I’m doing well thanks, results from +100 day bmb were all good, chimerism 100%. Still struggling with tiredness in an afternoon but I have a nap if possible. Off ciclosporin this week so hospital appointment reduced to fortnightly, although it makes me slightly nervous to have less contact with the doctors! Waiting for immunisation appointments, hope they are soon as I am ready to get out and about a bit more.
Thanks for asking after me, best wishes, Sue.
Sounds really good so far @Suey xxx
Yes @Ashob, all good so far. How are you getting on?
Hi ok @Suey. So im day +3 today. I had 4 days of chemo from day -7 to -3. Every 6 hrs and 2 hr sessions. I managed them ok just with nausousness and tiredness. My appetite disappeared and i dropped 5 kilo but the last few days i def feel like im coming around again. Then i had the transplant on Tuesday. It was nice and calm. I welcomed the cells with all the gratefulness and hope that i could .
Today and tomorrow I have to have more chemo. 3 hr infusions with constant fluids. They came in with an antihistamine at 6 am and i reacted to it so they are going off to see if there is a different one i can have. Trying not to be too anxious!
Thinking of you Ashob
Fingers crossed things will go nice and smoothly for you x
I’m 19 months post transplant now and feel really well. I remember transplant day and the days following so clearly…thinking of every medication, test, observation and intervention as another step towards getting out of hospital and having a quality of life back. You will have ups and downs but remember how far you’ve come and take one step at a time…sending you a virtual hug…you deserve it.
Hi, I’m 10 months post transplant tomorrow. I won’t lie, the first 2 weeks after transplant were the hardest and then a week later I got discharged. Getting home was a relief but still hard for a few months then all of a sudden things got easier. From day 100 life kept on improving. It’s hard but keep going, stay positive and life will return to normal. Wishing you a speedy recovery
Hi Ashob, you are doing so well. I had horridly upset digestion and both ends were volatile. I too lost 5kg but I started at only 47kg (I’m small and tiny). Eventually I managed to eat and keep the food down, so I avoided the feeding tube. The week before on the chemo and anti rejection regimes were tough. But once I started to improve it all sped up and I was just waiting for bloods to improve then I was discharged. I know that you may encounter hiccups but you will overcome and start your recovery process which will build. Sending hugs x
Morning everyone. It was lovely to wake up to all those uplifting messages this morning so thank you all.
I was absolutely floored and nauseous after yesterdays 3 hrs chemo session. I am having fluids too but wasnt using the loo as much as they wanted so they gave me 2 bags of stuff to help! At one stage i was thinking of just staying in the loo!
Anyhow last day of chemo today which is just great.
Have a lovely day everyone and thank you again for all your support xxx
Hi Muzza, I am at 100+ days after a donor stem cell transplant and I have noticed I have got my appetite back and I keep feeling stronger daily. As you are at 10 months I was wondering whether you are nearing having some of your vaccinations to help your autoimmune system? I am trying to get a time line so I can have an idea how long things take. When I ask my consultant she advises that it depends how long I am on the anti rejection drugs and each individual is different. I totally understand this but just wanted an idea of timescale. Thank you for your help.
Hi @Skye59, great to hear you are 100 days post and starting to feel better. I was a 100 days in January this year and my vaccinations started in April. I had my second lot a couple of weeks ago and the next ones aren’t until the new year. In total it’s a 5 year program. The consultants can tell if you have any immunity to certain viruses, they told me I had high immunity to chicken pox even though I’ve not had a vaccine but unsure on how all that works! Hope you keep getting better and stronger as the days go on x
Thanks for this vaccination information and gearing how long it has taken you, Muzza, to get back to feeling better with an appetite. My OH is +45 now i think and it still feels like early days but i do see the improvements since he was discharged from hospital.
Hi Muzza, Thank you for your helpful reply. It never ceases to amaze me what the consultants can glean from both blood tests and bone marrow biopsies. I had my 100+ days bmb last week so waiting to hear results. Presumably between January and April you were taken off anti rejection drugs. I am on cyclosporine and they have reduced the dose slightly. I had no idea it was a 5 year program. Keep up the excellent work and thank you.
Hi Debbie, your husband is a little but behind me and I found the first few weeks out of hospital hard despite my carers pointing out how I was improving. The lovely staff at the hospital when I visited the clinics kept saying how well I was doing but I couldn’t see it until about day 70 when I started to feel I could do small things round the house and the real improvement came when my appetite returned so I had more energy. It does get easier but it is a long road. Keeping positive and being eternally grateful to the wonderful donor and staff at the hospital who do so much boost me to keep going.
I am just so grateful for the generosity of strangers from those who donate blood which initially brought my OH back from the brink of disaster to our fabulous doner who selflessly gave a part of himself to give my OH a chance. X
Hi @Skye59 I came of the cyclosporine quite quickly around or just after the 100 day mark. My dose was reduced every 5 days. They checked my donor level and it was still showing 100%. It was good to come off it as I’m sure it was one of things that was affecting my taste and appetite. I’m still on co-trimoximal for until 12 months post and I’m still taking Aciclovir as my level has come up enough.
Hi Muzza, well done coming of cyclosporine so quickly. Certainly shows how we are all different. I am still on quite a high dose and am sure it affects my well being but when they dropped it I ended up getting a mild dose of graft versus host skin rash which has been treated with hydrocortisone cream but they also reinstated the dose and said it will take longer for me to come off it. I am also on Aciclovir and expect that for a long time. It is so helpful comparing notes. Thank you for keeping me posted. Skye
Hi @Ashob I have been thinking of you, how are you doing now?
Look after and be kind to yourself
Hi @Erica have had a few rough days but feeling bit better today. Was a bit worried about an issue i was having with my liver but good news today it has settled down. My mouth is very sore and im on a morphine pump but they tell me all these things are temporary xxx day + 12 today.
Thinking of you Ashob hope the mouth improves soon. Just listen to your body and do what feels right as it is working really hard. You’ve got this!!