I have just received some sad news that my Swedish friend mentioned below has just died from complications following an operation for a peptic ulcer. He was 76 . I suppose the good bit is that he did not die from his Poly cythema vera .
I have searched through my old notes on my case which may be of interest .I am now nearly a 74 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 74 years old ET diagnosed in 1996 but some evidence of MPD in 1985 9 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
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catkinspolymer
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I’m really sorry to hear of your friend’s passing. I know you have mentioned him before on your posts. I would like to pass on my sincerest condolences to you.
It’s good to hear that your ET hasn’t interfered too much in your life, and gives us all hope.
All I can suggest is keep well monitored, so that your blood can be as near normal as possible. With the right treatment you hopefully will see your grandchildren as I have just done , all the very best Town crier
Sorry to hear about your friend. You and I are the same age. Your ET dowes ndot sound too bad. I was diagnosed with ET around 2003. 14 500mg Hydrea per week plus the baby aspirin. Nine months ago I transformed to PV. 2 weeks ago my doctor did another BMB and said I have transformed to MF. I have a 1% blast in my blood. I'm afraid I'm heading toward AML now. I am very thankful that my last 15 years I have felt great. I have most of the risk factors for a short prognosis for MF now.
It seems that an MPN could be a blessing in disguise, with your colleagues dropping off like flies but you still soldiering on. I was diagnosed at the age of 60 with ET. I used to think of myself as invincible but this self view was shattered and it forced me to start taking good care of my health. Now I actually feel really well, still got some fatigue like most people of my age but other than that life is good.
So sorry to hear about your friend but so glad your ET is under control. I do wonder what triggers all these conditions but I guess we might never know for definite but like you, I know we’ve just to get on with it.
Condolences, love and E hugs when you need them. Kindest regards Aime xx😺😺
I am sorry to hear of your friend’s passing. I wonder how My ET JAK2 + got turned on too. I don’t understand the chronic inflammation that is often mentioned. I only know about inflammation you prescribe Prednisone for. I see too many proposed remedies to believe in one. I know Obstructive Sleep Apnea can cause PV but it’s not a MPN. It’s just a physiologic response for the body to produce more cells for more oxygen. My father snored before they knew how harmful it is. He developed PV but it was an MPN so it is that rare familiar type. He was an identical twin so I am trying to see how my first and second cousins are doing.
Have you received advice on countering “inflammation “?
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