Thought I'd go for a little humour on my post given this hot weather 🌞
I've just come back from holiday and never really one to tan easily. It was very hot and I stayed most of the time under the shade but have still returned with an amazing tan!
I know from reading some recent posts, this will be due to my high bilirubin (last reading 144) which was at 177 in April.
It makes a change to people saying to me "oh you look a bit yellow" to "wow, look at your tan".
Still not a good look with jaundiced yellow eyes and a tan but the sunglasses help 😎
Has anyone else experienced a lovely tan hiding the yellow skin look?
Due to exchange/complete on house soon. See consultant now once a month at Royal Free and after their decision that I need a liver transplant once I move, I will be active on the list sometime in August.
Lots of side pain and seem to be tiring easy but still managing to cope with daily life of being a mum, wife and packing for our move.
Love and support to everyone and I'll post again once activated on list where I will be reaching out to my "Liver family" on here.
Nicki 💞
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I class it as my undercoat! I am rocking a decent tan, it's only when I pull my sleeve up it reveals my minion skin!
My bilirubin was 211 a couple of weeks back, have bloods die on Monday and expecting it to have risen again. I was a steady 50-60 but things have gone south!
I am awaiting my assessment for priority liver transplant at Kings. The last few days have been better, and similar to you with chest pain etc.
I watched a YouTube video earlier about bilirubin, helps explain some of the results on the blood tests.
Hope the move goes to plan as well as well as your transplant.
I was peaking at 60-75 with my bilirubin for past 4 years and my consultant said I was "static" but it's just going higher and higher now which is having a bad effect on my health.
I kid myself thinking I'm healthier than I am as I have the energy and then BANG I'm completely wiped out on the sofa with pain to the right hand side.
It's all happened really quickly with me from assessments, the decision to list me and I feel really uneducated about the procedure and recovery.
I found this forum at the right time. Not only is everyone hugely supportive - it's REAL people who understand what we are all going through at each stage. Whether it's a personal experience or a family relative or friend who have experienced the liver transplant journey.
I like your reference to a minion. I tell my family and friends, I feel like a banana when people tell me I look yellow 🍌
Let us all know how you get on and good luck to you too X
This is so spooky, I was 50-60 for about 3 years then the same! I was able to life a pretty normal life apart from eating so much food, apart from all the naughty things.
Then 'whammy' priority listing ahoy, levels all gone turbo and a tango tan!
So your north London hospital crew and I am in da south side massive! If you tell me your blood group O, then there is going to be a fight! Only kidding.
I haven't had quite that level of pain for a while, about 3 weeks ago it was horrible, but appears to have eased, the calm before the storm no doubt.
I live in Essex but moving to Suffolk. All my care for PBC since diagnosed in 2007 was in Essex and my consultant of 7 years works closely with my new consultant at RF. All decided easier for me to stay under RF and team.
I'm taking things one appt at a time as I have for past 9 years. It helps me to try not to let the brain race with worry.
My liver isn't happy and I know I'm not going to get any better without transplant. Keep positive. X
Hi everyone. Just reading about your jaundiced skin and my does it bring back memories. I was jaundiced for a few weeks before even realising that was a problem. I didn't have a long term illness and I didn't even know adults become jaundiced. Anyway, Google helped me and made me go to the GP otherwise I was walking around like a minion with underlying liver failure symptoms thinking it was gastritis like the doctor diagnosed!
Aww gland you had a fab hoilday. And your be on this list soon. I hope you don't mind me asking but where did you get your travel insurance from well. I am 8 1/2 yeas tranplant. My bloods and biosy showing slite rejection. And I can't find travel insurance X. Thanks. Sorry I new to this web page xx Helena
As I was not on a transplant list at the time of going on holiday, or had a transplant etc - I found it easy to get insurance through Tesco. I declared my PBC as I always do and they made a note on file that I had assessments (but as they were outpatient appointments and no hospital stays that made it easier too).
I also got a "fit to fly" letter from my consultant to cover me too. If you put in search on this forum travel insurance, I know there are a few links and personal experiences).
Welcome to the forum and good to hear how long ago you have had your transplant and apart from slight rejection - doing well. Nicki x
PCB and what I have seem to have very similar symptoms, I guess because they are principley doing the same thing in restricting the flow of bile.
What I find helps me is a product called florodix, its an all natural tonic high in iron, I have been taking this for years and feel its helps, it may be worth a try, you can get a small bottle for £6-7 just to try it, I buy it in bulk nowadays.
I also eat very regularly, I'll often try to eat every 2-3 hours which in my mind gives my body the chance to absorb a more regular dose of energy, this tends to be simple foods like cereals/toast/porridge.
