Spleen surgery—need some advice!

I really need some advice here!

My boyfriend has been in the hospital since early September.
He’s been diagnosed with immune thrombocytopenia...
He’s already gone through rounds of Cortisone, corticosteroids, IVIG, and even a platelet transfusion! But nothing seems to be working; his platelet count just won't budge past 20.
Today, brightbear38 shared his latest results 🙂 right when we were finally starting to feel hopeful that he might actually get to come home this weekend...
His hematologist has brought up surgery—specifically a splenectomy to remove his spleen—several times now. Since we were pinning all our hopes on the medication working, we didn't even want to consider it... but it looks like that moment has arrived. 😢 The doctor mentioned that if they go through with it, the procedure would most likely happen at a major hospital in Chicago, maybe something like Northwestern Memorial...
I was wondering if anyone here has had surgery there? What is the staff like? How is the nursing care? Has anyone else gone through a splenectomy? How did you feel afterward? Is it true that you tire out much faster and become more prone to infections than someone with a spleen? Also, does anyone know what the daily room rates are usually like there?

Do you know anyone who has been through this, or maybe you've had the surgery yourselves? Does having thrombocytopenia increase the risks during the procedure? How long is the recovery period, both in the hospital and overall?

Any help or information would mean the world to us. Please help!

The fact remains: there isn't just one single reason why someone ends up having their spleen removed. The medical indications vary wildly depending on the situation.

It’s listed right there. One of those factors causes certain cells to break down and then pile up in the spleen, which ultimately prevents the body from functioning the way it's supposed to.
I don't know the surgical team personally.
When it comes to the actual surgery, you're looking at two main options: either they go in laparoscopically or they make a classic incision under the left rib cage.
Surgery itself shouldn't be the part that gives you any real trouble.
If you actually look at the literature, there are about 18 different complications already documented. Why aren't more people talking about this?
As far as I'm concerned, the procedure mentioned here is nothing more than a routine operation.
Since we’re dealing with a young man here, extra caution regarding infections is non-negotiable. Why? Because the incidence of pneumococcal sepsis in this specific patient demographic is significantly higher. It's a risk that simply cannot be ignored.
Since we aren't discussing bowel movements here, they should probably be discharged soon. It really all comes down to how their other vitals look over the next eight days.☕
Before surgery, it would be ideal if they could administer a platelet concentrate transfusion. I mean, this needs to be properly coordinated. You can't just wing it when it comes to an operation like this.
Of course, hematologists should be able to state with absolute certainty whether this will actually provide any real benefit.
And most of the time, it actually works.
Unfortunately, it all boils down to the statistics. For the majority, things work out just fine. For the minority? Not so much.🤷

Christian Wood63 said:The fact remains: there isn't just one single reason why someone ends up having their spleen removed. The medical indications vary wildly depending on the situation.

It’s listed right there. One of those factors causes certain cells to break down and then pile up in the spleen, which ultimately prevents the body from functioning the way it's supposed to.
I don't know the surgical team personally.
When it comes to the actual surgery, you're looking at two main options: either they go in laparoscopically or they make a classic incision under the left rib cage.
Surgery itself shouldn't be the part that gives you any real trouble.
If you actually look at the literature, there are about 18 different complications already documented. Why aren't more people talking about this?
As far as I'm concerned, the procedure mentioned here is nothing more than a routine operation.
Since we’re dealing with a young man here, extra caution regarding infections is non-negotiable. Why? Because the incidence of pneumococcal sepsis in this specific patient demographic is significantly higher. It's a risk that simply cannot be ignored.
Since we aren't discussing bowel movements here, they should probably be discharged soon. It really all comes down to how their other vitals look over the next eight days.☕
Before surgery, it would be ideal if they could administer a platelet concentrate transfusion. I mean, this needs to be properly coordinated. You can't just wing it when it comes to an operation like this.
Of course, hematologists should be able to state with absolute certainty whether this will actually provide any real benefit.
And most of the time, it actually works.
Unfortunately, it all boils down to the statistics. For the majority, things work out just fine. For the minority? Not so much.🤷

The spleen plays a huge role in fighting off bacteria with polysaccharide capsules—think Streptococcus pneumoniae, Neisseria meningitidis and Haemophilus influenzae—so you’ve gotta be careful. Luckily, there are vaccines out there that offer solid protection.
Right after the surgery, you need to stay on top of any fever immediately so antibiotics can be started right away to prevent sepsis.
A person living without a spleen functions just fine; they might just hit a wall a little sooner during heavy physical activity.

