Monday 28 August 2017

Ignorant, Stupid, Chronic

Through my three episodes of Thrombotic Thrombocytopenic Purpura (TTP), I think I have passed through three phases:  ignorant, stupid and chronic. I guess what I'm really saying is I have learned quite a bit through the last 6 years and now hopefully know my status.

Ignorant
In January 2012, I started to experience many symptoms, but thought I just had a cold. I had dark urine, sniffles with blood in one nostril, headache, shortness of breath for sports, and a large bruise on one leg. After about a week and a half, I talked to my doctor about a different issue. I could not find words or finish my sentences. The doctor talked to my wife and recommended I be taken to the hospital. Luckily, the hematologist on staff determined TTP immediately, so I was sent off to another hospital that has the plasmapheresis machine.

I call this the ignorant phase as we knew nothing about TTP. Never heard of it. Why would we as it only impacts 3 per 1 million people per year. But we also did not respond fast enough when the number of symptoms started to accumulate. We were waiting for the "cold" to go away.

Lesson learned, pay close attention when you are not normal and have behaviour changes.

Stupid
Just over two years later, I started having symptoms again. It started with dark urine, then a headache, bruising and shortness of breath in the gym. It took me about five days to go for a blood test. Stupid.

I'm not sure why a TTP survivor would not be off to the hospital immediately. In fact, I decided to spend the long weekend moving my sons into their apartment, then setting up our recreation property for the summer.

I suppose the thought was the first episode was a freak of nature. Remember, TTP only impacts 3 per million. Unfortunately, I didn't remember TTP survivors have a 30 percent chance of having TTP again.

Luckily, we did go to the hospital much earlier than the first time. The sequential issues were fewer and I was able to go back to work within 6 weeks. TTP was treated with 10 plasmapheresis treatments. Rituximab was administered after plasmapheresis had been completed, so it wasn’t removed from my system. I was cured! Stupid.

I didn't even not know what the words for TTP. Couldn't say it, couldn't spell it.

Chronic
Now, just over three years later, I have TTP for the third time. Within just over half a day my wife and I determined that I wanting a nap, not having supper, having lower back pain through the night, diarrhea, throwing up and bruising, meant TTP was back. We were off to the hospital for a blood test within 30 minutes and were and in the right hospital for treatment within 4 hours.

I have accepted my TTP condition is chronic. I have to live with the consequence; I will have to battle TTP every few years. I'm doing what I can to get prepared.

I also now know how to spell and say Thrombotic Thrombocytopenic Purpura.

Bruce Fights TTP
I have decided to start a lifelong, that's a big word, campaign called Bruce Fights TTP. The goal is to provide information about TTP, encourage blood donation and raise charitable funds to help find answers as to why TTP occurs and how to prevent repeat occurrences.

Thanks, Bruce.
@BruceFightsTTP

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