Spleen removal

[Lawcomo]

Had my surgery scheduled for Tuesday afternoon. My platelets were at 35, which my wife and I were concerned with, I had a endplate injection on a Friday before and they really did not bounce back. They gave me a 6 pack transfusion and went ahead with surgery. It was supposed to be a easy minimal evasive surgery, laparoscopic. When he cut Vein to spleen I was bleeding out. He said I only had a minute, so he cut me open and removed spleen. So now I’m recovering from several incisions. Good news is my counts are up and now 400000. He feels they will level out, I see surgeon for blood work this coming Wednesday.

[Nickie25]

Well...at least it seems to have been the cause of your low platelets! After all the trouble, you are a lucky one!

[Lawcomo in reply to Nickie25]

Thanks we will see long term, I go back and see my surgeon and blood dr this week.

[Daveitp]

Wish you a good recovery!

[Lawcomo in reply to Daveitp]

Thanks Dave.

[NickyD]

Hi I had a splenectomy and it did not work. My platelets still crashed. I hope your surgery is a success. I wish you all the luck in the world. NickyD

[Lawcomo]

Thank you NickyD I know it’s only a 50/50 chance but Dr told me if it was him he would do the surgery. How long after having surgery did you platelets crash?

[NickyD in reply to Lawcomo]

During my splenectomy I had to have simultaneous platelet transfusions, My count was 39 going into surgery and it did not go above 45 after. So there was no significant increase in the count at any point.

[Lawcomo]

Follow up today with lab work now shows my platelets at 900000 and now I’m worried about how we are going to get stabilized. Just did lab today at surgeons I go to blood dr Friday. Stressing my wife and me out.

[Daveitp in reply to Lawcomo]

They will stabilize mine also reach high numbers after surgery my doc said it takes time for the signal to tell your body to lower production of platelets i was on anti coagulant for 4 weeks and mine stabilized around 500 a but higher but they are stable... had my surgery dec 2nd and im still at 500 did a blood test 3 weeks ago ..

[Lawcomo in reply to Daveitp]

Thanks Dave

[Kokiroki]

Before the surgery did u control Anti-platelet antibodies?

[Lawcomo in reply to Kokiroki]

Don’t have any idea, this is over my head, no dr mention of any of this, I was on endplate to boost my platelets.

[Kokiroki in reply to Lawcomo]

Ahaa ok. Did you stop responding to enplate and because of that you made the surgery?

I'm on revolade and doc recomend me splenectomy too :/

[christfollow]

Wish you a speedy recovery and be positive.

[Lawcomo]

I think my journey has just began since getting spleen removed, you all have so much experience, I appreciate your comments and wisdom. I go to blood dr on Friday. Guess then we make plan for too many platelets.

[viviennes]

I had a 28 year remission after my splenectomy. It took two weeks for my counts to rise but then they went very high and after a few weeks went to around 400 and stayed there. Good luck!

[Lawcomo in reply to viviennes]

Thanks, my drs are not concerned think they will level out. What happens when it stops being in remission did you go on medication.

[viviennes in reply to Lawcomo]

I was fortunate in that they removed an accessory spleen and my count went back up. Initially I had a few rounds of dexamethasone which raised the count and then it dropped again; then ongoing prednisone, plus dapsone. If the surgery hadn't worked I was going to try rituxan.

[tree_shadow]

My platelets crashed about 6 months after I had the splenectomy.

[Lawcomo in reply to tree_shadow]

What was the course of action then?

[tree_shadow]

1) Tried standard cortisone (required too high daily dose so that was not sustainable)

2) Tried pulse extreme steroid (forget the name).. didnt work either

3) Tried Rituximab.. remission for about 3 years

4) Repeated Rituximab.. remission for about 10 years

5) Tried romiplostin.. seemed to work but ....

6) Suddenly was in and out of hospital for pneumonia (repeatedly with lungs fill of liquid); which was eventually diagnosed as SLE pneumonia, and diagnosed as having Lupus and ITP.

7) Tried mycophenalate and low dosage prednisolone (which seems to be controlling things at the moment)

8) Currently experiencing auto-immune inflammation in the achilles and knees which is not clearly diagnosed.

The splenectomy was in 2000, the lupus diagnosis in 2018.

[Lawcomo in reply to tree_shadow]

Sorry to hear of your continued struggles, I sure hope my spleen removal works for awhile with all the pain involved.

[Ali48]

Everyone has a different reaction, I had splenectomy in 1989 didn't work. The lowest count i've had was 2000, fortunately I don't bleed and I don't take any meds. Try not too worry.

[Lawcomo in reply to Ali48]

Thanks platelets were at 500000 today, hope this at least works for awhile. Thank you and everyone for your comments and sharing your experiences.