Went to my hematologist today.he told me to donate 1 unit of blood today and come with CBC next month.I donated 1 unit just 2 months back and my hct is 49 currently.Worried if donating so frequently is safe as I have read this disease could progress to mf over time.
I also want to get the sleep study done but my hematologist doesn't think it is sleep apnea probably bcz my epo is 10.5.But I still want to do it bcz don't want any ifs and buts in my diagnosis.
Lastly how do you guys deal with this stress,fear and uncertainty....iam so tensed for the last 3 months it feels lyk my brain is going to explode....being jak2 neg not helping at all....
Hi - I’m a newcomer to this whole thing myself and I so understand your stress and the fear. The great thing about this for him is that there are so many people who have been diagnosed a long time ago and you have been taking medication for a long time, and living perfectly normal lives. That’s reassuring to me anyway. A question though – – if you have ET or one of the MPNs your haematologist says it’s OK for you to donate blood? I used to donate all the time but mine told me that I could no longer do it now that I have been diagnosed with a blood disorder.
Here my hematologist said that if my jak2 and exon12 report comes neg they would simply advice me to be a regular blood donate.....and today he said to have venesection in blood bank....so I thought it is same as donating blood
As far as I’m aware we are unable to ‘donate’ blood, bone marrow or organs with any MPN diagnosis sadly. My understanding of a venesection is where a significant quantity of blood is taken to help manage the levels, this blood however is not donated to anyone
You have to try and trust your consultant which is very hard, I think we’ve all struggled at one time or another, it’s a difficult diagnosis to get your head around and harder to manage when you have other things going on too xxx
I was diagnosed with PV in 2013 treated with venesections every 4 weeks up until November last year so i think at the last count i had close to 40 pints taken so i don't think having the blood taken increases the risk of it turning to mf i'm now taking hydroxy so venesections are not very often. All my bloods counts are down to the desired limits but i still feel like crap most of the time.
No you unfortunately can not donate your blood anymore as its bad blood they have to throw it away.
The whole thing can be depressing and make you anxious not just the symptoms but the treatment as well i take x amount of pills to help with it but its still very hard to cope some times.
This forum is great for information and reassurance because were all going through the same thing. Everyone is very friendly and willing to help. Stay well.
.i V , I have had venesections about every 6 to 8 weeks for the last 112 years . However while the technique is the same as donation ,here in the Uk they incinerate the blood
Stress and worry is most understandable. I think it took me about 4 months for the "dust to settle" after my diagnosis. I accepted it quite quickly intellectually, but the emotional stuff that goes on at a deep level is very much like grieving, and it does take time. I thought I had all that sorted, but recently, more than 18 months after diagnosis, I find myself a bit "raw" again and have booked some help from a counselor at our hospital oncology department, just to help me sort out a few of the tangles!
I have had sleep problems for the last few years, and I do suspect that the ET that I have has contributed to this in addition to sleeplessness caused by worry. I read somewhere that platelets are involved in transporting melatonin to the brain. If this is the case than having transportation problems due to an excess of them could easily mess with sleep.
Anyway do make use of any help that you can in getting through this difficult time. I am glad you have found this forum, it certainly has been a real encouragement and support for me, and I know that there's a great community here who understand the ups and downs and challenges of the rare blood disorders that we have.
Every time I hit a problem in life or my bloods demand yet another increase in meds I go into my shell and question why me? And that’s 2 and 1/2 years on.
Hi. First, being diagnosed with, and living with, any kind of chronic disease is stressful. Sometimes the stress will be negligible and the disease will be ‘backgrounded’ in your mind and sometimes the sense of stress will be very much greater and in the foreground of your thoughts. That is usually true around the time of diagnosis or treatment change or occurrence of new or unsettling symptoms. There won’t be a person on this Forum who hasn’t experienced this. It’s true that there have been moments when it felt that my brain and every thought was overwhelmed by my preoccupation with the disease.
As to what you can do about it. Well, you can ‘ride with it’ and accept that you will have periods when concern and anxiety will predominate. You can practice ‘mindfulness’ which can help you manage and ‘background’ those anxious thoughts so you can focus and function. You can ask for medication to help you through this time. And you can talk - certainly my haem team offers access to psychological help, your local cancer Centre will too. And the Forum is always here.
As for venesections they are quite different to blood donations. The blood as others have said is discarded as it is taken for medical reasons and not voluntarily given. A pint is the usual amount taken. How often you will need to be venesected will be determined by your haematologist but the aim will be to get your HCT count below 45. It will be a bit of a balancing act depending on your other counts (like your platelets). Be guided by your haem team.
