Good results from ECP

It has been over four months that we have been ‘holed up’ in Melbourne with just one week back in Tassie during September. Of course Melbourne would be the worst place in Australia to live at the moment due to the harsh COVID lockdown.

Never the less we have managed to pass the time easily with plenty of walks and bike rides. Unfortunately we haven’t been able to visit friends. And of course our major social outing has been the weekly trip to Peter Mac, talking to the very friendly nursing staff.

The results from the ECP (Extra Corporeal Photopheresis) treatment have been very positive. It certainly has stopped the spread of my skin disease (Schleradermatous skin) and in many areas has softened my skin making it much more comfortable to move and get around.

For many people this condition results in severe mobility issues which worried me considerably. However I believe I am through this stage and the future looks promising.

I had experienced bowel problems with severe pain and diarrhoea over two months and at one stage found it was causing me more grief than my skin condition. My medical team were at a loss to determine the problem thinking it might be a side effect of one of the immuno-suppressant drugs, Mycophenolate, or perhaps a low grade infection that had not been detected via my weekly blood testing regime.

A colonoscopy was ordered and results confirmed CMV in my gut, which has not been detected in blood or stool samples. This was treated with Valganciclovir – an anti-viral drug which cleared up the situation within days. What a relief.

Jan is now a media star being interviewed for a new Podcast Series developed by the team at Peter Mac, called the “Straight and Marrow” – a series to help people understand Bone Marrow Transplants.

The plan from here

Having consulted with Amit we now have a new plan. I have been weaned off most of my drugs (such a relief having maxed out at over 30 tablets a day). I am now on just 7.5mg of Prednisolone, completely off Mycophenolate and just 0.5mg of Tacrolimus daily, plus a few others including Amoxocillin, Magnesium and Bactrim – what Bliss!

Amit has reduced the ECP treatment to fornightly which means we are free to return to Milford- yay! We will be commuting back to Melbourne regularly but hopefully the COVID situation will settle down and we will be able to come and go without having to quarantine each time we return to Tassie (self isolation on our farm luckily).

Thankyou to everyone who has send messages and contacted me – I really do appreciate your support.

Over the past month I have been interviewed 7 times by young resident doctors practicing for their specialist exams. They have each taken me back through my complete treatment from diagnosis to current treatment and after an hour it feels like a good therapy session.

One of their last questions is “what do you see yourself doing in 5 years?” My answer is simple – the 6 Fs. Fitness (health), Family, Friends, Flying, Farming and having Fun. Quite simple really!

I will continue my blog later this year or early next year subject to any new news but for now, thanks for reading!