PBC Foundation
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10 Weeks post Transplant

Hi all, an update as promised and oh what a rollercoaster its been.

Firstly, roughly day 20 after feeling absolutely fine I got a phone call from my Specialist saying g my ALP was 1006 and have to be admitted straight away as this could mean either rejection or an infection, as you can imagine it was a pretty scary time. Had a scan which showed no leakage and a biopsy which diagnosed rejection! My immunosuppressant dose was raised to 7mg from 3mg and steroids raised to 20mg from 5mg. Fortunately over the next few days ALP came down and after 5 days in hospital I was allowed home with a reading of 401.

Now for the unfortunate bit!!!!! Due to the high dose of Advagraf (Immunosuppressant) I started itching!!!!! Just a !little to start with but now its like being back to square one, I'm so depressed and naturally thinking the PBC has returned but am assured by my lovely Dr that it definitely is due to the high dose, other sidethiousI'm suffering from are cramps in my hands and feet and shaking which is horrible I can't even make an instant coffee because it all ends up over the counter!!!

Anyway I am now on fortnightly visits to the post tx clinic and steroids have been lowered but still waiting for the immunosuppressants to be lowered so I can be relieved of this horrible symptom.

I'm sure I will get there soon but think its going to be a long process and can't wait to be itch free again, it was utter bliss, I continue to be in awe of those very kind and selfless people that made the most difficult decision to donate their precious sons organs to give me the the chance of a normal life, which I am fighting to get back.

Sending love and positive thoughts to you all.

Debbie.

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Congratulations and all the best deb!

So when were you diagnosed pbc and after how long you had to do tx!

ThAnk you

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Hi, I was diagnosed in 2006, suffered mainly with the itch which gradually got worse over time, tried every lotion and potion out there, even took part in two clinical trials. Eventually it was decided there was no other option for me so was listed in January this year and had tx June 22nd.

Thank you for your good wishes. Xxx

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Sending you all the very best Debbie - know your grit and determination will deliver you to good health and a wonderful life post transplant.

The very best vibes from Downunder.

Karaliz

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Thank you so much. Xxxx

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Sending hugs & prayers your way. Keep fighting

Stay strong❣️

Shannon

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thank you Shannon. Xxxx

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Hi scratty

so pleased you have had your transplant but sorry to read of the tweaks needed. I hope you continue to make good progress and will soon be itch free.

Best wishes for a speedy recovery

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Thank you. Xx

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Best wishes for a speedy recovery hugs x

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Thank you. Xx

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Thank you. X

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Thank you Debbie for your honest account of your progress. I really value this and I'm gutted for you that things have become complicated and itching is back albeit temporarily ..

You are in my daily thoughts .. sending positive vibes your way .. you suggest that things are settling down again so let's b positive for you and your family ..

Do keep the updates coming when you can 😊 ..

all my best wishes

Xx

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Thank you so much for your lovely response. Best wishes and hope you are well. Xx

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Thanks for the update. It must took a lot of effort to write this post giving the situation you are in. I am praying for you.

--Jane

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Thank you Jane. Xx

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Hi Debbie, I’m new on here but been living with pbc since 2004 at least. I’ve just come across your posts and wanted to say thanks so much for sharing your journey. I really do hope things have settled down and are going well for you. Sending my very best wishes xx

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Hi Kate, thank you for your kind thoughts. I am 4 months post transplant now and with a lot of juggling meds I am finally reaping the rewards, it seems like a long time but in the grand scheme of things I suppose in reality its not. I'm still having up days and down days but all in all I am enjoying this gift I was so selflessly given. Hope you are well and keep in touch.

Debbie. Xxxx

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Hi Debbie, really good to hear that you’re feeling better! Thanks for the kind wishes, Kate xx

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