I tend to find when I'm feeling low I crave appointments, but when I'm feeling better I'm less bothered by them, I hate feeling like a patient just waiting for the next test/appointment I find it gets in my head and ruins everything else. At the beginning of the week I was desperate for my assessment to be listed, but have gone full circle since then and am in a place where it will happen when it happens, if I fall ill before hand they will do someone about it, I will not let this overtake my life, its not how I'm programmed.
I totally agree that having too many appointments gets in your head and ruins everything else ! It's just so difficult not to let that happen .... So glad that you are working on it and successful !
Like you, Im trying to stay positive and focus on each appointment. I know Im on the radar and although not listed yet, the liver transplant co-ordinator called me today for catch up how I am and if I know my move date yet. I know my listing is getting closer and not sure how Im feeling.
Naturally scared, a light at the end of the tunnel to have my operation etc. so many people have told me how fab I will feel afterwards when recovered and that I will look back to now and realise how poorly I actually am!!!
Its summer time I miss the odd glass of wine but have not drank for years as I feel with PBC being an autoimmune disease - I try and help my liver as much as I can.
I have found over the years some good non alcoholic wines that taste ok.
I did the same. Covered my jaundice with a mega tan, and shades. I was so dark that after transplant one of the Asian nurses asked me if I spoke Hindi.
Make the most of your tans folks because after transplant you probably won't be sunbathing again because of the immuno suppressants.
Was informed by surgeon at assessments about the cancer risks due to cells in body and lower immune system and the immune suppressants.
Im not a massive sun worshipper anyway so it won't bother me being in the shade. A happy and healthy liver is precious and Ill do everything I can to look after it xxx
Apparently I was never jaundiced but - when I look back on pictures of myself in hospital - I think I looked a bit yellow. Perhaps they weren't concerned because my eyes weren't affected?
I never go in the sun. Because of my colouring (and a very unhealthy dose of atopic syndrome) I'd very quickly become a pile of ash! (Honestly not a vampire though lol)
Wishing you all the best concerning the house move and transplant.
Not sure of your getting me confused with a different post as I am Nicki.
I have not drank any alcohol for years. I got diagnosed with PBC aged 31 (I'm now 41) and was never really a big drinker in my 20's either.
If I feel I want something special to drink, I go for non alcoholic wines and on holiday had the most amazing cocktail which was a "punch less Pina colada" and it was gorgeous.
I try and stay positive about my PBC although it does get me down.
Trying to get my head around new chapter of my life with liver transplant waiting list soon too
I have found a variety of gorgeous drinks now. I've bought a juicer and use fresh fruit. It is heavenly! ☺ A good refreshing drink I have found is sliced cucumber and sliced lemon in filtered water, left overnight and the taste is so good on my palate 👍
Yesteray I made raspberry, blueberry and red grape juice with filtered ice cubes. It lasted me most of the afternoon.
Nice one for staying abstinent. Nice to tak to you.
Hi White-feather I'm still fighting the good fight. My husband helps me control my intake now. I'm moving slowly but surely back to elderflower cordial and my beloved Chinese loose-leaf tea, and have been on the hunt for guava juice - which I love but seems to be available absolutely nowhere these days! I did have a dose of what I thought was ascites, but I dehydrate very quickly in this weather and I realised that I'd been sweating faster than I'd been taking fluid in, so I chugged water for two days straight and that's gone now.
I wish I could stop dead, but sadly the warnings I was given concerning my epilepsy turn out to be true (three days dry and had a really nasty seizure - the worst I've had in a long time). There's no point wishing stress hadn't knocked me off the wagon because what's done is done, but there's every point in starting over to rebuild what I'd previously achieved
I used to go pink before with hardly any tan before this holiday. Enjoying the compliments from family and friends from my Dubai tan but they still mention the yellow eyes!!! bless them. x
Haha. That's hilarious. My bilirubin sits about 60 so not noticible yellow eyes but constantly having comments about my tan.. I started off explaining it was prob a touch of jaundice but now just say thanks 😌😊💕
my eyes are bad and Ive lost so much confidence when I make eye contact with people. I actually went to claire accessories and bought some £6 clear lens glasses to hide the eyes and it helps me feel bit better about myself too x
I wouldn't say Im coping Pat, I just try to deal with one thing at a time. Im a nervous wreck about the operation etc as Im sure everyone is and was army stage. I have to be positive and my family and friends are amazing as too is this awesome site x
I agree with you that this is an awesome site and I'm so happy that you have a lot of family and friends support... it makes all the difference in the world!
well I know that when I had jaundice nine years ago when I first met my boyfriend,he told me that when he first met me, that he thought I was part asian because of the yellow eyes and skin.I am part mexican so I too had the yellow tan look but then, I had no idea that I was sick
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