We Can Adjust The Sails

I’m lucky.  Since going on the transplant list, very little in my life has had to change.  Whilst waiting on the list, some patients have to move house to live in the city of the transplant hospital… Or have to desperately fundraise the 100k needed to pay for the operation… Or have to stay hooked up to machines, unable to leave the hospital.  In comparison, so far, my wait has been easy.  However, at times, it does make me feel like a criminal with an ankle monitor! 😛After my diagnosis of Pulmonary Hypertension, I was no longer deemed fit to fly.  Before my illness, I’d visited many wonderful countries around the world… but this was stopped with my new flying ban.  Luckily, being only a short ferry ride from mainland Europe, once a year we could still get our fix of sun and croissants and stumbling phrasebook conversations.  But as travelling was an epic event due to my symptoms, for the rest of the year, we could only holiday in the UK.  The beautiful national parks of the North and West were favourite and regularly visited holiday destinations before PH… and continued to be with PH.  But then I went on the lung transplant list.  And with additional travel restrictions, holidays had to be rethought again.

When I was accepted on the lung transplant list… I agreed to adhere to the hospital’s rules.  The most significant being a restriction from venturing more than three hours away from Harefield hospital.  Harefield is in London.  South.  Bottom of the country.  And as traffic around the capital is pretty appalling- three hours in a car doesn’t get you very far.  No further north than Birmingham, no further south than Taunton, no further West than Hereford.  Overnight I was restricted from venturing around most of the UK.  I could no longer holiday in our favourite national parks, no longer visit Phil’s family on the Isle of Man, no longer take the ferry to Europe (..or even to the Isle of Wight).

For the first year on the transplant list, we were perfectly content to stay within the three hour radius of the hospital.  Yes I’ve missed important events because of it (my nephews’ Christening, Phil’s ultra-marathon).  Yes I’ve had to change previous plans because of it (a bumblebee adventure to Italy, a family birthday holiday).  Yes friends have altered their plans to accommodate me (No IOW hen do, only southern Girlie weekends).  But I had great support to make the three hour travel restriction easier to cope with.  Friends travelled to me, photos and videos were taken of events I was unable to attend, plans were changed without stress.  So we accepted and smiled through the drawbacks: we were just relieved I was on the list.   Besides we’d previously lived in the midlands and up north; so it was good fun being forced to holiday in counties we hadn’t previously visited and wouldn’t normally pick.  For the first year on the transplant list, we could still see everyone important in our life.  My family and friends live close enough to London, and Phil’s family were able to fly across to see us.  For the first year we had no qualms about staying close to Harefield.

But then this summer we noticed a few downsides of having a travel restriction.  Phil’s father can no longer travel to see us as his dementia has increased a pace.  He can’t visit us, I can’t visit him!  Phil is planning an epic ultra-marathon this winter, many miles out of my permitted area.  I can’t support him on his hardest ever challenge!  And the summer weather in the UK has been appalling!  Far too much rain.  Far too little sun.  How we’ve wished we could search out some foreign rays!  This summer, for the first time, we actually bemoaned the three hour limit. Like all living matter, precious donated lungs start to deteriorate outside of a beating body.  They can only actually remain viable and healthy for a mere six hours after being taken from a deceased donor.  Therefore the transplant operation must take place in this small window of time.  My travel restrictions are in place, so I can quickly get to the hospital for the operation.  If the lungs have already been retrieved, and I’m unable to get to Harefield quickly, then those precious life-saving generously-gifted organs will deteriorate and go to waste.  Last year only 0.2% of people who died became organ donors.  Consequently, only 176 lung transplants took place in the UK, despite there being 360 dying people on the list.  As there is a significant shortage of donated organs, precious organs can never be wasted, so everyone on the waiting list has to stay close to their transplant hospital.

Actually I could venture further afield.  I could holiday in the Lake District, visit our family on the Isle Of Man, buy croissants with euros.  BUT I would have to temporarily come off the waiting list.  Suspended until I return.  It’s a hard and difficult choice.  Many people on the list happily inactivate themselves regularly, but with my disease prognosis, and my current lung functioning level, I’m not comfortable with the idea, unless there’s an important reason.  25% of those on the lung transplant list will die before their chance comes.  We’re not all going to make it.  If I am to be one of those 25%- then I want to go peacefully on my death bed, knowing I did everything in my power to survive.  I know that regularly suspending myself would leave me with what-ifs and immense guilt.  Granted, the likelihood of my perfectly matched lungs being offered on the one weekend that I’m suspended, is very slim.  But there IS still a chance.  So I’m not going to gamble with my life for the sake of a mountain view or a bit of sun.  I want to do everything in my power to get some precious new lungs.A fortnight ago I attended the wedding of one of my best friends: beautiful Katie.  Her lovely ceremony and celebrations were actually last weekend… in Majorca.  It was heartbreaking to be unable to attend her special day in the sun.  It was the only time I’ve cried about my 3 hour restriction.  I wouldn’t be there to watch her walk down the aisle to say ‘I do’ to the love of her life. But actually I didn’t miss that! 🙂  As I’d be unable to attend the Majorca celebrations, my wonderful friend found a way for me to be involved.  Instead of running off to do the ‘official bit’ in secret… she had a wedding day round one in London!  I got to cry in the ceremony, shower them in confetti, toast her with champagne, eat lobster at ‘The Ivy’.  AND I got to be the witness!  My signature is on her wedding certificate.  I love her for being so thoughtful and kind, and for finding a way for me to be part of her big day despite needing to stay close to Harefield!  I struggled physically; feeling nauseous and breathless for the few hours we were celebrating, as I’m sadly still unwell… but I wouldn’t have missed it for the world.  During these past few months of deterioration, her wedding has been my shining light; something to look forward to and remain healthy for.  I needed to witness Katie marrying Dave… and I did!

Everyone cried in the ceremony!

Confetti!!

Champagne in the park afterwards!

Doing my witness bit!

The girlies!

Brunch at the Ivy!

So it’s been fourteen months of living life like a criminal with a restricting ankle monitor!  It’s been over a year down south.  It’s been a long time without the mountains or the Isle Of Man or french soleil.  But I am happy to pay the price, to abide by the rules, to weather the downsides of a travel restriction… if it gives me the maximum chance of getting new lungs!  I would love some hot sun though… I’m hoping for an October heatwave! 🙂