As the lyrics go, ‘a good heart these days is hard to find’ but hopefully a good bowel is a bit easier to locate. As of today, I am ‘active’ on the transplant list for a new bowel and abdominal wall.
I feel very fortunate to have been approved for this pioneering surgery. The transplant team at the Churchill Hospital in Oxford have been working with the colorectal surgeons from Basingstoke (led by my very own ‘Mr. Moran’) to do these transplants for a number of years. To date, they have done about 14 for pseudomyxoma patients. It’s not at all straightforward, each one is very different including the number of organs transplanted, and we aren’t expecting a cure but, it could provide a new lease on life. We have been warned of the many risks and of the reality of living with a transplant. We have been told that there is a chance that my quality of life may be worse rather than better. However, my disease is progressing and my kidney (I only have one) and bladder are already being compromised by tumours as are my legs, so I am pleased to have this option.
For those of you who are on social media, you will have seen that I was in hospital last week. The tumours in my abdomen have gone into overdrive of late compromising the function of my ‘waterworks’. Last week I had an operation to try to relieve the pain and constant discomfort that has become a part of my everyday life. If I’m off-camera on calls it is because I’m struggling to find a comfortable position to take them. It is difficult for me to sit upright, stand or walk for any length of time. I’m hoping that it will calm down in time and that I will get used to this new normal as it’s currently quite limiting. I’ve been housebound for the past couple of weeks other than my trips to the hospital. I am going to try some short excursions this weekend and see how I get on.
In the meantime, I have my mobile phone fully charged and at my side and my hospital bag is packed. When it happens, the surgery will take place at the Churchill Hospital in Oxford with both teams of surgeons, and I can expect to be in hospital for at least 6 weeks. We have no idea how long it will take for the right organs to become available. The average waiting time is 4 months, but it could be sooner, or it could take longer.
Until then, I am trying to carry on as usual as best I can. I’m still working, albeit on reduced hours, and I’m trying to stay busy but well-rested. We’ll keep you posted.