Mr A's Story

I still cant believe that Mr A and I have the same autoimmune disorder. I think back to the time that we met, knowing nothing about this man who was to become my husband. It was love at first sight (seriously!) and i had no idea that we would be on this journey together.
Everyday felt right. Magical. We had 2 beautiful children, a wonderful marriage and after his diagnosis we knew that something had put us together that night. We believe we were born for each other. (I swear he was put on this earth to annoy the hell out me but that's a different story, haha!!)

Mr A called me while he was away at work. (He works away in the mines.) Babe, I'm covered in bruises!
The minute he said that i freaked. I knew what it could possibly mean but we put it down to his hard work. I told him to see a doctor but he couldn't out there.

A few days later he told me that as bruises were fading, more were appearing and they were definitely unexplained. I told him to stop work and come home but he said that he couldn't possibly have a blood disorder and continued to work.

I sat there thinking, could he have Idiopathic Thrombocytopenia Purpura (ITP) like me? No. Not possible! Then i remembered that before he left, he was complaining about blood blisters in his mouth. Crap.
I called and said that he had to have a blood test the minute he came home, if it wasn't ITP it could be leukemia! (ITP can be a symptom of leukaemia.) He said 'babe, i cant have the same as you and i feel fine, don't worry!'

He came home a few days later and refused to have a blood test till the next day, i looked over his large unexplained bruises and freaked out! The next day we went to the doctor and i said 'i think my husband might have ITP, he needs a blood test.' The doctor agreed and commented that it was unlikely and rare if we both had it. I knew he had it, i had been through it.

Mr A said, oh well, we will find out tomorrow. I said 'go home and pack your bags, they will call you at 5pm!" Of course he didn't listen and invited a friend over for the afternoon. At 4:30pm i was watching the clock. I knew they were going to call, as rare as it would be, i knew he had ITP too.

5:00 his mobile rings..... I stare at him while Mr A gives one word answers. He gets off the phone and says "Shit, my platelets are 5." We have to go up to emergency now.

I remember the call i got 6 years ago. 5pm. Platelet count of 5. What i went though. It was too much.
I bawled my eyes out and said "i knew it!!" So we frantically called our parents who were shocked! "Both of you? are you serious??" Packed a bag and dropped the kids off for the night.

The doctors in emergency tried to explain to Mr A what was wrong and we just giggled. "Yeah we know" we kept saying. The doctors asked us how we knew so much about the disease already and Mr A said "My wife has it" Pointing to me. I will never forget the look on the doctors face and he went to tell the other doctors on duty!

What followed was a few days in hospital and months of steroid treatment. (What i was most upset about! I hate those things!) They tested him for leukaemia and did a bone marrow biopsy which came back negative. It was definitely ITP. Still couldn't believe it!

Mr A has done surprisingly well though, my ITP was chronic whereas Mr A's ITP fixed itself in a few months! Although we have it for life and can relapse at any time. If Mr A relapses, the doctors will take out his spleen as they did with me. So far so good!!

My Story

I woke up one morning after a big night out to find that i was covered in bruises and funny red/purple dots all over my legs, i put the bruises down to having such a large night and maybe bumping myself that i didn’t remember. The next day i was in the kitchen when i could feel something in my teeth.... i got it with my finger and found it to be a massive blot clot! then i had more later in the day, i though something might be up with my blood as i had given birth to Master Z, 4 months earlier... and i was still bleeding, when it’s supposed to only go for around 6 weeks!

I went to the doctor that day because i had already booked an appointment for my Master Z’s 4 month vaccinations; i would ask the doctor then.

I had completely forgotten to ask the doctor and was ready to leave when she noticed my legs! She sent me straight for an emergency blood test but me being me decided to go the next day as my son was grizzly after his needle.

About 3 hours after the blood test the next day, i was home about to prepare dinner when a doctor rang me and told me to get myself to the hospital emergency, they were expecting me! I’m like... what? I feel fine? I have a newborn baby!

After slowly packing a bag and organising a babysitter, Mr A and i went to the hospital where they did another blood test... and another...

I spent the night in emergency and then spent the next week in a hospital ward. I was diagnosed with Idiopathic Thrombocytopenia Purpura.

I started on 150mg of prednisone (never again) and was on that for ages. I won’t even go in to detail about that drug but i hate it more than anything in the world, yes it worked but sent me almost mental! i had lots of crazy stuff happen (after taking it for a year.) I had to see psychologists and everything. Turns out that steroids are not for me! I went through a year of my platelets never being over 100 and i was suffering every single side effect, to the max!

I knew you were not supposed to but i stopped taking them cold turkey (you can die.) Following, was a week I’d like to forget. Huge withdrawals.

After that, the doctors didn’t know what to do as i couldn’t have steroids and vincristine would make me too sick and i had a child to care for, so they opted to take out my spleen.

This happened 2 years after i was first diagnosed and the best thing i ever did.

I went to hospital and they put me to sleep and when i awoke i though they were still operating on me! I had the worst pain ever and 2 doctors standing over me, touching my face with blood on their hands! Turns out my nose

was bleeding due to the tubes that had to go in (as well as my mouth!) phew! I was in hospital for 4 days and lived on ice; i lost weight (which i liked!)

It has now been 4 years since the operation and i feel fantastic. I started out having daily blood tests for 6 months, to weekly for ages, then once a month and now I hardly ever have them. I am in remission! I feel great, no more hospital visits, less blood tests, 3 tiny scars, and i can say that I’m no longer sick. Fingers crossed I don’t relapse.

The Beginning

Where do i begin?

 I decided to create this blog after searching for other 'families' with Autoimmune disorders and found nothing. I still cant believe that 3 out of 4 of my little family has one - and to watch for symptoms in the 4th.

6 years ago i was diagnosed with Idiopathic Thrombocytopenia Purpura. An Autoimmune disease where your body destroys your platelets.

Nearly a year ago, my husband - Mr A - was diagnosed with the exact same thing. Doctors were baffled - its not contagious. I was bawling, i had been through it and it was not pleasant.

We were together long before either one of us was diagnosed - what are the odds that we met and fell in love?

Worse. Before either one of us was diagnosed - we had a son. - Master Z. He is currently 6 years old and 9 months ago was diagnosed with a mixed connective tissue disease. Sjogrens Syndrome is one of them, we will not know what else he has until he shows symptoms.

We have been told that because Mr A and I both have Autoimmune disorders, it is likely that our children will too. We had Master Z before we were diagnosed! So we are worried for Miss J also.

Fingers crossed.

So here is our story. I dont know how it will turn out. I only know how it has begun.
Hopefully this blog will be uneventful but id like to think that others out there can read it and not feel alone.