Sept 2020 – ECP is working!

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!

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ECP treatment is like dialysis and can take 3 hours plus another 3 for additional top ups of things  like IVIG or magnesium.

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!

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A penetrometer is my new medical device to assess skin elasticity.

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.

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WE regularly see the police and ADF in Docklands keeping an eye on things.

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.

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We love our new E Bikes

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.

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We missed a massive snow dump no our farm back in August.
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The chooks have been holidaying at our neighbours’ place after two went missing!

Thank you for your phone calls and messages – it means a lot to me!

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During the COVID lockdown we managed to have a Venn diagram, physically distanced catch up with old Wagga Friend Mike Rouch.

 

 

3 thoughts on “Sept 2020 – ECP is working!

  1. Hahahaha I hope you patented that penetrometer mate. What’s it new medical term for marketing purposes???

    My god it’s snakes and ladders alright

    Here’s to the last ladder for you hopefully, time for some good luck

    Sent from my iPhone

    >

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  2. Hi Geoff and Jan

    What a ride this has been – and you are such an inspiration that you have stuck to it. Sure is snakes and ladders – meanwhile everyone else seems to be playing twister – tying themselves in knots in lockdown.

    In the ag world, as you will be reading, many things are going very well. Hamish and I recently drove to Walgett for our annual bull sale. We quarantinied 🙂 in Dubbo for 2 weeks, before heading out to Walgett. It was wonderful to see the countryside looking so amazing, crops fence high, and people slowly re-stocking. Hence cattle sales have been very strong.

    This year we videoed all the bulls, (which we have been doing in Vic, not NSW), as an extra tool for remote users. In a great result, almost half the bulls sold online, through AuctionsPlus, and every bull received a bid from A+.

    Family are all well – George still working at Mortlake – has been there 2 years now. Caroline and partner have been living with us since April – she says PwC will be making changes towards more remote working, which will be great for her. Olivia is still adapting back after Sweden, but going quite well. She’s doing final year of Uni, and works 3 days a week for the local Senator (Sarah Henderson) which she really enjoys.

    Jan, I can’t imagine how many Zoom calls, and “MayDays” you have had on the School Council! I hope everyone is coping with the pressure OK.

    We would love to see you both, when you are able to travel – to come and stay for a night.

    xx Gub and Hamish

    On Mon, Aug 31, 2020 at 12:52 PM Geoff Beats Leukemia wrote:

    > geoffhamo posted: “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 ef” >

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  3. Dear Geoffrey and Jan, we were very surprised reading the latest Posts on your blog. It looks like you have to be really patiënt and really brave! We are sending some Belgian mental support and hope you will be out of the woods asap!!
    Meanwhile we are ok, no more lockdown in Belgium although Numbers of contamination are rising quickly now. Tine is in year 4 of medical studies and Hanne is starting her first real job tomorrow. It was really hard to find something good in these weard times. Gino is fine and so am I. Still teaching and enjoying it.
    Hope we can meet again one day and swap stories (as you always say).
    Take care and love from Belgium
    Nadine Gino Hanne Tine

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