Pv

[Tiger14]

Hi hope everyone is ok, Iv got Pv diagnosed a few month ago and i have a couple questions what does everyone take for the pain ? And how does everyone know the results of their blood tests? As i just get a letter saying to book a venus section after my blood test , I also get very breathless and I have very low blood pressure does anyone else experience this

Ty

[Kari1961]

Hi Tiger

I also have PV - I'm currently being treated with Hydroxycarbamide and Aspirin.

When I used to have venesections I would get my bloods taken, then I'd see my Haem who would tell me the results and advise whether I needed a venesection.

The blood tests results are then on my patient access medical record (online) and my GP gets sent a letter with them on.

Do you not see a haem in between having the bloods taken and getting a venesection? If not, how would you know whether you need a venesection or not.

I have high BP and have only ever experienced low BP once before and that was after venesection. I had to adjust my BP medication after venesection.

Have you got a CNS (specialist nurse) you could contact? I would give the haematology Dept where you are being treated a call and ask for some clear advice about the procedure, as you shouldn't be getting venesections if you don't need them.

Kari

[Ebot]

Hi Ty. Where do you live? Practice varies from hospital to hospital and country to country.

Here in the U.K. people tend to either get their blood taken via their GP or their hospital department in advance of their visits / consults with their haematology team. Or they get it taken at their hospital appointment just before they see the haematologist.

Either the way it is normal to discuss the blood results with your haematologist (or even GP) when you see them for the appointment. The blood results will form the basis of decisions about any treatments such as the need to venesect. I suggest you ask your haematology team for a copy of your blood results so you have your own personal record.

Breathlessness is a fairly common symptom for anyone with PV having venesections especially if you are anaemic or have low ferritin levels. The venesection will only exacerbate this. But it’s a difficult balancing act. Sometimes you can experience low blood pressure directly after a venesection - a few times I have had to remain in the chair for a while it righted itself but I haven’t had issues long term

These are all definitely things you should talk to your haematologist about. And also the pain you are experiencing. Blood counts only go so far in determining the right treatment for you. It’s really important to look at the whole picture and the symptoms you are experiencing. When is your next appointment with your haematologist?

[Mazcd Partner MPNVoice]

hello Tiger14 and welcome to our forum. I am sorry that you are experiencing pain, you need to discuss this with your GP for advice on suitable pain relief or ways of helping to alleviate the pain, as treating it will depend on where the pain is and what is causing it. You can also ask for advice about the breathlessness.

With regards to your blood test results, your haematologist will be able to tell you the results during your consultation, and if you are having face-to-face consultations you can ask for a copy to be printed.

I agree with Kari about contacting the haematology nurse specialist in the department, she/he can give you lots of advice about your PV.

Best wishes, Maz

[paradiastole in reply to Mazcd]

I'm currently seeing the haematologist every six weeks because my hydroxycarbamide dosage is still being sorted out (actually seeing her in person tomorrow rather than a phone conversation!). I have been through phases when it was venesection and aspirin only when I would arrange a blood test every few months (the local hospital has a drop-in phlebotomist) and ring the haem & onc ward a couple of days later to find out the results. I usually spoke to the nurse who does the venesections and would make an appointment if the haematocrit was above 0.45. There is also a Macmillan haematology nurse team at the hospital and I have their contact details too. As Maz says, there are always people to talk to and you don't have to wait until an appointment to find out what your test results are.

[hunter5582]

As others have indicated obtaining your lab results depends on where you have the lab done. You can always get a copy anytime you request one. I get my CBCs before I leave the lab at my hematologist's office. Other labs are posted later on the patient portal(s). My doc's office can also print a historic view so we can look at the change in lab numbers over time in a chart format for easy comparison.

Setting up a venesection would be indicted when you are nearing or have gone over your target for hematocrit (HCT<45% male, 43% female). Current HCT should be shared with you at the time the recommendation is made.

Venesections can have adverse affects in the short and long-term. I did not experience any short-term effects, but did experience long-term side effects from the chronic iron deficiency that the venesections create. It is a balancing act as the iron deficiency controls the erythrocytosis, but can cause its own symptoms.

Hope that helps.