I've been diagnosed PV for around 8 years now and had the emotional ups and downs you can expect with this, but no one can tell you everything. Last week I was with the Hemo clinic and have gone from one to two hydrox tablets on alternate days, the effect was awful, taking me back over the course of a week to the start of my treatment years ago, fatigue and low low moods. After dropping back to one a day I'm almost back to a "normal" position over the last 3 days, to some it may seems I'm on a very low dose of the meds here but the effect was almost instant. I plan now to start the double dose tomorrow, 1 in the morning 1 at night over three days instead of two.
Like everyone, I didn't ask for this crappy disease, we just have it and have to get on with things but if you don't have it, you would never understand the effect of the hospital visits that put a question mark over your mortality each time you go or when you have these type of set backs and the fear it brings on of "how long have I got then?". I recently lost my sister at 64 to COPD, her husband only just recovering from a bowel cancer op and now halfway through his chemo, he is 65 tomorrow, life can be a real barst****, but here we are. I suppose what I want to say is, I am grateful to my medical team for the treatment over the last 8 years but they never consider how the treatment we are given can affect us emotionally or why or the mental impact we face with this and the other related conditions, treatment is not just giving out pills and testing the results, think outside the "box" people before we end up in one!
We are people after all, not just machines that are not running very well and no two of us with these conditions are the same or react the same, to those doing well, blessings on you for your spirit, those that sometimes fall over the emotional and physical hurdles, find what need to get you through the low times and when you need help ask, finally last Monday a new young nurse after listening to my woes told me, "you can have counselling if you need it", that alone was a help, maybe now is the time? Chin up all!
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Michael56
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Hi Michael,I too have PV,been thru the same ups and downs an d the depression.I did have some counselling at my worst time,from the psychiatric Dr at the hospital where I was diagnosed . She was a great help,and prescribed an anti depressant for a short time to help come to terms with my total life change.At the moment ,after having been fairly stable on 1hydrea morn &1evening plus the blood thinners,my hematocrite has suddenly shot up,I now take 2 morn & 2 evening,new blood test this week and Consultant next week.Question is,what will be the result......up or down and what will happen if it is up more?So I understand your worries,just stay positive,talk to a good counsellor and don't be ashamed to take meds to help,we need to help the mind as well as the PV.Best wishes,Inca
life can be tough thats the way it is , nearly lost my 28 yo daughter to a spinal tumour. However compared to our parents who through WW2 and their parents who had WW1 we have not been to badly treated.
I have had Et for 20 years now and I just found I have to manage it . I certainly do get tired.
Thanks for the reply and I am sorry to hear about your daughter, I'm hoping she is at least on the mend now? Yes, life is tough but I cant agree with you from here on, we are where we are agreed but we don't just have to take everything on the chin, is that what WW1 & WW2 were all about?
No I dont think so, we stand up when we feel unjustly treated or could have been treated better, the point I was trying to make, you don't just have to manage it and from the other comment from other sufferers, we are not alone. We are not badly treated agreed, but room for improvement, without a doubt and they don't know until you tell them, keep smiling my lad!
I was diagnosed about 18 months ago and my emotions can go all over the place. Most of the time I am good but put me in a doctors office and tell me my blood results and I just can not hold the emotion back, it actually surprises me but it has happened enough for me to realise I have no control over my own emotions. Lesson learned
Hi Shellsween, thanks for your comments, early days yet, it gets better but just occasionally, we have a blow out, with you guys around, I'll get over it, you too, keep the faith!
There are a few exceptions but I find the the medical profession no longer expects to bring kindness or compassion to their exchanges with patients. I started observing this 9 years ago when I got PV but it applies to GPs too. I was at GP yesterday -granted I didn't know her - for a recurrent chest infection and within 5 mins I was sorted with just logical check, selection of antibiotics, prescription given then she stood up and that was that. It is as if training now only encourages efficiency and time management.
My first consultant was like that. Always on speed but he showed humanity and kindness by seeing me after his day was over so not to mess up my school timetable. When he was recommending Hydrea which I later didn't tolerate I asked him would he recommend it for his mother. This was a BIG shock to him. It took him out of the semi robotic mode. He turned out to be an excellent doctor and went out of his way for me and other patients so there are wonderful exceptions.
I have worked out that yes the medical profession is very automated. But we are also very vulnerable. And while we hope for kindness the docs have 30 people to see and they haven't got the emotional capacity to be human - with the few wonderful exceptions.
I sometimes wonder if the counselling on offer is a recognition of this.
When I identified that my needs were clouding my judgement I could deal with it a little bit better.
