Time for an update

It’s been a while but I have needed some time to just process all that has been going on recently as it has been a lot.

My brain and body for the last 22 months have mainly been preoccupied with the issue I have had with my abdomen. On the 2nd August I finally had the operation which brought this whole saga to an end. I cannot thank the plastic surgery team who looked after me, from the consultant surgeon who saw me in outpatients, the nurse who looked after me each week at the plastic dressing clinic and then the team who did the final surgery. Due to the complex nature of what has gone on it meant surgery was not quite as straight forward. In the end the area concerned was treated as a tumour which the surgeon removed with a large border to ensure that there was only good tissue left. In doing this it meant they had to remove my umbilical too and I now have a 21cm scar.

I didnt actually realise that my operation was planned for black wednesday but by the end of the day I sure knew it was! On the whole from admission to discharge the experience was very good however there was one hiccup. Due to my allergies and idiopathic urticaria and angioedema it is essential I take my medication regularly and do not miss a dose. Well the junior Dr who clerked me in did not do my drugs correctly so I went for almost 18 hours with no medication. In the evening I said to the nurses I needed my drugs as I was starting to get itchy but I was told the Dr was very busy and would get to me as soon as they could. Well a few hours later I had to make a fuss as my body was on fire, itchy, covered in hives, my heart rate was 165, sats had dropped a bit and I was full of phlegm that I could clear as my throat was swelling. At this point the nurses brought me 1 anti histamine which I could not swallow and kept choking on. They got the Dr who saw me and asked why a 2222 crash call had not been put out as I was in anaphylaxis. Anyway after getting a combination of adrenaline, anti histamine, and steroids I started to feel much better and things settled down. This has taught me to make sure I have my drugs and don’t ever miss a dose!

It has been a lot to get my head round and process the last 22 months. I never imagined things would turn out as they have. Having been a user of the health service I have had my share of a variety of care but this was by far the worst and all due to one person. I have faced some of my darkest times and wondered what the point in going on was for. I couldn’t see the point in fighting if I was not going to get help. I tell you give me a life threatening asthma attack any day over what I went though the last 22 months. I know that is a wild statement but it is true.

I have now been recovering and focused on rehab which thankfully has been going well. I have not had any set backs (touch wood) with the wound post op, it is healing well and pain is now minimal.

The big thing is the mental recovery. The first step is to find closure and answers to questions that I have not had answers to yet. I am going to be writing again to put my point across and strongly word the letter to ensure I get some answers as what happened to me should not have happened and can never happen again to anyone else. To ensure that this is the case the person needs to be held accountable and made aware of impact their actions has had on the patient.

During all of this I have been so grateful for the support I have had from family, friends and my teammates who have become a second family. Over this period once again I have lost friends who have really not cared or thought about what I have been going through but I have come to understand that these people really are not friends if they are not there for you when you need them most. Of course the most important support was from Ghillie who has been ever loyal and by my side whenever I have needed him, he has kept me going and given me a reason to get up in the morning.

One thing I have noticed during the past 22 months is that my asthma has been some what stable. I am unsure why it has been stable as there are a number of factors which could have caused this. The first is that it just decided to stabilise which with the nature of severe asthma it is quite possible. Secondly it could be because I was started on omalizumab biologic injections- although this was not for asthma but for urticaria and angioedema the dose is higher than I would have for asthma so perhaps it has helped. Then finally it may have stabilised because I have not being doing so much or mixing with people as much so my lungs have not been under any extra stress, exposed to triggers or picking up infection. I need to wait and see what happens with my lungs now that my abdominal wound has healed.

As I move forward my focus is on ensuring my mental and physical health are as strong as possible. I am now more in tune with both my body and mind making sure I listen to them both and act as I need to to ensure that they don’t decline at all.

I am so glad that this chapter is coming to an end and I can move forward and live my life.