u/Grouchy-Ad-1042

This all really started with Interstitial Cystitis (IC). About 6 years ago I started peeing blood, and after the whole COVID ordeal I finally got in with a urologist. Long story short, they did what they could and eventually sent me to University of Iowa — which was a mess in itself.

I spent a few months with urology doing DMSO treatments before starting pelvic floor PT. During one of my early appointments, my PT had just taken a class on Nutcracker Syndrome and said I matched the symptoms almost perfectly.

I had:

• Flank pain
• Trouble peeing
• Pain with urination
• Blood in my urine
• Trouble sleeping
• Night sweats
• Nausea/vomiting episodes

The biggest red flag for her was the amount of blood in my urine. It was consistent and much more than just a few drops. Apparently that is NOT a normal symptom of IC, which my doctor had completely overlooked.

We got in with vascular surgery immediately.

They did a venogram where they go through the leg artery with dye and a camera to check pressures and blood flow. Turns out my left kidney basically had no proper flow or pressure at all because the vein was completely compressed/collapsed. They said it qualified for immediate surgery.

Because I also have IC, I wanted vascular and urology to coordinate and make a full plan first. That turned into another nightmare. It took over 6 months because they kept communicating with the wrong doctors, not scheduling things correctly, delaying surgery, etc.

Eventually I finally had the surgery.

PRE-OP:
My surgeon told me this would be about a year-long recovery. She originally wanted monthly CT scans with contrast for the first year, possibly even 2 years, just to make sure everything stayed open and healthy.

I was told:

• 10 lb weight restriction minimum for 3 months
• Blood thinners for about a year
• Most people feel “90% better” after 2 weeks
• I’d mostly be bedridden for the first few months
• Hospital stay would probably be 1–2 weeks

Honestly, almost none of that ended up matching my experience.

THE SURGERY:
The surgery day itself was pretty standard at first:

• Full body surgical prep/shaving
• Multiple antibacterial washes
• IVs, check-ins, etc.

The surgery lasted about 8 hours.

From what I understand, they detached the vein, cleaned everything up, repositioned it lower, then reattached and tested blood flow. I was originally told the surgery would take maybe 3 hours max.

After surgery they let me sleep quite a bit because they expected me to be hospitalized for a while. I slept for almost 2.5 days.

Waking up was brutal. Even with heavy pain medication, you absolutely feel it. They push you to walk almost immediately. PT comes in fast trying to get you rolling over, lifting your legs, sitting up, walking, everything.

I also had an NG tube (tube into the stomach) for about 5 days to prevent vomiting and stomach issues. They wouldn’t remove it until I could pass gas/have a bowel movement or until output stopped. One guy there had his in for 3 weeks.

Once that tube came out though, recovery improved FAST. Every hour felt a little better after that. During that first hospital stay, your entire job is basically:

• Walk
• Rest
• Heal
• Repeat

HERE’S WHERE MY EXPERIENCE CHANGED:
I got home and honestly felt amazing at first. My incision looked good and recovery seemed to be going well.

Then 2 days later I woke up feeling like I was dying.

The flank pain was unbearable. I was dizzy, vomiting, sick, weak — something was clearly wrong. I went back to the ER.

Turns out I had a rare complication where the vein had partially come loose, causing internal bleeding. My bowels had also been injured, I was close to becoming septic, and my organs had started sticking together internally. Because I was down to around 100 lbs from my normal 150 lbs, they also had to do a fat graft to separate/protect structures.

I ended up back in the hospital for another week.

That stay was far worse.

I won’t go into every detail unless people want to know, but it was honestly hell. The NG tube stayed in almost the entire time. The pain was excruciating. I wasn’t allowed to sleep on my side because it could block the vein and risk kidney failure. I barely walked or even sat upright.

I genuinely fought every day just to get through it.

What shocked me most was that after BOTH hospital stays, they basically told me I could return to normal life pretty quickly — driving, walking, work, etc. That did not feel realistic at all.

