Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Sign In Register
Please read the house rules and keep this community safe for yourself and others.

Hot weather

chelle_16chelle_16
in Off topic

Hello All

How are you all keeping?

Im posting today as I sit here melting in my home with little to no cool air flowing.

As much as we welcome the hot weather for various reasons; mood boosting, vitamin D and a reason to be outside but how are we really finding this hot weather?

With some of us being on treatment and some being post transplant I'm wondering how you experience the intense weather changes ?

Myself I'm 18 months post Allo-SCT and find this hot weather intensifies my fatigue and pain levels. I had a recent discussion with someone experiencing the same thing and wondered if others had hints or tips for trying to keep cool?

I have found a cooling towel to be my saving grace. Due to difficulties regulating my electrolytes I'm limited with the amount I can drink but cheat with lots of ice lollies.

Hope you are all keeping safe.

All the best,

Michelle

Community online champion

HelpfulInsightfulSupportiveLOLSpam

Comments

  • Dieseldrinker62Dieseldrinker62

    Hi Michelle,

    There was a similar post a while back by Meerkat when the heat first started and it's something I've definitely noticed since my transplant. I find that even if I'm just out in the sun and not being particularly active I feel drained, almost as though the sun is sapping my energy from me. I certainly can't do anything strenuous or energetic. If I'm doing any jobs around the garden in bright, hot sunshine, I find myself having to take regular breaks in the shade to catch my breath.

    By my own admission I'm overweight at the moment which won't help I'm sure, but I'm the same weight as I was pre-transplant and didn't suffer quite as much previously.

    I certainly think there is some sort of effect from our transplants with regard to fatigue in hot weather.

    On the other extreme, druring my recovery I really struggled keeping warm during winter and contrary to the norm, I was the one in our house turning up the thermostat on our heating. I'm not sure whether the difficulty I had keeping warm was related to my GvHD as now that has gone away I don't struggle at all in winter.

    All the best,

    Steve

    chelle_16
    Helpful1InsightfulSupportiveLOLSpam
  • chelle_16chelle_16
    edited August 2020

    Hi Steve

    Ah yes Meerkats Heat Intolerance post. I recall now ? (memory clearly an issue hehe)

    With temperatures expected to saw again after a possible window of rain and thunder i hope you and everyone else manages to keep safe.

    I can empathise with the not being able to get warm after the SCT.

    It took me a while to regulate to some degree. I do believe mine was not helped by the love for the Air Conditioning in my room on the ward which I was in for 7 months. Certainly wouldn't have helped adapting to the outside world.

    I hope we are all both enjoying the sun and keeping safe.

    All the best,

    Michelle
    Online Community Champion

    HelpfulInsightfulSupportiveLOLSpam
  • FalloutOnTourFalloutOnTour

    Hi Michelle!!

    I didn't really have problems with staying warm during treatment or post-treatment. I am also on vitamin D supplements which helps out.

    I don't know about you, but I burn really easily during treatment so I was always lathered with factor 50 sun cream. :))

    Sorry I couldn't be more help.

    Cameron
    Online Community Champion

    chelle_16
    Helpful1InsightfulSupportiveLOLSpam
  • MeerkatMeerkat
    edited August 2020

    Hi all
    Just as a postscript, Since my first post I have asked my clinician about this issue at my annual check up recently. She told me she was unaware of a clear correlation between SCT and heat intolerance, but agreed that the systemic nature of the Pre and post SCT treatment could certainly be a cause of some of these symptoms. Like Steve, I’m fine in cooler weather, but, for example, just hanging out the washing during this heat leaves me completely drained for 10 minutes. (And I don’t have lots of washing?!)
    Bye for now
    Meerkat

    Dieseldrinker62chelle_16
    Helpful2InsightfulSupportiveLOLSpam
  • chelle_16chelle_16

    Hi Meerkat

    Thankyou for sharing that you asked your Clinician.

    I have abandoned all small tasks during this heat wave. My pain and fatigue have been profoundly affected. Which I find odd as I expected those things to improve over the summer.

    Like yourself and Steve not much causes me to break into a sweat.?

    My Clinciians also report little correlation between post SCT and heat intolerance but like Cameron I was and still am very sensitive to sun light and turn more Lobster Red than any shade of Tan.

    Ironically though my skin GVHD hasnt been so irritated.

    Im thankful for the storms today though (evening 13th August)

    All the best,

    Michelle

    Online Community Champion

    HelpfulInsightfulSupportiveLOLSpam
Sign In or Register to comment.