Introduction and query on lifestyle

Welcome New Member Introductions
1

Hi,

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!

Bec

2

Bec, although no expert, I have not seen anything that said that psc would be a problem with having kids. Anyway, have fun trying.

There is a recent thread on the subject of work and fatigue. Some good suggestions there.

I am so glad you're asymptomatic with your UC.

3

Dear bec. Sorry to read of your diagnosis. Glad you’re travelling well. I’ve got a 16 year old daughter with PSC and UC, and we’ve been through the journey.



Re childbirth, my understanding tallies with the other replies.



I’m just wondering - do you live in Melbourne, Australia or Melbourne, Florida ? If its the former, we share the same city. It would be good to discuss the various treatment options



Good luck, and welcome to the forum



Best wishes, Adrian

4


Adrian said:
Dear bec. Sorry to read of your diagnosis. Glad you're travelling we'll. I've got a 16 year old daughter with PSC and UC, and we've been through the journey.

Re childbirth, my understanding tallies with the other replies.

I'm just wondering - do you live in Melbourne, Australia or Melbourne, Florida ? If its the former, we share the same city. It would be good to discuss the various treatment options

Good luck, and welcome to the forum

Best wishes, Adrian
5

Hi Bec,
Good news is I just had a baby 9months ago and my liver enzymes improved.Some became within the normal range.I had a lot of itching but I was able to take medication for that.They induced me two weeks early just to be on the safe side.I was very conscious about not taking too much pain medication after the birth as I knew my liver would struggle to process it.As far as the tiredness, I make sure I nap when baby naps.Im the same as you in the way that I want to have the babies while I’m still healthy and fit.I keep away from high fatty foods as I notice when I eat these I tend to get very tired and just feel crappy!Im not sure about the whole struggling to conceive linking to PSC.I had a miscarriage with our first pregnancy but that’s how they found the PSC.As long as you are monitored closely there should be no reason why you can’t have a normal and healthy pregnancy.
Bec(NZ)

6


Bec said:
Hi Bec,
Good news is I just had a baby 9months ago and my liver enzymes improved.Some became within the normal range.I had a lot of itching but I was able to take medication for that.They induced me two weeks early just to be on the safe side.I was very conscious about not taking too much pain medication after the birth as I knew my liver would struggle to process it.As far as the tiredness, I make sure I nap when baby naps.Im the same as you in the way that I want to have the babies while I'm still healthy and fit.I keep away from high fatty foods as I notice when I eat these I tend to get very tired and just feel crappy!Im not sure about the whole struggling to conceive linking to PSC.I had a miscarriage with our first pregnancy but that's how they found the PSC.As long as you are monitored closely there should be no reason why you can't have a normal and healthy pregnancy.
Bec(NZ)
7

Hi Bec

Sorry - just checked your profile - I see that you are in Melbourne, Australia, as are we.

Would be interested to swap notes about local treatment options, etc. (right now wondering how the Budget will affect us - so many tests and appointments with this terrible disease)

Best wishes

Adrian

8

Thanks Jeff. I'll check into that thread!

JeffDC said:

Bec, although no expert, I have not seen anything that said that psc would be a problem with having kids. Anyway, have fun trying.

There is a recent thread on the subject of work and fatigue. Some good suggestions there.

I am so glad you're asymptomatic with your UC.

9

Thanks so much for the reply Stephen. Definitely going to check out the info on diets and stuff, though the idea of gluten free makes me want to cry (:

As for the itching and fatigue - I think I had a preview of that when I was 18 with my AH. My parents actually thought I was being a typical lazy teen! I would get out of bed about ten, maybe make it to twelve, when I fell asleep on the couch, woke in the afternoon for dinner and then back to bed! If I went anywhere or worked, I would literally crash on the couch the moment I got home. And yes, the itching would keep me awake for ages! I ended up coming out in bile-filled blisters all over my skin, because I just had so much in my blood. It was really gross and I can't believe I didn't scar. They were actually talking transplant then because my liver was like a honeycomb, so I sort of consider myself lucky to have bounced back so well.

