We Can Adjust The Sails

What a difference a week makes.  This time last week, I was feeling breathless, sick and weak, everything was taking me so much time to do and my activity level was slowly dwindling back to zero.  My transplant referral had knocked me down emotionally, and together they were threatening to steal my hope and positivity.  Yet a week later, I am feeling so much better physically and so much happier and more hopeful emotionally.  So what has caused this happy change?  Oxygen.  I’ve been prescribed oxygen.

My lungs are having a hard time at the moment.  In the last few months they’ve started struggling to supply me with enough oxygen to keep my blood oxygen levels normal.  They can cope when I am sedentary on the sofa, but as soon as I try to walk or make a cup of tea or chop up the dinner, they struggle and my body is left to function with not enough oxygen to work effectively.  Consequently my days have started to be filled with feeling weak, nauseous and breathless, and my body reluctant for me to do anything as it exasperates the symptoms.  My doctors at the Brompton have had a few meetings now to try and explain my unusual test results.  They have narrowed it down to a handful of lung problems (in addition to my PH), and have got a professor of respiratory diffusion on the case also.  I am due to return to the Brompton on the 21st for further tests, and hopefully a final second diagnosis.  Until then, I just need to keep going.

I was gutted when I heard I was to be prescribed oxygen.  My doctor explained that by continuing to have low oxygen levels, I would start to damage my heart and the rest of my body, as well as be at an increased risk of a heart attack or a stroke.  I agreed reluctantly to have the oxygen, but then came off the phone, burst out crying and emailed my best friends in a panic!  In my head, needing oxygen was only for people who were near to death.  To suddenly need something to help assist with such a simple act as breathing, was a terrifying thought and highlighted to me how ill I had become in the space of a few months.  I was nervous how people would respond to me wearing it.  Wearing the mask would be a red light flashing ‘ill person’!  With PH I look relatively normal, most people probably wouldn’t realise I was seriously unwell.  But here was something that would make people stare, or even worse, pity me.  I didn’t want that, so I didn’t want the oxygen.

However it was something my sister said that changed my thought process from negative to positive.  “Oxygen is the one drug your body is going to love”.  And I agreed.  Oxygen is natural, my body loves and needs it, and it’s going to make my body happy by keeping its oxygen saturation at the right level.  So I then decided that yes I definitely wanted it and was actually very lucky to have the option of it.  So instead of viewing oxygen as this negative thing coming to barge in and ruin my life, I started to look forward to it coming and began hoping that it might start making me feel better.

Making lunch

Carrying the oxygen canister around

Oxygen selfie

Happily it has made a difference.  I now no longer have to stop when I walk from one room to the next.  I can now do the washing up with just one rest stop instead of five.  I can now have a shower without stealing my energy for the rest of the day.  I have walked outside for the first time in a few months- the first day I did 30m, today I managed 100m.  I can walk up the stairs in one go.  I can even bend and squat for the first time in months!  I don’t want to mislead you and make you think that I am restored and well again as obviously I am still very unwell, and still very limited in what I can do compared to only a few months ago.  However I can now get through the day without feeling ill, and finish the day without feeling too weak and exhausted.  Ultimately this had helped me feel happier and more comfortable about the wait to find out if they can help treat my lung problem.  It has fanned the flames of hope for me again.