repatriation instructions.” Aka: “You might get to leave this fancy prison hotel soon.” Mood? Sky-high. I’m basically floating. Started some light exercise now that I’m allowed to shuffle around the public corridors like a very slow zombie in training.

Bonus side quest: beard and hair have officially checked out. Completely bald and beardless. Last time this happened my gray beard came back snow-white like I’d aged 20 years in a week. Let’s see if round two brings me Gandalf vibes or just more “distinguished gentleman” energy. Place your bets.

Anyway, feeling genuinely hopeful for the first time in a while. Thanks for riding shotgun through the crap parts – your comments and good vibes have been the secret sauce keeping me sane.

Stay strong out there, you beautiful weirdos. Low drama, rising counts, and repatriation on the horizon.

Quick recap: SCT is done, those donor cells (yep, still rocking the girly squad) are officially in residence. The post-chemo phase hit like a freight train – spent a solid chunk of time glued to the bed, feeling like I'd run a marathon in zero gravity. Then bam, a little fever showed up (doctors were like "yep, totally normal, welcome to the party"), but it passed without turning into anything dramatic.

Right now? Actually feeling pretty decent – tired, sure, but the "can't-get-out-of-bed" exhaustion has dialed back to manageable levels. Still hooked up to a bunch of IV goodies to keep the side effects in check (hydration, anti-nausea, the usual cocktail), but no major complaints.

Mood is good, spirits high, and I'm just hanging in this waiting game for engraftment to really kick in. Docs say the next few weeks will tell the real story on how these new cells decide to behave.

Thanks as always for the support – reading your comments and messages keeps me going on the rougher days. I'll try to pop in more regularly now that the worst fog is lifting.

How's everyone else doing? Any fellow transplant peeps with tips for these early +days? Sending you all the steady counts and zero surprises vibes

Hey MDS crew,

it's your favorite stem cell squatter checking in from the isolation suite. Day +2 post-transplant (aka D-Day 2) report incoming!

Yesterday was basically a masterclass in advanced napping. Doctors were on high alert for the classic welcome party symptoms: fever spike or some exciting new rash to spice things up. Spoiler: nada. Zero drama, zero fireworks. My immune system is apparently too polite to throw a tantrum yet. I'm just sitting here like "anytime now, feel free to freak out, no pressure."

Visitors? Strictly limited edition. Wife gets VIP access (she brings snacks and doesn't try to hug me through the hazmat vibes), everyone else is on the "maybe in a few weeks if you're not coughing" list. I'm basically living the introvert's dream quarantine, except the snacks are hospital-grade and the Wi-Fi is moody.

Mood is surprisingly solid – optimistic, a bit bored, mostly just waiting for the plot to thicken. Next chemo round is looming like that awkward family reunion you can't escape. Docs casually dropped that post-transplant chemo might hit harder than the pre-game version. Great. Can't wait to level up from "exhausted" to "expert-level exhausted." Bring it on, I guess?

Oh, and the cherry on top: last night I had the mother of all horror-movie nightmares. Woke myself up screaming like I'd just discovered the monster was in fact my own reflection. So yeah, the classic "transplant psyche decides to troll you at 3 a.m." moment has officially arrived. At least it was entertaining for the night nurses.

Anyway, stay tuned – next update drops whenever my fingers decide they're not made of lead. Sending you all the low-drama, high-white-count vibes from my little bubble. Hang in there, you legends.

Hey MDS squad, greetings from the trenches!

Today is officially D-Day — yep, the big one. The fresh batch of stem cells is en route to the hospital like VIPs in an ambulance with sirens optional. The actual infusion will probably happen sometime this afternoon or early evening. So yeah, nerves are doing the cha-cha right now. Buckle up, it's gonna be a wild ride.

-2 Day was a straight-up disaster movie. I bravely decided to peek at my bone marrow biopsy results. Spoiler: the sample quality was hot garbage (technically speaking, "suboptimal" or whatever doctor-speak they use). I had already mentally written my obituary and started practicing dramatic goodbyes when the doc casually goes "nah bro, that's normal, chill." Cue me climbing out of the existential pit I dug for myself in about 45 seconds flat. Classic overthinker move.

