ET jak2 giving blood

[Bazzak]

I used to donate blood before I was diagnosed with ET, my question is can I still donate blood and actually organs as well, or not ??

[Mpn1967]

In the Netherlands you can’t donate blood. It has to be 100% ok... unfortunately our blood isn’t. They told me I can’t donate anything of my blood.

[Bazzak in reply to Mpn1967]

Thank you, I thought that was the case 👍

[AndyT]

Unfortunately no blood or organ donation in the UK - maybe corneas would be accepted.

Disappointing as I was a regular blood donor and signed up for full organ donation until diagnosed with ET.

I asked about donating surplus platelets but they won’t take those either as they’re abnormal..!

[Bazzak in reply to AndyT]

Thank you

[Kari1961]

It's disappointing and really frustrating, isn't it. Especially after venesection, when a full pint of blood gets thrown away in the incinerator.

I used to donate mine regularly, and was on the organ donation register - Since I've been diagnosed with PV, unfortunately no more.

[mark382 in reply to Kari1961]

Yes, it's a shame they throw the blood away. I did ask about it going for donation and they said it wasn't worth the effort in processing as they only have a pint or two a day. Didn't know you couldn't donate organs as we are on the register for giving unless you opt out. How would they know unless they checked medical records, which takes time and I'm not sure if medical records are UK available. Perhaps I need to contact the register and let them know I have PV.

[Kari1961 in reply to mark382]

Hi Mark, yes I had to opt out of organ donation due to medical reasons. You can do it via this online form: organdonation.nhs.uk/regist...

[mark382 in reply to Kari1961]

Thank you.

[MaggieSylvie in reply to Kari1961]

I used to donate my blood regularly and got the badge! I understand after a certain age you are not required to donate but my donations were cut short when they informed me that the transfusion I had in the eighties was during the time of mad cow disease and they were playing safe by not accepting any blood from people who had had transfusions during that time.

[Minu68]

Hi, I donated 48 times in the past, sadly no more since ET diagnosis. Blood when donated goes to very unwell people, so they try to make sure it is good to pass it on to someone who needs it.

Unfortunately, our blood is not great quality - the 'Myeloproliferate' part of our condition I'm afraid. Our bone marrow is producing too much, and this means it is overworking, and thus the quality of the actual cells produced are not all good. There would be a risk to the person receiving it, who is already very sick. It's sad for us, but understandable.I don't know exactly about organs, but they are all supplied by our blood, and in the end that could mean it could affect the person needing a transplant. The need to be super cautious when transplanting an organ is necessary, so I understand why they consider our organs a possible risk.

You can still support the blood donor organisation by encouraging people who are physically well to donate. I began donating when I was 18 because my mother had needed blood to survive when I was a teenager, and I encourage people I know to do it if they can

[IrishHiker]

No

[Bazzak in reply to IrishHiker]

I couldn't missenterpret that answer 🤣thank you x

[IrishHiker in reply to Bazzak]

😉just keeping it simple😀

[MaggieSylvie]

Hi Bazzak, Hope you are well. I have been told by the organ donation people that the only thing I might be able to donate is my corneas. A slap in the face following the diagnosis of MDS/MPN.

[Bazzak in reply to MaggieSylvie]

Thank you MaggieSylvie for the information xx

[Tertia3]

Hi Bazzak,I hope all is well with you.

I have just had to renew my driving licence ( no guessing at how old I am!) and had to opt out of the organ donation section as I know they don't want bits of our old MPN bodies when we pass!

All the Best to you,

Caroline

[Bazzak in reply to Tertia3]

Long time no speak Caroline, yes I too had to renew my driving licence, but like an idiot opted in 🙄 hope you and your are all well 😘

[Tertia3 in reply to Bazzak]

Yes, thank you, I am well. I reduced my Hydroxy dose some weeks ago as it was causing problems. These have mostly cleared up now but I've yet to see if my platelets have been behaving themselves or if they have been having a party.It doesn't look as though the PWDSI is going to resurrect, does it? Perhaps it was felt that it is not needed now that we are no longer shielding. I still miss it.

By the way, as MaggieSylvie says, I think we can still donate our corneas as they don't receive a blood supply.

Best Wishes,

Caroline

behaving themselves

[givingITMybest]

. My daughter needed a blood transfusion as a newborn so I made donations regularly , but I'll also add that I was told NO. I live in the USA.

[Wyebird]

Hi, I looked into this and spoke to a professor in charge of donating my body to science. THere are a few organs they can still use. No blood donations though.Yes they can still use your body for med students