Last Updated on 8th January 2019 by Sarah and Justin
During our week in the wonderful city of Edinburgh, I had the pleasure of meeting new women with LAM.
Sue Sherman of the LAM Foundation connected me with Gill of LAM Action (the UK LAM group). She so kindly arranged everything (and gave me lots of good tips about Edinburgh including ways to avoid some of its hills!).
I first met Gill for lunch with Audrey. They both had single lung transplants – Gill, 12 years ago and Audrey, 8 years ago. They were diagnosed before sirolimus was being used to treat LAM. We talked about our experiences and how things are very different now that sirolimus is helping so many women (like me!). Audrey gave me a copy of the book her husband wrote about their transplant experience, and I can’t wait to read it.
We also talked about how lucky the UK LAM community is to have Dr. Simon Johnson as their LAM expert. A common theme in my meetings so far is women who are so grateful for the care they receive by these amazing doctors who devote so much of their lives to help us. But LAM is such a rare disease with such a small number of patients and an even smaller number of doctors who treat us. I hope organizations like the LAM Foundation and LAM Action continue to help foster new talent interested in treating LAM.
I also met Gill for dinner – this time with our husbands.
Note, special thanks to Gill and Peter for making me and Justin try haggis. Now that that’s done, we can move onto Scotch whisky tastings! 🙂
Gill and Peter told us the most incredible story of how on a trip to South Africa, Gill’s lung collapsed and they ended up having to take a long boat back home to Scotland but the only one available was a luxury liner and they were at sea for 6 weeks! And, to these Americans’ astonishment, their insurance covered the whole thing! Gill and Peter are adventurous travelers and gave us many tips on places we’ll be going to soon. Example, probably don’t go on the 20-mile Tongariro Crossing hike in New Zealand (of course, they did!). But do wake up early to enjoy the lovely weather in Melbourne.
I talked about what it was like to “go public” with my disease to the people who didn’t know about it. Specifically when I was leaving my job to embark on this adventure, I gave some people all the details, some less, and some none at all, knowing if they were interested in following my blog they would learn soon enough. And I learned to accept and respect all reactions: some people ask a lot of questions which I’m happy to answer and some people don’t want to pry, which is fine too. It’s nice to share these experiences with other women who have gone through similar things. With LAM being such a rare disease, I’ve really appreciated meeting more people affected by it who can offer different perspectives on living with it. Gill actually spoke about this topic – as well as support groups in general – with another LAM lady and BBC Radio broadcaster, Charlotte Smith. Even though my experience is different from both these women, it really rings true. So have a listen!
I’m so grateful to have met Gill and Audrey, who are inspirational in what can be accomplished in life with LAM both before and after transplant. Thanks again, ladies!