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Anxiety Attacks

Hello everyone. This is more of a discussion than a question. I'm 11 months post transplant for AML and am doing really well and the doctors are really pleased with my progress. However I recently lost a friend to AML which was devastating.. Mentally I've been doing well until yesterday afternoon when I had an anxiety attack. During the attack I convinced myself that I was going to relapse and die. The feelings were so real that they were overwhelming and the feelings of fear and dread were very intense. I'm ok today but wanted to raise the issue of anxiety attacks for patients. One of my doctors told me a while ago that patients suffer from a form of post traumatic stress disorder after transplant has finished and I feel that this is a accurate description of the emotional turmoil we go through. These days I generally feel in control of my emotions but after yesterdays incident I have realised that my anxieties and fears are lurking just below the surface and that they can resurface at any time if triggered!


  • Hi there,

    I'm sorry to hear about your friend and that it has had such an effect on you but thank you for raising the point as it is something that we all might face.

    I think it's only natural for us all to have anxieties of some sort during or after transplant, particularly around relapse. It sounds like in your case it has been so severe due to somebody you know, with the same illness dying. It brings it home to you how vulnerable you are in those early days after transplant.

    I don't think I've ever had a full on anxiety attack, but there have certainly been times when I've felt uneasy and insecure about my recovery and whether I was going to make it. About 6 months into my own recovery I discovered an old message in my facebook messages from the wife of a patient I'd got to know in hospital. He had his transplant a couple of days before mine, but sadly didn't make it. It really upset me at the time and made me stop and think as he'd seemed much stronger than me when we were in hospital. I think I was also upset that I hadn't seen the message for about three months after it had been sent.

    We all live each day in fear of our illness coming back but as time goes on it does get easier and that fear subsides. I'm now well over 5 years post transplant and for me as time has gone on it has got better. I now have annual checkups and they have become a formality. Last year my consultant said for the first time "I think we've cured you" and I can't tell you how good it was to hear that.

    I'm sure others will join in this thread as it is certainly something that we all experience to a greater or lesser degree and it would be useful to share any tips for coping with such anxieties.

    I hope you're feeling better today and that the fears have subsided.

    All the best,

  • Hello

    I'm very sorry to hear that a fellow patient passed away. Not long ago i received similar news and it was utterly devastating and like yourself it brought emotions to the surface extremely quickly.

    I was diagnosed with AML back in 2015, i had my SCT in 2016 and i would definitely say i'm a more raw personal emotionally and more nervous in my day to day life. Tears easily appear in both happy and sad situations, i also have more empathy for others which means i cry about their news, too! I am a far more anxious person, i see problems and dangers where once i was considerably more gung-ho, for example i horse ride and not long ago i suddenly felt i couldn't jump because i had visions of coming off. I agree that PTSD is common in patients who have been through the treatment and traumatic experiences we have been through, i believe half the battle is realising that and understanding the emotions / fears etc are accentuated so when they are triggered there is a voice of reason to help try to put events back into proportion.

    For me spending time in the countryside / nature helps as does exercise, i'm not sure what is is about either of them but they both help improve mood and keep me grounded.

  • Hello,

    I echo the other comments and am sorry to hear about your friend. I had fellow patients who passed away after their SCT in 2014. This upset me and I was worried what the future held for me personally post SCT.

    You mention that your doctors are pleased with your progress. This is positive news and you can take great comfort from this.

    I sometimes get very anxious thinking about whether my GvHD will flare up again once ciclosporin dosage is reduced/stopped. It is not uncommon for anxieties to rear their head at any time. I think it is perfectly normal when you have gone through treatment/SCT.

    A number of years ago, I went to meditation classes courtesy of Macmillan (at my local hospital). I found it to be a brilliant way of 'switching-off' and be calm. Alternatively, I also find exercise improves my mood, as does spending time with friends/family.
  • Thank you so much everyone for your support. I'm fine today although I was at clinic today which was emotional added to which I had to give the sad news to a mutual friend. Thank you all for your advice. I particularly like Rachelj01's comment about horse riding! I bought a horse 3 weeks before my diagnosis. I had my first rìde out since my diagnosis last Monday which helped to sort my head out (or so I thought at the time) and resulted in an interesting discussion with my doctor today. He asked if I suffered with a lot of aches and pains to which I replied yes but I went for a 5 mile horse ride the other day. He didn't seem very concerned about my aches and pains after I told him about my horse ride!
  • Generally, i find riding a great way to block out the world and just be at one with the horse (well my version of at one!) Enjoy the riding.
  • Interesting what Rachel says about being more emotional since transplant. I've always been a bit of a big softy at heart but things I might have got a lump in my throat at before are alot more likely to bring a tear to the eye these days. I can't watch an episode of DIY SOS or Long Lost Families without the tears welling up these days!!

    Maybe it's just a sign of the tough time we've been through that makes us value things more and put the important things in life into perspective?

    I hope the horse ride helped you relax and lose your thoughts into something you enjoy doing. There's a lot to be said to getting back to our hobbies and pursuits, and it gives you that sense that things are indeed getting back to normal.

    Take care,

  • Thanks again everyone for your replies. I agree with all your comments. I definately feel much more emotional and more vulnerable than I ever did before and it's so important to do things that take our minds away from the constant worry of hospital monitoring visits. My horse is a very steady ex riding school horse so I feel safe riding him and rides on the beach are a pleasure. My friend who recently died spurred me on to do things when I could so easy have sat at home watching TV. I asked her once why she was so determined to do things and she said that she didn't want to regret not doing anything in case something happened. Her words seem extremely poignant now!
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