So far its just in some of my small bile ducts, so hoping this will give me some time to do a bit of travel, maybe have kids and then we'll see.

Thanks again!



Stephen Cox said:

Hi Bec,

You are in a unique position. You have three connected diseases yet you are basically asymptomatic. This is a great thing but as you say, this can change. PSC is a somewhat weird disease, seems everyone is somewhat different in terms of the path they follow. Doctors and researchers still don't know very much about this disorder. Thankfully we have groups like this where we share our experiences and this can be more helpful than asking a Doctor, although I always recommend running anything said here by your specialist.

With respect to a possible pregnancy, there does seem to be some caution attached for patients with PSC and IBD, however it should not prevent you from having a baby. Might I suggest you see a high risk specialist for pregnancy. Take along any materials you can copy so that he or she can bone up on PSC, if they have not already seen it. There is some risk to waiting. You just never know how this disease will go. Generally it moves slowly, however, some patients who have PSC in the common bile duct instead of their small bile ducts and experience a different rate of progression. It seems to me that you need to consider all your options and ask yourself will you want to have a baby 5 years from now if you are experiencing frequent symptoms such as fatigue, nausea, fever and itching. Oh the itching. It drive a person nuts.

As for working, it sounds like you have a perfect set-up. I am not sure you need to be concerned about your work at this time. If your PSC gets worse, then work will be a bigger challenge as the fatigue associated with PSC can be crippling. For now, I would put this part of your life out of your mind and write to your hearts content.

As you scroll around here you will see articles and discussions on diet, alcohol, tests you need to get done, secondary diseases that can happen to PSCèrs an so forth.

There is wide section of people on this site that have suffered so much and continue to do so. Young, middle aged and senior. There are many good people to get to know and be sure to friend people. Its nice to get to know some folks here and talk to them when you need to chat.

Feel free to post away. We are all in this together.

Take care and be sure to let us know how you make out with your challenges.

Stephen

10

Hi Adrian,

Sorry to hear about your daughter - hope she's okay. I'm actually two hours out of Melbourne - on the other side of Ballarat, which is where my specialist is. Interesting thing though, when Paul Gow at the Austin referred me back to another specialist he really only recommended two in Victoria whom he thought were worth talking to - Dr Jon Watson in Ballarat and Michael (?) Sombeody in Geelong. I don't know if he was referring to country Victoria, excluding Melbourne or not.

Urgh, and I'm hearing you on budget considerations. I think I need to start stockpiling - maybe instead of super, I can save my own little health fund for when I start going downhill.

Cheers,

Bec

Adrian said:

Hi Bec

Sorry - just checked your profile - I see that you are in Melbourne, Australia, as are we.

Would be interested to swap notes about local treatment options, etc. (right now wondering how the Budget will affect us - so many tests and appointments with this terrible disease)

Best wishes

Adrian
11

Thank you! You've put my mind at ease! I was just going off some things I've seen on the internet, but I'd much rather hear from someone who has gone through it!

It's a concern, but I think I'm going to talk to somebody, maybe a gyno and discuss my options. I really wasn't ready yet, but you know, sometimes you have to adjust these things.

Cheers,

Bec



Bec said:

Hi Bec,
Good news is I just had a baby 9months ago and my liver enzymes improved.Some became within the normal range.I had a lot of itching but I was able to take medication for that.They induced me two weeks early just to be on the safe side.I was very conscious about not taking too much pain medication after the birth as I knew my liver would struggle to process it.As far as the tiredness, I make sure I nap when baby naps.Im the same as you in the way that I want to have the babies while I'm still healthy and fit.I keep away from high fatty foods as I notice when I eat these I tend to get very tired and just feel crappy!Im not sure about the whole struggling to conceive linking to PSC.I had a miscarriage with our first pregnancy but that's how they found the PSC.As long as you are monitored closely there should be no reason why you can't have a normal and healthy pregnancy.
Bec(NZ)
12

Thanks Bec. We’re still at the Children’s Hospital - dealing with very good people there - but my daughter will have to finish there when she’s 18. I gather we then move on to the Austin (not that awkward - my wife works there - well, at the Mercy next door, and we live out near Hurstbridge)Not sure who we’ll be seeing - maybe this Gow person?

