This is a bit of a quick and dirty update on my Pre-transplant assessment on Monday. Getting this down has been harder than I thought; it was a difficult day to go through. The trip to Papworth was exhausting. Probably a combination of getting up and out to get there and the process of the assessment itself.
I didn’t sleep at all well the night before; I thought I had been feeling fairly relaxed about it but the closer it got the more nervous I became. I guess having been inside for so long it was a challenge to go out anywhere never mind for a lung transplant assessment.
Papworth is a sprawling collection of buildings that all looks a bit ramshackle, although they have built a new hospital which will open in September this year. We had to hunt around for half an hour to locate the right place in Transplant Continuing Care.
Once we’d go there (my husband came with me; Papworth recommend having being accompanied) it was real all of a sudden. Straight in with blood tests - tissue viability, blood type , antiviral etc. to start with. Not sure what I expected to happThe pre-assessment is a comprehensive process that gathers as much information about you in terms of all your medical history as well as the COPD. There are a lot of things that rule you out for example cancers or other serious illness as well as your general health and fitness for surgery eg basics like weight and mobility.
Essentially it is an assessment of indications and contraindications and a risk/ benefit analysis to determine your suitability for transplant. Quality of life and life expectancy are a key factor. There is no guarantee that a transplant will actually prolong your life as it’s difficult to predict how long you have to live anyway and the outcome of surgery (notwithstanding the risk of dying on the operating table) is also difficult to predict.
So you become a number of risk factors that get inputted into a calculator which are weighed up against the transplant survival rates- 80% survive first year and 50% survive for 5 years.
A successful transplant can improve quality of life considerably so the consultant will balance the risks presented by my deteriorating health and reduced quality of life - and with my COPD any exacerbation could be the one that finishes me off- against the potential benefits of a transplant.
I have to have a couple more tests including an angiograph to make sure that my arteries are ok before they will proceed further. Heart disease is one of the contraindications as well as a risk factor in the operation. As well as reducing the chance of a good outcome If your heart needs keeping going during surgery it’s the full opening up your whole chest otherwise they can go in under the breastbone and take the lungs out/ insert new ones through there which is a little less invasive.
Either way a major thing to face up to. After 3 hours of talking with the nurse, registrar and consultant they think I am a potential candidate so if the angiogram is ok I’ll go back for a further 3 day assessment.
I came home feeling rather.....well emotional (usually manage to keep those under wraps) I suppose. I guess facing up the reality that I am ill enough for a transplant - assuming I am also well enough - should be a time to shed a tear.
But as always I will find a way to adjust to that. Ordered a new pair of pyjamas this morning! Considered a new pair of track pants (pyjamas and loungewear for me until further notice) in red with a lie stripe but they’ll make me look like an antibiotic. Maybe I should be posting pictures so this becomes more of a lifestyle blog, but how do you get the balance right? Don’t want to become the Kim Kardashian of the lung transplant world. Maybe that’s the whole point though and the question should be - how do I face up to this whilst holding on to me? Should shopping suddenly become unimportant?
I am hoping that is a major step done now. I’ll have to wait for the angiogram (don’t like the idea of a tube being pushed into me and apparently you can feel it ‘pulling’ as it goes through the artery) referral to be processed by my GP which means waiting for letters etc so I’ve no idea how long that will take.
So that was Papworth in a nutshell. I’ve finished my antibiotics now and been discharged by Hospital at Home docs (the best service ever) and i’m waiting for the respiratory physio to help get me back up and running. Onwards and upwards. Until next weeks post......