i everyone,
I had my transplant on the 22nd of June and I’m still in hospital as of the 3rd of July.
My transplant was a haploidentical allogeneic stem cell transplant a half-matched donor transplant. Because of my protocol, I needed 8 sessions of total body irradiation (TBI) before transplant.
Honestly, TBI hit me hard. After the second session I basically stopped eating. It felt like the lining of my stomach was completely messed up, and I was even vomiting during the TBI sessions. After transplant, things continued to be rough.
The good news is that I’ve now reached 100% donor chimerism, which is amazing and something I’m really grateful for. But physically and mentally, I’m still struggling a lot.
I’m still afraid of eating because of how bad the nausea and vomiting have been. I’ve also had excessive thick/foamy saliva for weeks, to the point where it has affected my sleep and made it hard to drink or eat properly.
When I came into hospital, I weighed 83.4 kg. I’m now down to 67.3 kg, so I’ve lost a lot of weight. They tried putting in a feeding tube, but because of vomiting and my stomach being so unsettled, I ended up vomiting the NG tube out.
At this point, the doctors are hoping to send me home next Friday. Now the main goals are managing all my medications by mouth, keeping food/fluids down, and being able to move around by myself safely.
It has definitely not been a fun ride. I’m exhausted, but I’m trying to focus on the fact that I’ve made it this far and I may only have around one week to go.
Good luck to me and to anyone else going through this.
Hi again PablitoD but sorry to hear about the challenges you are having.
Remember I don’t have Leukaemia but have had 2 Allograft (donor) SCTs for my 2 rare types of T-Cell Non Hodgkin’s Lymphomas.
I had 10 sessions of TBI as part of my conditioning for my first Allogenic SCT in June 2014……. On the first day in the SCT unit (the day before my first TLI) I was given clear instructions about good mouth care…….
For both my Allo SCTs my SCT unit supplied a two pack (expensive) mouth rinse called Caphosol as well as Nystatin oral suspension.
I set my phone for every 3 hours during the day to make sure that I was doing this all day. My head SCT consultant said if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis and this results in not eating with all the problems this brings.
I did well with only one very small area developing and it was not a problem…… and I actually recovered very quickly after my transplant to the point I drove the 3+ hrs home from Glasgow to Inverness.
My first Allogenic SCT graft failed within 6 months so I went back in Oct 2015 and had a second Allo SCT.
I was very ill during this SCT…. lost 27kgs….. I was so sick the day after I got my brothers cells that I ended up in the CCU Unit as I developed A-Fib……. and also a significant Hiatus Hernia….
(The Hernia is so big it actually encloses all my Stomach and most of my Pancreas Gland but it’s dangerous to touch it so nothing will be done apart from in an emergency……)
…… so eating was a mission. I lived on good homemade soups, scrambled eggs, cheese mash and lots of custard. I did try protein drinks but they made me sick.....this lasted about for 3/4 months.
When I left the SCT Unit following my second Allo SCT I was in a wheelchair and could only do a few steps with walking sticks……. I had to have 3-4 months of physiotherapy to get me back walking!!!!
It took 23 months post my second Allo SCT for my Whole Blood Lymphoid and Myeloid Lineages to be 100% Donor
My Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.
Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.
