My name is Bec and I was diagnosed with PSC about a week ago now. I'm really glad I've found this place, as googling PSC is fine, but it tells me the biology behind the disease, rather than what it feels like to live with it - which is what I'm interested in knowing.
Basically, I was diagnosed with Autoimmune hepatitis at the age of 18. It's always been under control with Azathioprine, and I have minimal side effects, so I've been able to live a fairly normal life until now - just no drinking! Some of my liver enzymes were normal - some have always been high. Not by much, but they've never come down within normal range. I had the one specialist for about ten years, who seemed to think that was just me, but he left suddenly and I was referred onto another guy, who said it wasn't normal and he wanted to look into it. Long story short, he referred me onto the major clinic in Melbourne and the uber-specialist there - he seemed to think all was okay, after some monitoring, and referred me back to another specialist nearby.
During this time I was diagnosed with UC. It's fairly controllable as I'm already on the meds to deal with it and I'm basically asymptomatic with it too. However, when I saw this new specialist, he said he was just going to test me for PSC, as there is often a link. Test's just came back positive. I'm basically very early diagnosis here and asymptomatic. My liver functions are still just above average but not majorly, so obviously it's been picked up early.
I'm a 32 year old female. I'm relatively fit, play sport competitively and love to travel. Despite the fact my azathioprine means I have virtually no immune system I rarely get ill. I'm also lucky enough to work from home as a writer, which I am thanking my lucky stars for, considering this latest diagnosis (I set my own hours etc. and can nap and rest when I need to). I nap a bit occasionally and need more sleep than I did in my twenties, but sometimes I think that's the AH too - I've learned to listen to my body and give it the rest it needs. My long-term boyfriend is my rock, though he's having a bit of trouble accepting this diagnosis and wants me to get a second opinion - I've been through enough specialist's to know when I've got a good one, and he showed me my results, so I know the diagnosis is correct, it's just the way he deals with things. Reading about everyone's stories here, obviously I know how lucky I am to be so well, all things considering. However, I'm very well aware that my condition is going to change at some stage and I'm grateful to everyone who has reached out so far in welcome.
My questions: I always considered having children in my mid-to late thirties. This diagnosis has thrown me for a bit of a loop. My specialist seems to think it's not going to be an issue, but I'm worried if I hold off too long, am I going to be too unwell to deal with children? Also, I've seen some websites saying its really hard for a PSC female to conceive/carry a child. Others say they've been fine. Has anyone had any experience with pregnancy?
Also, how has everyone coped with work? I'm still building my career and it's hugely important to me, so I'm curious as to how everyone deals with their jobs?
Thanks for being here guys!