|Late August in the garden|
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|