Warning, if you are nervous about catching an infection or are obsessional about cleanliness then it is perhaps best to skip this blog.
One of the things drummed into immune depressed patients is the importance of hygiene. An allograft stem cell transplant carries a 10% mortality risk and it seems to me that the biggest contributor to this figure is infection. Graft rejection, GvHD liver disease, blood clots and kidney troubles are other factors that spring to mind. A haematologist might not agree precisely with all this but I don't think I'm far off.
To reduce infection risk we are kept in hospital in isolation till our white cells start to reappear. The individual rooms all have filtered air blown into them which then escapes via the two sets of doors that separate the room from the rest of the ward or via the ensuite shower room. The doors are kept shut at all times. The air is filtered so that the level of dust in the room is kept to a minimum. Riding on normal household dust are huge numbers of fungal spores. Think of the late winter sun streaming in obliquely through the window and how much dust can be seen floating in the air, well that's what we see in our house anyway!
The hospital room and shower room are carefully cleaned seven days a week, all flat surfaces wiped and the floor mopped to reduce the dust. We are urged to keep the number of different people visiting to a minimum to reduce exposure to bugs. Some hospitals actually limit the maximum number of people you are allowed to have visiting, Nottingham is a little more flexible. I had two visitors most of the time, Karine and Charlotte with Alexi and Lucy visiting from Newcastle whenever they could, that was it.
We are all on continuous antimicrobial drugs, antiviral, antifungal and two different antibacterial preparations whilst in hospital and will stay on some of these for life.
Nevertheless the biggest risk of infection comes not from others but from ourselves and in particular from our hands. Hands go everywhere on our bodies and on the objects around us and pick up myriads of bugs as they do so. Many bugs can survive quite happily for long periods away from a host. Hand washing is therefore of paramount importance and not just after going to the toilet. In hospital we are given antiseptic wipes to use before each meal so as not to transfer bugs to our mouths. In the first few weeks of chemotherapy I was too ill and shocked to realise this properly until I was put right by the nurses. Mouths and to a lesser extent ears and eyes are the major portals of entry for the bugs.
At home the same personal hygiene rules apply especially in the first few months or if the level of immune suppression has to be increased as mine has been last week because of the GvHD. Apart from hand hygiene the other big thing is door handles, particularly in the kitchen and most important of all the fridge door handle. Karine is brilliant at protecting me from myself and at wiping everything including food preparation areas, door handles etc. The house is littered with antibacterial wipes, alcohol gel and Dettol and dilute bleach. I try to only touch things that are clean and to consciously not wipe my eyes or mouth with my hands. It was surprising how often I was doing these things.
It his hard to keep a sensible perspective on all of this and not go over the top or become blasé and lackadaisical. It pays to not have too much imagination or you would never touch anything ever again.
Other advice includes not shaking other people's hands or hugging friends. On discharge last week I was reminded specifically about this. I quite often wear gloves when we go out and Karine opens doors for me. I'm to avoid crowded places like theatres, cinemas, pubs, public transport (if possible) and busy restaurants. We've eaten out twice so far but only when we thought somewhere would be quiet. I've taken to checking the hygiene standard ratings on the the Food Standards Agency website. Anything less than five stars will get a miss. I've even been been told to avoid supermarkets at busy times for the next couple of weeks, a dreadful hardship! Pets and children can also pose a risk.
As for food I am on a 'pregnancy diet' for the first year or so. No soft or blue cheeses, eggs must be cooked to death, pates are out. No takeaways, avoid reheated food, shellfish, cream cakes, live yogurts, prepacked sandwiches, loose cooked sliced meats and anything not completely fresh. It is surprising how even some hard cheeses are made with unpasteurised milk. Unfortunately the label doesn't always tell you whether something has been pasteurised or not. Anything not cooked needs careful washing, apparently dried fruit is not cooked. Often there is uncertainty. For example what about the dried fruit in muesli? We just avoid such foods. Alcohol is to be kept to a minimum though it is not completely banned. I think I've had three small glasses of wine in the last six months. Surprisingly, it hasn't been a great hardship.
Despite all of this I'm eating eating well and having a rich varied diet thanks to Karine. At times I feel I'm being rather paranoid about infection but having read the blogs of other sufferers and come across patients running into very serious trouble with infection including some fatalities I don't think I'm being too paranoid. The bugs really are out to get me! Nevertheless life is starting to get better generally, the distortion of my taste buds is lessening and I am very gradually starting to enjoy food more and more.
* Fairy Liquid advertising jingle!
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