A Routine Check With the Transplant Team July 2012

Late August in the garden

On Monday I went back to see the Transplant Team for my routine three month check. All went very smoothly except we had to wait three hours to see the doctor, because one of the other doctors supposed to be running the clinic was still in surgery.

The doctor I did eventually see was a doctor I knew from the Pulmonary Hypertension ward, so he knew my history. I was able to ask him the questions that had been swirling round in my head since my last visit to the Pulmonary Hypertension team. Mainly my concerns had been about prioritisation. The prioritisation system goes like this: heart and lungs come available in the Papworth region, if there are any patients who match who are on the urgent heart list at Papworth, then they are offered the heart, if not then the heart has to be offered to all the other centres to patients on the urgent heart list. If there is a match on the urgent heart list, the heart goes to them, then the lungs are offered to another candidate, firstly to anyone waiting in the Papworth region. If there are no candidates for the heart on the urgent heart list and I'm the only match in the Papworth region, then it will be offered to me together with the lungs. There is no urgent national list for just lungs or heart and lungs!

My favourite spot for lunch

How on earth I will ever get my heart and lungs when this system is in place seems virtually impossible to me, but I am assured that heart and lungs do become available, but obviously this is why the wait is usually longer, on average two years. I have been listed for heart and lungs, rather than just lungs because my PH is stable at the moment and being in this position it is considered I may be able sustain the wait.

My favourite visitor

So the outcome of my visit is that I will stay on the list for heart and lungs, an appropriate option as I am fairly stable at the moment and there is possibly a long wait involved. Plan B will be to switch to just a double lung transplant should my situation deteriorate. A double lung transplant is a riskier operation for me because of my dilated pulmonary arteries and I am told recovery will be harder. There is still funding for a third oral therapy in place too while I wait for the transplant.

I am happy with this outcome and satisfied that a heart and lung transplant is definitely still the way forward.

The Olympic Games are now on us and we enjoyed a really good evening with friends watching the opening ceremony. Their daughter was dancing in it so it was an exciting eveing for them. There were also other friends of our friends there, who made a lot of effort to chat to us. It was clear they had no prior knowledge of our circumstances and it is always a dilemma what to say to people when they question you about what you do for a living and how you fill your time. We have found in the past that it can be a complete conversation stopper to come straight out with the fact you are waiting for a heart and double lung transplant. There doesn't seem to be an easy answer for this one. During this evening, because Rob avoided mentioning it at the outset, because it is a bit of a show stopper to mention this when first meeting someone,  it seemed to get more and more difficult to mention it all and then he found himself spinning some yarn about taking time out of work and having a breather for a while. I was finding great amusement in finding him digging himself deeper and deeper into a hole!

A mini heatwave this week

We are supposed to be going to see the canoeing final at Lee Valley on Tuesday and I am feeling very apprehensive about it, although we've organised parking and tried to plan carefully, I'm a bit bothered about being vulnerable in large crowds, frightened of not feeling my best or taking a turn for the worse once I'm there and then we can't just leave so easily as there will be shuttle buses, queues and crowds to contend with. I'm especially frightened of getting my stomach upsets and nausea and having to cope with the crowds and queues if I need to deal with it. Today we have watched the canoeists competing for the finals and we took note that the stands were open and none were under cover, the forecast is now heavy rain all day, so added to my anxiety is whether or not I'm really fit to be sat in the pouring rain for several hours. If I'm honest the answer is really 'no', I'm not really that fit to be going anyway. I doubt I will go now, but will decide on Monday. I suppose I have put all the 'disabled' facilities to use, but at the end of the day I am sick really not just 'disabled'.