We Can Adjust The Sails

Before developing Pulmonary Hypertension, I’d only set foot inside a hospital a few times.  Hospitals were not in my universe at all, not even in the far periphery.  But after waking up seriously ill one morning, they swiftly become a central part of my world.  And five years later, they still are.  The reality of living with a chronic condition, is that I’m continually being summoned to hospital to be prodded by someone! 🙂

As my disease has progressed, different doctors have been brought on board.  I now have three teams, at three different hospitals, all wanting to regularly see me.  Sometimes monthly, sometimes biannually… but most commonly every three months.  Yep, each of my three teams want to see me every three months!  (And that doesn’t include all the one-off appointments- genetics/ psychology/ physiology!).  During times of illness, I am desperate to be seen by my consultants- I ring and nag and ring and nag until I get the earliest appointment.  However, when stable, I’m the opposite.  I want to avoid doctors, avoid being poked and jabbed, avoid being an ‘ill person’.  And if stable in the summer I’m even more determined to evade hospitals!  I’d much rather spend my limited energy on pottering around my vegetable patch, than on Echo’s and ECGs!  So, with seeds to be sown, and seedlings to be planted… I wasn’t keen to go to either of my recent appointments.  Thankfully, as I’m coping well currently, my transplant team agreed to postpone that visit until August.  But my PH team were less easily persuaded!

The Cardio-Pulmonary Exercise Test (CPET) is not much fun.  Imagine constantly peddling against an increasing resistance, without supplementary oxygen, and whilst wearing a claustrophobic mask!  The stuff of nightmares for a PH patient! 😛  To make matters worse, on the day of the assessment, I still had the remnants of a mild chest infection.  However, as always, I pushed myself to the maximum, and happily managed a looooong six minutes, before my lungs forced me to stop!  Whenever I do activity, my body very quickly reaches a point where my lungs cannot keep up with the oxygen needs.  My leg muscles are happy to continue peddling or walking, but my lungs cannot take in enough air (despite me panting away).  I must immediately stop to allow my breathing to recover.  During an exercise test, I have to force myself to continue peddling and peddling and peddling, past the point where I would normally rest.  Cue feeling very breathless, lightheaded and faint.  However I can only do this for a very short time, before my lungs absolutely scream that they cannot keep up!  Prior to my diagnosis, and in an attempt to ‘get fitter’, I occasionally continued exercising past this point where my lungs can’t cope… and it was horrendous.  Terrifying.  The closest I’ve felt to dying.  I’ve learnt never to push myself to that extreme again!

As expected, my lungs are still unable to extract enough oxygen to meet my body’s requirements during activity.  To illustrate, a common indicator of fitness -the VO2 Max score- showed that during intense exercise, the maximum amount of oxygen that my body could process, was a tiny 14 ml/kg/min.  An unfit adult would normally have a Vo2 max score of 35 ml/kg/min, whereas an elite athlete would have a VO2 between 70-90 ml/kg/min.  No wonder I can’t walk or peddle for very long!  However these results are identical to my previous test, last November.  Therefore amazingly, wonderfully, thankfully my lungs have not deteriorated.  I’m still stable.  And even better, I consequently don’t need to be seen by my PH team for six whole months.  Wonderful! 🙂My next hospital visit is not until August, yay!  Less prodding and poking… and more pruning and planting!  I’m looking forward to a couple of months of just pottering around my vegetable patch.