old age and ET

[catkinspolymer]

From: CHRIS ATKINS <[e-mail]>

To: [e-mail]

Subject: Essential Thrombocythemia and the RUBBER INDUSTRY

Sent: Tuesday, 19 August 2008

Hi Allissia

I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.

I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.

Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance.

It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?

Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.

all the best hope the spelling is up to the mark.

all the best

Chris Atkins

Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.

[psychedelia61]

Hi Chris, that is very interesting! From your post, it seems you live close to me in Wiltshire. Can I just ask a simple question - where do you go to have your venesections?...the travelling for me is a 2 hour round trip to RUH, then a couple of hours in the hospital which makes it around 4 hrs just to give a pint! Its ok whilst I'm young enough, but I worry if I reach older age that I wouldn't be able to make these trips and what would happen then.

It's the mention of the rubber industry that sparked my attention - my dad worked at the Avon for years, before I was born and for many years afterwards. I have been diagnosed with PV since 2013...not sure if there is any connection, but an interesting fact though....

[catkinspolymer in reply to psychedelia61]

hi psychedelia,

I live in Cricklade which is about as far North as you can get in Wiltshire , Blood work in Great Western hospital Swindon. Generally works well.

I can tell your local as we all used to call it "the Avon"

Chris the Town Crier

[lizzziep]

Pleased you're doing well, and keeping active - very important!! Hearing you have coped well with ET for many years is an inspiration for those of us who have only had it a few years.

Best wishes

Lizzie