Hello everyone, Well since my last forum where I was asking questions about a SCT I can say that I am currently sitting in a ward at Kings tying this. I was admitted on the 10 Aug and received my chemo. My personal experience of the first 7 days was that I felt ok within myself then on the 8th day I started to get the side effects nausea, vomiting and not feeling very well. My donor is my sister and she was an excellent match which was always comforting to know when I was diagnosed 2 and a half years ago. She has a different blood group to me so a plasma exchange procedure had to be done on me leading up to the transplant. Day 0 (transplant day) was delayed by 1 day due to them not being able to harvest enough cells from my sister. So the big day came and I received my cells which is an amazing thing in itself (even though the procedure was a simple blood infusion). I am +3 post STC and I know it is really really early for me. Can anyone tell me there experience in relation to what effects thy had post transplant whilst still in hospital? I am still due to receive the GSF cell growth injections. I do understand that there is a strong possibility that I will still get poorly before I get better and am prone to infections etc I am scheduled to still be in hospital for another 4 weeks as long as everything goes to plan. I have to say the nurses and staff here have been excellent and their experience and compassion has definitely put me at ease, as it can be a lonely place when you are stuck in your room most days. Thanks G
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Hi G
Here's trusting all will go well for you - unless the boredom gets to you! Hopefully it won't be too
long before you can have visitors. So you're on Day 3 of your new life - hopefully free of CML for good.
Take care, keep positive and look to the future,
Best
Chrissie
Hi G,
I think the best thing to do during this time is to focus as much as possible on getting to the point where your neutrophils are high enough for you to a. leave your room and b. leave hospital and go home. This helped me a lot and I managed to spend my time imagining myself as fit and healthy and 'out in the world' again.
4 weeks sounds a long time but when you have such a lot of work to do it goes by quite quickly - ie. your new donor cells are working very hard to set up a new population in your marrow, which by the way they do so well that the day your new neutrophils show up in a blood test, it borders on the miraculous!
Try to have a routine and if you can, take some time to meditate and 'see' yourself reaching your goals and in your new life.
Getting home will be another milestone and you will need a new routine to get your through. Every day is another day nearer to your goal. It takes some hard work, but if you take it all one step at a time and not stress too much about the things that may or may not happen- like infections etc.- all will be well.
Keep a diary- I found that very helpful. You can read mine here- http://caringbridgeclassic.org/europe/sandycraine/history.htm
Keep well,
Sandy
It's just gone past 19 years since I had my MUD BMT.
Take each day as it comes. Try not to worry about what you can't control and effect. Don't bother dwelling on other people's experience.
We're all unique and deal and manage things differently.
I wish you well and all the very best of medical science, support and luck over the coming days, weeks and months.
Hi, just wanted to wish you all the best. I am coming up to 8 years post SCT. In reality, I had a very easy ride with it all. I was only in hospital for about 17/18 nights and really wasn't at all unwell with it. I felt fairly ropey with the chemo and no major problems afterwards.
I didn't even get any mouth sores which I gather are very common. I lost my hair about 3/4 weeks after I got home. Once home, I went at least 2x week for check ups and I was admitted again twice, I think. Once for dehydration and once for CMV treatment. I didn't get any real GVHD issues either. That can be good and bad. You can find the link to my web site on the blog page.
I wasn't in isolation, I was always allowed visitors and I seem to remember I wasn't encouraged to leave the room when my neutrophils went to 0. It was only a couple of days. I remember going out of the hospital a couple of days after the transplant, before the neutrophils were too low, to get some food in Marks and Spencer. It was only under the hospital, so not too far!
Happy to answer any questions.
Keep taking the pills!
Susan
Hi
Just wanted to drop by and say best wishes. I think I speak for everyone on CML Support in wishing you the best in the next few weeks and your speedy recovery moving forward.
Please keep us all posted when you can and let us know how your doing. Although you feel lonely whilst at hospital - which is completely understandable - take comfort in the knowledge everyone on here will be willing you on.
Take care.
John