Is it just me, or has this disease taken over my life? Problems since being diagnosed.

[Devrob71]

Since I was diagnosed in early 2014 so many things have changed for me personally. I never had any health issues prior to having ET. Am I just down on luck or have others had such a drastic change? Since diagnosis I have elevated blood pressure, elevated cholesterol, hypothyroidism, tibia and peroneal neuropathy, vision changes, major fatigue, deep leg pain to name a few. I'm too young for this! It gets very depressing some days. I started on Anagrelide but after about a year and a half I was switched over to Hydrea of which I take 1,000 mg every day with baby aspirin. My arsenal of medication has gone from 1 vitamin to too many to list.

[Hidden]

You're not alone Devrob.

I am 62 and I was diagnosed with ET when I was 41. It has been 21yrs ago. I am hypertensive, with pre-diabetic condition. So, just like you, my medicine box is getting full. I started with Hydrea and folic vitamin. Now I got 5 ( tablets and capsules) to take everyday. Goodluck to us both 🌺😊🌺

Lis Manuel

[e-mail]

[Devrob71 in reply to Hidden]

Yes, good luck 🌺😊

[Hidden]

Once they started looking 7 years ago ET JAK+, cerebral vascular disease, stage 3 chronic kidney disease, permanent atrial fibrillation, hypertension, PFO, Prostatatis, sleep apnoea, hiatus hernia, inguinal and scrotal herni (removed) total knee replacement, thyroid problem, sight changes and some disease in my alveoli and bronchioles that I can’t recall.

Other than that I’m fine, I think. 😏

[Swede]

Hi there,

yes, it definitly changes ones life. I have always been well, exept some sport injuries, but now I look like a 100year old person so I have had 40 years taken away from me.

Yes, medication in kilos! And then a tablet for the side effects from the first one, as well as another tablet for the second one...and I should avoid this and that...not drink this and that...travel insurance 5 times as expensive if I can get one...the list goes on and on ....

[Devrob71 in reply to Swede]

Hate to hear you have a lot of changes too. It's always good to know others can understand. Best wishes 🌺😊

[Wyebird in reply to Swede]

Makes my blood boil when it is stated that quality of life will be GOOD. After reading all these replies I think l’ll start a 1 man crusade to change their thoughts.

[Garden987 in reply to Wyebird]

Problems since being diagnosed. Hi Wyebird. I agree with you about life being GOOD. Rubbish. I have no quality of life although do have other chronic illnesses. Feel I have been robbed of a life so make that a 2 man crusade.

[Wyebird in reply to Garden987]

Thank you, I’m going to make my feelings known every time I go to an MPN forum. I’ve told all my friends I’m supposed to lead a good quality of life including my family. The result is that those who know me are divided into two categories. Those who enquire about my health and those who wear blinkers.

Typical conversation with a family member who phoned a few months ago to discuss an issue. I said sorry can’t concentrate, too tired to talk going through a rough patch at moment.

She replied ah yes but........

Sorry I need to rest

She replied ah but........

It was like knocking on wood.🌲

I just tell myself maybe she’s not the intelligent one after all, lol.😃😁

[Garden987 in reply to Wyebird]

Problems since being diagnosed. Hi Wyebird. Yes, I have two neighbours like that. Trouble is I have absolutely no one in my life now - they've either died or abandoned me. It would be lovely to tell someone how we are really feeling. It's good to be positive and I'm glad for those who are dealing with this. Keep trying to remember there are people worse off than me but feeling rubbish for 10 years have had enough. Fighting through fatigue makes it worse and I pay for it. How I would love to be able to go for a walk. Am virtually housebound now. Bloods are fine so what's going on? Can't get any answers. Sick of infections and having to cope alone. My system is worn out I think. Let's send each other lots of TLC. Kind thoughts.

Mary

[Wyebird in reply to Garden987]

Oh Garden987, I want to hug you. Are you UK based? If so where?

[Garden987 in reply to Wyebird]

Problems since being diagnosed. HI Wyebird. How are you today.Felt your hug - thanks. I. Live in Monmouthshire about2 miles from the first Severn Bridge. "That" neighbour called in yesterday and the first words were to tell me about her dog's ear infection. Made my day! Look after yourself please and a hug to you too. Mary.

[Wyebird in reply to Garden987]

Lol, I know exactly where you are coming from. My family being the biggest culprits. You want to scream at them.

You should have said ‘I wish I had just an ear infection ‘

If you are like me you think about a response after the fact.

