Before I got my diagnosis of PVOD, I’d been immersed in the world of Pulmonary Hypertension for three years. Deeply immersed. I read blogs by fellow PHers, followed the latest research, and was a member of two global Facebook groups for patients. Each day I’d read and comment and learn from posts with questions about anything and everything to do with the condition. Yet despite PVOD being a rare form of PH, in all that time, I never once heard it mentioned. So when I eventually got my diagnosis, I knew nothing. And knew no one with it.Pulmonary Venous Occlusive Disease is rare. Incredibly rare. Ridiculously rare. The odds of developing it are somewhere between ‘1 in 10 million’ and ‘1 in 100 million’. The odds of surviving with it are shockingly grim. So there aren’t many of us living with the condition. We’re red diamonds. Returning home from the hospital, I searched previous Facebook posts to find a fellow PVOD-er… and although I found a couple of dated mentions, sadly neither was still alive. 😦 So I reached out and asked if anyone else had it. And the first reply was from an American lady called Alicia.
At that point we were living parallel lives on the opposite side of the Atlantic. Both of us had initially been diagnosed with PAH, both of us were quickly deteriorating, both of us now needed oxygen. We were both coping with a new diagnosis of PVOD/PCH, and had both been told our only hope of survival was a lung transplant. Similar stories, different continents. Over the next year we stayed in close contact. We followed each other’s journeys on Facebook and sent each other private messages when things were tough. And they were tough. We were both looking death in the face. We were both struggling to cope and live. We both had to go through the horrible ordeal of transplant selection. But throughout it all, it was lovely to know that someone else understood what the journey was like.
After a few months, miraculously and unexpectedly, I begin to stabilize and slowly improve. However Alicia continued to plummet downwards. Within six months, her situation became so critical, and her oxygen needs so high, that she was unable to live at home, and had to stay at hospital until gifted new lungs. It was a scary time… but despite it all she remained strong and positive and determined. We continued to message each other; often late at night for her, early morning for me. We picked each other up, pushed each other on, and reminded each other that we weren’t alone. There is strength in numbers. A year after we first started speaking, Alicia got her new lungs. 🙂 Her journey post-transplant has not been easy, there have been many complications… BUT now she can walk and hike and dance and fly planes and travel. In the 2.5 years since her transplant, she has lived life, a second chance, a complete transformation. And it has been wonderful to witness. Although we’re now on different stages of the same journey, Alicia still gives me strength by walking in front of me. Leading the way down a path, that one day I hope to follow. Showing me that I need to face my fear, so I can one day stand atop a mountain. And her happy ending is a daily reminder to never ever give up. 🙂
Back in the dark days when we were both struggling to breathe, struggling to walk, struggling to get accepted on to the transplant list. Back in the scary days when the odds looked stacked against us. Back then, we’d joked about one day being well enough to meet up. At the time, it seemed like a pipe dream, many many many hurdles away. But last week, we finally did it. Alicia made her first cross-Atlantic flight, accompanied by her lovely son Carson, and we met.It was a brilliant day. We gave them the true English experience- a visit to ‘Downton’ (well Blenheim Palace 😉 ), followed by sticky toffee pudding, and beer in a pub! And Alicia was wonderful- exactly the same as her computer persona. We chatted and chatted and chatted. Catching up and sharing. It felt surreal to be there with her, and even more surreal to watch her walking around the palace grounds without oxygen. 90% of people diagnosed with PVOD die within a year. Yet due to some strange miracle, I was still beating the odds… and due to the wonder of transplant, she was still alive with her brilliant new lungs. Amazing! When we eventually dropped them off at the train station, in the dark, it felt too soon. There were still so many conversations that we hadn’t talked about. One day, after I’ve had a transplant, Phil and I will fly out to California to keep talking.
Having a rare disease where very little is known about it is difficult. Having a rare disease where there is no cure is awful. Having a rare disease with a grim prognosis is frightening. But just having one other person who understands the worry, eases that terror. I don’t feel like the only soldier on the battlefield. I’m no longer walking my path alone. Over the last few years, through social media, I’ve now ‘met’ a handful of people with PVOD. Two very sadly lost their lives, another has recently had a lung transplant, and a couple more are hanging in there. It’s hard watching others going through trials that I’ve previously faced. And terrifying watching what could be my future. But there is strength in numbers. And there is comfort in not being the only one. It helps to know that there are a few of us walking this rare journey together. 🙂