Will S
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Will S
Posted by
30 Dec 2015

My experiences of having a stem cell transplant and looking to the future

My last post was written in September, just a few days before I was to have my bone marrow transplant and at the time I was very scared of what was to come, but now feels like the right time to write an update on how everything panned out.

The transplant process began on September the 24th and as expected the chemotherapy caused the usual side effects of vomiting and lack of appetite. This was then followed by high intensity total body irradiation for five days. I'd never experienced radiation before and it wasn't great. The process only lasts for about twenty minutes per session and I had been told that compared to the chemotherapy it was far less unpleasant. However, I experienced a rare effect whereby I could taste when the irradiated beams were aimed at me. This is not uncommon in radiation localised to the throat or mouth but was not something I was forewarned of, as even the Radiographers had not met someone who had encountered this sensation during the full body (and less concentrated) process. The taste was truly bleak, a mixture of pumpkin and metal and it stayed with me for hours afterwards which added further struggle to eating properly.

A major side effect of the radiation is an incredibly sore mouth, one which makes it nigh on impossible to eat. Due to the fact that I had already been eating less leading up to the transplant, it was decided that I would have a Nasogastric tube inserted into my nose and down into my stomach so that I would have access to food at any point and hopefully not lose too much more weight. Again, this was pretty uncomfortable and involved a lot of dry wretching but it didn't take long for the line to be put in. Incidentally I didn't get any symptoms of a sore mouth and vomited up not one, but two of these NG tubes which left one end hanging out of my nose and the other out of my mouth. Joy.

The stem cell infusion itself began on the 2nd of October and at the end of day five of radiotherapy. I was to have twelve bags of my donors bone marrow (which I'm told is a lot) over the course of about five hours. It was an underwhelming five hours in truth, after being hooked up to so many I.V.'s in the two months leading up to it, the donor's marrow could have just been any other blood transfusion in the end. My Mum, Dad and sister stayed with me the whole time which stopped me freaking out, I'd been alone in hospital many many times before, but that night felt of greater importance than any other and I needed my whole family around me. The next day was when all the trouble began...

My poor physical response to the chemotherapy meant that the doctors were deeply concerned that my terrible immune system would mean I would get a life threatening infection. Therefore, it had been decided that if any family members were a match with mine then they would donate their Granulocytes (white blood cells) to me to help fight off infection in the first two weeks of transplant. Happily both my Mum and my sister were matches and both offered to donate. However, it was only weeks afterwards that I discovered that there were some potentially very grim consequences of donating these white blood cells and although I don't want to go into these consequences on here, suffice to say that both Mum and my sister were incredible not to hesitate to donate for me.

Meanwhile, on the second day of my transplant I had awoken feeling very under the weather, understatement of the year. Being in isolation on the bone marrow unit was different to the TYA unit as nurses were checking up on me as regularly as a couple of times an hour. Therefore, it didn't take them long to notice that my already low blood pressure was dropping rather worryingly lower. Optimal blood pressure is about 120/80mm/HG, by the time I was moved almost comatose to Intensive Care my blood pressure was 56/28mm/HG. Although I was barely conscious initially, once in the ICU I had regained full awareness of my surroundings...unfortunately. I already had a Groshong line in my chest to allow for I.V.'s to be pumped into me, but the doctors in ICU needed more access to my blood vessels to give me more treatment. As such, I was completely awake when they cut slits into my neck on both sides with a scalpel and inserted a further five tubes into various blood vessels as well as one into my wrist. At this point my Mum and sister were donating the aforementioned Granulocytes in South Mead Hospital on the other side of Bristol so were being updated by my Dad over the phone until their donating was completed, which left everyone feeling powerless. I was in ICU for four days with a nurse not leaving my side for even a minute! Mum spent almost all the hours of each day with me and undoubtedly they were some of the hardest we had to get through. However, get through them we did. I was effectively strapped to my bed and to complicate matters I didn't even have control of my own bowels, Mum would have to lift me off the bed for me to urinate or defecate and if I'm being honest most of the time I was so weak, slipping in and out of consciousness that I'd more often than not miss the bed-pan anyway. I look back at those days with astonishment, words can't really describe the sheer respect I have for my Mum. She was phenomenal and took everything in her stride as if this was all normal. Everything she did was to make my life just the tiniest bit easier, it's hard to explain to anyone who hasn't experienced that complete debilitation, there was absolutely no shame or embarrassment when she would help me dress or clean me because I was too ill and broken for those things to be a necessity. I now find that seeing these words in writing is quite crushing, being at home recently has meant that these events have faded to what feels quite a distant memory and I've taken for granted how much better life is now.

After having the lines from my neck removed in ICU, I returned back to isolation in the Bone Marrow Unit in the Haemotology Centre. I received the Granulocytes donated by my Mum and sister and infection was warded off. The doctors kept saying that they were looking for a rash on my skin called GVHD which would show them that my donor's marrow had grafted into my bones and on approximately day 11 this rash appeared at Grade 1 level (the lowest). This led me to having to use some mild steroid cream to prevent the spread of said rash and once it had disappeared I was free to leave on day 22. In total I spent about a month in isolation and I wrote a lot of my thoughts down in a book at the time and kept myself busy with YouTube and reading familiar books. My family were allowed to visit me in hospital but because I was so susceptible to infection I wasn't allowed many visitors at all. The one thing that did break me was the food. Hospital food completely wore me down, especially as I was/am on a "clean diet" meaning that all my water is boiled and I can only eat from a very strict list of foods. Boiled water was warm and so in the end I stopped drinking, in the last two weeks of hospital I would get all my nutrition from Weetabix and all my fluids from the left over milk in the bowl. When I left the hospital I weighed a meagre 56kgs in comparison to the 78kgs I weighed when I first arrived and so I've spent the last three months attempting to put on weight.

In the time that followed I was still visiting the hospital at least twice a week and staying in a room provided by the charity CLIC Sargent with my Mum a short walk away. We filled the days with walks and short trips out but had to steer clear of lots of people and busy public places but around day 50 I noticed another rash breaking out on my skin. The doctors diagnosed a very low Grade 1 GVHD again and yet in two days it had covered 86% of my body and developed to Grade 3! This led to lots more tablets being needed as well as various creams having to be applied until it was all under control.

In comparison to the months beforehand, November and December were fairly subdued until I managed to contract an infection from a splinter of all things, on December the 20th just 3 days before my sister's 18th birthday. However, with 14 extra tablets to take a day the infection was brought back under control and I've had the longest break from hospital in 6 months, a whole week and a half off! Gradually the doctors have let me have longer and longer trips back home and as I said earlier this has led me to taking things for granted far more than I'd like. I'm ashamed how quickly I've forgotten how much worse things could be.

The last few months have been fairly nightmarish, often terrifying and at one or two points I've flirted with death. Yet through all this I couldn't have managed without my my friends and even more importantly my family. My transplant still has a 50% success rate and I don't really know how long I'll be taking tablets for, or what infection I'll pick up next, but I know do know one thing, it's so important to take the most pleasure out of life when possible, because it can all change so quickly.