We Can Adjust The Sails

Last week I got a letter from Harefield Hospital.  Since getting ill, I have collated a whole file of medical letters.  Appointments, reminders for appointments, notes explaining what happened in the appointments, follow ups from points raised in the appointment.  Having three hospitals wanting to see me regularly, I’ve now filled a large lever arch file in just three years.  However instead of just reading and filling (ok, shoving in the cupboard, until I file it away once a year!), this letter was intriguing.  It was a report of the transplant assessment meeting held about me back in June, and had all of the results from all of the tests done.  Never before had I seen some of these results.  Doctors generally talk in descriptions and not figures- they describe to you what is happening in words, and rarely use comparable numbers unless you specifically ask them to.  Now, for the first time I had loads of figures, data and test results in front of me.  There was my afternoon sorted!

Being quite inquiring about my medical situation, I sat down in front of google and went through each of the results one by one; working out what the test was, what it meant and how I scored in it.  MRI scans, Chest Xrays, Blood tests, Echo-cardiograms.  I googled “Interlobular septa thickening”.  I compared my urine volume to everyone else in the country.  Was it bad to have antibodies for EBV?  Was it good that my HLA was negative?  They’ve found a hole in my heart.. wow, that’s not been picked up before!  It was all intriguing, interesting.. ‘fun’ even!  Until I got to my lung function test scores.

Now I know that my lungs are not working.  I know that I need oxygen.  I know that I can’t walk across the room without my oxygen saturations plummeting.  I know that my nails and lips turn blue a lot, and that my fingers are starting to club.  I know that I have Pulmonary Venous Occlusive Disease, Pulmonary Hypertension and to spice it up further, an auto-immune dis-regulation in my lungs.  I know that I’m on the transplant list awaiting new lungs because these are going to fail soon.  I know all that.  But still… I feel alright at the moment.  I’ve had a summer of strength and fun.  I’ve stabilised.  In fact, I’ve even secretly wondered if I should postpone being on the transplant list whilst I am feeling so strong.  But then I read my lung function scores, and it was a big slap in the face.

My lungs are functioning at 24%.  Yep 24%!  Only 24 tiny percent!  A quarter of what a ‘normal’ person would be functioning at!  To be more specific, my lungs total capacity, so how much air they breathe in and exhale out is completely normal.  However it is the gas diffusion capacity (TLCO) that is so low.  Basically my lungs can breathe in a normal amount of air, but they then struggle to transfer the oxygen from the air sacs of the lungs in to the blood stream.  I am only transferring a quarter of the oxygen I am supposed to.

To be honest reading those scores freaked me out.  I sat and had a little cry.

It reminded me that I am very ill.  It reminded me that my lungs are not working, in fact failing.  It reminded me of why I’ve been put on the lung transplant list so urgently.  But most alarmingly, it also showed me that I don’t have a lot of room to play with.  If I have another deterioration, then there is not much functioning left to lose!  At what point do lungs become useless and not able to keep the person alive – 10%, 15%?

However it also reminded me that my body is coping remarkably well at the moment.  All of my organs are still working.. still plodding along happily despite the problems.  My lungs are keeping me alive even though they are only functioning at a quarter of what they should be at.  They allow me to walk around the house, play with my dog, cook the dinner, visit my friends.  Although they are so poorly, they keep working.. and allow me to have a simple but happy life.

So maybe I shouldn’t have read the letter in detail.  Maybe I shouldn’t have analysed all of my results, googled all of the tests, compared myself to the general population.  It would have saved me two days of worry and stress and upset.  But then if I hadn’t have read the letter, I wouldn’t have been reminded that I need this transplant.  That I have no choice.  Then I wouldn’t have woken up on the third day with a new want for the transplant, a new braveness, a new determination.  So yes I’m glad I read it and googled it, and reminded myself of the severity of the situation.

And also if I hadn’t have read it, I wouldn’t have discovered about the hole in my heart- that was pretty interesting! 😉