Michael, you are fully understood. I have only had Poly diagnosed less than three years ago and it has since moved on to MF. As yet not on medication as still at the planning stage. I get really down at points in the week especially at night as I sleep so badly. Constantly try to tell myself to cheer up during these periods and sometimes it works, sometimes it doesn't. Have super team now managing my care and if only psychologically I could relax into things it would be much better. These diseases effect us all differently but by golly, they effect us in a big way and that we all understand - the lead boots I wear most days are my biggest aggravation. Best wishes to you I hope things move onwards and upwards.
Hi Michael, I certainly hear you about the hydrox tabs, I have ET, when I had my dose increased from what your taking to 2 x 500 tabs per day, 3x 1 day per week I found I was having extra side effects, dizziness was awful, headaches, joint pain, my family commented that I was like in a zombie state most evenings, I felt like i was always having to explain why to my husband, but what I really wanted to tell you was after 3 Months my body became used to the new dose, then next visit medication was decreased,so just remember your new dose may , prove to be short term just to control counts, although I hate taking this med, my experience with interferon alpha was, by far, for me much worse, coping with emotional/mental state, oh I wish I had the answer for that!! but we all know someone who is worse off that us, best of luck
Hi Linds, I think you are an inspiration to us all on this forum, (Iremember the advice I had from you a while ago re;interferon,) and the help you offer others, take care xx
Hi Michael. Understand exactly how you feel, had my three month appt. today was very nervous beforehand , but not too bad,platelets up slightly, but didn't up my dose... 2 per day Mon to Fri 1 per day weekend.
I have to say that this site has been an absolute lifeline, as the Haemo Drs just don't have the time to answer our concerns . I understand this as they deal with such life threatening disorders , I feel my problem ( ET ) must seem small fry. Maybe I down play my disorder, this is why this site is SO wonderful ....sharing worries and queries. On a day to day basis we just get on with our lives, despite the tiredness etc.
Can I just ask does anyone else get VERY tired. Heavy muscles, ie walking etc.?
The site is our counsellor really, long my it continue.
Hi Sandy Thanks for the reassurance, I think it was my sister dying in May that hit me the most and the increase in meds just capped things off, keep us all going, I do get the heavy muscle sensation and tired but I suppose like everything else we adapt as we need to, the site is great, thank heaven for small mercies! x
Hi Michael I have ET and I have legs that feel like I have lead weights in them and I get very tired but I have severe arthritis so cant really say which is causing it but it affects my life horribly. I am 45 and feel 90 some days lol . I am also suffering with my memory and have to really concentrate on what I am doing lately.
Hi Andrea It is an awful thing we have but at the end of the day I'm lucky enough to consider the life I have now as "normal", I went through a bad patch when I lost my sister in May with COPD, she was 64 and my bro in law was devastated having just gone through a bowel cancer op, luckily he will get better while we just need to carry on. Keep smiling and stay positive as much as you can, all the best to you, Mick.
Hi Mick I think my reply about legs pain was to stevesmum42 not you lol . I am sorry about your sister and brother in law and the difficulties you have had. my Dad died at 64 of COPD so I know what you all went through and I now have it myself but like you said we just have to stay positive and try to keep smiling.
All the best to you and your brother in law, Andrea
What a brilliant lot you are! Sorry for the rant but boy did it make me feel better! As an update, the 1 x day, 1 x night is so much better and I find I'm coping but the tiredness lingers just not as long, if you replied to me thank you sooo much! To be not alone is to be understood, all a great help and just why we need this forum, now what was it I was doing? Ah yes, the brain is still forgetful but at least we are to most extent able to be "normal" or near enough, keep the faith all and thanks again for your kind words and support xx
Hi Michael, you can see by the answers already how much support you have on this forum. My mum and dad both died within 6 weeks of one another when I was in the process of being diagnosed with PV, so I have every sympathy for you - life can be a real bitch sometimes!! But we all know how you are feeling and folk care about you. I know I have had a lot of support when I have needed it from this forum - it is the best thing I have joined.
I didn't find my haem particularly "human" when he was trying to diagnose my PV and one of the female Haems was determined I was suffering from depression due to my mum and dad being ill - not sure how that worked with a high hematocrit!! My husband was going along with her too!! However that is in the past and has made me a stronger person. My GP is supportive - he asks me what I want to do about symptoms once he has explained the options - I feel more in control of my PV with him then I do with my haems.
Thinking about you - know exactly what you are going through. Better times are coming!! Aime xx
Aww, not just me then! I have ups and downs, worry and feel people think I'm faking it at times, how can you prove fatigue vertigo etc?? My husband thinks I'm gruppy at times, have to agree I've never handled tiredness very well, so I tend to just stay quiet we it comes on. Work always worries me, do to little and your not performing do too much and feel like rubbish tell them what you have and they hold it against you. Thank you for your post Micheal56 its well said and MPN's all over. xx
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ET - a blood cancer or not? Serious or not? Conflicting info....??
Better late than never
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