Hi Vipulm, being very new to the group , having only been diagnosed, almost 2 weeks ago. I have been up and down the stress scale, and initially I was terrified, that subsided, and felt ok for the folllowing few days , then yesterday , oh so anxious again. Its sometimes difficult to talk to people about your situation, though being around people and keeping busy does distract, and any other issues going on in your life do impact, and I think its important to try to keep things calm, and don't overthink and look forward plan some things ,easier said than done. I empathise with you, and know that the group is here and responds so its a wonderful place to turn to.There will always be someone to help. I am very grateful to the group already. Take care Best Wishes x
Hi, I had to get venesections quite regularly to begin with until my hematocrit was down to less than .45. It did make me feel more fatigued but the lesser of two evils as if blood is too thick then you can be more prone to strokes. The only obvious down side is that I became anaemic but this gradually improved to a level where I sit on the fence between anaemic and just ok.
My understanding is that being Jak2 neg doesn’t make it worse but I understand your need for answers. I’m not surprised you are not sleeping well. It is an anxious time but not sleeping will affect your health too. I had a few long chats with my GP and finally agreed to try the anti anxiety med sertraline which I find great. I take two a day, one in the morning,one at night and this allows me to view my health objectively and not over worry about things I cannot control. Google “mood gym” too as there are some good tips on there, my favourite being think about happy and nice things (in my case my grandchildren) and this relates directly to happier emotions and you feel so much better.
You will honestly reach a stage of more peace and calm when you will feel a bit more in control of your health but in the meantime, we are all here to support you. Kindest regards Aime xx😺😺
Thanks aime....that's what I dreamt of....having a small happy family....but don't see that happening now....my parents are my support now....but haven't told them a great deal of what's happening ri8 now....ahh...tough times
There’s nothing to stop you having a happy family. If you contact Maz, our editor, she can provide with a buddy to speak to if you think that will help. In the meantime, try not to panic and take one step at a time. Honestly you will come through this bad patch and learn that our PV is not the worst disease we could have.
I was diagnosed with PV 13 yeaes ago and also JAK2 negative. Initially I was Venesected once a month until my count reached .45 and am now at 2 to 3 Venesections annually. I would not worry about mf as it my understanding that you would many Venesections for this to happen. Have a chat with your Haemotologist.
With regard to you being stressed everyone in the MPN Family can relate to this, I had rode the stress out and had been relaxed about it for 12 years or so, and lo and behold a week ago at the MPN Forum on Dublin I learned that MND as it was when I was diagnosed in 2005 had in 2008 been reclassified as a Neoplasm and was now regarded as a Blood Cancer. I was totally taken aback by this and the fear and stress returned.
Am now getting my head around this as I realise that the reclassification makes no difference to the progress or otherwise of the Disease. It was just realising that I had a Blood Cancer rather than the Disorder I thought that freaked me.
You have not mentioned when you were diagnosed so for the stress take it one day at a time and try to relax. I am feeling well since my diagnosis and am daily asprin and venesections when necessary, the biggest thing for me as it is for mamy others is the fatigue.
Haven't been diagnosed yet.... waiting for exon12 report.....2-3venesection annually is not much.....I can deal with that but if they told to have venesection every 2 months....that's a lot.....that's y I'm scared of mf....I'm just 24 .... But I'll stay strong and see how things go and deal with one test at a time....had echo cardiogram yesterday....will go for sleep study after exon12 if it comes neg
I had venesection, I had them for the first 6weeks, haven't had anymore since, try not to worry, drink lots of water before you go though, I passed out 🤑
I SO get what you mean when you say your stress level spiked when you heard “cancer”. It’s that &@$$-ing word. People live with, successfully, all kinds of cancer diagnoses, but the word freaks us out. I never heard of MPN until last year, and personally, I’m still calling it a disorder.😉
Thats hard at 24, I was just passed my 50th Birthday when I was diagnosed 13 years ago and that was considered young enough.
Please try not to worry about mf it is very rare and very few MPN Patients go on to get it, believe me I know that it is hard not to worry when you are hit with something like MPN but the vast majority of us go on to live as long as someone that does not have MPN.
Main thing is to mind yourself and follow advice, ask questions of your Haemotologist and of course there is lots of support here on this forum as I have just found out.
An update.iam exon12 negative too.should I go with sleep study test??I really now think it might b sleep apnea.....echo cardiogram was normal too...lung x ray normal,kidney normal,spleen size normal,.....idk what is causing this problem....and it's getting frustrating.....
Go for the sleep study. If it is normal you might want a BMB if you have not already had one. Good luck to you and hope you get a definitive diagnosis soon.
Hi, you are starting to get answers. Just a point I’m 60 and still alive and very much kicking. I think you should get all the tests/ studies you need to ease your worries. PV is honestly not the death sentence you think it is.
Kindest regards Aime x😺
Thank you guys for replying.....iam on bp med currently and an aspirin a day to keep the stroke away..... feeling much better now....may b I was feeling weird due to high bp.....this forum is awesome....u people are so kind and supportive....
Download headspace, I found it very helpful, 🤔 once you get over the panic and learn more about our illness, you will be alot calmer, it is not that bad,once you get used to it, plus this site is a real blessing I find, no need to feel alone😊
Yeah I don't have much symptoms and main thing is I don't feel any fatigue....I work 9-10 hrs daily....so instead of worrying too much about future,decided to enjoy my present....☺️....(until I get another panic attack😂)
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