|Gardens at Sizergh|
The whole process was daunting. I was quoted by my consultant that there is a twenty per cent chance of not surviving this operation and a lot of possible complications, plus only a fifty per cent survival rate after five years. The drug regime that follows sounds daunting and even the drugs pose some very serious risks such as diabetes, lymphoma and certain cancers. This is on top of other side effects such as nausea, sickness, headaches, shaking and others. It sounds like I will really be swapping one set of problems for another, but if it keeps me alive and with my family for a few more years then this is all that matters. Both my PH Consultant and Transplant Consultant thought I was a long way down the diagnostic pathway for my PH.
The next bombshell was then dropped, this was becoming a bit of a routine in the transplant unit. It was looking like a heart and double lung transplant would be a safer option for me. The consultant explained that my pulmonary arteries are markedly enlarged, he even showed me a picture of them on screen and highlighted how dilated they had become by sizing them down to what they would be in a normal patient. A bit frightening all of this. Matching these to the donor vessels would be tricky, although not impossible. It was explained that there is usually an average two year wait for heart and lungs, but this may be in my favour as I was quite stable and well at the moment. Two years sounded far away enough to get my mind round it, but near enough to ease my worries about my condition.
I was asked to make sure I am up to date with my dentist visits, I was, so no problems there. This is because infections can be passed through the gums, which could pause a problem post transplant if I had gum problems. I was also told I would need to get both up to date mammogram and smear tests. Again, they need to rule out any other major disease before putting me on the transplant list. I was lucky to have no other medical history prior to this dreadful PH, other medical conditions can also affect whether you are suitable or not to be listed. So all looking good so far.
I had to have a whole host of blood tests, including HIV and an antibody check again. So far my antibodies were showing very low, which is good for matching to a donor and good for rejection problems. All in all I was a good candidate and the consultant just wanted to go through my case with the transplant team the following morning and check with the surgeon about his thoughts on heart and lung transplant versus lung transplant. As we lived quite near, he said I could go home for the evening and then come back in the morning.
An awful lot to take in again.
While I was on the ward this time, there were a few things happening that probably influenced my decision in favour of transplantation. The lady next to me had turned down a lung transplant at an earlier stage and now she had deteriorated, her heart in a poorer condition and she really hoped she could be accepted for a heart and lung transplant now, although she feared she would not be well enough. I feared if I turned the offer down, then I may become too ill to be listed.
One of the ladies I had met on my last visit was still on the ward and she was losing her fight against PH and had become too unwell to have her heart and lung transplant assessment. Our stories up to now had been similar, but I had now been offered a second chance.
Rob and I walked out of the hospital feeling very sad and I felt very humbled that I was being given another chance and another door was opening for me. Again, I felt blessed and lucky.
Rob and I left the hospital and called at Wimpole Hall, a National Trust place nearby for a cuppa. Again, it all felt strange, our conversation about heart and lung transplants, in the summer sunshine amongst the families eating their ice creams in the middle of the school holidays. We used to bring our children here a lot when they were little, at the time I didn't know I would become a teacher and be bringing my Year One classes here to visit the farm and the garden. I remember thinking I could never have even dreamt this one up, that I would be sitting here a couple of years later, drinking tea and discussing my heart and double lung transplant.
The world was going on all around us, while our world was spinning and spiralling more out of control and into the unknown.