St Jude's Storm

As everyone knows at the weekend it was forecast that we had a big storm coming over much of England and Wales and Hertfordshire was predicted to be right in the very midst of it all. Rob spent a bit of time on Sunday tidying garden furniture amd making things as safe as possible. 

I have made some good progress while I've been home, but we have been having a few night time struggles. One night we were up all night because I couldn't stop coughing: the swelling in my chest where the main join is to my new heart and lungs is helping to cause this and is gradually going down, so this will get much better soon, but nevertheless it is a bit of a pain from time to time until it does. Another night I went to the loo in the night after a very deep sleep, and my new heart didn't like that one bit and decided it would tell me so, a near faint: I have to remember that when an old heart is removed and a new heart is transplanted the nerves to the heart are severed. These nerves tell the body when you are moving about and without them the body has to rely on just chemical reactions, which are much slower to kick in, therefore you need to slowly warm up before you do anything to give this process time to work. So I'm drumming into myself: warm up, warm up, warm up before you move, especially when you have been laid down for hours in a deep sleep! My mistake, but I'm still learning, sometimes the hard way! The next few nights I had trouble sleeping, because I've started getting some discomfort with my chest wounds, but again, it is something to be expected and it will pass soon, so there is much light at the end of the tunnel.

So, Sunday night I went to bed with my head full of the expected storm on top of everything else. It was a quiet but restless night again with the usual problems and when we woke yet again around 5ish the storm was raging outside. We looked outside and things looked fine though, we couldn't see any damage and the big tree that is at the front of the house was still standing thank goodness and the summerhouse roof was still on! Rob made us a hot drink and it was shortly after that, that the power in the whole village went off. We had no phone signals, land line, internet or anything to find out what was going on. We had a battery powered radio, but the most local radiofor us,  which could have given news was affected too and we couldn't find out what was happening. 

Eight o'clock nebuliser time came and went, the nebuliser only works on electric, so I coouldn't take either of them to help my breathing and one of them is an important anti fungal drug, amphotericin, helping my lungs. Rob managed to get the landline working and we needed to phone Papworth anyway with a few queries, so we explained what was happening to them. I was also supposed to be at the doctors that morning, but when Rob went down to check what was going on, they had no power or phones either and all the doctors were working from the Stevenage centre and Knebworth was left in limbo. There was little else they could have done. 

Hour by hour passed and the power showed no sign of coming back on. This made me feel really vulnerable and stressed if I'm really honest. I feel very vulnerable in my present state at the moment and to not have the full security of my own home, knowing I am missing vital drug therapy and struggling to find any information whatsoever as to what was going to happen was really beginning to upset me. We also have a month's supply of my amphotericin drug, which needs to be kept in the fridge and as hours went on, the fridge temperature was slowly creeping up, so another worry. It made me realise just how vulnerable sick and elderly people are in these types of situation. 

Luckily we have fantastic friends, who came to our rescue, they happened to be in and live in a nearby village that had power, so off we went like two evacuees to their house, so we could get warm and I could take my nebulisers. Thank you Ilaine and Richard for being there for us when I was beginning to feel really stressed and upset. While we were with Richard and Ilaine, we got word from our neighbours that the power was back on. We had lifted candles, torches and the lot out ready for later, so this news was such a relief! So after being well looked after, Ilaine had made a room all warm and cosy for us and made hot tea, we set off back home with huge relief. 

When I got back, there was a most beautiful, big bouquet of gorgeous autumn flowers at the front door, sent by all the members of Papworth PH Matters Support Group. This made me cry, it was so thoughtful and kind of everyone and had arrived at a very apt moment. Again, it is all you wonderful friends, when the going feels tough, that pull me through and keep me going and now I'm sitting here nice and relaxed again. Tomorrow will be a new day! 

On the news tonight, the storm has wreaked havoc across the country and three people have lost their lives. I reckon more lives may have been lost if were not for all the warnings we were given about what was to come and the fact that many workers and commuters heeded them, despite the inconvenience. It is better to be prepared and it not happen, than not to have warning and be caught off guard and end up in a dangerous situation. 

So all's well that ends well for us, but I'm keeping that torch close by tonight as they are still fiddling, trying to get the power back on in some of the nearby villages! Let's hope they get their power back on soon, I know how stressful it can be especially if you are vulnerable in some way.