PH Team Again and Back Again for the Surgeon September 2011

We returned from our trip to the Lakes and my problems with my Hickman Line site had worsened. I was getting concerned because it was very red and blotchy and some of the skin was raised. I was frightened that its going to escalate and get into the entry area, cause an infection and then things may get serious. I telephoned the specialist PH nurse and after speaking to the consultant, I had to go back to Papworth for the afternoon to get it checked.

After a lot of deliberation, they decided its probably an allergy to the dressing and they changed the dressing type I will need to use each week. As they are not totally sure sure, I have to have a series of blood tests including blood cultures just to rule out the possibility of infection and have the entry site for my Hickman line swabbed.. I will need to continue monitoring it and phone back straight away if there is any deterioration.

I got a phone call from the transplant co- ordinator, who says there may be a possibility I can see the surgeon later on that week. She arranges a time for me to come back to Papworth, but nothing is definite as the surgeon may get called to an emergency and might not be able to see me, as I live close it may be worth us coming up to to see though.

We manage to see the surgeon. He brings it home to us once again that I am in a delicate state and we are brought back down to earth with a bump once more. He goes through some of the things that are in danger of happening to me should I continue as I am for too long, amongst these are heart failure, my heart giving up and pulmonary aneurysm. We have this conversation in a calm manner, as though we are speaking about the weather.  He had a lovely, caring nature and was very kind. I always have that feeling when I am with the transplant team that I should be turning to look behind me to see who it is they are talking to, because it cannot possibly be me. The harsh reality though is that it is me, and I know this deep down, but it is so difficult for this to sink in and register properly in my mind that this is really happening and that things have come so far, so fast. Twelve months ago I hadn't even got  a proper diagnosis and eighteen months ago I was racing round as a full time teacher and busy mum, blissfully unaware of how my life was going to change in just one moment.

The surgeon confirmed he thought that a heart and double lung transplant was the best plan for me at the moment, although plan B would be a double lung transplant should the situation become more urgent. The size of my dilated pulmonary arteries are the issue and matching them to donor blood vessels in the new lungs could present a more vulnerable situation with more risks. It would not be an impossibility though and as lungs can be available more quickly, then I could be listed for just lungs on the transplant list too. At the moment, the plan was to put me on the live list for a heart and double lung transplant. The fact that I am going to be listed for transplant also paves the way for a third specialist therapy should I deteriorate while I wait.

The surgeon had had all the test results back from my assessment stay by then including my blood tests. My blood group is Group A and my antibodies are very low. He explained that there is a quirk, that cannot be medically explained that many donors tend to be blood group A, so this would work in my favour in getting a match for my new heart and lungs. This quirk in blood groups, plus my low antibodies and my size was a good indication that I could get a match. As usual in the transplant unit, they like to spring a shock. When Rob mentioned the average 'two year' wait for heart and lungs that had been explained to us on our last visit, the surgeon commented that he would be confident he could get me donor heart and lungs in six to eight months time. This was because of what he had already explained, my blood group, my antibodies, my size. I think Rob nearly physically fell of his chair at this point and I was thinking he really is talking to someone else now.

After the surgeon left, the transplant co -ordinator confirmed what the surgeon had said, she had been doing this job over twenty years in various transplant units and told us to be prepared for it to happen even this side of the six months. She asked us to go for lunch and then return so she could do the 'listing' meeting with us. This would be about all the inn and outs of being on the list and waiting for transplant.

We went off to lunch, quite dazed I think, with a lot to absorb.  Heart and double lung transplant operations are not commonplace, the surgeon had explained how only five had been done in the UK in the last twelve months, he also added that he had done them all, in a very humble and unassuming manner. Well I was in the right hands then - he better not be on holiday when my time came!

While we are waiting in the waiting room, Papworth Hospital is featured on the news because they had just fitted one of their patients with a pioneering artificial heart. It is rather strange to see my hospital on the main news. The patient is being interviewed just outside the transplant centre, where we are and we have just walked past that very spot.

At home, we are reminded again as Papworth is featured on both the six o'clock news and the ten o'clock news because of the artificial heart. I didn't really need reminding, but there was the hospital now in my own home, bringing it home to me and reinforcing to me that transplantation is the route I will now go down.

The transplant operation was now not a glimmer in the far future, but an imminent and very real prospect. At this moment in time Rob and I were both absolutely stunned.