It has now been well over two months since I started undergoing intensive ECP treatment, twice weekly and I am pleased to say things are improving!
This treatment is considered to be on the ‘fringe’ by many doctors but the Clinical team tell me it is effective in 80% of patients . Results become apparent over months and years rather than the days and weeks with conventional medication.
We had a catchup with Hematologist Amit Khot last week and the news was positive. After a few tight pinches of my skin he announced that there was definitely a softening of my skin and the treatment was worth pursuing. He was so happy with my progress that he has reduced the treatment to once weekly.
He did say that for some patients without a sign of improvement at the two month mark he recommends stopping the treatment.
During our visits to Peter Mac where I might be in the chair from 3 to 7 hours we have met many patients undergoing similar treatment. It makes you realise that there is always someone in a worse position than yourself. Two of my new contacts have horrific skin presentations – almost if they have suffered 90% burns to their skin with massive discolouration, blisters and tightness that makes my skin look like a babies’ bottom. Sometimes you realise how lucky you are!
With the improving conditions my breathing has improved as my diaphragm has ‘softened’, it was quite tight and restrictive prior to starting the treatment.
I now have a full range of movement and despite a tight abdomen I can complete most exercises.
Unfortunately there is no real objective test of skin elasticity other than the ‘pinch test’ so I have been developing my own using a mini penetrometer (an engineering device for measuring soil density). The doctors are skeptical but I am confident I am on to a medical breakthrough!
I’m back up to 20 odd tablets a day, including a high dose of Prednisolone which has led to a significant reduction in muscle mass. I have lost almost 10kgs in the last three months which puts me back to mid 2018 (post transplant).
I long to do just one push up again! Thankfully I know I can return to full health as I have achieved this before, but it is so disappointing to slip back so far. As I’ve said previously it is like a huge game of snakes and ladders and I’ve just landed on the big snake near the home run – now for a ladder!
One recent ladder to mention is my recently diagnosed Type 2 Diabetes. This was entirely drug related and now that my dose has been reduced on both Prednisolone and Tacrolimus my blood sugar levels have returned to normal and I have kicked the need for insulin – yah!
Melbourne Lock Down
It is not the ideal time to be in Melbourne for treatment as Stage 4 lockdown certainly restricts our movements. Our major social activity for the week is heading off to the hospital and catching up with the nursing team – a bit sad but reality.
We do manage the allowable one hour’s exercise a day (sometimes more but don’t tell the teams of police and ADF personnel patrolling the streets of Melbourne at the moment). This generally involves a walk in the morning and a bike ride in the afternoon.
We lashed out and purchased some E Bikes last month (after a huge recommendation by good friend Peter Clucas) and we love them. It has made bike riding very enjoyable, when you hit the ‘turbo’ button the hills seem to disappear.
Zoom has kept us in touch with family and friends. We are looking forward to getting back to Tassie, hopefully at the end of the month.
Thank you for your phone calls and messages – it means a lot to me!