Hope you are all as well as you can be. Just a really quick one from me about Bilirubin ( I say quick, a rant more like 😂) It’s been a year and my levels are not dropping as quickly and still higher then doctors have expected, I do have portal hypertension but if anything that has calmed down firstly is this common for levels to stagnate? I’m doing everything in line with what I should do and not do but slowly finding I’m getting more deflated.
Now to the rant ( I apologise about this but I have to put it out there)
so my eyes had gave gone down to the point of what could be classed as looking normal, my doctors, friends and family have also agreed , I’m aware due to what I mentioned above I’m not going to have bright whites like I used to and At the start of the process I did resemble an extra from the Simpson’s with emojis looking more like selfies ... so yes very yellow . on one of my very rare ventures out yesterday ( and on my own - bad idea) I had a couple of comments from strangers and outright questions which took me off guard. well after getting home and thinking about it , it started to wind me up and started to upset me more than I thought it would .I’ve been fuming almost all night was it out of order for these comments or am I being too overly sensitive? Flippent comments from people that in fairness probably don’t realise the situation wash off my back but being questioned directly really made me think who the F are you? A doctor? Like the majority on here I am dealing with a lot of symptoms that make you a) feel like s**t and b) look like s**t every day so when you muster up the sanity and strength to go out and then have a complete stranger you interact with ask you or even worse tell you, oh so you have cirrhosis or liver problems At the checkout more than once I was wow! Due to my previous jobs I have got a very thick skin and a comeback Queen in Responses but due to tiredness I just looked blankly back as I really did not know how to respond. what gives them the right and secondly in a public place in front of other people to mention something that is obviously private and sensitive! I just don’t know if I should have said something to them even if it meant returning?
Anyway rant over... and breathe
Well Wishing you all a bright sunny bank holiday x
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Jjp80
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Glad you’re on the mend - I never understand how insensitive people are- if they had a dose of it they might think a bit different.
Hi Jip.
While I can understand your anger at what you feel is rudeness by the public, we now live in a society where we are encouraged to speak openly about our problems and illnesses. Be it about breast cancer, testicular cancer, mental health or how did you lose your legs etc etc. Going back 45 + years when I was a child, it was perfectly normal and acceptable for folk to see a disabled person in a wheelchair, look the other way and whisper behind theirhands to each other. That's just the way it was back then.
Even as recently as 8 years ago while walking around Tescos with my visibly very sick husband, people would stare at him til I caught their eye then look away. Even people we know wouldn't dare to mention the jaundiced skin or ask about his alcohol addiction. I used to wonder why don't you ask? Show an interest? Or show you care?
If they had asked I would have told them.... this is what alcohol can do to you and he probably doesn't have long to live. Then maybe just maybe a few less people would have headed towards the vodka and cider on the shelves and people on this forum wouldn't be struggling, not only to beat their addictions and illnesses but to raise awareness of the damage alcohol can do and where families living with them can get help.
So please don't think the public are being rude when they ask. Welcome it regardless of how you came to have your cirrhosis, they are showing a genuine interest and want to care. But the general feeling out there is one of confusion. Should we ask? Should we ignore it? Will we ever get it right?
Thank you for your reply. I can fully understand people’s curiosty I had this particularly with my father before he passed , when I mentioned he had PSP each time it more than likely kickstarted a google search on their behalf and generated more awareness of the disease. Just one of those emotional days!
That has to be so frustrating. I don't care for anyone inquiring about my health- what are they? My frickin' doctor?! Anyway, 2 nurses at my hepatologists office asked when I was due, and* boy or a girl?? I have Ascites. Duh. Sure, they were from a third-world country, but they are nurses!! This is one of the many reasons I pursue homeopathic medicine.
Me too.... before my transplant 15 months ago I was also ask - when is the due date? And are you pregnant ? 🙄Clearly not, I'm 51 yrs old. It bothered me a lot ... samething. never replied.
Thank you for asking, I'm doing the best I can everyday. It truly is every day. I am so thankful for my gift of life. I am also so grateful that I have not had any rejection issues so far. Oh yes, medication side effects and PTSD - I was in the hospital with liver failure and kidney failure and honestly if I did not receive my gift of life when I did I do not believe I could have lasted another week. I was on a feeding tube, lost all muscle and could not move, could not speak and had HE very bad. Once I had my transplant I had to learn to walk again and eat again - BUT I did a little bit everyday. I kept moving forward and that is what I do everyday. Oh yes there are bad days - it's ok but I keep moving forward. There is always HOPE!
Be well and I wish you all the best. Be well my friend 🌸
Fantastc news ! .. so glad to hear things are going well.
You had a very tough time didnt you.😐.but thanks god you received the gift .. one of the most treasured by us all .
Thank you for your reply. I am not on any transplant list as yet due to my meld score not high enough . Keep on doing what your doing .😉. My best wishes to you and take care .💐
Thank you for your lovely words.... It's hard waiting I know. Meld scores are taken into account along with other medical factors. I'm in Canada and I went immediately to the top of the list with a meld score of 38 and at one point 41. My husband was so happy that I was at the top of the list but you still have to wait for the blood match and I'm A positive. Then the organ being well enough for transplant. As I said I am extremely grateful. I guess I want to say to you keep strong as you are doing. Surround yourself with loved ones. Continue to have hope and dreams. I wish you nothing but positive energy. I'm here if you need me .... Please ask any questions you may have and if I have an answer I will be happy to share. Be well and you are in my thoughts 🌺
Your most welcome. 💐. My meld score is 41, but not high enough in the uk .has to be 49 and over, but i suppose it depends on other factors too, im really not that sure to be honest.
Today i am having a very bad nausea day. 🤮 it's awful when i get this as even smells trigger it off . Hope your having a good day. Thank you for your kind reply and yes i will take you up on the offer of a chat when needed. Best wishes..linda .❣
This is why I find this site a comfort ! I’m so glad I’m not the only one that’s had the whole pregnant presumption too. I could take that one, it was my partner that didn’t get used to it for a while !!
It can be unnerving when people are so direct, but I see it as an opportunity to educate people regarding a very serious illness. As Laura009 said, many years ago, people stared and whispered. I feel it's better if people have the guts to speak to me directly, perhaps they'll learn something. However, I do realise that how we react can be very different depending on how we're feeling at the time. When I was first diagnosed (with a rare liver disease) my neighbours noticed my jaundice, but didn't say anything (and they were in the medical profession). I wish they had said something to me, but everyone has their own comfort levels. I have been shocked at the level of ignorance within the medical profession, but if I don't explain, then they'll never be any the wiser.
Sometimes, I take the approach, they were rude, but I'll never see them again and move on. We must all find our own level of comfort and accept that even those who care about us will make insensitive comments.
I do hope that you are having a better weekend, especially now the weather is better, and wish you all the best for improved future health
Yes my weekend has been otherwise great, I hope yours has too. I’m usually ok with the comments or looks I just put it down to one of those days, illness or not I guess we all have them!
How rude ! and he stupidity of some people is unbelievable. They are without a filter and a heart. I can't imagine this happeneing to me unless it's a kid saying something. Having questons. Still, their parent should have taught them . I was at one time down to 77lbs, had super yellow eyes and my skin was really a glowing orange. I never got a comments about it. What I really want to say here is that it will go away. At least it did for me once I got my system cleaned out. You're doing well and that's all that matters.
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Slightly yellow eyes? 
Are my eyes yellow? Or is it just me feeling so?
Hello strangers!
