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Im waiting for my transplant and Im interested in whats going to happen post transplant

I have been some fairly negative information from my consultant about side effects of my transplant that is due to happen in the next three months. This is quite worrying and Im actually considering not going ahead.

Could anyone here please give me an insight into how they found the post treatment period so I can get a balanced view of what I am facing in 2014

Answers

  • Hi David, I haven't had a bmt but went through it with my daughter. There can be rotten side effects but you may not get them all! You should get a 'guide to' type booklet before you go in which we found helpful. Mostly my D was very tired and a bit sick from the pre chemo, but that was sorted with anti emetics. She did get shingles 6months post but again treated easily.

    It's also worth bearing in mind that you are being given ALL the possible side effects- yes you may experience them all but you may not!
  • Also, have a look at the general advice thread on here, and pre-transplant thread as I think I've seen others posting who are at the same stage as you. All the best!
  • Hi David
    Sorry to hear you worrying about post transplant, there is lots of help and support out here.
    Anthony Nolan produce a handbook titled 'The seven steps, the next seven steps' there is lots of information on recovery after transplant. Your hospital should give you a copy or you could get one from Anthony Nolan.

    I had a transplant nearly 2 years ago now. I was 63 at the time, had no symptoms but a blood test picked up low platelets and further tests indicated bone marrow failure. A transplant was the only cure, a donor was found by Anthony Nolan with a perfect match.

    I was told in my case recovery would be long, 12 months and there would be problems mainly with infections and effects of the many drugs. There have been problems but they have all been dealt with along the way, I go to a dedicated cancer hospital and they seem to have a solution to everything and give 24/7 with a helpline contact.

    I look back now and I'm grateful for the treatment. There was lots of support from family and friends, the weekly visits to the transplant clinic were a big help in support and encouragement, and it was great to slowly see the various blood counts go up.

    I was offered the chance to speak to a transplant patient, now I get contacted to speak to patients like yourself, you may find that helpful, you could enquire at your hospital.

    Please if I can help keep in touch, others on the 'Community' may also be able to assist.

    I'm doing some decorating at the moment and enjoying though taking longer than it used to, I've read on these various categories that one chap has resumed fell running after transplant!

    Cheers
    Peter
  • Hi David,
    I'm 5yrs, 6 months post Stem Cell Transplant from my brother & it is definitely worth it. If I told you I was sitting up in bed in sunny Dubai whilst staying with my friend of nearly 40 yrs, you' d probably be surprised.
    All I will say is that 'they' do know what they are talking about & you'll only get all those side effects if you're really unlucky. However, do exactly what you are told & remember you're recovery will be 'little steps'. I actually felt that I was on one of those extending dogs leads that they would gradually lengthen but at any blip they would reel it in a little bit.
    Yes, you are poorly after transplant, but it's only to be expected & I classed the process as 'tough' but I'm here to tell the tale & living my life to the full.
    I had my blips along the way & yes I had the shingles & am living with the residual nerve ending effects but pop a pill twice a day & carry on as 'normal'. See my post about what normal is now.
    I was allowed to start travelling again 3 yrs post STC, it was scary at first but you tailor your holidays accordingly. I've been on 3 Caribbean cruises & last spring cruised across the South Pacific visiting all those places I always dreamed I'd never get to go to.
    I'm not allowed to work anymore because I worked with young children & the environment wasn't the best but I now volunteer for Macmillan at the unit I was treated by.
    I wish you all the best,
    Christine
    Ps come on here & tell us how you're doing.
  • It is important to remember that everyone's journey is differences, each person has a different experience and various side effects. All I know is that if I had not has my BMT I would not be alive today. I had various side edfects, Some were from the chemotherapy, nausea, taste changes, loss of appetite. I also had problems with water retention so need a syringe driver inserted to give 24hr pain relief for that. Moon face and weight gain from the steroids. First transplant failed. Cmv re activations. I am now 2yrs post second transplant (in June) and my bloods are -all normal! The post transplant problems I've been left with are infertility, avascular necrosis from the steroids (mostly due to first transplant failing) so need to have my hips replaced and walk with crutches, I believe this is quite rare! I suffered depression by think this is relatively normal considering! It all sounds like a lot but I just got on with it all, you just carry on because you have to and this was my only chance at life... I will never regret having the transplant. These problems are a blip in my now,hopefully, long life! Good luck with everything and stay positive!
  • Hi David,

    As has been said above, everyone's reaction to a BMT is different and your experience will be unique to you. From what I've heard from others and what I experienced myself, there is little doubt that the process takes a lot out of you and is likely to leave you feeling unwell and groggy for a short time afterwards. The transplant itself is really straightforward and just like having a blood transfusion, but the chemotherapy I had the week beforehand really took hold a few days after my transplant and made me feel quite unwell. I found that during this period it was easiest to pass the time by sleeping - you will be tired anyway. Try and keep your spirits up as that period will pass soon (for me it took a couple of weeks). Eat what you can, when you can. I remember surviving almost exclusively on nutritional milkshakes!

    Your appetite will come back, but don't expect it to be overnight, and the same can be said of your energy. You will probably feel drained and really short of get up and go, but remember you will have gone through a lot to get this far.

    Persevere with your recovery and try not to get frustrated at how slow it is. Celebrate the small steps you will encounter as you recover - the nausea leaving; your appetite coming back; your counts increasing; going home for the first time post transplant. Each one is a step in the right direction, but don't be afraid of minor setbacks, as there may be some. Always focus on the end goal, which is to have a successful recovery and it will come in time (for me it took 6 months until I was feeling like my fitness was coming back properly).

    Above all else, call upon support from those around you (including the community on here). Everyone is rooting for you and will celebrate the milestones along your path to recovery with you.

    Good luck and please keep us informed of your progress.

    Steve
  • Hi,

    I agree with all that has been said above. I'm grateful to the comments made by David especially the memory of the milk shakes, they became my staple diet, Complan mixed with ice cream, they were great . Tried them when I went home but they didn't taste the same and my wife soon gave up on them. I remember too the ice lollies which helped when I got the odd mouth ulcer.

    I went through the same first week of conditioning with chemo and was thinking I had escaped things like mouth ulcers and hair loss, I will say none of the things were too severe but as David says tiredness is probably the worst thing, and I agree the recovery period is slow .By the way I didn't loose all my hair, not that I was bothered.

    It was enough when I got home to have a shower and a shave before I felt worn out, especially on clinic days when you had to be up and out. I didn't drive for weeks probably months but that was by choice and family and friends helped out which was good for them.

    On clinic days my consultant would urge me to be motivated and gradually I started to get out every day for a walk, each day that bit further, going for the paper, going for a coffee, we have a good choice of coffee shops locally so there was always a different one to aim for. The next challenge was to aim for the pub the furthest away which we did one Saturday lunchtime and had lunch and a pint.

    I agree too that everybody around you wants you to get better and wants to help, you wont feel great all the time but there will be positives like when you are told the blood counts are up and maybe if you have an unrelated donor drop that person a line. The replies I received really lifted my spirits.
    Also let those around you take charge when they want to do the things you always did, you will find they can do them just as well or almost!

    Best wishes to you all

    Peter
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