Don’t really like talking about my daughter in a public forum, but she’s really been through the wringer with this illness - after 7 years of pain and suffering, last year she finally got a transplant, which I must admit, we hoped would be the end of it, but the troubles continue. Kind of heart breaking.

As the others have said, from what we have been told, child birth isn’t a problem. But PSC, from what I’ve seen, is progressive, so if I were in your position, as some of the others have said, I’d try not to put it off for too long. Parenting is a hard enough job on its own without being burdened by PSC.

By the way, what sort of writing do you do? (I ask because I’m a writer myself - convenient, I suppose, because you don’t have to go far to get to work, but actually its a lot more time-consuming than most jobs. If I were a new parent, I’d probably have haiku as my genre of choice.)

Best wishes

Adrian

13

The Austin was good - I think there were a couple of doctors working there, but Gow was good. They're very busy with their liver clinics however. You take a number and sometimes they're like, "Next!"

So sorry to hear about your daughter's troubles continuing. Best of luck with her. With her troubles continuing, did the transplant not take well, or has the disease returned? I'm starting to see mention of that a bit, which is yikes. I was hoping once you get a transplant it's all system's go again. Sigh.

As to writing, I write mainly paranormal romance and Urban Fantasy. And LOL, yes, it is very time-consuming! Live it, breathe it, dream it... But I love working from home and it should help me in the future.

Cheers,

Bec



Adrian said:

Thanks Bec. We're still at the Children's Hospital - dealing with very good people there - but my daughter will have to finish there when she's 18. I gather we then move on to the Austin (not that awkward - my wife works there - well, at the Mercy next door, and we live out near Hurstbridge)Not sure who we'll be seeing - maybe this Gow person?

Don't really like talking about my daughter in a public forum, but she's really been through the wringer with this illness - after 7 years of pain and suffering, last year she finally got a transplant, which I must admit, we hoped would be the end of it, but the troubles continue. Kind of heart breaking.

As the others have said, from what we have been told, child birth isn't a problem. But PSC, from what I've seen, is progressive, so if I were in your position, as some of the others have said, I'd try not to put it off for too long. Parenting is a hard enough job on its own without being burdened by PSC.

By the way, what sort of writing do you do? (I ask because I'm a writer myself - convenient, I suppose, because you don't have to go far to get to work, but actually its a lot more time-consuming than most jobs. If I were a new parent, I'd probably have haiku as my genre of choice.)

Best wishes

Adrian
14

I had 2 children before the diagnosis and 1 after and while I was pregnant my labs normalized! I had no symptoms during my pregnancy.

15

Good afternoon Bec!!! I was diagnosed just a little over a year ago, and only because random blood work, showed something serious gong on with my liver. Went to a specialist near where I live, tests were performed and literally the day before I was scheduled to go to Thailand on a short term missions trip, I got the diagnosis of PSC. My first thought was, I must cancel this trip. My Dr actually encouraged me to go while I am still at an early stage with this disease. To continue with my life the best I can, while I still felt ok for the most part. I did end up going to Thailand, and am so glad that I did. I guess I would say to you, to do the best that you can and enjoy your life as much as possible. A year later, my disease is stable (still at stage one) but I am learning to take care of myself, rest when the fatigue hits, be happy and stay positive and trust in God. I wish I could help you with the Children part, my two girls are grown, so I am past that stage. Please continue to seek the answers you are looking for. Blessings to you, I wish you all the best