As Samreena Kamran from Birmingham celebrates her one year anniversary since having HSCT treatment in London, she candidly reveals what life has been like since…
The moment I found out I had been accepted to have HSCT (Hematopoietic stem cell transplantation) treatment was surreal because I knew that things where about to finally change, even though I still didn’t fully understand what the treatment would involve. All I truly knew was that if I didn’t have chemotherapy I wasn’t going to find the cure I was looking for.
Now I’m one year on from having that treatment and I’m living my life. Since having it people have asked me, what are the negatives of having HSCT in the UK? To be honest I don’t think there were any negatives. I look at the whole experience as a positive and the only negative really is that no one can say for sure what date you might go in and actually start your treatment, they can only give you a rough idea. It’s all to do with the availability of beds. Things happen, they change and people who are more seriously ill take priority over you because although you have MS, it’s not a life threatening illness.
One of the most popular questions I’ve been asked is did my treatment go smoothly? Well the answer is probably not. I’m not known to do things smoothly. I became ill shortly after returning home and developed sepsis, for which I had to be hospitalised and treated. I just had to put my trust in the professionals.
I’m not going to lie, the last year has been tough. I was walking better with my crutches back in 2013 when I first discovered HSCT but I was told by my neurologist that it wasn’t for me. Because I waited two years before finding out more and perusing treatment, more damage was done. It does bother me that I’m still not walking, but my physio says nothing will ever be good enough for me, I guess I’m tough on myself. However, that’s also what keeps me going, I will walk. My physio gave me a picture of a quote, which sums up my situation right now. It says: ‘Strive for progress, not perfection’. When he gave it to me he said, we’ve just got you walking up the steps, give yourself time.
I’ve also been left with some stiffness and spasticity, which the professionals are treating for me. However, I do believe that this can hopefully be improved over time because the brain is able to rebuild its neurons. I’m using my mobility scooter a lot at the moment because I’m trying to give my body time to recover from the treatment and all of the drugs. I believe, as with anything else in life, there needs to be a positive mind-set, and that’s why I believe things will get better.
There have also been lots of good subtle improvements that have happened along the way, but the best thing is that my MRI scans now show no more disease activity or lesions. My MS is stable. It’s so nice to know and hear I’m not going to get any worse. I used to worry about my care and what home I would go into because I was declining so rapidly, and now that’s not going to happen. Now I can plan and live my life.
I would definitely recommend HSCT to anyone with MS. I think my situation and progress so far shows that the sooner you have this treatment the better.
To read more real life stories from other MS patients, download issue 96 and 102 of New Pathways magazine.