GOING HOME:
Once I got home again:

• Walking hurt
• Sitting hurt
• Laying down hurt
• Basically everything hurt

I slept propped upright with pillows because I couldn’t lay flat. You’ll also have a huge amount of medications to manage multiple times a day, and hydration becomes extremely important.

At around 2–3 weeks, appetite slowly started returning.

THIS PART IS IMPORTANT:
Around the 2–4 week mark, you may suddenly feel WAY better. You’ll think you can go back to normal life.

DO NOT DO THAT.

Seriously. Take it slow.

I made that mistake. Other people around me also assumed I was “better” because I looked better, so they stopped helping me. I pushed myself too hard and it absolutely set me back. Not enough for another ER visit, but enough that I was back to barely walking and dealing with major soreness again.

At around 6 weeks I finally had follow-up imaging/check-ins (mine got delayed because of complications). Around this point PT starts introducing small twisting/stretching/core activation movements.

Again: take it slow.

I overdid PT too and caused more incision pain.

CURRENTLY:
I’m about 10 weeks post-op now.

I still have some flank pain. Sometimes it feels bubbly, throbbing, or swollen. But I no longer have blood in my urine.

I can walk around 15k steps or roughly 3 miles before I’m exhausted. I still get tired easily and usually need naps halfway through the day.

I’m also physically weak because I’ve barely been able to exercise or lift due to complications, and before all this I was a very active person.

I also paused my IC treatments because I want my body to fully heal first. Part of me also wants to see how much of my IC symptoms were actually related to the kidney compression. Doctors told me they don’t think the two are related, but they also admitted I’m one of the first patients they’ve personally seen with both conditions together.

One thing I wish someone told me:
There really aren’t clear recovery “milestones.”

Your progress depends entirely on your body and how much it can tolerate.

I started by walking tiny circles around my house with a cane. I’d sit in a chair just to cook or wash dishes. Recovery is a lot of resting, testing your limits carefully, then resting again.

Give your body grace. This surgery is no joke. You’re literally being cut open and rearranged internally.

Overall, if the pain I still have now eventually resolves and isn’t something like infection-related, then in my opinion the surgery was worth it.

And honestly, if I hadn’t had complications, I truly think I’d probably be close to normal again by now and slowly rebuilding strength.

Sorry this was so long and all over the place. I tried to include as much as I could remember, and there’s probably still more I missed. The hospital experience itself was a whole separate disaster that made things harder too.

If anyone has questions about:

• Symptoms
• Surgery
• Recovery
• Pain
• Complications
• Mental side of this
• Hospital experience
• Anything at all

feel free to ask. I’m happy to help however I can. We’re all in this together.

Im launched Jack's All In One Cleaning Services. I do home cleaning, declutter pet help and more!

Im booking for the Cedar Rapids, Iowa City Solan surrounding areas

The short version of how I got here — I've been dealing with health issues for years, spent a lot of that time at home, and cleaning just became my thing. I have 7 animals and I kept everything running while I was going through it. Turns out I'm good at it, so I made it a business.

Right now while I finish recovering from surgery I'm keeping jobs on the lighter side — standard cleans and some add-ons. Nothing crazy. But the work gets done right.

Here's what I offer right now:

🧹 Standard Clean — $120–$150

Kitchen, bathrooms, bedrooms, living areas, floors. About 2–3 hours.

Add-ons:

• Heavy pet hair — $35

• Inside fridge — $35

• Inside oven — $45

• Laundry per load — $25

• Dishes — $25

• Bed linens — $15/set

• Interior windows — $40+

Flat rate. You know the price before I start. Before and after photos on every job. If something gets missed I come back within 24 hours.

I have 7 animals so I know what a pet home looks like. No judgment.

Everything is open to conversation — just reach out.

📞 319-777-6035

Facebook : https://www.facebook.com/profile.php?id=61588972273381

📅 Book: forms.gle/Ni49SkNZJ68nEA3fA