PleAse shout ‘hello homeland from me’ I live in Yorkshire now. From Swansea originally. How I miss the Stunning GOWER. If I lived closer I would have met you.

As for me I’m much improved on last Friday. Still not back to ET normal.

Cwtches galore!

[Purr-cat in reply to Wyebird]

Hi there,

My family are all well read and capable of looking information up on the internet but they have chosen not to. As a result they have honestly spent 25 years not believing me that ET is a type of cancer! It hurts when they criticize me as if I had a choice of being so fatigued!

PS: There are some good points to be said for Yorkshire though, like it has lovely rain

[Wyebird]

Hi Devrob71 my problems are insignificant compared to yours.

Please hold it all together. Speak out to your haematologist about your feelings there maybe help for you. I was offered and had counselling.

If not and you are in the UK ask Maz of MPN voice for a buddy.

Xxxxxx.

[forwardocho]

Morning

You are not alone! Prior to diagnosis, I danced 3 hours a night, 4 times a week, now I can barely climb a flight of stairs without gasping for breath. My life has changed considerably since diagnosis which doesn't help being combined with the menopause. I'm on 2x 500mgs HU and have now been taken off aspirin altogether. I have ET Jak2 neg, aged 50. Diagnosed January 2016. I also take tablets to slow my heart rate down and try to control the palpitations. It's never ending!

[Devrob71 in reply to forwardocho]

It's glad to know I'm not alone but I hate others are dealing with the same issues or others. It really is never ending. It's frustrating when doctors look at you as though it's not the MPN that's causing them all. Best wishes 😊🌺

[forwardocho in reply to Devrob71]

Those used to be some of my consultant's favorite sentences every time I mentioned something. He would say "it's not related to ET", or "that's not a symptom of ET" and even "I think a lot of the side effects are in your head"! I now tell him if he uses those sentences in any appointment I will slap him! Considering I was a dancer and could dance non-stop for 3 hours a night with only achey feet to complain about the next day, to what I can do now, which is basically swimming, I would say it WAS the disease. Luckily, this group can relate to everything you're going through, so you definitely are not alone in that sense. Best wishes to you too. x

[Wyebird in reply to forwardocho]

E again show your consultant all these messages and ask him/her if we are also imagining.

[Wyebird in reply to forwardocho]

Hi forwarddocho

Is there any reason for you to come off aspirin? I am certain it’s important that you take both aspirin and hydroxicarbomide. Please research.

Take care I do hope you feel better soon.

[forwardocho in reply to Wyebird]

All my levels and bloods are normal at the moment and have been for the past 6 months. Initially, he took me down to every other day for the aspirin but now feels I don't need to be on aspirin at all. I'm still on HU and have FBC's every 3 weeks in between appointments to check my levels.

Best wishes

Angela

[Indigo42916]

I completely understand, just turned 60 diagnosed with ET in 2014. I have extreme fatigue daily, and bone pain. The pain has now caused hypertension, which I never had. Taking Zyrtec for the pain for now, but not a cure all. Also have headaches, and ertythromelalgia.

I am trying to avoid prescribed meds. as they come with their own side effects. Before ET just vitamins.

When I read with ET you will live your normal life, I think they need to stop saying that, these symptoms change your life!

I am thankful for great doctors and great insurance, but researchers need to also focus on good drugs to alleviate the symptom burden, without creating more symptoms!

Take good care, you are not alone!

[Devrob71 in reply to Indigo42916]

I agree with you 100%! This is by no means a normal quality of life. Take care 😊🌺

[champ30]

At last loads of people who feel rough most of the time with breathlessness, fatigue, mentally tired,lack of concentration,too exhausted to chat on the phone especially at the end of the day like me.I have been annoyed at hearing from people who seem to do everything normal.

My condition is high risk myelofibrosis,plus MDS.My specialist nurse has told me to Pace myself, which is what I try to do.I also have bronchiectasis,a chest condition.It's hard managing all these conditions.

Regards Lyn

[Devrob71 in reply to champ30]

I'm so sorry you have all the extra things going on. 😔 It's hard enough with an MPN to have a "normal" life.It is good to know that we are all not alone and others deal with the same issues. MPN diagnosis is life altering. Best wishes 🌺😊

[Roger41]

I am 65 at Christmas and I intend to claim my pension.

I try to keep fit in spite of pill piping every four hours, I have type two Diabetis, liver issues suspected hiatus hernia and gurds.

Like trophys I seem to collect them. it keeps the medics on their toes.

My body is crap but my mind is ok.

Keep going we are not alone

There is always some one worse off.