Saturday, February 12, 2011

How my Story Began

This is an account of how I came to be diagnosed with ITP.

Please feel free to share your own diagnoses experience in the comments following this post.

I'd been feeling tired, which wasn't anything new for me, but on Monday 11th October I noticed I had a few petechiae or blood spots on my right forearm [note: The arm in the picture isn't mine]. I didn't think much of it at the time.

However, the following day I noticed the spots had spread so I had more around both wrists and up onto my forearms, a few on my chest and more down my legs, especially around my ankles.

On Wednesday, while at work I asked a few of the the nurses if they had ever seen anything like it and what they though might have caused it. I was tired and headachey, but other wise felt fit. They wondered if it was a reaction to a multivitamin I had just begun to take and it was suggested to me that I cease to take it and see how I was in three weeks, after which time, if it hadn't improved I should visit a doctor.

That night while on the phone to my Mum I happened to mention the strange spots. She expressed concern, pointing out that they likely meant my skin cells were bleeding, and told me to go to A&E. I had a meeting that night, I felt more-or-less fine and I wasn't about to drag my family on a half an hour drive into Dunedin for something so trivial, but to allay her concerns I agreed to visit the doctor the next day.

On Thursday, as promised, I visited my doctor. She quizzed me thoroughly, examined me and took photos of my spots. Then she had a colleague examined me and together they consulted their medical encyclopedias.

They agreed that the most likely scenario was that I had ITP or Idiopathic thrombocytopenic purpura. This seemed to most closely fit my symptoms. They then contacted Dunedin Public Hospital (DPH) and consulted the hematologist and general surgeon there.

ITP is fairly rare (about cases 100 per million people a year) and initially when talking to my doctor the hematologist was very reluctant to concede that I might be suffering from this condition. Instead she seemed convinced that my doctor was miss-diagnosing meningitis (much to my doctor's chagrin). Other than the spots I had no other indicators of meningitis.

Samples of my blood were taken and I was sent home to await my blood results.

At 5pm that afternoon the doctor called. My blood work showed that my platelet count was extremely low. Normal levels should be around 300. I was sitting on 2! I was to go to hospital ASAP.


Once at ED I was reassessed and re-examined. The placement of petechiae and a number of bruises of unknown origin, mostly of my arms and legs, were noted on a chart. I'd had some spotting on a tissue when blowing my nose and bleeding of the gums when brushing my teeth and these symptoms were noted too.

A lure was put in my arm and more bloods were taken. My family history of auto-immune issues were recorded; both my grandfathers had diabetes, coeliac disease, autoimmune liver disease and autoimmune hemolytic anemia (AIHA) and acute ITP.

At about 8pm I was admitted to the Haematology and Oncology ward on the 8th floor. I was given an infusion of antibodies IVIP (a blood product). I was also started on 80mg of Prednisone (a steroid and commonly used therapy for ITP) and because there is the risk of stomach ulcers and osteoporosis when taking this drug over an extended period of time, I was also put on medications to protect my stomach and my bones.

I was also put on a "soft foods" only diet, in case anything I ate scratched my mouth, throat or gut and cased it to bleed, and wasn't allowed to drink anything too hot or two cold. I was give little sponges on a stick (often used for mouth cares of the elderly) to brush my teeth to stop my gums from bleeding.

As I'd been suffering from headaches an MRI was done of my head to rule out any aneurisms or bleeding in the brain, which is a very real danger when suffering from very low platelet levels. The results were negative.

On Friday bone marrow was taken from my hip to verify ITP.

I was a bit daunted going into this procedure because I'd seen it done once of TV and it looked incredibly painful. My Mum had had this done before. She suggested asking them to increase the dose of "dope" that they give you so you aren't really aware of what's going on, because one dose hadn't been enough for her. When I didn't respond as well as expected to the initial dose they did increase it. And while it was a little uncomfortable, it didn't actually hurt.

The drugs definitely worked to wipe any clear recollection of it from my mind and may recollection of it now is very hazy. My hip was sore for the quite a few days following the procedure, though nothing a good dose of codine couldn't deal with.

The bone marrow results "indicated likely ITP". After the infusion the night before my blood work now showed my platelet levels had increased to 25 and while my doctors were pleased with this jump in my levels they decided to keep me in for observation.

Saturday my platelets had dropped slightly to 21. I was deemed to be out of the critical zone and allowed leave from hospital to visit with family in town, so we took the kids to McD's for a happy meal and play in the playground. There was talk that I might be able to go home the next day.

However on Sunday my platelets had plunged back to 3. I was transfused 1 pool of platelets followed by more Immunoglobulin IVIP therapy (antibodies).

On the Monday I was reviewed by the eye clinic over concerns that spots in my vision were due to bleeding in the eyes. This was determined to be due to severe myopia and not related to ITP.

Following the second infusion of platelets my levels rose to 50!

The following day they had risen to 57 and though they dropped very slightly to 53 on Wednesday, I was deemed to be stable and discharged from hospital.

On the Friday I returned for a CT scan of my chest and abdomen to rule out the ITP being a secondary condition to some other issue. Scans showed no secondary conditions or abnormalities.

For apparently no reason at all, my body had turned on itself and I now had ITP.

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