My partner is post stem cell transplant for Melodysplasia currently in hospital for fourth week and I am worried, confused and little tired.

Hi  and welcome to our little corner of the Community.

Yes this is all normal, but he is doing well, 112 days post Allo SCT is still very early days. The average number of hospital stays with infections post SCT is about 2 in the first year.

I was doing great until day 284 (10 months) when I developed GvHD in bone marrow requiring Blood transfusions for three months.

Every journey is completely different and you just have to expect the unexpected. Taking each day as it comes is the only way forward you can have a look at our profiles but we have collected some of our thoughts in this thread Life after a SCT - A Survivor's Guide

You will see from my story that I had two Allo SCTs with cells from my brother first was June 2014 the second October 2015. The two years following my second Allo was very hard work - full of twists and turns but eventually I was told I was in remission for the first time in over 17 years back in September 2016.

Keep posting as we here to help.

Thank you so much for your reply! Ill be reading your story on the way to hospital today..

Going to bring loads of delicious food as at least I can help that way since he is eating regularly.. He never eats hospital food tho so its crucial thing that I can help with at least.. And at least we have side room with fridge :) Thanks again for your reply that gave me boost to continue with smile even its hard.

Friends and family who never had anything similar and are never even here at all are not helpful by being shocked all the time and keep asking me silly questions why is he in hospital again? how did he catch something again?  its just so frustrating to explain to people who don't know.. I deleted my social media facebook account to avoid interrogations and bad reactions from people.. Happy I have finally joined this..

Hi ,

sadly yes, very normal; we were told the average for readmissions in the first year is 3. But that’s a good long period without, 88 days, so enabled a bit of strength to build up.

yes, the start (seemingly from scratch) is tough but totally do-able.

daughter managed 3weeks till she got readmitted with what turned out to be paraflu type2. It set her back but she soon picked up again. She managed to get all the way through to just over a year and got pneumonia, several times.....but she’s doing ok now (though with a clinically very low immune system, so is getting immunoglobulin regularly) 

Hugs xxx

Sorry for very late reply! We are home since March the 17th. Had retuximab infusions for ebv which is now undetectable. And chimerism is 99% but T cells chimerism was 78% And now 18% so bone marrow biopsy and possible DLI...they have made chimerism mistakes in lab before so doctor thinks it’s again mistake as it’s too similar to last time. What a scary ride. Still very confused how one can be 99.% And other might be low. I hope your daughter is doing well. Xx

A scary rollercoaster ride for sure, but you are doing good - well done.

I had a few DLI at month about 10 post SCT as my Chimerism was just above 50% across both lineages. it still took until Month 23 post SCT before I was told my Whole Blood Lymphoid and Myeloid Lineages were 100% Donor.

The bone marrow gives birth to the different cells and sometimes it will just make more of one type and not the others - very confusing.

Thank you I was almost gonna break down today until I came back here. I should have done sooner. Thank you again ️ Main chimerism 98-99% T cells 78% but last test apparently 18 only but they think it’s another lab mix up. They told us once chimerism is 2% and it turned out it was really 98% I couldn’t believe that mistake. Hammersmith hospital Haematology suppose to be good I heard it was lab tho... If Tcells are 18% I am worried :/ but his haemoglobin is 116 platelets 180 and neutrophils gone up from 0.8 to 1.8 as retuximab for EBV side effect was low white cells. Anyway Thursday bone marrow biopsy and then the waiting game... ordering anti stress vitamins already to hopefully get a boost.. he is feeling great eating a lot and cycling 1.5 hours every other day so feels confusing. 

I called my 2 SCTs my magical mystery tours. As it was magical what they were doing but at the same time a total mystery and a tour as everything went all over the place.

Expect the unexpected I say.

I had a few duff tests as well.

Thank you  need to keep calm as most of the time it was a scare  I’ll let you know what happens. 

This quote sort of sums up how we tend to live through a SCT Journey........or how we should not ((hugs)) x

Morning

I also had EBV in September 2013 following my CT is May 2013 which was treated with retuximab. My white cell count took a battering as well and I was then on and off cyclosporine for GVHD until May 2016.

I am well and life is normal but my white cell count is still low and just below normal.. well it was last time it was checked in the autumn. As a result my IG counts are low so I top up with immunoglobulins which I do myself every fortnight at home to give my immune system a boost. I was due to come off the immunoglobulins in March for the summer (which I did last year) to see if my counts held themselves up with out being supplemented but of course with everything going on that hasn't happened.

I managed with two re admissions, Once for the EBV 3 months after transplant for a couple of days  (it took  a month to diagnose) and then about a year post transplant for 10 days with severe bile acid malabsorption caused by GVHD. Once they had diagnosed it they medicated at the time and it went away.

I remember my last bone marrow aspirate which was 2 years post transplant, it was my 15th and final one. I was so relieved that they were over and done with. I used to go and have a couple of pints of Fullers ESB and a bag of salted peanuts at the Butchers Hook and Cleaver near Barts after I had them done later in my treatment. It was my reward to myself and gave me something to look forward to while it was being done! Funny how after 7 years it is positive things that you can still remember!