6months: Hi all Well it’s 6 months now... - British Liver Trust

British Liver Trust

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6months

1football profile image
11 Replies

Hi all

Well it’s 6 months now since i was lucky enough to of had my transplant and not a day goes by that I don’t think of my wonderful donor and his family.

I’ve been very fortunate in that I started back at work after 3months albeit on a phased back but I’ve been full time for last 5 weeks for me personally I’d say the hardest part of this journey has been the medication after as it really hit me hard but over time they lower in strength and the body gets used to them am on 4mg of Tacrolimus and 2g of mycophenolate daily along with a few other tablets .to all of you waiting for a transplant keep your head up and believe because that call will come although it’s hard I know

Huw

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11 Replies

Hello 1football,

While since we spoke, your the person who got put under before the rug was pulled!

So pleased that you are making such good progress and managed to get back to work, cannot have been easy, well done and good that you have a supportive employer. Looking forward to having my meds reduced, still getting a few side effects but liver tests are very positive. One precious day at a time. Now need something to do, change of direction.

1football profile image
1football in reply to

Hahaha yes the very same that seems like a lifetime ago yet it was 25 February

I have been lucky with employer as I know you havent are you going to get back to work any time soon or are you struggling as we are all very different. How are your meds now

Huw

in reply to1football

Huw,

Working is not a priority right now chose to stop, media where alcohol is part and package of the landscape. The international company own the local pub, have a brewery in New York, well people go for a drink during and after work. Plus the demographic, I have around 25 years on the average age. My overheads are significantly reduced without the bar tab. Frightening really when you add up the cost but that is all in the past.

My meds are 6 tablets a day in 4 flavours. Tacrolimus is 10mg, Mycophenate unchanged, blood tests spot on for liver function. Priority is health. Keep well and keep up updated. Still smile about you waking up in ICU, good you can see the funny side now.

It's so good to hear your getting back to normal. Still away to go yet. Your Tacrolimus meds will come down. I'm now 2-years on and I've just had mine lowered yet again as my kidneys are taking a bashing. I'm now on 2mg each morning, and 1mg at night.

You have now experienced that emotional journey and are now aware of that new special bond that you now have with your donor. Some how those simple little words, "Thank you" seem so inadequate. That donor will always be in your thoughts, every time you look at that scar, it will always make you think. Christmas and liverversaries will always be an emotional time. I'm just a stupid old sentimentalist and when these times come round, I just like to go out into the back garden and look up at the night sky and just whisper, "Thank you".

Best Wishes

6 months WOW !!! AWESOME !!!

Thank you, for your positivity, I am sending you loads of virtual hugs and good wishes back. I am waiting on the list. It is so great to hear all the awesome amazing after transplant stories. Thank you.

Take it easy and get well soon.

Jaycee

Yuiop profile image
Yuiop

Brilliant news, your future awaits you. Live it to the full x

Hi Huw,

So good to hear things are still going well for you!

Best wishes to you and yours for continued good health.

Mary

Barnetaccounts profile image
Barnetaccounts

Huw, your story is fantastic. One of hope, the realities of the struggle to normal (ish) life again. Keep us informed and watch your boys take one hell of a beating next week. I am currently sunning myself in the Carribean and shall be watching my boys today whilst in Grenada. Keep smiling.

Ray

1football profile image
1football

Thankyou all for your wonderful reply’s it means so much.

I realise that it’s still early days but didn’t think I’d be this far down the road to good health still get aches and pains across stomach muscles especially in bed and can’t sit up without knowing about it but I’ve got to be realistic am quite a big guy at 6.4 and 101 kg but was 115kg on transplant day although still 6.4 though 😆 so got the full size badge of honour but these little gripes are a small price to pay a bit of pain relief via transplant clinic at am good to go.

Life is good and i honestly believe I will be joined by you lovely people very soon.

Oh and Ray dream on pal but great result yesterday enjoy your holiday am proper green with envy.

Oh oh more good news donna and I are getting married next June we were due to marry just as my health and confidence took a knock but now it’s back on hope this puts a smile on some of your faces as we’ve all had a belly full of bad luck

Huw

Hope-feb3-2017 profile image
Hope-feb3-2017 in reply to1football

Hi Huw!!!!

I am so happy to hear your getting married!!! Congrats and how beautiful your love is with Donna. You both have been through a lot of ups and downs. This process only makes you sprititualy stronger. I'm glad you are able to go back to work so quickly. Honestly, it just takes time for your body to get use to the meds then every time you decrease the side effects go away - especially the muscle cramps, joint pain and lack of energy increases. I am almost at 2 years post (feb 3,2017) and I am now only on 1 mg tac in morning and 1 mg tac at night. All side effects have gone or greatly reduced. All text great. I'm just now dealing with my PTSD of the traumatic event leading up to and during my stay in hospital and now recovery. I have lots of support and one day at a time! I am so greatful for receiving my gift of life. Have you sent your letter to the donor family yet? You will find it very therapeutic I promise. I'm so happy for you! I remember my first post was to you and I said hope is what got me through this and still does. Let Hope Fly

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

Good luck to everyone And keep your hope strong 🕊🕊🕊

Hi

So pleased for you and it's great to hear you are getting married. You've come a long way and it gives us all hope. Take care Lynne

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