Splenectomy on Friday

Well...here I am again. After being diagnosed with ITP last November, its been 10.5 months of ups and downs. My counts have been in safe ranges; however, it seems I'm completely dependent on the medication. A recent cold infection plummeted my count to the lowest it has been since I was hospitalized last winter.

To recap the numbers...after taking steroids November-February, starting 50mg Promacta in December, and receiving four infusions of Rituxan in December-January, my counts seemed to be stable at 80k - 110k. However, the Rituxan never seemed to have an effect. Once I was on Promacta only, my body seemed to struggle to keep my platelets up. I dipped down to 37k in April and then dipped again to 21k in September. I had bruising, petechiae, and fatigue, especially in September which started to mimic last fall. My dosage was temporarily raised to 75mg each time. After this most recent crash and dosage increase, my platelets went from 21k to 101k, but as soon as I started taking 50mg on the weekends, I went right back to 58k.

I know there are a lot of differing opinions on splenectomies in these forums, but my doctor and I have finally agreed that it's time to give it a try. The argument is that I'm young, have responded previously to steroids, and this could be my chance at being medication-free for years, which is important to me as I have not had any kids yet. I also think that although I've spent most of the year above 50k, I don't like the idea that one common cold can almost put me in the hospital. It took a while for me to commit to the surgery, but once I did, I had three weeks to mentally and emotionally prepare. I feel ready for Friday. I'll be having my gall bladder removed too due to gallstones and pain.

Good luck with the splenectonmy. Hope you go in to remission. You're lucky to be getting your gall bladder out at the same time. When I had the ultra sound before my splenectomy, the scan showed gall stones but I wasn't told about it. A year later, I wound up in the hospital in so much pain, it wasn't funny! Good luck with that surgery too.

Good luck, Aliza. I hope it works for you.

Good luck! I didnt find the surgery and recovery to be too bad. Like you, I felt I was ready. Keep us posted.

If Spenectory not done yet please wait. Doctors recommended same to wife with 2 years ago but we tried so many other options. Finally Promacta medicine working. She is on this medication for last 1 year

For what it's worth here, my mother just had her spleen removed as a part of her cancer treatment. Her counts have dropped sharply since, though it's still early days. I hope your splenectomy leads to stable, high counts.

It's hard to believe after debating the surgery for so long and anticipating it for weeks, it is finally over. I was in the hospital until Monday afternoon, and I've been recovering at home since.

The initial counts were disappointing, after reading about so many others who skyrocketed to 200k, 300k, and even 400k post-splenectomy. I've done a lot of reading to understand that results immediately after surgery are not entirely reflective of long-term outcomes, so we'll see. I've also come to realize that my counts may never be normal, but maybe the splenectomy will afford me the chance to stop taking Promacta or avoid frequent crashes.

I went into the surgery very early on Friday morning at 60k, and later that day the doctors said my platelets were at 93k. Then, Saturday: 86k, Sunday: 75k, Monday: 61k, and today I went to the lab and they said 56k. I'm still taking Promacta at 75mg/day.

I was wondering if anyone out there experienced less than "exciting" results right after the splenectomy, and how things ended up going?

Hi all - just an update on how things have gone post-splenectomy.

My recovery has gone pretty well. The surgery was almost six weeks ago and I have felt my condition improve each week - more mobility, less fatigue, resolved GI symptoms, and less sensitivity at the incision sites. I was able to return to work two weeks after being discharged from the hospital. The only problem that remains is that I can sleep fine on my right side where the gall bladder was removed, but I have not been as comfortable on my left side where the spleen was removed, and my one attempt to lay on my tummy this week did not go well.

I'm happy to report that the splenectomy seems to have been successful after a slow initial response. I've been able to reduce my daily dosage of promacta. My count today was quite lower than my high count last week, but still a number to feel positive about. Counts were as follows:

10/15: 56k
10/17: 59k
10/21: 62k
10/24: 140k
10/28: 192k
10/31: 220k
11/4: 266k, reduced from 75mg/day to alternating 75mg and 50mg
11/11: 310k, reduced to 50mg/day
11/18: 171k, will reduce to 50mg M-F and 25mg on the weekends