veletri: a new chapter begins

As in the past, I tend to use this blog as a ‘highllight reel’ instead of documenting my journey often, but I must admit though, even by my standards, this post is way over due! So since the last update I have managed to relocate to England with Greg and Micaela and we are now in the process of settling into our new country of residence. I needed oxygen on the flight from South Africa to Birmingham, and my very conspicuous mask certainly got me a few stares 🙂 The reason for the oxygen is because the pressurised aircraft cabin has around 20% less oxygen than what I am used to at sea level.


Just to recap – The Bosentan I started a few months ago has not had the desired effect, and for this reason my doctors are going ahead with an “aggressive” treatment. So, big news is that I will be starting IV therapy  – TODAY! This is a major step since having a permanent line in my body that is attached to a machine I need to carry around everywhere will be a pretty big lifestyle change! The pump that administers the medication 24 hours a day weighs a few pounds and is about the size of a paperback book – just much heavier.

The last time I posted I mentioned that my mean arterial pulmonary pressures are around 120mmHg based on an estimate from an echocardiogram, but my recent right heart cath (which is a true accurate reading instead of an estimate) was 56mmHG which is obviously drastically lower which I was happy to hear. The normal range as mentioned before is between 8-20mmHG, so even though 56 is “better” than 120, it is still extremely high and doesn’t change the reality that my heart is not coping at these levels.


Post-Right Heart Cath Selfie!

I will try my best to do frequent updates over the coming days and weeks as my body has to go through quite a challenging adjustment process. I had a PICC line inserted in my arm this morning and now I am literally just waiting to get started on Veletri. If anyone wants to understand this type of drug, check out this link for some medical info What is Veletri and how does it work? 


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