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splenectomy

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14 years 6 months ago #14074 by iam4ual
splenectomy was created by iam4ual
How many of you on here have had your spleen out and how long ago was it and how are you doing now? I am getting many opinions and I just have to know how others have done.
Shannon
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14 years 6 months ago #14079 by SteveC
Replied by SteveC on topic Re: splenectomy
10y ago was my first known episode with ITP. Hospitalized @ 3 and @ 0 next day and after a few weeks of being unresponsive to various Rx I agreed to the splenectomy. I was fortunate that it controlled my ITP and within a few weeks was hovering @ 300. However my 10y anniversary (age 58) was also when I crashed again and within few weeks was @ 10. Week 9 after Rituxan Rx and while hospitalized with Pneumonia my counts started climbing daily and settled around 270. It's only been 5 months but holding steady around 270.

Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C
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14 years 6 months ago #14088 by CindyL
Replied by CindyL on topic Re: splenectomy
I had mine out in 2006. It worked for the first week or so. I finally had Rituxan last year, and that has brought my counts up to normal.

One thing to remember, we are all different. Just because it didn't work for me doesn't mean it won't work for you. You could get lucky like SteveC.

Good luck with your decision.
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14 years 6 months ago #14089 by mendenmh
Replied by mendenmh on topic Re: splenectomy
I am coming up on 4 years since I had my spleen out. I had it out about 6 months after diagnosis, and after steroids, IVIG, and 3 rounds of WinRho. I did it because my analysis is that it was cost-effective relative to those choices and had a good risk profile.

The analysis goes roughly as follows: I had spent $40,000 (insured, fortunately) on treatment by the time I had the splenectomy. It looked as if a minimum maintenance cost by medication would be about $40,000 per year with 6 WinRho treatments, or maybe somewhat less if Rituxan happened to work and hold a couple years. The splenectomy cost $20,000. Even to a pessimist, this has better than a 50% chance of really good results for a decade, which came to $2,000 per year for that period. With appropriate vaccinations (meningococcus, haemophilus influenzae B, and pneumococcus), the risk of sepsis is very low (it used to be a serious issue 20 years ago without these). With the skyrocketing costs of health care nationally, I think that these are real issues I have to consider, since ITP is an expensive disease to treat, and it comes out of other peoples' pockets.

So far, my platelet counts have been about 350k, and I have had no sign of excess illnesses of any type (2 colds in 4 years is all). I consider the outcome a great success.

Every treatment, medical or surgical, has its benefits and risks. Since I am a scientist who spends a lot of time dealing with statistical analysis of data, I made this decision fairly analytically, and considering its impact not only on me but on the medical system around me. There are many other ways to weight the various issues involved, and to come to different conclusions. The nicest way would not be to have ITP (or any other disease) in the first place, but that isn't the card we were dealt.

Take care, and good luck.
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14 years 6 months ago #14114 by brishti
Replied by brishti on topic Re: splenectomy
Splenectomy was done on March 2007, plt was almost 400K after splenectomy. But after 1 week it was 5K only :( so had Rituxan (last treatment was on may 2007) , was on remission till february 13, 2011.

Thanks

Dream as if you'll live forever, live as if you'll die today.

Nowrin
  • karenr
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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14 years 6 months ago #14154 by karenr
Replied by karenr on topic Re: splenectomy
I had a splenectomy three+ years after diagnosis because I feared being on prednisone (which does control my ITP) the rest of my life. The splenectomy didn't work, and I'm still on prednisone.