When people ask me about my health I automatically talk about my endometriosis and/or my diabetes or the joy (yes I am serious) of Slimming World. If someone I trust asks me I may even talk about my OCD and anxiety disorder. I rarely touch on the Pulmonary Hypertension. Why? I can’t see it or necessarily feel this illness in it’s current stage.

My follow up appointment at the Pulmonary Vascular Unit was yesterday. It was my second follow up since my diagnosis in June 2012 and as always I find it a chore. I have to schlep up to Sheffield and attend the Royal Hallamshire Hospital which is a national center for the treatment of Pulmonary Hypertension.

My routine walking test was worse on this visit and my medication dosage has been increased, despite me saying how well I feel, but what stuck with me was the fact IV medication and transplant surgery was discussed. I know I am well enough not to need either but the fact is: I do have Pulmonary Hypertension, my heart catheter showed impairment in the circulation of my heart. This won’t necessary get better and there’s a good possibility it will get worse in 10 years.

In order to improve my health both physically and mentally I go to Slimming World and see a psychologist, respectively.  However, nothing I do will help my Pulmonary Hypertension. I have no control over this illness. Losing weight, being healthy and eating my 5 a day, keeping my blood sugars in control and increasing my fitness levels will have no impact on this disease. For someone who has OCD this is a scary thought. Probably the scariest I’ll ever have, I have never smoked or worked in an environment where I have been exposed to noxious fumes.

The thought of having IV medication doesn’t scare me the thought of needing it frightens me immensely. I think every time I visit the Hallamshire it’s a wake up call that I have a rare chronic illness which has only been treated formally in the last 15 years or so. This illness will shorten my life and I have to accept that things may deteriorate and accept that a major organ system in my body is not functioning correctly.

Once I have done that, I need to explain it to my family and friends in a way that won’t freak them out or upset them, when in fact I’m trying hard not to freak out myself. I am fighting a losing battle but I can choose to fight it well or be a coward. I’m not a good coward.

Image

For information about Pulmonary Hypertension please click here