Splenectomy success...so far so good!

Well I know a lot of people here are not so pro-splenectomy but I wanted to share my story so far! I am 35 years old and have only had ITP since late April of this year but I must say with 3 little ones it really wrecked havoc on my life and on the whole family with my 3 wee ones... I initially responded to IVIG and was on prednisone with very little response. I was symptomatic even once after about 2 1/2 months the prednisone started to temporarily kick in, nosebleeds all the time which would last for hours and really interrupt work and life with kids! Then the prednisone stopped again, even at the same dose. I Have a history of cancer so had bone marrow biopsy which showed some platelet abnormalities but not conclusive of any other meylo disorder so they are thinking will have to watch blood counts as maybe very very early signs of potential long term issues but nothing to "worry" about "yet"! However, based on this the hematologists felt I was not a candidate for the other treatments.

Had a splenectomy on Aug 29th. Laparoscopic. Ended up With internal bleeding which prolonged my recovery time and kept me in hospital 4 nights. But, almost fully recovered now. Platelets increased to over a million and had to be started on aspirin to prevent clots until the rebounded down. So crazy to go from one extreme to the next! Have now been weaned fully off the prednisone and platelets are stabelizing in the normal range (400s even right now after prednisone off)! While I know they may not stay in that range both the hematologist and surgeon are confident I am a complete responder based on the high I achieved. Fingers crossed as time will tell!

I can't tell you how much relief I feel and how much better I feel now without the prednisone craziness! And without the worry of an unexpected nosebleed coming along and inhibiting me from taking the kids to school on time etc... Or getting to work on time!! Life is so different! I know that the risk of infection is higher with a splenic patients, and that there are potentially higher risks of clotting, but I also know I am more then willing to take that risk as compared to having to have a life expecting more prednisone that doesnt really work but makes me crazy in my future.... And since the treatments weren't really options for me as my next step then it made it a bit easier if a decision...if this doesn't "stay" will have to revisit all of the options and find the best one for my history and will also now be asplenic and I know that but am going to assume it is going to stay for now until I have any reason to believe otherwise!

I guess I am just wanting to post this story for anyone who is considering splenectomy since there seems to be mostly negative thoughts about it that I have seen. Obviously not the right answer for everyone (and certainly understand why) but perhaps not something to instantly say isn't the right answer for you (which is what I initially thought before researching to understand my hematologist's opinion)!

Every situation is different and you have to do what you have to do. Having a response like that is promising, and I wish you the best!

MommaBee

This is such great news! Must be so good to be off prednisone, no more road rage!

Wishing you continued great counts and hoping you are back to your normal busy life.

Thanks Sandi and Dru! I sure am happy not to have road rage anymore and to feel like I can enjoy my little kiddies and being a Mom again! That prednisone is nasty... Though for those with minimal side effect am good on them! Only time will tell if splenectomy the right decision or not but for now celebrating feeling "normal" again!

That's crazy going from one extreme to another in regards to platelet count, but I'm glad your spleenectomy seems to be a success! This is very promising news. Congrats!

-Kristina

Congrats! That is great news! I don't want you to feel that we are not here to support you just because we are anti-splenectomy. I completely understand now how time consuming this disorder is. I have been to at least one hema appt a few since dec. it would be impossible with three kids.

You give me hope that splenectomy could be effective. I would like to have a baby someday and I may consider it, since you can not be on TPO drugs while pregnant.

I wish you continued success! Thank you for sharing your story.

Hi,

I just wanted to tell you that it has been 10 years since I had my spleen removed and I´m still in remission

I wish you continued success.

Kind regards
Erna from Iceland

Congratulations on your successful operation!

I can also add myself to the list of here of successful splenectomies- in a month will be my two year anniversary of my operation and the remission of my ITP-. I have really enjoyed two years without prednisone and its crummy attendant side effects!

Mark

Thanks to all those who have posted splenectomy success stories! It's nice to hear it does work out sometimes

How are your counts mommabee? Hope they're still good!

So nice to hear others success stories with splenectomy as well! My platelets are in the 200s for the last several weeks! I only have weekly blood work now (and the hema says can drop down after I next see her in a few weeks to monthly if they are still staying in that range!

Definitely did not feel unsupported with any antisplenectomy messages here but for sure was great to make myself stop and questionand determine if it was right for me which is I think what all of us are doing before any treatment!! This board is amazing how supportive and educated everyone is!

All the success.stories we can have can also help us to see the potential as well! and to think of our next options if current plans fail or go awry!!!

Congrats mommabee... That's fab news!! Really pleased for you

That is such great news Mommabee! So glad you continue to do well. It will be nice for you when you don't have to go for counts so often.

I'm having great success with Rituxan but please do keep us updated on your long-term results with your splenectomy. Many of us would find this interesting as to how you do over time. Really good to hear about your success with this and wish you nothing but the best.

Glad to hear spleenctomy is working!