First Haematologist appointment

[Poppet2518]

I have my first appointment with a haematologist coming up due to high red cell count on a recent routine blood test. So no diagnosis as yet. Can anyone please advise me on what to expect at this appointment? I’m just wondering if blood tests are likely as I have a phobia of blood tests 🤢🤢 and am likely to faint!... just need to prepare myself.

Thanks

[Aime]

Hi, welcome to this forum where you will get tons of support and make new friends with people who you haven’t met but will give up time to help you. Have a look at the MPN voice website where you will find trustworthy information as it is carefully monitored by Maz and her team, just like this forum.

My first haematologist appointment did include blood tests, exam of lymph glands in neck, under armpits and groin. Spleen, liver and stomach area also checked. I was sent for a chest x ray at the appointment and then also a CT scan within a few weeks. We are all individuals with different medical conditions and medication so experiences can vary but I hope that gives you an idea of what you may expect to happen. It’s worth being well hydrated prior to blood tests, keep arms warm as both help veins to plump up and make the drawing of blood easier.

It’s also worth taking someone else with you for support and write down any questions before you go while you have time to think and are not too anxious.

Everyone has always been very pleasant, reassuring yet honest at any clinic I’ve attended. Hope you get on okay, please update if you would like more support.

Kindest regards Aime xx😻😻

[Poppet2518 in reply to Aime]

Thank you Aimee, you’ve given me lots of advice and reassurance😊 I’ll keep the forum posted. I’m thinking my high red cell reading is likely due to my smoking which the GP mentioned. (Such a terrible habit I know!) though I’ve no breathing problems or other symptoms of swollen glands etc. Just insomnia and night sweats at times... anyway all will be more clear after my appointment. Thanks again.

Sinéad 😊😊

[Aime in reply to Poppet2518]

No worries, that's what this forum is for - supporting one another. You may not get all your results in one go but ask your questions so you know why tests are being requested.

I concentrate on my breathing for any injections which actually relaxes me which helps with any pain felt. It takes a bit of practice but I get plenty due to osteoarthritis and joint inflammatory problems.

Hope all goes well, kindest regards Aime x😻😻

[Poppet2518 in reply to Aime]

Thanks Aime, much appreciated 👍😊

[Applesnpears]

Blood test are almost certain. Explain your phobia to whoever takes the sample, preferably before they reach for a needle! Have a buddy with you for support and to help remember what was said.

Make sure you are well hydrated, easy to go dry travelling to the appointment and waiting to be seen. You dont want to increase your rbc artificially.

One other thing I read today, vaping can cause secondary polycythaemia as much as smoking.

Hope it goes well.

[Poppet2518 in reply to Applesnpears]

Thanks applesnpears😊 interesting fact about vaping !

[AnneMargaretMary in reply to Poppet2518]

Explain your fears to the person doing the blood test and ask him/her to use a butterfly needle. With very best wishes, Anne

[Aldebaran25]

Hi, I also used to have problems with blood tests and had trouble with donating blood (tried but passed out ) a few years ago, before being diagnosed. However for some reason going to haematology for blood checks etc has not been a problem. It's incredible how we adapt to necessity! I think it helps that the nurses are sooo good at taking blood (they do it all day long) , also I really drink a lot of water pre, during, post... Let them know of your worries and good luck , it will be done sooner that you think.

[Threelions]

Hi, when I first went to haemo I had to have a series of blood tests. 1 was specifically to find out if Jak 2 was positive.

Unfortunately blood tests and haematology go hand in hand but just look the other way or close your eyes and know that you’ll be just fine .

It is really important to get a correct diagnosis as then it can be treated and you can move on 👍

[Poppet2518 in reply to Threelions]

Thank you all for your replies.. you are being so supportive and I’m conscious I don’t even have a diagnosis!! ❤️👍

[Applesnpears in reply to Poppet2518]

I'm sure you'd rather not be a fully paid up member of this club!

[Johnsb]

Poppet, you might get lucky and only get a finger prick as a quick check if your red blood cell levels, typically using HgB levels are high. If that is high then I would expect, that yes, regretably you will have a blood draw so they can check for the status of the JAK2 gene, this goes off to the lab.

I have a friend who had a heart transplant and any time anyone took him to the doctor and it involved needles, you had to tell him jokes and stories the entire time. Even when he was full of needles already the new one was the same routine!! My son has a fear of needles as well that is until his surgery at Xmas and for some reason the IV didn't bother him. I guess he saw my arm with all of the tiny tiny phlebotomy scars and figured it couldn't be that bad. He had fainted before.

Good Luck!

[Poppet2518 in reply to Johnsb]

Thank you👍All this advice is helping! It’s strange how our minds can have such an effect on us physically!

[Sjthorn]

I too use to pass out with blood tests, then a lovely doctor told me to concentrate on wiggling my toes, never passed out again. Distraction is the key. Best of luck.

[Poppet2518 in reply to Sjthorn]

I will certainly try that👍👍 thank you!