PBC Foundation
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20 Days post transplant

Hi a!l, just thought I'd give you all an update on my progress, firstly I am feeling really good had all my staples out now so the area is less tender. I had my second clinic appointment yesterday and liver and kidney function in Drs words are perfect.

No itch is the biggest thing to get my head around, its amazing but still worried every time I get the slightest odd feeling but then realise its just a tickle which is normal but still hesitate to scratch in case I start something off!. I guess after itching for over 10 years it will take some getting used to.

Had a bit of a blip last weekend, spent Fri till Sunday in hospital, I had a terrible headache that just wouldn't go, anyway to cut a long story short it was found my white blood cell count was high so immunosuppressants were changed steroids were upped and I am now back on the road to recovery. I am walking better and further each day with little discomfort, you've just got to read your own body and realise that you do get tired really quickly and not to overdo it.

I hope you are all keeping as well as you can be.

Debbie. Xxxx

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Sounds like you doing good, I got a little finicky at every twinge I had but it's normal. Just relax and enjoy the rest of your life, no skateboarding for at least three months....lol

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Hi Brumi. Are you still good with yur transplant? Was it you that said you still get the itch and still have to take medication for pbc cause it didn't go away with transplant. I get so many stories confused now. Anyway hope yur having a great day.

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Hi, yes I still have the itch but I have a pancreas problem as well. Unless you have read some of my last post there was another problem caused when the surgeon branded his initials on my new liver. I was itch free for about 8 months but a few bile ducts got damaged hence the itch, I refuse to let it get me down. Otherwise I feel good , I am now 4years post transplant and happy to be still alive. Because I have the itch back does not mean you will get it back so enjoy being relieved of it. I wish you a long and happy life, I will always be here to chat to everyone...

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I always read yur post. There's just so many new people lately. I'm afraid of the itch the way that it's described to me. I hope that you're not in to much discomfort. I hate what we have to go through.

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The itch is not a major problem to me, the way I look at it is it will not harm me it's just a bit of inconvenience but as long as I can scratch that's ok. My original problem was a autoimmune disease called ig4G which affected my liver. I live an active life ( growing old disgracefully ) so I'm happy enough a partner who I was with for 30yrs decided she did not want to become a carer so she left. I don't need a carer so why she went who knows, as I said I'm happy. I would guess you will not get the itch back.

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I just heard of ig4g. That is when the disease moved real fast right. Well yur partner made a mistake letting you go. You're awesome to talk to. I can tell that you're a good listener and you understand. We have to keep moving. At least that's my plan. It is what it is.

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As the saying goes I don't have a bad bone in my body. I smile a lot and love meeting people and if I can help anyone I will. If you don't mind me asking what part of America are you in. You can send that as a pm. I had an American lady friend once she had a liver transplant and was from Seattle.

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I'm in central Florida. I was in California the past 18 years. I cried when I had to move back to Fl.

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Sorry about being nosy, I have been to America a few times. It's 1:47 am here. I live in a city called Birmingham . Apart from a airport less then 400 yards away , my house has a country park at the end of the garden I like it here. This is my email if you ever want to chat. gordonbrown46@Yahoo.com of course I understand you may be Madrid as you say we both know what we have been through so it easier to chat.

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Hi Brummi, what is ig4G? do you mean IgG4? My liver doctor ordered igG4 but I have not heard back from him.

Do you mind I ask what kind of pancreas problem do you have? How was it diagnosed? I have elevated lipase (double the normal), and amylase plus slightly elevated CA 19-9.

normal AST, ALT and ALP. I went to 3 doctors and non of them is concerned.

I do have multiple joint pain and stiffness. Come and go itchiness.

Thanks,

Jane

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Sorry about the delay in replying, it is systemic disease and a part of autoimmune group. If caught early it can be treated. In my case I had had it for years with no symptoms . Please remember I am not a doctor , I can only tell what happend to me. In the end it affected my liver and speeded my PBC up..

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Thanks Brummi. My doctor just ordered IgG4 test for me. We'll find out.

Thanks,

Jane

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Hi, you will be ok, the Doctors will see right. I don't have any major problems and live a normal life. Hopefully you will be feel the same.

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Scratty keep us posted. Did you have pbc or aih. Are you cured now

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So glad everything is going well for you. Long may it last 😃

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Hi scratty

great news, keep well.

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Scratty. I am overjoyed for joy. Must be wonderful to be itch free. So so happy for you. Keep us updated. We can do with positive news

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Wow congrats

Please continue to update us all

Your story is so inspirational and gives me great belief

I am rooting for your every step

And sending good vibes daily

Thank you for sharing your experience

I'd really like to know what stage you were prior to transplant also if that's not too intrusive ..

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Hi not intrusive at all, to tell you the truth I never got staged, I just deteriorated over a period of 11 years, I had the dreaded itch joint pain, sjorgrens and mild fatigue, the itch being the main symptom. Over this period of time I had every lotion potion and treatment they could throw at me even did medical trials but to no avail over the last year I have had nasal biliary drains fitted to drain away the bile which is very effective but not ideal having a tube up your nose for months at a time.

I was listed in January this year and was told I could be waiting for up to 2 years, lucky for me it was only 5 months.

Apart from falling down stairs this morning and scaring myself half to death thinking I'd done something awful to my internal stitches I've had quite a good day, the discomfort is getting less and less every day and I'm feeling really positive.

Spoke to liver co ordinators re the fall and they assured me it would take an awful lot to dislodge the stitches. Just got a bit of a bruised back.

Thank you for your good wishes and support it means a lot.

Debbie.

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Rest well and enjoy your new liver! Some of the things modern can do are amazing.

Pam

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Thank you did sharing x

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Meant for sharing 🙄

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