I have two beautiful children and all I can think about ever since I was diagnosed with MPN on 11/3/2020 is how much I want be around my kids and witness them grow.
I am very curious to know when you were diagnosed with MPN, what kind you have and how old you are now.
It is very encouraging to see you guys who’ve had it for awhile and are living an almost normal life. Please share. Thank you!
Also, if you may, please also share the struggles you’ve had living with MPN. Thanks a lot!
I was 63 with ET CALR now 68. No change at all, no symptoms, only high platelets. Still working shift work 4 days week. Will retire next year. I think keeping active has helped me keep well. Will have to keep up with the exercise once finish work. Oh I do take daily aspirin.
Thank you! I’m 34, female, Jak2 positive and just completed bone marrow biopsy. I will be visiting my hematologist tomorrow to know more.
Trying to figure out what changes I need to do to remain healthy. I used to work out regularly but since the lockdown, it’s been tough and I always feel super tired so I never make it through a workout.
I was 27 when diagnosed PV jak2+, aged 50 now, lots of new treatments about now xx
I was diagnosed with ET aged 39 in 2001. I was in pretty good health for 19 years, perhaps just a little more tired than "normal" people. This year I progressed to MF so am getting used to greater fatigue but it's not as bad as I expected.
Hi Margarita. I was 38 when I was diagnosed with PV and am now nearly 54. It is not a death sentence. Live healthily, drink plenty of water exercise, listen to your body and dance like no one is watching. Much love Mel xx
I was diagnosed at 46 and am 61. I wouldn't say my life is normal but it is happy. Learn as much as you can (from good sources!) and find out how your body manages the disease and listen to it...harder done than said, lol. Take help when you can and be glad when you have those that want to help. In the beginning, I fought that a lot, now I just say thank you.
I was 72 with Jak 2 + now 75
Hi there worry not, I'm sure you live a long and fruitful life. I'm in the uk, with pv on 1 hydroxy tablet a day, diagnosed with pv at 54 now 56, I have a 6year old, so would like to keep going as long as possible.
64 years old now, ET, JAK2, CALR since May 2012. No symptoms, platelets have been in normal range now for 2 years. Only medication I take so far is daily aspirin. I work fulltime in a radiology department as a cat scan/xray tech. Plan to retire next August.
Thank you for asking this question, it’s so reassuring to see the answers! I am 45 and was diagnosed with ET Jak2 in October. I have 2 young children 😊
I’m 44 diagnosed at 42 with ET Cal-R. Was on Pegasys interferon, Hydroxy and aspirin but dropped Hydroxy this time last year 🙌🏻I was diagnosed when I had a 3 month old baby so I understand how panicked you can feel. Almost 2 years in since diagnosis life is pretty good, I feel well and have few side effects. It takes a while to get your head around but try to use it as a reason to live life to it’s fullest. None of us know what’s for us (Covid anyone?!?) so a positive outlook is a huge benefit.
I hope all goes well with your Haematologist. Sending you love x
I am 37 and I was diagnosed with ET triple negative a few months ago, in lockdown. I know it feels scary as you start to get you head around it (I'm not fully there yet). I also had to get over my needle phobia to self-inject. My advice is: only read things on reputable sites, ask questions (no question is a silly question!), drink plenty of water and exercise helps to give you extra energy.
I was diagnosed at 65, by chance rather than through symptoms. I am JAK 2 positive amd take hydroxy. I'm now nearly 70 and thankfully very few real issues -just chasing platelets.
Hi Margaritampn,
I was 30 when diagnosed with ET, I was diagnosed with PV a few years ago and I am now 51.
There are now more drug options and trials with more in development than when I was diagnosed over 20yrs ago, and there is no reason you can’t live a long and happy life. I view MPN’s as life limiting not life threatening.
I was in denial for the first 10years but once I accepted the fatigue, paced myself and stoped feeling guilty for taking time out, my quality of life improved.
Good luck and have fun,
Ourlife
Hi I was 35 when diagnosed with ET I am now 69, still here 👍
I was diagnosed with E T JAK 2 positive 10 years ago now and am 76. I have had more fatigue than normal but not enough to prevent me being very active. I do a lot of gardening, housework decorating etc. Just keep going is the best advice I can give.
Hi MargaritaI was diagnosed with PV jak2 neg at age 50, am now 65 and am on daily Asprin and 1 Hydrea tablet 5 days a week. Following my last BMB a year ago it was suggested I may be Pre MF.
I have recently retired from my job due to covit as it meant dealing with so many people but other than that I lead a reasonably normal life. The main issues that I have to deal with are fatigue and bone pain which means that I need to be careful in what I do.
My first Grandaughter was born last March so my first target regarding her is her 21st birthday which I hope to be around for.
My best advice to you is not to worry too much, learn all you can about your condition, live life and above all enjoy your Children.
