ITP + physically demanding job + travel

Hello!

I'm 30years old and was diagnosed with ITP May of 2013 during a stressful time in school (my last year at circus school). I was put on prednisone until mid October where my count rose to around 120 (up from 7 when I went on prednisone). My platelet count started to decrease a bit, but not significantly until my recent test this Wednesday, which came out at 60 (down from 97 a month ago). I know this is not too horrible and I also had a cold, which may have affected my count. However, I'm wondering how this will affect my career in general. I am a juggler and I also do hand to hand (partner acrobatics) which involves not only physical training on a daily basis (around 5hrs give or take), but also a lot of traveling. I'm wondering if anyone else has been able to maintain a physically demanding job where a lot of travel is required with ITP. How has ITP affected other people's careers? From the research I've been doing, it seems like splenectomy might be the best solution for people with my lifestyle, though of course I hesitate to say good-bye to my organ too soon.

Thanks! This forum has been really helpful so far.
Bekka

Bekka:

Most people do get to a point where they can manage to keep going with their careers, whatever that may be. It might take some time to either find a treatment that will cause remission, or one that will help you to maintain counts high enough for your job without a lot of side effects. The treatments are different for everyone due to lifestyle, responses and side effects.

We had a fire fighter here recently who was unable to continue with his job due to low counts. He wasn't getting responses from treatments that were lasting long enough or getting counts high enough. He finally tried Win-Rho and found that one infusion would keep his counts up for a month or so. It was working great for him.

Others here have had jobs where they travel and were able to keep doing that. They just made some adjustments that included treatments here and there.

Some people respond well to Rituxan and since remission from that can last about a year or more, they choose to treat with that. Others are fine with just maintaining counts around 50k or so, so they choose to treat with Promacta or N-Plate.

Splenectomy may very well be the right choice for you, but be sure to research it thoroughly. There are problems associated with that as well; it can cause other health issues and as I'm sure you know, it does not always work.

I'd suggest researching all treatments available, and then discuss them with your doctor. Hopefully, he is up to date with everything and can guide you to an option that will work to your benefit. There is every reason to hope that you can continue your circus career. What an interesting choice!

Hi Bekka:
Cool occupation choice! I understand your concerns as you probably have your share of bruises on a good day with all your job entails. Monitoring levels is a good way to determine your risk with falls or injury.That could be a challenge when you are out on the road.
I too have a job which is physical. I am newly diagnosed last Nov. 2013. Still on Predisone 20mg and hope to taper next week. Current level 156.
I am a Physical Therapist Assistant and work in an Outpatient Clinic and also help at the hospital.
Since this has occurred I haven't felt strong enough to work in the hospital setting and have secured a MD note to stay in Outpatient. I work with orthopedic patients but also 50% of case load is with Balance and Dizziness patients. The steroids weaken us I'm told.
I'm with Sandi in regards to weighing the pros/cons on splenectomy. I had a follow-up appt. yesterday with my Dr. thinking he would be happy with my count and he is still telling me I could be looking at a splenectomy. That is a big decision and the outcomes are not good enough for me. There are other meds as an option but he told me my Humana insurance has a low cap on these so out of pocket could be costly.
I think its important to keep yourself strong keep training. It is a challenge to keep going esp. while taking Predisone. It has made me more empathetic for my patients who are on it. keep reading and follow up on research. This web site is a gold mine for good Journal articles as well as personal experience.

I currently work as a nurse but before that I worked as a personal support worker. When I worked as a PSW years ago and my counts were low I would get concerned just because I worked on the secure wing and those resident can be unpredictable. Now as a nurse I do the full time work but it isn't all hands on.

I travel for my job. I've been in remission for a few years but I always travel with prednisone in case I see signs of a big platelet drop.
Erica

This isn't in response to the question you asked, but splenectomy doesn't always work, and when it does work, it doesn't always work forever. I guess the success rates they give at your age are still about 66%--for a remission of unknown duration.