Venesections: Hi all. My husband who’s only 47 has... - MPN Voice

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Venesections

Mylo6 profile image
11 Replies

Hi all. My husband who’s only 47 has been recently diagnosed with PV (August 20). Whilst waiting for diagnosis he had a significant heart attack(June 20) He is now on 7 medications including aspirin and blood pressure tablets. He is fit and healthy usually, not overweight and has never smoked. He has had just had his 3rd venesection. He went from 0.58 to 0.53 after 1st, 2nd one he stayed the same. Waiting for results on 3rd in 2 weeks time.

Has anyone else stayed the same whilst going through this process? I thought that it would go down every time. Thanks in advance.

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Mylo6
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11 Replies
john0084 profile image
john0084

It must be quiet a shock for you and your husband, trying to digest all the new information. When I was first diagnosed my hct was 0.61 and it took about 7 or 8 venesections to bring it down to 0.45, it stayed stable with hydroxy but I'm 10 years older than your husband

Mylo6 profile image
Mylo6 in reply to john0084

Yes, it’s been a bit manic! But we’re happy that he doesn’t really have any symptoms at the moment. Thanks for the reply, did your numbers go down every time? Or did you have any sessions that stayed the same or even went up? Just wanted to mentally prepare.

Manouche profile image
Manouche in reply to Mylo6

Hi Mylo6, the hematocrit does not go down every time, especially if you’re a bit dehydrated. It’s important to drink plenty of water before each venesection.

shiftzz profile image
shiftzz

I was similar, had the 1st venesection felt rough, explained to my consultant and now I always have 250 saline added to replace the volume... Ok, it takes a little longer but for me it worked. I started off with hct at 0.614 in September 2014 I was on aspirin, hydroxy and bi weekly venesection and in July 2015 my hct fell below the target of 0.45 for the 1st time, then went back up and was above 0.45 until Feb 2016, More hydro and venesection, my consultant is very strict about the hct target one month I was 0.451 and he insisted on a venesection.. Ask about getting saline added..

JP-52 profile image
JP-52

Hi you both have got a lot on your plate and lots to take in . I am a 52 year old male and was diagnosed with PV 8 months a go I am also a non smoker no weight issues, my HCT stated at 57 and took about 10 venesections to get down to 45 I had a period after my second week where it didn’t move much until week 8 and then I had a big jump and at week 9 i finally hit 0.45 .i hope this helps

Mylo6 profile image
Mylo6 in reply to JP-52

That really helps, thanks! Was hoping someone else would be in the same boat. My husband is only having a venesection every fortnight, so hoping for a loss next time. ☺️

ainslie profile image
ainslie

Its not unusual for the HCT to stick for a venisection or two, mine actuallly went up after the second one , just keep getting them until Hct is under 45, the venisections make him progressively more iron deficient, you will see his MCV dropping on the blood results, this is a good measure of iron status, once the MCV gets right down to 70 or less he will be able to space out the venisection period, the saline wont speed up the lowering of Hct in real terms but if your husband feels bad after the venisections having the same amount of saline infused AFTER the venisection may make him feel better, if they add it before the venisection you are then venisecting diluted blood and it will only slow down how quickly his HCT comes down. Similarly if they are doing a blood test it should be done before starting the venisection and before saline to get the real reading, that sounds obvious but it took me some time to explain that to my clinic.

If you are feeling stressed by all this , try not to worry everyone is at the beginning but after a while you do get used to it and will get in to a routine where its a inconvenience but wont dominate your thoughts 24/7

Kye PV 2010, Ruxolitinib, aspirin, UVB for itch, some venisections

hunter5582 profile image
hunter5582

As the others have said, it does take some time for the venesections to get you where you need to be. The body needs to deplete the stored iron to achieve the level of iron deficiency required to keep the HCT<45%. Just keep at it and the HCT will come down. Sounds like they are starting with a Venesection-only treatment protocol. That is a very good place to start. So long as he stays symptom-free, he will have the time to get the HCT under control. Better to not risk the adverse effects of more meds unless it is needed.

One piece of good news - once the blood is not so viscous, his blood pressure should come down. I went from Stage 1 hypertension to 115/75 once my blood was not so thick.

All the best to both of you.

MPNBlog profile image
MPNBlog

The heart attack must have been a shock for you both. It was probably because of the high Hct (thick blood/clots) rather than underlying cardiovascular disease. After diagnosis (Hct 0.59) I had a venesection every week for 4 weeks. Hct dropped to 0.52/0.47/0.46/0.44. With your husband's heart attack they may be more cautious, especially because of his medications. It's really important for him to drink at least 2 L of water every day. On the day of the venesection I have mine in the afternoon so there is time to hydrate, and also to eat a salty lunch to increase the electrolytes. The nurse always says it makes the venesection easier and you'll feel better if you are well hydrated. They always give me a sweet drink after, such as apple juice. Now, my Hct always drops by 0.03 with each 450ml venesection - always done immediately I hit 0.45. Of course we are all different, but I'm sure the doctor will be monitoring the Hct. You will both become more knowledgeable over time, and it will be your new normal. This website is very helpful. Hope that helps.

Mylo6 profile image
Mylo6

Thanks everyone for your replies, they’ve been really helpful. Could I also ask, what happens after it gets down to 0.45? The doctors have been a bit vague and we haven’t been able to see anyone face to face the entire time because of Covid. Telephone consultations aren’t great because my husband (as lovely as he is) doesn’t always take notes very well. 😂

We’re assuming that he’ll still be having regular blood tests to keep an eye on levels.

Ellafea profile image
Ellafea

Hi! I'm 27, I've only just been diagnosed with PV earlier this year. Sometimes my levels do not change after my venesections. I think it can take time to level itself out. I have also been prescribed with Pegasus interferon injections which I take once a week, together with venesections maybe every 6 weeks depending on how often my doctor thinks. When I was initially diagnosed I was told I may need venesections every 2/3 weeks. But luckily my levels have balanced out. When I was first diagnosed my HTC levels were about 0.75! Very high for my age. I also had red cell depletion, which is like a super venesection where they move 1.2ltrs rather than just a pint at a time.. Hopefully this helps.

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