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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

fatigue and breathless + constipated

I'm at 40+ days post transplant. I've been fatigued since discharge and no sign of reduction. Standing up I become unstable and breathless with elevated heart beat. Same when I climb the stairs. Can walk alright on the level - slowly. appetite varies and weight now stable but constipated most days. Bloods and bone marrow ok so doctors not concerned but finding this difficult to live with as have to spend most of the time resting. Any advice appreciated

Answers

  • Hi there Chris.

    40 days is still very early in your transplant and at that point I the only way I could get up the stairs was to crawl up on my hands and knees. It took everything out of me and I couldn’t walk far on the level either without getting out of breath and my legs feeling weak.

    It takes longer than you think to get your energy back as you’ve been through so much. Your body needs time to recover and rebuild its systems, so it’s a case of building up a little at a time. It’s good to get some exercise as it will help maintain and build muscle, but your bone marrow will still be growing and won’t be producing as many energy carrying red blood cells as it used to for a while, so your body is unable to carry the oxygen you need, which is probably what is making you gasp for breath.

    I’m not sure about the constipation as that’s not something I suffered from, quite the opposite! If you’re concerned contact your transplant team, who I assume you’re still seeing regularly at this stage.

    How are things otherwise? Are you managing to eat well as that will help your recovery and help get some strength back. It’s important to keep your fluid intake up as well and keep your organs flushed through.

    I hope this helps. Take things steady and small steps. You will get back to normal, it just takes time.

    All the best,

    Steve

    chrisH
  • Hello Steve, Thanks for your comments. Fatigue has been getting worse. Went for clinic appointment last Tuesday and pretty much collapsed. Admitted for tests - all negative. Discharged after 3 days. Advised to drop blood pressure medication. Maybe the answer as no longer breathless and feeling fitter. Still unregular but more potions for that. Hopeful I can move on for the next challenge.

  • Hi again Chris,

    I had a very similar experience to you with collapsing at one of my early clinic appointments. I was struggling to walk very far at the time and one of the nurses had sat me in a weighing chair to record my weight. The next thing I remember I came round laid on the clinic floor surrounded by medical staff and being given oxygen. I'd passed out and fallen to the floor and thankfully the nurse had broken my fall and lowered me to the floor.

    This resulted in a weeks stay in hospital, including 24 hours of ECG monitoring, CT and MRI scans and a couple of chest x-rays. During one of the chest x-rays I was stood holding the chest stand waiting for the x-ray and ended up collapsing again, hitting my head hard on a terrazzo floor which didn't help!

    In the end the tests didn't prove anything conclusive and it was thought I was just so weak from all the treatment and transplant that it was causing me to pass out if I exerted any kind of energy. The weakness lasted a while but thankfully I didn't have any more episodes of passing out.

    I can't remember exactly how long after my transplant this was, but it was a few weeks after and before the 100 day mark, so probably a similar stage to where you're at right now. I hope this helps reassure you that what is happening happens to others too and that it will get better.

    Take care and best wishes,

    Steve

    Clare_AtAnthonyNolan
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