I'd like to ask which nhs professionals do you see and how often? I'm a bit underwhelmed by information and wondered if others have the same experience.
I was diagnosed with PV in Feb and saw my consultant. He said he'd see me again in a year.
I was on biweekly venesections.
My bloods dropped to 44.4 so was 'signed off' and was signposted to a nurse led haemo clinic. My appt is at the end of June.
After three weeks off I felt rough again and I'm back on the biweekly venesections.
I guess I just have no idea how I'm doing??
Is this what others experience?
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Emeraldpv
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i am a great supporter of nurse-led clinics following a treatment plan agreed between u and consultant. I guess if u were charitable u could say that's what's happening? then u and consultant review treatment plan annually? Do get your blood counts from the nurse-led clinic (whites, reds, platelets as well as HCT) and keep yr own records for future reference. At a guess u r doing very well if all u need is a bi-monthly venesection with no drugs........
Hi Emerald. Had to smile at 'underwhelmed'. It is a bit like that, sometimes not even sure if we want to find out more or make it a big deal. Since my husband got diagnosed with PV a year ago we have been sliding back and forth on a scale of - 'hey, it's not that serious/can be controlled' to 'it's a form of cancer/chemo drugs needed'. We have settled somewhere in the middle now. My husband had lots of venesection to begin with and also started on daily aspirin. He saw a haematologist at the start and is now in the care of a specialist haematology nurse with whom he has regular phone consultations (we live in a remote area). A week before each consultation he goes to the local GP surgery to have a blood test which gets sent away to the hospital where his nurse is based. The nurse gives all the readings/levels and my husband takes a note and records the info on a spread sheet. He knows what the normal levels are for each component so he can see for himself how it matches up. For one months he was put on the chemo drug hydroxycarbomide which gave him sore bones and didn't make a huge difference to his bloods so that was discontinued, for now at least. So, he's on daily aspirin at the moment and that's all. The nurse made the next appointment for 6 weeks' time rather than 4 because things seem stable. The symptoms are still there of course (fatigue, joint pains, abdominal discomfort, low appetite) but we feel that the more serious aspect of the illness (risk of clot etc) is controlled. Hope that helps. Sounds like your situation is similar to my husband.
I see my haemo consultant every three months and visit the haemo day clinic every 2-3 weeks for a blood test and venesection if needed. My haematocrit target is set pretty low at .4 - I guess I'm classed as high risk as I was diagnosed with PV when they found a portal vein thrombosis.
The venesections have been keeping my haematocrit levels down but my platelet counts have been slowly climbing so there is now talk of moving to a drug based treatment, so my schedule will probably change. I must admit I'm nervous about the side effects of some of these drugs but I really wont be sad to see the back of the venesections - they told me when I started that they would stabilise to only being every 2-3 months but 18 months later they are still every couple of weeks.
One thing that helped me to feel more "in control" was to keep my own records of my blood test results. If you ask they will give you the results if each test (HCT, wbc, platelets & Hb) and you can use that to correlate levels with how you're feeling to give you a better clue of when you need venesection rather that an arbitrary schedule.
I generally agree with your assessment that there isn't much useful information given by my hospital. My consultant appointments generally last 10 minutes at most. I did end up seeing a private haematologist when I was diagnosed; he spent 90 minutes with my wife and me, discussing PV, JAK2, treatment, prognosis, etc. It cost me for the private appointment but I learned more in that session than all my other NHS appointments combined. No disrespect at all for my NHS consultants but they just don't have the time to do that with every patient I guess.
Good luck; hope your PV stays well controlled and you see as little if the hospital ward as possible!
Hi there, I have been very recently diagnosed so level hasn't quite yet fallen below desired .45 for HCT so still currently seeing consultant every 6 weeks but was told that should be extended all being well so that I would be just under the care of the nurse for continued venesections & advice primarily. Best wishes to you x
I see my consultant at every appointment which is usually every 3 or 4 months depending on blood test results. Have a venesection when needed which is usually a couple or 3 times a year. On aspirin ad well. Blood taken, analysed and see consultant all at same appointment.
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