When it comes to idiopathic (autoimmune) thrombocytopenia, getting a splenectomy works for over 80-90% of cases. Plus, the procedure can be done safely even if platelet counts are under 10,000.
High-dose immunoglobulins definitely bump up those platelet levels, but the effect is short-lived, maybe lasting a week or two. Platelet transfusions aren't really a long-term fix because they face the same fate as the body's own platelets—they get wiped out by macrophages in the spleen reacting to the antibody-platelet complex, so the benefit only lasts a few hours. As for corticosteroids, they're the go-to first choice, but unfortunately, not everyone responds to them. Even for those who do, a splenectomy is often still on the table because you just can't stay on high doses of steroids forever.
If the splenectomy doesn't do the trick (and there's no reason to doubt it will work), there are other drugs and options available. Keeping my fingers crossed for you. Good luck!

Thanks for all the new info you guys shared🙂
I'm just wondering if anyone knows of a specific case or maybe a particular hospital in Chicago where it would be best to see a hematologist and look into that splenectomy for thrombocytopenia.
Does anyone have a specific hematologist they’d recommend?
We know this kind of surgery is considered pretty routine, and since my boy is currently at a local VA hospital, we're thinking about getting a second opinion in Chicago just to be safe. That's why we're asking.

So, he’s finally out of the hospital after a hell of a struggle. Now we’re just settling back in at home and waiting for those steroid side effects to finally wear off. 🙂
I won't be forgetting the hematology ward anytime soon, nor the abdominal surgery unit, but honestly, I'm just glad the worst is behind us.

Right after the spleen removal, the platelet count started climbing immediately (65-131-272). Everything else seemed fine, no extra complications, so we were discharged on the fifth day post-op. Seven days after getting home, I went in for a follow-up, and the count hit 583. That’s high—maybe it'll go even higher—but according to the doctor, it's expected. They say it should stabilize toward a normal range eventually, though it might stay elevated. For me, the main thing is that they never drop low again. 🙏

Then again, I’ve heard that being too high isn't great either. Apparently, anything over 600 isn't ideal and can act similarly to when they're dangerously low. I've even heard mentions of thrombosis.

Is there anyone else here dealing with ITP and living without a spleen? 😁
Anyone with a similar situation? What are your platelet trends looking like, and how are you handling life without a spleen?
I'm already exhausted, but I know I haven't even truly rested yet. I'm still dealing with that stiffness from being bedridden and my muscles feeling totally neglected.

A family member dealt with thrombocytopenia and had their spleen removed back in their youth. Since then, they functioned perfectly fine for over 30 years without any medication. No fatigue from heavy physical labor, even despite various minor illnesses or injuries over the decades. I wish the same for you, if not better!
Unfortunately, now in my early fifties, I have been diagnosed with immune thrombocytopenia due to bleeding and infections. We tried treatments similar to yours—Cortisone, corticosteroids, and IVIG. I was put back on Cortisone, and they are increasing the dose. Now I am wondering what the next steps might be... if anyone has new information or has gone through this too, please help!

My husband had his spleen removed after a car accident about four years ago. Since the surgery, he's dealt with thrombocytosis—his count sat around 550. He sees a hematologist regularly now and takes a Tylenol every night. About six months after the splenectomy, he caught reactive mononucleosis; apparently, he had it as a kid too, but nobody ever caught it back then.

The most important thing after losing your spleen is getting vaccinated with Prevnar 23. Older folks or anyone with a compromised immune system is much more vulnerable to pneumococcal pneumonia, which can turn fatal pretty quickly in people without a spleen. That vaccine protects you for five years before you need another shot.
He also started getting his flu shot every year.

Regarding the fatigue: it’s true that people without spleens tend to tire out faster and are more prone to infections. But honestly, my husband was swimming in the ocean less than two months after surgery, and a year and a half later, he was back to boxing training and playing occasional pickup games with friends. I think it really depends on the individual. If you were a couch potato before, you might not notice much change, but if you were an athlete, you'll feel it. Personally, I deal with hypothyroidism, so I actually get way more tired than he does. Don't sweat the exhaustion too much.

Also, whatever doctor you see in the future, make sure to mention you've had a splenectomy. It matters for medication and general treatment plans.

I'm rooting for you to have a full recovery soon. 😁

Hey there,
I’m checking back in because I have a few questions for you all... my sister has been dealing with thrombocytopenia for about 12 years now. Her platelet counts are always bottoming out—we're talking 5, 10, 15, maybe 20... It’s been rough. A few months ago, she actually had to undergo surgery after an ovarian cyst ruptured, which caused internal bleeding into her abdominal cavity. She ended up losing nearly 3 liters of blood. Now, I’m reaching out to ask how I can actually help her, because honestly, I’m at a loss. She was taking Cortisone 50 mg daily, but they just bumped her dose up to 70 mg, and yet, nothing seems to change... it's the same old story. Ughhh... I don't even know what to say. If anyone has any advice or suggestions, please, let me know... she’s terrified of having to go through with a spleen removal. When she was little, she already had her appendix taken out. Please, let me know what you think... thanks again.