-1 Day (aka yesterday) felt like someone parked a truck on my soul. That pre-chemo cocktail they hit me with? It's basically the nuclear option from the pharmacy's "do not touch unless you hate joy" shelf. Strongest stuff they got. Spent the whole day alternating between "why is the room spinning" and "please let me just evaporate." Recovery mode: engaged. Misery level: expert.

But hey — as I said at the start — TODAY IS THE HUGE DAY. The next few weeks are gonna be the ultimate plot twist: will these newbie stem cells find their way home like lost puppies, set up shop in my bone marrow, and start cranking out decent, functioning blood cells? Or will it be more of a "whoops, wrong neighborhood" situation? Stay tuned, same bat-time, same bat-channel.

I'll keep dropping daily updates as long as my fingers (and brain cells) cooperate. Y'all hang in there too — sending you all the good vibes, clean blood counts, and zero surprise side effects.

Take care, you beautiful weirdos.

Hello MDS community,

Quick update from the chemo lounge – we're at -3 days until transplant day, and the pace is picking up... or slowing down, depending on how you look at it.

Last night I took the sleeping aid pill again, and it worked like a charm – slept like a baby all the way through, no nightmares this time. No dragons, no mermaids, no redecorating disasters. Just peaceful, uninterrupted rest. My inner bulldog must have decided to take the night off.

Today was the final pre-chemo treatment session – next two days are all about rest and letting the body recover a bit before the big day. But I can feel the chemo kicking in quite hard now: some nausea creeping up and a deeper fatigue that's making everything feel heavier. I tried to do my usual light exercise, but nope – no strength for it today. So I've been staying in bed, watching the Winter Olympics. Nothing like cheering on athletes from under the covers while your own "event" is "surviving the IV drip marathon." At least the curling is oddly relaxing.

Overall, the mood is still positive, but today's been a reminder that chemo doesn't play fair. Thanks for all your supportive comments – they really help keep the spirits up on tougher days like this.

Greetings from the bed fort. Until tomorrow's update on day -2!

Take care, everyone, and if you've got tips for handling the nausea or fatigue waves, share away.

Hello MDS community,

Quick update from the chemo lounge – we're now at -4 days until transplant day, and the nights are keeping things interesting.

I took the sleeping aid pill again last night. This time it worked... too well, in the wrong direction. No dragon battles, no mermaid dances – but I did have a proper nightmare. Before I spill the details, a quick note on my personality: my spirit animal is an English Bulldog. Stubborn, a bit grumpy, and slow to accept change. Years ago we had a big, fat male bulldog who refused to accept a new puppy we brought home. He barked at the poor thing for a solid week before grudgingly tolerating it. That's me in a nutshell – I dig in my heels and take my time warming up.

So back to the nightmare: I woke up at 04:35 a.m., heart racing, remembering this bizarre scene. I was shopping with some strange woman in a store, picking out dark red wallpaper for my hospital room. Dark red! In a hospital! Clearly my subconscious is trying to redecorate this place into a horror movie set. Thanks for that, brain – very helpful during chemo.

The chemo treatment is rolling on normally: Fludarabine-NaCl (93 mg) and Busulfan-NaCl (240 mg) infusions continue. I can feel the fatigue creeping in a little, energy levels dipping as expected, but overall my mood is still super good. Humor is flying high, and I'm in a genuinely positive headspace – the bulldog in me refuses to roll over just yet.

Today was a busy one in the best way: lots of visitors! My daughter and her boyfriend dropped by, and my wife swung in too, bringing some really nice homemade food. Hospital food is... let's just say "questionable" at best. Nothing beats a home-cooked meal when you're living on IVs and mystery trays.

Huge thanks for all your comments and support – they keep me going and make these days feel less like a solo mission.

Greetings from the chemo lounge – until tomorrow's update on day -3!

Take care, everyone, and keep sharing your stories. If you've had wild chemo dreams or tips for keeping the mood up when fatigue hits, drop them below.

Hello MDS community,

Time for a quick update from the chemo lounge – we're now at -5 days until transplant day, and things are moving along.

