19 years post-splenectomy. Hopefully encouraging!

I was diagnosed in 1986 with ITP at the age of 18. Doctors believe it was triggered by my use of tanning beds my freshman year in college. I fell into a predictable pattern of high doses of Prednisone over the summer and weaning off through winter. I usually had a few weeks symptom-free until the ITP went active again each spring. We always considered a splenectomy but, as much as I hated the Prednisone, I responded well to it and was fine with that. Until...

...I got married in 1992 and certainly wanted kids. After many meetings with my doctors, we decided together that the best course of action would be to remove the spleen and consider only c-section delivery. I was fine with that. I was VERY happy to be able to have kids at all. I had my spleen removed in 1993 and had my first miscarriage later that year. Happily though, I had a bouncing baby boy in December of 1994 (he just turned 17!). That followed a daughter in 1996 (now 15) followed by another miscarriage. After giving up and selling all my baby stuff ... we had our surprise "grand finale" son at the end of 1998 (now 13). The doctors now all feel they know why I had the two miscarriages and I can't remember what they said. It would seem that if I were pregnant in 2011, they would have been able to prevent my miscarriages. My children were all monitored post-delivery, but none of them ever had a problem from my ITP. They are all healthy and have shown no signs of any auto-immune disorder.

Life after my splenectomy has been wonderful. I live a full life and have home schooled my kids because we are an active family that loves to get out and enjoy life. I get all the vaccines they recommend and I am careful to get care when I am sick ... particularly with a fever. I rarely am sick like that though. My family has a passion for mission work. We have an RV and have travelled to every state in the contiguous United States, visiting many remote places doing a whole lot of dirty jobs. I have travelled to some of the poorest parts of Canada, Peru (3 times), Colombia (twice), Panama, and Mexico. I am smart and don't take unnecessary risks. I do, however, enjoy life to the fullest and consult with my doctor every step of the way.

I know the splenectomy does not work for everyone, but it did for me. The day I got my spleen removed was the last day I ever had a problem with my platelets. That was almost 19 years ago.

I came to this forum because I have had about a 10 year battle with Lyme Disease (contracted by a tick bite). I don't know how far back the Lyme went and I wondered if perhaps the ITP was really Lyme. There are many symptoms of Lyme Disease and its co-infections that mimic ITP. I don't think that is the case for me though.

Reading your posts have brought me back to a very scary time in my life. I will never forget lying in the hospital on the cancer ward listening to all the theories back and forth. I will never say that my battle with ITP was easy, but it was manageable. You will live. You will live a good life. You will need to feed your body well to give it the best chance to do what it was designed to do. You need to exercise and be active. In a way, we are a privileged few who
walk in the surf instead of on the beach. It's more difficult, but lets you come out stronger!

Please feel free to ask me any questions. At 44 it is nice to look back and help others walk in the steps that are behind me now.

Thanks very much for your post. I had my spleen removed about 2 months ago and found your post encouraging.

After years of managing my ITP w prednisone I had a serious period in October where my numbers zeroed out and I was responding to no drug regimens. Although there are surgical options with low numbers, we used Nplate as a bridge (I was a “late responder” – took some time and increasing doses before I responded) to get my numbers high for a safer splenectomy.

For me, a splenectomy seemed the more logical option than regularly hitting my bone marrow with modified a growth factor (Nplate), which I keep I reserve as a last option. Hopeully I will be drug free soon (I’m on a prednisone taper now).

Some thoughts – if there was a clear response of elevated platelets to your splenectomy, then it seems it was your immune system what was the culprit and not Lyme.

Also, I haven’t read anything that supports the notion that your tanning bed could have anything to do with the ITP. On the other hand, it sounds like a correlation with the seasons, which sounds unusual to me…. Did this correlation occur every year? For how many years?

Thanks again for your post and happy new year-

Mark

Tanning beds (and sun tanning) are known to trigger Lupus and many times, ITP can be the first symptom of that. ITP can occur years before Lupus begins to show its head. That is the only connection that I'm aware of.

Did the doctors say that the miscarriages were possibly caused by APS?

Mark, When did you start Nplate? I believe I started maybe a year ago and it has it's off and ons with working but for the most part it works with me. Except this week. I have now been having a nose bleed for literally 26 hours. I will go in tomorrow for another dose of Nplate.

Thank you very much for your post. I've only been diagnosed for 2 years now but it feels like a life time! I'm really still a newbie. lol. My doctor has been pushing for a splenectomy for awhile now. I don't know about it. I'm still in the state of mind that God put it there for a reason and I know He doesn't make mistakes! Prednisone did nothing at all for me. Rituxan worked once and I don't like the side effects of Nplate. So I am currently on Promacta but it appears as if I may be growing a tolernce to that now. Maybe I'll just ride the low end of numbers for a bit.