When it was first mentioned to me in Autumn this year that I was going to be referred to an organ transplant team, I didn’t think I would see anyone until 2017. Maybe Spring 2017. I’m not complaining or dissatisfied in any way with my pulmonary hypertension care. This isn’t my first rodeo. I know referrals take an age. I still have had no news from the endoscopy unit regarding the OGD I am being considered for and that referral went in September. I was surprised to be sent an appointment to go to the Pulmonary Vascular Diseases Unit in December having already seen them in October. 

Not sure why I was being recalled, I assumed maybe they wanted to do a right heart catheter. However, I left feeling maybe I wasn’t totally clear on how precarious my health is at the moment. Two things in particular made me anxious; the offer to start nebulizer iloprost, which I declined as I felt too well to jump to the next phase in treating my PH and the follow up request to the transplant team. As always I was reminded I could call the unit at any time if things deteriorate.

As is sometimes the case, the day I was in clinic, from my point of view, I felt better than I had last time I came to the clinic. I did still have to stop three times on the way to the PVDU from the hospital car park, but I had no nagging cardiac chest pain. Despite the sleepless night before, I felt well. I was happier with my shuttle walking test and felt I had improved, maybe not significantly as far as numbers go to anyone else, but enough to not make any clinical decision regarding any change in my treatment imminent. Enough to make it feasible to park somewhere not too far from disabled spots and walk to my destination. After all, I managed 260 yards. That’s 60 yards more than a relatively well blue badge holder.

However, reading this month’s clinic letter I’m marvelling at just how different my perception as a patient is to the experience of my symptoms compared to the clinician I see. My 30 yard improvement in the shuttle walking test, which I saw as a personal triumph, was described as “similar” to my previous score of 230 yards. There was an overall tone of precaution in the letter that sent my over-analytical mind into hyperdrive.

I still think it’s absolutely implausible, if not impossible, to get into seeing anyone as a new patient in clinic in 2016, as we are so close to Christmas. However, I suppose it should be business as usual despite holidays officially. But it’s not like I need a transplant this year or next year, is it?  Why the hurry? 

As a patient,whose symptoms of pulmonary hypertension aren’t as good as last year my instinct is to hibernate until Winter is over, but luckily my fatigue isn’t shared by the clinical team, who behind the scenes are planning their next moves in terms of my treatment. With a great deal of effort I have convinced myself there’s nothing to get anxious about. After all being prepared is good. However, the nagging chest pain has been back in the last 24 hours and I’m beginning to wonder what those minor ST changes in my ECG anterior chest leads were. It’s not that minor, when it’s your ECG.