It was quite an emotional walk heading out the door of St James’s Hospital, it was the end of March, my bone marrow transplant was over, I was going back to my Dublin home, back to family, back to my own bed. I cannot describe to you how great it felt breathing fresh air for the first time in 5 weeks, it was exhilarating. I felt free again, such a huge relief.
Even though I was discharged from hospital, I was definitely not finished there. Directly post discharge, the routine would be three hospital visits as an outpatient a week, until later down the line it would eventually be reduced, so it was tough going even doing that. After being in hospital so long, you just want to walk out of there and never come back, but unfortunately that’s not the way it is.
The hospital visits were for blood checks and treatments depending on what results came back from the bloods, thankfully though it was only on my first visit that I needed treatment for low potassium and after that I was lucky enough that going forward my bloods always came back good so I was free to go home after.
In case of an emergency, I had to remain close to St James’s hospital post transplant. They allowed me back to my Dublin home as it was only a 20 minute drive to hospital, but my family home in Wexford was out of the question. I count myself very lucky that I had such a nice home to live in in Dublin while going through all of the treatment and recovery. It would be a good number of months before I’d be allowed out of Dublin.
If I felt cold, shivery, or if I had a temperature above 37.5c it was straight to hospital, if I had a cold, runny nose, sore throat or if I was short of breath it was straight to hospital. Vomiting, diarrhoea, skin rash, any new bruising, any bleeding, straight to hospital, so there was a lot to look out for, basically any changes had to be looked in to.
Medication Medication Medication
Thankfully my girlfriend took over sorting out my medications, I had so many I needed to take and at many different times of the day, it was just mind boggling. I think starting off I was on about 100 tablets a day.
The tablets that had the biggest effect on me were the steroids. I was on a huge dose of steroids when I was discharged, and would be on them for quite a significant amount of time. I was on such a high dose that I was absolutely wired, during the day, during the night, my girlfriend couldn’t believe how much energy I had, it didn’t seem right.
I started doing a little bit of walking from May onwards to get my legs going again, small walks, I shouldn’t have had the energy to walk at all, but the steroids provided the fake energy to allow me to do it. It was great in the sense that I was able to do a bit and wasn’t just couch or bed bound, but there were two issues with being on such a huge dose of steroids.
Firstly, sleep was nearly impossible, I remember I would be up during the middle of the night watching tv because it was so difficult to sleep, I also found that I was making lists of lots of different things. Lists of things I wanted to sort out, buy, arrange, it seemed to be a reflex action of being in hospital for so long, unable to manage my life or make plans, but now I could.
Secondly, food. Food, food, food. I felt like eating all day and all night, the high dose of steroids gives you huge cravings and you always feel hungry. It was so hard to try and maintain a relatively decent diet while on steroids, but being a runner I was fairly good at making an effort to eat healthy, but to be fair, with what I had just gone through, I had plenty of treats to eat for a bit of comfort eating.
Post Transplant Diet
While I’m on the subject of food, before being discharged, I was spoken to by a nutritionist/dietitian in relation to the strict post transplant diet that I had to stick to when home.
I had no immune system due to the transplant, so the diet was to help ensure I wouldn’t end up eating foods or drinking drinks that would land me back in hospital. I had been told by the post transplant nurse that because I had no immune system, even though I would mostly be at home relaxing, recovering, that I would pick up all sorts of infections or colds or what not, which would land me back in hospital. She told me to prepare mentally for the fact that it would be numerous times, it could be after a few days of being discharged, a few weeks, or a month, but it will happen. I had the fear about that in a big way, I only just survived mentally being in hospital for so long, the absolute last thing I wanted was to be admitted again, it would have been really difficult to cope with.
For a normal person picking up a cold or flu is a pain, but it wouldn’t usually land you in hospital, for a post transplant patient with no immune system, it usually would, and it wouldn’t be for the day, you would be looking at a week minimum up to two weeks depending on how heavy a toll it took on you. Taking my temperature at home was a necessity, as any sort of temperature showing up meant you had to go straight in to hospital. Ignoring a temperature would only make things worse for you, so you had to act fast.
As for the diet, there was a LOT that I wasn’t allowed to eat. Any meat cooked at home had to be very well done, no unpasteurised foods, no food from deli counters, no ice cream from ice cream machines or vans, no pre-sliced meats, no ready cooked hot chicken, no hot food from supermarket counters, no soft or poached eggs, no salads, no fresh or frozen berries like grapes or strawberries, no fruit with thin skin, no raw nuts, no unpasteurised honey, no uncooked vegetables or vegetables with skin, the list just goes on and on.
As for fluids, no unboiled tap water, so I could only drink water that had been boiled and cooled first, I couldn’t even drink bottled water, it had to be boiled first. No ice cubes. No alcohol.
It was tough going, I basically couldn’t really eat out, and had to be so careful, having to worry about being admitted to hospital just because you might eat something you shouldn’t have was always a worry, one that I didn’t need.
I’m not sure if it was down to love, or because she is just crazy, but at one point I had such a craving to eat grapes, that my girlfriend kindly peeled grapes for me, as I wasn’t allowed to eat them if they had skin on them…
It wasn’t by choice, but I basically had to turn in to a germophobe. Not having any immune system meant I had to be extra extra careful and to remain slightly isolated. The same as during the treatment, I wasn’t really allowed to be around many people. Anyone that came to visit I had to ensure they didn’t have any sort of cold, flu or bug. I couldn’t really shake hands with people, hug people or get to close to people, so that was a bit of a pain. Hand sanitiser was a must, always and frequently!
I couldn’t be anywhere near any kids whatsoever, kids as it’s told are nearly the worst for being sick or having bugs, viruses or colds, and of course depending on their age they are perhaps not old enough to know if they are sick or not old enough to tell you, so being around children was a no. I have two nephews and a godson, I wasn’t allowed to see them all through my time in hospital or for months after I got discharged and this was pretty tough, I missed seeing them, being there on their birthdays or at Christmas, but there was nothing I could do about that.
I couldn’t take public transport, go to the cinema, go to restaurants, or any where with crowds incase I picked up a virus or infection, so it really limited me as to what I was allowed to do. One thing I could do was go for walks, outside, in the fresh air, and for that I was so thankful!
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NEXT BLOG: The 100 day scan!