In the meantime keep well and safe.
Garry.
I was diagnosed at age 52 in 2008 with ET Jak 2 positive and progressed to MF a couple of years ago. During those years, there has been much research and you will benefit from that. Before MF, I led a pretty normal life, although I had bouts of fatigue, shortness of breath, and I felt light-headed, at times. But, I believe some of that was caused by the medication, not the illness. One thing is for sure, you will live many years, so find an mpn specialist who will help you along the way. And, you will find great information on this site.All the best.
Cindy
Diagnosed aged 60, now 63 ET Jak2+ Suspect I have had it much longer, having suffered with pins and needles and burning feeling in the fingertips and itching in forearms periodically for the last 15 years or so.It's all normal life for me now, odd periods of fatigue but it doesn't last long, could just be that I'm not 40 any longer but expect to still be able to do the same things at the same speed!
I was diagnosed with ET in my mid-thirties - about 30 years ago. It progressed to PV about 7 years ago. At age 65, still alive and kicking. I have raised 2 kids and have 1 granddaughter. Life has been good and despite some more recent challenges, remains so. Please look forward to a rich successful life in which you will watch your children and then grandchildren grow up. There will be challenges along the way, but we all face those, with or without a MPN. For most of my life with a MPN, I was on aspirin-only and did fine. My biggest ongoing challenges have been with systemic inflammation resulting from the JAK2 mutation. There have been some interesting learning opportunities in recent years, but when you hit your 60s it goes with the turf. I expect you can look forward to the same.
All the best to you,
Chances are GOOD if you follow doctors instructions. I was diagnosed in my late 30s or early 40s. I am now 78 and live alone now. I make my vegetable garden every spring and pressure can some for me and share with my neighbors. My Doctor has had me on, NO RED MEAT, NO ORGAN MEAT like chicken livers. and I am on NO IRON vitamans. I eat when I am hungry rest when I am tired, I walk a mile every day. I do get forgetful but I am 78. I hope this is of some help
I was 37 when I was diagnosed and am 58 years old now. Back then it was only a disorder. Jak 2 MPL and CALR mutations weren't even discovered. I am JAK2 +.
Diagnosed in 2013.Now 64. Aspirin & phlebotomies only , asymptomatic .Manage my own condition largely. Stay fit and positive now.No excessive tiredness which seems to be main affliction of others.
Hi. Diagnosed with ET jak2+ after a stroke aged 46. Now 48 and feeling much better. Take care Jx
I was diagnosed at 52 and am now 64 with PV. I'm JAK2 negative and on daily aspirin and venesections as and when required - usually 3 or 4 a year. My Ferritin level is very low at 4 and doesn't want to go up unless on iron tablets, which puts me in the loop of hct going up and needing more venesections. So sitting on the fence at the moment. I worked until February when I decided to take early retirement as I had a company pension from a previous job. Other than some days being extremely tired, which is common I lead a normal life as possible as I look after my disabled wife, who has now also just suffered a minor stroke. You adapt and what you think isn't the norm becomes the norm. Don't worry,medical science is advancing all the time. Enjoy life.
Diagnosed at 55 (ET CALr) now 71 and feel fine. The "secret" is to eat well & exercise often, even when you don't feel like it! I gym/swim/pilates 3 times a week until covid shut them down but will be back as soon as the vaccine takes effect. Stay positive!
Hi , I was 42 with two small children when a blood technician spotted i had Myloproliferative disease , which was later diagnosed as ET. I am now 76 and have a lovely grandson.
hello there, I was thirty seven when diagnosed with three young children and a full time job. I am now fifty seven, not only have I been around for my children we have been blessed with 2 grandchildren. No longer working but enjoying our lovely family. Take care.
I was diagnosed at 31 with 2 very young children and it became clear later I'd had it from my early 20s - now in late sixties so have had the privilege of seeing my children grow up. The fantastic advances in the medical knowledge of MPNs and available drugs, especially over last 20 years, I find breathtaking. This I'm sure will continue - just look at speed the Covid vaccines have been developed.
Great string of posts here! I was diagnosed a year ago with ET JAK2+ 43 then, only on aspirin (which has taken my aura-only migraines away! Yay!). It’s stressful -especially the first 6 mnths and then when doing blood tests but I feel great health wise. Suggest hatha yoga as a relaxing way of getting some home exersize if you have trouble with fatigue (youtube - fightmaster yoga eg).
Wow, this is great to read all of the positive long life stories. I am 45 and was diagnosed last year with PV. I am still struggling to get my platelet and hct levels down but at the moment am just on asprin and venesections. Likely I will have to start taking medication next year which I'm trying to put off!I also have a young child and have found the diagnosis quite scary so I am very happy to read all the wonderful years people are living.
Thank you all!
37 at diagnosis, now 59. Et Jak2 on Pegasys for almost 3 years.
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