Didn't know whether to laugh 😂 or cry 😢.......

[nickiwj]

Hi everyone,

As you know, I'm on the waiting list for my transplant. My health isn't great and due to my INR rising and a scarey bilirubin level of now 207, I'm jaundiced and quite yellow.

I posted last week about feeling down and low about coping being on the waiting list, feeling rubbish, and very down about my yellow skin.

I'm feeling a bit better this week by walking my dog, seeing friends and trying to stay upbeat and positive.

This is the thing.....I saw my brothers mother-in-law yesterday whilst visiting my little niece. Now, this lady is known for being direct with things she says but NOTHING prepared me for what she said considering I haven't seen her for a few months....

"Well I must say Nicki, you look very oriental and I'm not going to lie, you look BLOODY DREADFUL REALLY DREADFUL".

Now, friends and family do say to me "oh you look well today" or "your looking tired" or "you look a bit better/worse than last week" - these are comments I can cope with but I was so shocked by what she said that I didn't know whether to laugh or cry.

My mum was there and said to me to make light if the situation "I don't think I'll take you to see Nicki in hospital after her op" 😳

Anyway, I'm cool about the comment now and can laugh about it but the saying....... if you don't have anything nice to say, don't say anything at all springs to mind. 😂😂😂😂

Much love to you all. Nicki 💞

[AyrshireK]

My hubby hates being told how 'well' he looks when he feels absolutely dreadful - I guess some folks just don't know what to say.

At least if you are looking so ill it will show at your next TP clinic and you will be rising up that list. That's one of the reasons they want to see you in person and don't just make their listing decisions based purely on sets of blood results.

Fingers crossed for you that your wait doesn't go on too long.

Lots of love

Katie xx

[nickiwj in reply to AyrshireK]

Hi Katie,

I'm listed at Royal Free in London. I know none of us know how long the wait will be but it would sometimes be helpful if there was a way they could give you a rough idea. I know that is not possible but every month I go to my appts, I know I look worse and the blood tests are also reflecting this too.

I know many people have assessments and are borderline and don't get to go on the list after their assessment. I'm very grateful (but scared) that I will eventually be blessed to receive my precious gift of a new liver and I never ever forget that.

Hope your husband is keeping well. Much love. Nicki 💞

[AyrshireK in reply to nickiwj]

You'll get there Nicki, you are obviously poorly and your time will come. What blood type are you? At the MDT each week they will look at who's on the list and who is most in need and when that suitable liver comes in they'll look at who is the best match (blood group, body size) and then who is the most poorly that it actually suits.

We lived on the list for 10 months and then hubby got delisted so we are back to square one just being monitored. In the grand scheme of things his liver is holding its own and with normal blood results he isn't anywhere near going back on the list though he so wishes he could get some quality of life back.

We make the best of the good days.

Rooting for you.

Katie xx

[nickiwj in reply to AyrshireK]

Hi Katie, I'm O positive. Great yr husbands bloods are good but feeling poorly isn't ideal. You have to make every day a great day don't you x

[AyrshireK in reply to nickiwj]

O+ is same as my hubby, most common blood type so more donors, however, also the most demand so the longest of the lists sadly.

You'll get there though, keep looking after yourself to keep yourself fit enough for the procedure when that call comes.

All the best, Katie xx

[Katherine1962 in reply to AyrshireK]

Same problem with my husband. Oh how well you look they say and he feels terrible. Suppose they mean well 😀

[Katherine1962]

Ah least you can smile about it now. I can't believe how some people handle other people's illnesses in what or not what they say. My husband has a bronzed look which I think is down to his haemachromotosis so all he gets is blimey you look well ! They don't understand why he on the transplant list looking like that. However if they looked closely they would see he is jaundiced and looks exhausted due to not sleeping. Know exactly what you mean about being given at least a slight idea about waiting time. Hope it's not too long 😀

[nickiwj in reply to Katherine1962]

To be honest Katherine, in the summer I was a bronze glow but now more yellow. Thank goodness for thick tights, long boots and woolly jumpers and dresses so I will only really have hands and face on show rather than summer vest tops.

The winter clothes are a better option for me too as like many people seem to suffer from is the constant feeling cold all the time.

Much love and hope your husband does not have too long to wait xxxxx

[Catfishjumpin]

Please stay away from mean people. Thats cruel and callous on her part. Good luck. Whenever there is any sunshine out, go sit in it. It will improve your jaundice, light enters the eyeballs and goes directly to the liver. I hope you feel better.

[nickiwj in reply to Catfishjumpin]

Thank you catfishjumpin much love 💞

[sheri44]

awww sweetheart i had that off a few friends and relatives and after i got home from my transplant the district nurse said exactly the same. I thought Jesus thanks a lot. Then looked at her and thought I've had a transplant what's your excuse 😂😂. Had to laugh or I would have cried but it's true she was no oil painting at all. I had to cut a few people out of my life due to negative comments because at the stage i was at, I really didn't need it. Wasn't on the planet most of the time due to the toxins poisoning my brain i was sleeping 23hrs a day couldn't be bothered how i looked then just chucked leggings n tops on constantly. I knew i was yellow n full of fluid but didn't realize how bad until looked at my disability badge pics last month. I'm sure your looking good sweetheart. Ignore or laugh the ones who knock you down ❤ xxx