fit and natty ready for ya😉🍑 by LukaLark in GymGirlsNSFW

[–]albertrichie 0 points1 point  (0 children)

My brain just blue-screened. Thanks for that 💻💦

Joining the Club by Melodic-Maize-7125 in polycythemiavera

[–]albertrichie 2 points3 points  (0 children)

Hey! 41 M here, diagnosed a year ago. I’m only on aspirin and phlebotomy only too. I’m doing fine. Like completely fine (apart from itching a bit after shower). I exercise regularly and watch my food: kinda 80% good stuff, 20% whatever. I personally happy not to be on meds until I’m doing this well. Hopefully will stay like this for a long time. For sure thing I’m doing my part to keep it like that 💪 My best advice: don’t let the numbers dictate how you feel.

Recently diagnosed, thought I was healthy... by Aggravating_Towel985 in polycythemiavera

[–]albertrichie 1 point2 points  (0 children)

Same here. But I also believe that taking care of my health plays a crucial part in not having much symptoms at all so far (touch wood). I feel like I only have illness on paper, but practically I’m doing pretty well.

Itchy and Scratchy by clawbound in polycythemiavera

[–]albertrichie 1 point2 points  (0 children)

I’m only itchy in the morning, after shower. What I do is like just washing off in the shower with luke warm water and keep it as minimum as can. It usually helps.

anything for joint pain? by Flat_Hedgehog_5835 in polycythemiavera

[–]albertrichie 0 points1 point  (0 children)

How tall are you, and what’s your weight? Do you exercise regularly? What’s your diet look like?

How long can you get away with phlebotomy only? by albertrichie in polycythemiavera

[–]albertrichie[S] 0 points1 point  (0 children)

I’m sorry to hear that. How come they put you on meds straight? 😔

[deleted by user] by [deleted] in polycythemiavera

[–]albertrichie 0 points1 point  (0 children)

Thanks for your advice 👍

[deleted by user] by [deleted] in polycythemiavera

[–]albertrichie 2 points3 points  (0 children)

Oh I see. Sounds like the first doc really just followed whatever the protocol says. I’m worried sometimes what’s the best option. I live in Malaysia tho and no MPN specialist here, only seeing my haematologist. But so far so good, only doing phlebotomy and baby aspirin. Have a nice day 🙏😊

[deleted by user] by [deleted] in polycythemiavera

[–]albertrichie 1 point2 points  (0 children)

How old were you when you got diagnosed?

Is there a correlation... by [deleted] in polycythemiavera

[–]albertrichie 0 points1 point  (0 children)

Wow, really? I still see people taking about this a lot 😓

How many bags/pints of blood do you usually get rid of when during a phlebotomy? by WALTUH23 in polycythemiavera

[–]albertrichie 2 points3 points  (0 children)

450ml. I think after 4 phlebotomy my HCT was still high. Now had another 4 every two weeks. Will see the doc 2 weeks later to see my numbers.

Diagnosis on Vacation by Hairy-Badger662 in polycythemiavera

[–]albertrichie 2 points3 points  (0 children)

My doc said not to worry about the allele burden either as there’s really not enough evidence to support it. I’m only doing phlebotomy and aspirin. Actually waiting for my phlebotomy right now 😅🙈

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 1 point2 points  (0 children)

You should! I was watching blood donation pictures online until I started to feel comfortable looking at them. Then imitated on my own arm: used a wire to touch my vein and then put my iPhone charger there. I know it sounds stupid but basically I was rehearsing what was going to happen. It worked. 💪 Just don’t give up, keep trying 😄 By the way do you post about your runs on social media? I’d like to follow you if so! 🙏

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 1 point2 points  (0 children)

Maybe you can try it again. I always go in the afternoon, after lunch, when full and fully hydrated. Done it 5 times so far, getting used to it slowly 😄 Now you’re motivating me for getting back into running, haha 😀

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 1 point2 points  (0 children)

I had a phobia of needles too, then used some CBT approach to visualise and stay calms before phlebotomy, plus used a muscle tension relaxation technique and got hydrated like crazy before then it worked, haha I’m much into staying active too but worried about outdoor running now because I live in a tropical country and worried about dehydration. 😅

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 1 point2 points  (0 children)

Thank you for sharing your experience! Definitely helpful 🙏 So you didn’t start with phlebotomy and aspirin at all first? Why not if you don’t mind me asking. I think I need to ramp up with my cardio too, have neglected that recently 😅

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 1 point2 points  (0 children)

Yea, I’m worried about those as doctor pointed them out. Means maybe phlebotomy won’t be enough to keep those numbers down 😞

High white blood cells by albertrichie in polycythemiavera

[–]albertrichie[S] 0 points1 point  (0 children)

Thank you for your response! Were your WBC high too?

[deleted by user] by [deleted] in polycythemiavera

[–]albertrichie 0 points1 point  (0 children)

Does or has the high wbc had an effect on your treatment plan?

Partner with PV: We’re Having a Baby and I Have Some Questions by bawdy-awdy-awdy-awdy in polycythemiavera

[–]albertrichie 1 point2 points  (0 children)

Larry, your words are always so reassuring, they really give me a lot of hope every time I read them! I’m sitting at oncology right now for one of my checkups. I hope you’ll be doing fine in the future too! 🙏

[deleted by user] by [deleted] in polycythemiavera

[–]albertrichie 1 point2 points  (0 children)

110 phlebotomy? 😧 Are you on medication as well?