So, here’s the situation... my sister had her spleen removed and spent about 6 or 7 days in the hospital behaving perfectly. Her platelet counts were climbing steadily—hitting 50, then 130, then 210, then 310—so they finally cleared her to head home. The doctor told her to take a low-dose aspirin, I think 81mg, just to keep those numbers from spiking too aggressively or something along those lines. But then, the real headache started. She went in for a follow-up checkup and her platelets had plummeted to 21. I mean, come on... that's just impossible, right? We ended up rushing her straight to the hospital in Chicago where her doctor took her back in and hooked her up to an IV again. I honestly have no clue what the catch is here. Was it the aspirin that messed everything up, or is there something else going on? If anyone out there has dealt with similar "glitches" in the system, please let me know. Cheers.

Ronald Wells9 said:So, here’s the situation... my sister had her spleen removed and spent about 6 or 7 days in the hospital behaving perfectly. Her platelet counts were climbing steadily—hitting 50, then 130, then 210, then 310—so they finally cleared her to head home. The doctor told her to take a low-dose aspirin, I think 81mg, just to keep those numbers from spiking too aggressively or something along those lines. But then, the real headache started. She went in for a follow-up checkup and her platelets had plummeted to 21. I mean, come on... that's just impossible, right? We ended up rushing her straight to the hospital in Chicago where her doctor took her back in and hooked her up to an IV again. I honestly have no clue what the catch is here. Was it the aspirin that messed everything up, or is there something else going on? If anyone out there has dealt with similar "glitches" in the system, please let me know. Cheers.

A bit late to the party, but I'm dealing with the exact same thing...

I've been struggling with thrombocytopenia for seven years now... and like most people in this group, I've tried everything from Medrol to Cortisone and even immunoglobulins—it all helped, but only temporarily... :/

Today, my doctor actually came to me with the "idea" of undergoing a splenectomy...

Honestly, I trust him and I know he truly wants what's best for me—we've known each other for seven years now, as I mentioned—but still... even doctors aren't omnipotent...

I've been reading through these posts, and while there are plenty of beautiful, positive stories, there's also the reality that... well, things can change...

To be honest, I'm mostly just terrified of the surgery itself... my platelets are at 40 right now (which is great, considering they're usually closer to an iPod 10), but how am I supposed to undergo surgery with a count that low? What kind of risk are we really looking at?

Will I get anything out of it?
If anyone has answers or even just some experience to share, thank you so much in advance

I figured I’d share my experience with you all; even though this post is getting a bit old, maybe it’ll help someone out...
I've been dealing with hemolytic anemia—specifically hemoglobinopathy type F—since the day I was born. It comes with low platelet and red blood cell counts and really high bilirubin levels.
Every single time I went in for a checkup, my spleen was enlarged by about 2 or 3 cm, and that's been the case for years. But nothing too alarming, right? Back in 2008, after an exam showed some pretty terrible blood work, my hematologist (who is honestly a wonderful man) suggested I undergo a splenectomy. Of course, I completely panicked. I just went home, pretended he hadn't said a word, and tried to go on living my life as if everything were "perfectly normal." Naturally, I was constantly exhausted and drained—just like anyone else dealing with spleen issues—but since that’s been my entire life, I assumed I could just keep going like this forever.
But then, toward the end of 2010, the fatigue started hitting harder. I was becoming increasingly exhausted, irritable, and just lacked any motivation whatsoever. No matter which doctor I saw, they all just sent me right back to my hematologist. Finally, when I actually worked up the nerve to see him, he told me my spleen was twice its normal size and that I needed surgery immediately...
Ten days later, I was in surgery; both the spleen and gallbladder were gone. I was discharged seven days after the procedure. When I showed up for my follow-up ten days later, my blood work was absolutely shocking! My platelet count was 1510!!! The surgeon was baffled, and I had no idea what was happening because I've spent my whole life struggling with a deficiency, not a massive surplus. He immediately sent me for an abdominal ultrasound and back to my hematologist. The ultrasound revealed that I had portal vein thrombosis with several clots that nobody had caught until then. They moved me to the hematology ward immediately, where I stayed for 14 days. My platelets were still incredibly high at 1010, but since the clots had significantly decreased, they let me come home on the condition that I administer Lovenox injections myself twice a day. Now I'm just focused on my regular checkups and, of course, praying to God that my platelet counts drop soon!
Even though it’s been a month since the surgery, I still feel some slight soreness where they made the incisions, but honestly, it’s nothing compared to those first few days after the operation.