I went for my 8 week check up with my haemotologist yesterday and my bloods continue to be stable. I told her I had had 2 bouts of sickness over the last week and that since I had seen her I had been struggling with breathlessness. From normally being fit and healthy to struggling halfway up the stairs and having to sit and get my breath before being able to talk to my 93 year old bed bound mum. My haemo has now ordered chest x-rays and a heart scan as she said people with an MPN can develop small clots in the lungs and enlarged hearts! Wasn't expecting that! Anybody else experienced this? Feeling quite depressed now.
Jill
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jillydabrat
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Hi Jill. . Afraid can't answer your question as it's a new one on me. I suppose anything is possible but I don't recall enlarged heart being mentioned in anything I've read about MPNS. Blood clots are a greater risk I guess. The good thing is that your bloods are stable. Could you have picked up a virus maybe.
I can understand why you have come away feeling depressed, I'm sure I would be. Hopefully your tests will be clear and your symptoms will also clear. Be interesting to see if anyone else has experienced or is aware of an enlarged heart or blood clots in lungs. Hope your test appts come through quickly. In meantime please try not to worry 24/7 as it will likely make you worse.
I had to have a stent fitted only weeks after my P V diagnosis....a thickened artery had collapsed when I was put on HU after initial venesections to get thick blood off, it has not been a problem,sometimes I get breathless,esp if tired,as now.Sure it is part and parcel of P V...looking back at posts a lot of us do get the breathlessness.I also understand we can have little clots any where.....try not to worry,you will be scanned if the problem continues....remember stress too,you have mum to worry about.....must surely be a constant worry,hope you soon feel better,Sally ex M'bro!!!
Hi Jilly, sorry to hear that you are not feeling too good, bless you. Unfortunately we are at risk of blood clots (thrombosis), with MPNs. Hope you get sorted out soon. Best wishes, Maz
Despite being " unclassified " I had a heart attack last Sept. They told me a small piece had broken off and that's what caused me to have the attack. At the time I was so stunned as never had any heart trouble before, that I never thought to ask, a piece of what. However I have cardiology next month and will bring it up. Also because my blood was so thick, my heart was struggling, hence the being breathless feeling. Not nice.
Sorry to hear that you are not feeling to good Jill, all I have been told is that we can suffer bloodclots, so maybe this is what is causing the breathlessness, although you say all your blood counts were good, maybe you could have a chest infection which is what I had a few months ago had to go on mega atibiotics sorted it out though, so let's hope that it is the later.
Try not to worry to much as this does not help, but hey that is easier said than done it is very frightening when you get breathless like this.
Let's hope they sort it out quickly for you, just to put your mind at rest.
Hi Jill, you do have a time....really sympathize. My sister has been through similar and each time in the end proved to be a nasty virus affecting her lung, so just possible could be something like that. Whatever it is, though, makes it harder if you are desperately worried, so hope all will be resolved v soon and hopefully, definitely not serious.. Love and best wishes, Tinkerbell13
As usual I thank you all for your posts of support. I was told that because PV causes enlarged blood cells that the heart has to work harder, hence enlargement. Other than the breathlessness and usual tiredness I feel fine. I am having to work harder looking after mum ( she fell last week) , so maybe I am a little run down. So chest x-ray on Monday for a start so let's see xx
Good luck. I hope they sort things out for you soon and life becomes a little easier. I hope your mum recovers quickly from her fall. Take care. Karen x
It was worse if I had been rushing around on a busy ward, overworked, stressed and getting dehydrated. Walking too quickly or a double flight of stairs brings it on, and I get a feeling of pressure on my chest, sweaty and breathless.
At its worst it is a crushing pain to my sternum and neck, with numbness to my left arm. After an attack I get exhausted and just want to sleep for hours.
Every test has shown my heart circulation to be normal.
One theory was microvascular angina, when the tiny blood vessels go into spasm. A stress test showed "patchy perfusion," and an altered ECG.
A diagnosis would be reassuring, but I don't think it will happen. I am much better now I have retired.
Look after yourself, Jill and use the lift on the way up.
Huge, I was rather breathless when first diagnosed. They told me about lung clogs & sent me for anot immediate chest x-ray. All was clear & once my be counts came down my breathing returned to normal I'very never heard about the heart size increasing. All the best, I'm sure everything will be fine. X
Hi JIll, I too had shortness of breath. Dr was surprised that this symptom hadn't dissipated as quickly as expected after going on HU. Ordered respiratoryr function test and stress cardiac echo something. Results were normal and symptom did finally ease. Back in the gym- cardio and strength training and doing much better. Pretty scary experience. Hope this passes for you as well.
I have ET and am always concerned about clots. I also have asthma so its hard to tell what the hell is really happening with me. Its a simple Xray that can tell you everything. Try not to worry too much as that will make it worse.
I dont think you have a clot in the lungs. How high are your platelets?
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Update on my 12 wk check up 
Feeling disheartened and upset 
