Struck down by rare disease

After weeks in hospital and lots of uncertainty, my husband is finally home with his family.

Derek was diagnosed with prostate cancer in May 2012. He had surgery the following September and it was a success. He is now cancer free.

What we didn’t know at the time was that the surgery also triggered a catastrophic series of events and that he would almost die.

The problems started with Derek’s slow recovery from the surgery. He was so tired he couldn’t do anything. After multiple trips to his doctor he was finally admitted to hospital.

Over the next few days he had a partially collapsed lung with a query of pneumonia, plural effusion, acute kidney injury, transient liver damage and myopericarditis.

It had turned into an episode of House and Derek was the patien

Specialists from urology, infectious disease, general medicine, haematology and cardiology all tried to work out what had gone wrong.

So it was decided that general medicine would run the show.

After several days in an intensive care situation, he was diagnosed with probable catastrophic antiphospholipid syndrome (CAPS), a very, very rare event.  

Eventually we got an answer.  He had suffered an adrenal infarction, which had put him into an adrenal crisis. 

As he was about to be released they discovered a pericardial effusion which meant another week in hospital.

After three weeks in hospital Derek finally got home.

This was just the start of what has become a very long journey to partial recovery.

The general opinion from the doctors that saw him was “we can’t believe you are alive”.

Yes he is alive, he is doing OK. Ten months on, he is working full time (just) which is very surprising to most because he is still recovering.

He is also now learning to live with adrenal failure.  

Derek was fit and well before he went for surgery, this, and determination, is what got him through.  It is also what is getting him through recovery.

There are days when he still “doesn’t have enough data” (Derek is a software developer) to function fully at a mental level.  At those times, he also doesn’t have enough energy to function physically.

His day involves taking medication at 6am, 7am, noon, and 4pm to stay alive, and then more medication at 6.30pm to make sure he doesn’t suffer any form of blood clot again.

Stress is something we now try to avoid, which isn’t possible when you work in a stressful job and and have two teenagers, but we are getting there. 

It will be months yet before we know what life without adrenal glands is going to be like, because it is going to be months yet before Derek has recovered.

What we do know is that CAPS has a survival rate of about 50 per cent.  Adrenal crisis, can also kill when you don’t know you have it.

We have met one other New Zealander online, who has both CAPS and adrenal infarction.  So when I tell my husband he is one in 1 million that is pretty close to the mark, it is not because he is a great father, husband and friend. 

It is because there are so few people around like him.

If you are interested in following him through his recovery, then you can visit our blog 

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