Welcome to Transplant Continuing Care Unit April 2011

Today was my first visit to meet some of the transplant team to see what they were going to say about my referral for lung transplantation, and this was quite daunting for me. I still could not quite believe it had come to this in such a short space of time. I didn't really know whether I should be pleased this was happening or totally disappointed with what was happening. There is somewhat of a conflict of emotions going on here, both for Rob and myself.  Should we be delighted another door was being opened for me and there would be another avenue and future hope, because things were not looking that brilliant at the moment? Should we be feeling  disillusioned and demoralised because things did not look very bright for the future at the moment. My PH was still being classed as WHO class IV.

At the clinic we were promptly attended to by the Transplant Co-ordinator, who took us into a comfortable room, offered tea and then went on to ask my lots of questions about my past medical history, lifestyle and the run up to my ending up here in transplant. I was then taken by a nurse and had my height and weight measured and went through my medication details.

Following this, I was then seen by the Transplant Consultant.When we went into the room, it all felt a bit daunting for me, not the least because couldn't quite believe this was happening and was still shocked I think and because I was frightened really about what they may say. I have to say up to this point Rob had continually asked doctors and consultants about my life expectancy and we had always been quoted the same facts and figures by my consultant, I will quote from a letter she wrote for me regarding my ill health pension as I think this may be a questionable point for some people, there is varied information on life expectancy on the internet and appears to be varied information on what people are told by their consultants when this issue is discussed on the PH forum.

My consultant wrote this: 'Historically patients with haemodynamics such as Mrs Graham, have a very poor survival rate, with only 50% surviving less than 3 years. With current medication we are improving the survival and currently the five years survival is 60%'. This information was given to me verbally also on several occasions when we asked for it in those early days too. I obviously trust my consultant implicitly, as she is one of the country's leading PH specialists and is a Director of National Pulmonary Vascular Diseases Unit. Also, because of the high pressures in my pulmonary arteries and my poor cardiac output,classifying my PH as Who Class IV, my consultant thought that it was quite likely that I fall into 'the poor prognastic category' of these figures.     

At first it had seemed really important to know and then I could gauge how much time I might have, but as time went on and we began to go through the hoops of my illness, it became a less significant issue, we realised we just had to make most of any good times and each day as it comes. There were four or five people in the room, and I was pleased Rob was with me to help me.

We went through my medical history again and the consultant then explained some of the details regarding lung transplantation, he tried to keep this simple and explained it would be too much for me take in, if he went into too much detail at this point. He did, however, touch on the operation itself, the medication regime and then the risks,compared to what I faced now. For lung transplantation there is an eighty five per cent chance of both surviving the operation and the first year, then fifty per cent chance of survival after five years. There were also risks of complications remaining from the operation itself, developing some cancers and diabetes because of post operative drugs required. There were also issues discussed around quality of life as it was now and how it may be post transplant. He then asked me how I felt about having a transplant and pursuing this line of treatment. At this time I replied, I would be grateful if we could explore the option, as it opened another door for me, when options were beginning to run out.

The consultant explained that the PH team had been right to refer me for transplantation - there is a very delicate balance with my condition and indeed for any other patient facing transplant - you can be too well to put yourself through all the risks that are attached, you can be too ill to face going through the gruelling operation and survive. He thought in my case it may be too early to actually put me on the list as other lines of medication were being explored and dual therapy may give me at least two more years perhaps if  medication could stabilise me.

The consultant then went on to say he would keep me under the transplant unit now and monitor my progression alongside the PH team. I remember being quite relieved at this, but grateful that we had had a frank talk at least with the consultant and begun to open up another 'door'. Rob and I were then shocked when he said he would like to review my situation again in two months time, we had expected him to say six months. Before I left, there was another round of blood tests, these seem to be standard, wherever I go! I think any sick patient will tell you this!

I was not out of the woods yet.

Really, I should not have been surprised at this outcome, when we were last at the PH outpatient clinic, Rob had had a frank talk with the specialist nurse and she had stated to him that I was not what I looked and I was deceiving, inside I was a very sick person. I knew this deep down, I had known this from the first day I found out I had PH, but part of coping when things keep going the wrong way is to put a brave face on and keep trying and hoping for best outcomes. It also helps to keep yourself informed so you can be prepared for the next onslaught.  It is for me, the only way to go forward,as well as to focus on all the things I can still do and not what I am unable to do.