Transplant Assessment - What is my best possible outcome????

I’m back home after my transplant assessment at Harefield, and I must say, it was the most draining couple of days I’ve proberly experienced for a very long time, if not ever, both physically and emotionally.

The drive was long and poor Stefan was shattered from working the night before, I took over not long after passing Cullompton and actually ended up parking at Harefield in the pitch black four hours later.

We got the key for Parkwood (relatives / visitors accommodation) and ventured out to get something to eat which ended up being a kebab back in the room!! I watched a bit of telly but then wanted to get my head down as I knew I had to be reported to admissions before 9 the next morning. It was a restless and uncomfortable sleep but wasn’t long before we were up, signing forms and having my wrist bands put on.

I was in my room by 9am, on F East ward. The room itself was huge, about two/three times the size of our rooms back on Culm ward in Exeter, already equipped with fridge, phone and tv.

The staff were lovely, I just couldn’t fault them, I had Anne on the first day and Jo on the second and they were both brilliant.
I started my tests and investigations straight away; the usual simple things like height, weight, blood pressure, sputum samples and bacterial swabs were easy, I had to have a 24 tape on record which measured the activity of my heart and also have a 24 hour urine collection.

Then came the ECG, CT Scan, bone DEXA scan, X rays etc, all of which I have had many times before. I think the most unpleasant part for me was the arterial blood gas test, lung function test and exercise test which were the most hard work and painful so was quickly relieved when they were over and done with. My BMI (body mass index) was 19.5 which I was really pleased with as the cut off to be able to have a transplant is 18 as your body needs the strength and reserves to help you get through the recovery process.

I had many talks with members of the team over the first day but it was the second that was most important to me…

Once the team have collected all the information about you, your tests results and up to date quality of life, they put it altogether and put your case to the board during a very important meeting on a Thursday for a decision about whether you are listed for transplant.

Unfortunately, (and very typically for me) they aren’t meeting at all this week, so I won’t be discussed until the following Thursday.

However we had a meeting with Dr Carby (my transplant doctor) he didn’t have all of the results back but from what he could see, although my lung function was bad and exercise tests even worse, the oxygen in my blood, (SATS) were relatively normal and quite good for someone with CF. (This was something I did talk to Stefan about, I was concerned as I’m not on oxygen 24 hourly and thought this would be an issue)

He explained that there was a medication he could try me on to take along with my steroids that might help with my wheeze and breathlessness, and prolong me from being put on the active list straight away. Stefan quickly asked if I would still be discussed next week and he replied that I would be, he told me not to get anxious as this was not meaning I wouldn’t be put on the list, but might buy me some time in the long run.

After he left the room I broke down into tears, I was gob smacked and so angry, had I come all this way and gone through all this for nothing???
If I’m not put on the list have I got to live like this until I die?
Not able to walk stair’s and even dress myself? So scared of getting up and walking into the kitchen to get a drink because I know I’ll then be unable to breath, have a huge coughing fit and properly throw up into the sink?
I didn’t want to live like this anymore and the fact he thought an extra tablet would make this all go away devastated me.

I tired to pull myself together when Brian walked through the door, it was time for my meeting with him and he could see I was upset and asked what had been said, so through tears and blubbering I explained what Dr Carby had told me and also the fact I had built myself up for what I thought ‘was the time’ to be told that it might not be, not just yet really upset me.

Brian then explained that this was not all done for nothing, Dr Carby is looking out for what is best for me. In his words, the clock starts ticking on my life the minute I get my transplant, and if I can squeeze any amount of time no matter how little out of the lungs I have now then this could only be a good thing.

The team want me alive and kicking for as long as possible, and although my life is so restricted at doing things at the moment, at least I am still trying to live as normal as possible. He said I NEED a transplant, that’s the whole reason why I was there and I won’t have to go through any more of the tests and investigations that I had just done.

My assessment was completed, but now its just deciding when the time is right for me to be active on the list. I signed all the paper work and we then went through all the procedures of getting a call, having the operation and the recovering process. So much information to take in and what to expect. It's all very scary but in the long run, it's what i want to eventually happen.

They may very well list me next week, but if they don’t and want to try this medication Dr Carby suggested, they said they would trial it to January and see how I was doing then, if no better at all then they would list me.
It could be that the new medication exceeds my expectations and does me well for another six months to a year!! But then as my body does with all treatments, it will exhaust it and then I will deteriorate again, which means I will be then listed on the active list.

Brian said I will not be put on the backburner, I will be regularly seen by Harefield now even if I’m not listed straight away, he told me to think of it like I was in a small little holding group waiting to be put on the active list…

So it will happen, I’m just waiting for my time. I’m still a complete mixed back of emotions right now and will be a jibbering wreck until I get the phone call at the end of next week with a decision, even though I think I already know it in my head.

If it’s not the right time, I can’t dwell, I need to look positively and think it’s a bit more time with my own lungs as shitty as they are, I have to live my life like there is no tomorrow.

At least I didn’t get the bad news that I could not ever be listed, because I am too poorly or because of a problem with my body accepting a new organ.
It’s not good news yet its not bad news, I just need to look on the bright side and think my time will come…

It’s just a waiting game. One day I will go back to work, one day I will be able to climb the stairs, one day I will run up town and actually beat Stefan to our front door... (We can but dream) x