HSCT for Multiple Sclerosis: The Transplant
As someone who has Multiple Sclerosis, with current active lesions, I have been offered the chance to have Haematopoietic Stem Cell Transplantation (HSCT) here in the UK. This is an intense procedure that uses chemotherapy and the harvesting of your own stem cells, before they are transplanted back into you, effectively ‘rebooting’ and ‘renewing’ your broken immune system.
Sounds great, right? The reality is, it took me a long while to decide whether it was definitely for me; I have a family to consider (it means a period of time in isolation away from them) and the question of whether it would be worth the pain, stress and upheaval and not knowing whether it would help my MS, in the long run, was a big one.
But consider it I did and I am now in hospital, having undergone my transplant. The thought of potentially regretting not trying is what got me in the end; I knew that I had to do whatever it takes to stop the disease progression that I was already experiencing — and would undoubtedly experience in the future — from continuing.
The day before I checked in, I had a couple of last-minute forms to sign and a lung function test which all went smoothly. I happened to see my Neurologist, who did a time walk test with me (which was better than it was 6 months ago) and said that he would request an MRI when I was in the hospital, My husband and I then had one last meal out before getting to bed early, ready for 8 am check-in.
Pre-Transplant
I would say that the days leading up to the transplant were some of the most difficult so far; from the Thursday to the Monday, I had:
- My Hickman Line inserted (very painful initially whilst they gave me a local anaesthetic, but then ok)
- A chest Xray
- 4 lots of chemotherapy
- Multiple other medicines (e.g. steroids, Tamiflu, anti-sickness, fluids etc)
- Throat and MRSA swabs
These were all delivered round the clock (the chemo itself was at 12 midnight) and I had to have my heart rate, blood pressure and temperature monitored every 2 to 4 hours, so sleep was tricky with all the beeping and whirring of machines. I have to say though, that the Hickman Line has been brilliant as I have had free arms. It makes putting the meds in and out plus the blood test I have every day that little bit easier.
Symptoms
Although I luckily didn’t have the same amount of sickness that I had with my first lot of chemotherapy back in November (prior to the harvesting of my stem cells), this time around, I was caught with a dose of the flu (a throat swab showed as such; it may be that I was harbouring it before I came into the hospital). This lead to a temperature — with my MS this means that my legs also don’t work — sickness and diarrhoea and headaches. This lasted on and off from the Saturday to the Monday and I found it very difficult to even pick up my phone, let alone a book to try and read. I have to say that most of my time in those days was just lying there, trying to get comfy and not moving!
The Transplant
By Tuesday, transplant day, I was feeling better, albeit still on anti-sickness and not wishing to eat and drink. I managed to have an MRI scan on the morning of the transplant which, according to my Neurologist, showed no current active lesions but evidence of some that had popped up since my previous MRI. So he was still keen to get this all moving and still thought that it was the best course of action, although I hasten to say that it would have been too late to turn back at that point!
The transplant itself went by very quickly and was witnessed by a Nurse, a visiting doctor who is learning about HSCT, and a student doctor. The container the stem cells were in looked like a Dalek from ‘Dr Who’ and they were placed for 5 minutes into a water-bath to defrost. Then they were up onto my drip stand and infused with 20 minutes. That was it! All very fast and, dare I say it after all these months of waiting, a bit of an anti-climax? I didn’t suddenly become super-bionic Jen but it felt great to know that they were all in me and ready to get multiplying.
We’re Now Day +4
Since the transplant, I have been a bit up and down with a bit more sickness etc but, on the whole, I am starting to feel stronger. The fact that I can now type, albeit for a very short while in small bursts, is a testament to the that.
The doctors are seeing me every day, making sure that weight gained is coming off (at one point I was 10kg above baseline!) and checking my symptoms. I have been warned about a sore mouth and given some special mouth wash to use and they keep checking my legs for swelling. Luckily I haven’t had any problems so far. The doctor has just been to see me to tell me that my white blood cell counts are dropping — as expected at this stage and that I may have to have a platelet transfusion at some point.
It is expected that I will become neutropenic. This means that my white blood cell count (cells that fight infections) will be down to 0 and I will be very open to any infections for a time until it starts to go back up. This happens 10–30 days post-transplant for most patients. My blood count isn’t quite down to 0 yet, but almost.
So Now?
I am waiting and waiting. I am happy to say that I have been feeling more positive over the past couple of days (at one point, just before the transplant, I told my husband that I didn’t want to do it!). It helps that I can Face-Time the kids and I have so many lovely friends who have gifted books and treats, so I have things to keep me busy, it is just hard staring at these 4 walls all day. I really look forward to any visits and have had both my husband and parents here so far. We don’t do very much but it is nice having people to hang out with and to chat to.
If you would like to read more about my HSCT treatment, please see my website at www.trippingthroughtreacle.com
Originally published at trippingthroughtreacle.com on January 19, 2019.
