View Single Post
  #1  
Old Fri Nov 28, 2008, 08:19 AM
squirrellypoo squirrellypoo is offline
Member
 
Join Date: Nov 2008
Location: London, UK
Posts: 458
Unhappy 25 years after AA, now I've got AA and PNH

In 1984, when I was 5 years old, I had severe Aplastic anemia. My pediatrician was alerted by my unexplained bruising, ordered some blood counts, and rushed me to Hershey Medical Center. I was then transferred to the Children's Hospital of Philadelphia, where I was treated with horse ATG and made a full and complete recovery within 6 months and have been absolutely cured ever since. I was told then that it was definitely acquired rather than genetic, and that I'd have the same chance of aquiring it again as any other member of the population.

Fast forward 25 years later to early October of this year - I started having unexplained haemorrhages in my eyes that the optometrist could not explain, so I was referred to my GP for blood pressure checks (normal) and CBC, which showed very low RBC and platelets (~50), and I was referred to St Thomas's hospital (I'd emigrated to London, UK 6 years ago) and had full blood tests taken by the haematology day unit, which showed a positive PNH result. I had bone marrow biopsies taken which show that my bone marrow isn't producing hardly any platelets, and just yesterday I was given a tentative diagnosis of AA and PNH.

Luckily, I'm being referred to the UK's leading AA specialist, Judith Marsh, for late December and they're weaning me off the prednisolone starting today. My blood counts are low but stable so they're waiting to find out more before deciding on treatment, but I've been told it's likely I'll get ATG again as it worked so well before.

So all this has happened in the last two months. What was once an interesting side note to my childhood ("oh yeah I nearly died when I was a kid") is now the single biggest aspect of my life. Two months ago, I was the healthiest person I knew - I'd lost 60lbs a few years ago and have eaten an utterly healthy, organic and largely vegetable - and whole grain-based diet ever since, I've been a runner for years, logging about 30km a week and competing in 10k races, and proudly being able to squat my own body weight at the gym. Now I get winded and have a racing heart just walking up a set of stairs or carrying a single bag of groceries. Not being able to run is probably the worst aspect of all this for me right now - otherwise I'm tired but generally okay. But seeing other runners on my daily commute is just driving me crazy, and I want to just burn through an easy 5k right now more than anything else. My fiance has been fantastic with this, but I'm just today starting to tell friends so I don't feel so isolated and withdrawn in my emotions. I'm finding it's a lot easier to say in emails than to find the words in person.

I'm interested in hopefully meeting people here who:
1. are in London or the UK and have also seen Prof Marsh?
2. are runners and how they've coped?
3. have ever heard of someone getting AA twice in their life after such a long cure/remission/whatever??
4. have AA and PNH together as the latter is something new for me?

I'm guessing I'm going to be an interesting source of water cooler conversation at the haematology conference in SF right now...
Reply With Quote