splenectomy decision

I am close to agreeing to have the splenectomy, but I am scared of the infection risk afterwards. I am getting three vaccinations prior to, but I am still fearful. Has anyone been really sick post splenectomy? The surgeon states the risk of an overwhelming infection is low, but has a 50% mortality rate! Maybe I am just too anxious.

My other option is to continue on low dose prednisone. I am now on 10 mg after a round of high dose (70mg) and the last time around I was down to 5 mg every 2 days. This was also my third round of the yucky steroids.

Thanks for any comments.

Have you tried anything else? Have you been offered anything else?

Farmgirl, I haven't really been any sicker than I was before my splenectomy. I didn't get my vaccines until long after my surgery. I'm not on penicillin or anything like that, just my normal meds.

I agree with what Sandi asked, what else have you tried? How long have you been diagnosed? I finally agreed to my splenectomy because I wanted off the pred. and I had tried every thing that was available to me at the time. Mine didn't work, but I can't say I'm sorry I did it; I am disappointed though.

Good luck with your decision. I would only suggest you really think long and hard and weigh your pros and cons. Let us know what you finally do decide to do.

how long have you been diagonised? It is a big decision. Can't wait to hear more.

It's a big decision. I noticed you're in Canada, so are Cindy and I and a few others here. I hope you have a good Hema that can offer more choices. Maybe you could consider winrho, IVIG or rituxan.

It took me years to make the choice for splenectomy, but the chance of a long term remission is more possible than with other treatments.

The problem is that an infection can take over quicker than with others. My Dr's believe in 0 risk. My Hema wants me to have a prescription for an antibiotic available at all times. I've been told that if I get a fever over 38C to start the antibiotic and see a Dr soon.

In develoved countries the risk of mortality from this is extremely rare.

As for your concerns about infections, your vaccines will cover you for the most common, there should be 5; Hib, Menactra, Pneuma, seasonal flu and H1N1.

Hi Tortie,
I was thinking about you and wondering if you had the splenectomy?

Thanks for all of the comments. To answer some of the questions, I have had ITP for almost 6 years now. I was diagnosed during routine pregnancy bloodwork. I have not tried any other treatments other than prednisone. Rituxan is not approved for ITP here in Nova Scotia. My hemo said that IVIG would be given to me if I got pregnant again, but that the effects are not long lasting. Danzol was mentioned, though my hema felt it had many side effects. It seems to me that the splenectomy is my best chance of long term remission and I think I will do it. Even on low doses of prednisone I have side effects, even though it raises my counts nicely (currently 82 on 10mg daily).

Hi Farmgirl,

Like Cindy, I'm a failed splenectomy person. I don't think I've been more prone to infections because of the lack of a spleen, but I am careful. I carry hand sanitizer and use it a lot!

Have you considered WinRho? Some have had good results from it. I wish I had tried it before my splenectomy. Usually WinRho isn't an option AFTER a splenectomy.

What side effects do you get from the prednisone?

Karen R

I understand exactly where you are coming from. I had a splenectomy three weeks ago and I was terrified to do it. I was diagnosed a year ago with ITP and was reluctant to have the surgery. I was tired of always taking medication and being in the hospital for an entire day for the IV drip so after meeting with two different doctors and great deliberation, I decided to do it. My platlet count usually hovered around 10,000 - 50,000, now I am at 500,000. I am still sceptical and think that they will decrease again but I feel better and my family is more at ease now that it is over with and my numbers are high. Of course I worry about getting a cold and getting an infection of any sort but I rather deal with that than being worried all the time about a low platelet count.

Hope everything works out for you and good luck.

S.P. McGill

I'm wondering the same thing (regarding having a spelectomy). I've recently had a reoccurrance of ITP after a 6 year ?remission? with my platelete being in normal range all during that time. I was originally diagnosed in 2002, with a reoccurance in 2003. Both times I responded well to IVIG and prednesone and my platelets went back to normal range and remained there until the reoccurrance. I am responding well again, my platelets today were up to 194,000 and they've just started tapering me down on the prednesone. My doctor keeps saying I need to really consider a spenectomy now since it will occur again. My thought is, yes it will probably reoccur again, but it could be another few years or several years. Why live without my spleen for that amount of time if I don't need to. And there's no sure way to say it will work for me anyway since the percentage they gave me for success was 60 - 70%. I say as long as I'm responding to treatment and my platelets go back to normal range, hold off on the splenectomy. What's your thoughts?

Australiabound, I'd kill for counts like yours! In my opinion, as long as you can get your counts up and keep them up, I don't think you need to worry about a splenectomy. Unless you develop serious symptoms.

Ausrtalia - I agree with you. I've done the same thing, and avoided splenectomy since my diagnosis in 1998. I'm currently in my second remission.