The Transplant Assessment August 2011

We arrived early back at Papworth Hospital and I was admitted back on Duchess Ward again. This is becoming like a second home. We had waited and waited as usual for the appointment, it had come at the right time, just before we went on holiday back to the cottage, so we could try and get away from it all, once we were done.

Gardens at Sizergh

We were greeted by one of the transplant co- ordinators first and he explained what would happen over the next few days. A tranplant doctor then saw us and examined me and took my history. I had a walk test and lung function tests. In the afternoon we met another of the transplant co -ordinators who went through a lot of the ins and outs about the transplant operation, what would happen before, during and afterwards and she explained all about the medication.

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.

Fuscia, Sizergh

On the second day, I had an echocardiogram, which was in line with my last one, showing that my heart was improved. I then met with the consultant again. He went through a lot of the things I had been told before about the risks of the operation and the statistics for survival after transplant and the stastistics for my survival in my current condition. All in all, he felt I would be a patient who may benefit from transplantation, I might get another five years if I am lucky as opposed to the two and half year prognosis I had now. Of course, no one really knows and I can only be advised on the statistics they have got and my medical history to date.

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.

Solway Coast

As I had had some problems the week before and been taken to A&E, the PH team wanted to check me out as well. When I had this check, I mentioned the nausea and diarrhoea I was having still and I was prescribed domperidone to take daily for the sickness and loperamide for the diarrhoea. They felt my drugs were keeping me stable now, but wanted to help me overcome some of the side effects now I had been on them for a few months. We also had to be observed again making up the epopostrenol medication - no rest for the wicked! Eventually I was discharged and was given a time to come back after lunch the following day for the verdict. I should have met the surgeon, but this had not been possible due to his work commitments.

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.

Coniston Launch

We returned the following day and it was recommended that I have a heart and lung transplant. I would need to meet the surgeon and have a listing meeting with the transplant co -ordinator before I would be put on the live list and it was also subject to my mamogram and smear tests being clear. I would need to arrange these next. The other lady having her assessment was in the waiting room too and she had been offered a heart and lung transplant also. We were both pleased and overwhelmed that we had been given this chance. I remember feeling how surreal everything was, it was a strange thing to be delighted about really and I felt overwhelmed with sadness for the other lady, who had not been so lucky. She was a similar age to me, with two children and a devoted husband. This disease is really so cruel.  

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.