Remember my first steroid night? Only 45 minutes of sleep, ceiling became my new best friend. Last night I took the sleeping aid pill, and wow – it did the trick. Fell asleep around 22:30 and didn't wake up until the nurse came in at 08:30. No epic battles with imaginary dragons, no underwater dances with mermaids... just solid, glorious baby-like sleep. Who knew a little pill could turn me into such a champion sleeper? Felt almost normal for a change.

The new chemo round started today: next few days bring Fludarabine-NaCl infusion (93 mg) and Busulfan-NaCl infusion (240 mg). It's the classic conditioning combo to make room for the new stem cells. So far my general feeling is pretty good – a bit tired, but nothing dramatic yet. I can sense the chemo starting to kick in slowly, like a quiet engine warming up in the background.

Thanks again for all your kind comments and support – they really brighten these hospital days and make me feel less alone in this.

All the best to everyone out there. Until tomorrow's update on day -4!

Take care, and keep fighting the good fight.

Hello MDS community,

Another day has slipped into evening, and here we are at -6 days until transplant day. The steroid-fueled night was... memorable, in its own special way.

I did not end up fighting dragons or any other mythical beasts. I actually fell asleep right around midnight, which felt like a small victory. Then came the wake-up call at 00:45 – and that was it for sleeping. The rest of the night I spent wide awake, getting intimately familiar with every square inch of the hospital ceiling. It was an interesting experience, to say the least.

Living on an island has its perks: nights are usually silent except for the wind and waves. Here in the city, though, traffic noise never really stops. Around 3 a.m. the local Joe Average (think young guy in a tuned-up BMW doing endless laps with loud music and revving engine ) finally called it a night. The silence after that was almost deafening.

Today I will definitely request a sleeping aid pill. It will be fascinating to see what kind of dreams follow – will I battle imaginary dragons, or perhaps dance with mermaids under the sea? Either way, I am prepared for adventure.

Physically my condition feels normal, and mentally I am in a super positive place. I have even started some light exercise, which helps pass the time and keeps the energy flowing. And I drink about gallon of water every day.

The current chemo round ends tomorrow, but they will switch to another one right away. For those who asked: right now it is a Thiotepa-NaCl infusion (Thiotepa diluted in sodium chloride). It is a bit odd – I have to shower every six hours and change pajamas each time to avoid skin irritation or other side effects. Hospital life has its routines.

A huge thank you once again for all the kind comments and support. Reading your experiences and encouragement makes this journey feel much less solitary. It truly helps.

Over and out for now – until tomorrow's update on day -5 and whatever the new chemo brings.

If you have tips for handling the steroid insomnia or making the most of these pre-transplant days, please share. Take care, everyone.

Hello MDS community,

Today marks exactly -7 days until my stem cell transplant day. I am looking forward to it with real excitement – the countdown feels strangely energizing, even if the road ahead is long.

The pre-chemo treatment began this morning, and so far everything has gone smoothly. The IV cortisone is the unexpected highlight of the day. The doctor warned me about its two main side effects, and both are proving true already.

First, it gives a significant energy boost – and he was not exaggerating. I feel more awake and alert than I have in years, as if someone flipped a switch and suddenly time is speeding by. Who needs caffeine when the hospital provides this kind of fuel?

Second, it makes falling asleep difficult, and if sleep does come, vivid nightmares are common. Tonight will be the first real test – I will report back tomorrow on whether I spent the night battling imaginary dragons or simply staring at the ceiling.

I am still waiting for the bone marrow biopsy results, but no news yet means nothing alarming so far.

A big thank you to everyone who has commented on my previous post. It means a lot to connect with people who truly understand this journey, even if we are strangers. Your words make the days feel less isolating.

Stay tuned for the next update – I will share how the steroid night went and whatever day -6 brings.

Folks, I got my MDS diagnosis last week in April 2025. Finally, I'm at the beginning of my SCT journey. It was a painful process to find a suitable donor. I contacted the local Red Cross, and we made a video that was seen by 60k people. I'm not sure if it did the job, but in November, I got good news. Today, they took my bone marrow biopsy. Tomorrow, they start the pre-chemo treatment, which will last a week. Next Friday is the day when I get the stem cells. I'm male, and I'll be getting cells from a woman—let's see how it changes me! I know for sure that my blood DNA won't be the same after the treatment. Stay tuned for updates on how the process goes.