Been reading for 6 months...

[Will3]

So I thought it was time for me to post.

Recovering alcoholic diagnosed with cirrhosis in September then spent 3 weeks in hospital. Sent home then back in January unable to breathe as I had developed Hepatopulmonary Syndrome (HPS). Transferred to Addenbrookes for a 5 day assessment got put on the list and was transplanted 2 days later, I'm guessing I was very much 'on my last legs'. I count myself very lucky and will forever be indebted to my donors family and the staff who looked after me. I had 6 days in ICU then 2 weeks on the ward then 1 week at my local hospital, that was 3 months ago.

This is a fantastic community and I have learned so much reading all your stories here. Hope everyone on the list gets their turn soon and all those transplanted enjoy tomorrow as much as me.

Will.

[Barnetaccounts]

Welcome Will, I am so happy you got what was needed just in time. I too am a recovering alcoholic coming up to 16 years clean and sober, and am wondering how long have you been clean but more importantly how did you manage to “put the plug in the jug”.

Ray

[Will3 in reply to Barnetaccounts]

Hi Ray

16 years is a fantastic achievement, I'm only 9 months in and diagnosis was the final nail in the coffin for me.

Over the last 10 years I quit twice for 6 months at a time but made the classic mistake of thinking that I was cured and could just become a social drinker, didn't end well. When others at AA told me to "play the tape forward" I never understood what they meant, I do now.

Thanks for the welcome

Will

[Barnetaccounts in reply to Will3]

Will, I am a committed member of the fellowship. It was the best thing I have ever done. When they diagnosed me with NASH and tried to convince me alcohol didn’t play any part in my Cirrhosis, I literally burst out laughingstock told them impossible. Yes I hadn’t had a drink for about 11 years but come on keep it real.

Stay in touch and stay safe.

Ray

[Hidden]

Do you miss drinking? I don't think I ever had a drinking problem but God do I get cravings sometimes for a cocktail when on holiday or a cold beer on a hot summer day...

[Will3 in reply to Hidden]

Funnily enough I read back through your old posts today and nearly replied to your message about this !

I do think about it every day, some days more than others. I don’t really miss it though because my life was so chaotic before, i’m 50 soon so all my friends are having their 50th parties at the moment and I miss not being able to join in but I know where it will end up.

Hope your keeping well, the scar is healing up nicely 👍🏻

[Hidden in reply to Will3]

Thanks mate, hope you're recovering well. Don't worry if you don't feel 100% yet, it takes time. I was having aches and pains for over a year post transplant. You'll get there!

Ironically it's probably easier for an ex alcoholic to quit drinking once for all due to the misery it can cause. My memories with it are generally really good, that's why I'm finding it so hard to put it behind me. Anyway watching my kids grow up gives me much more pleasure than alcohol ever could.

[john110865]

Hi Will

Just saw you had HPS, I was diagnosed with it in early 2018, got on the list in August and am waiting, hoping … you got a LT in 2 days!? wow, it must have been serious. Glad you pulled through and are enjoying life again! Can you recall how the HPS advanced for you? I read most patients with HPS have had it for a median of 4.8 years. I can recall being short of breath at times over the past 5-10 years, but was only started on oxygen therapy in December 2017. Now I cannot do without it, cannot really get out and about, but I am coping. Do you recall getting worse O2 wise or where you not aware of any oxygen issues? Any symptoms / timelines?

I got a pile of questions, but I will await a response to this before sending - don't want to nag you!. Keep Well. John.

[Will3 in reply to john110865]

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[Will3]

Hi John, it all happened very quick for me, I was diagnosed cirrhosis in September and discharged after 4 weeks then had to get an ambulance back in early January struggling to breathe. I was diagnosed with HPS and remained in hospital on oxygen until transplanted on Feb 28th. I no longer need oxygen but I am still being seen by respiratory. There is a thread here about it

healthunlocked.com/britishl...

Please get in touch if you have any further questions and hopefully my experience can help.

All the best

Will

[Will3 in reply to Will3]

I was on full flow 40 litres per minute at times, don’t miss that !

[john110865 in reply to Will3]

Amazing, you got seen so quickly. They changed the system so now it is not up to the hospital who gets seen necessarily. There is off course the super urgent list, which I guess you would have been on now. Good to know you made it through and the HPS is gone, that is encouraging. Any other issues you had? I got a blocked portal vein as well and reverse flow. My cirrhosis was also only diagnosed a year ago.

40L / min, wow, that must blow your head off!!! When did they give you that? After the LT or during? or before?? That is crazy high! Any side effects? any nose left or did you have a mask (I guess so).

As I said, a zillion questions, lets leave on here so others can also learn?

Appreciate anything you can tell me - fore warned is fore armed as they say!

John.

[Will3 in reply to john110865]

Hi John,

I had a face mask with a 1.5” flexible tube attached in the couple of weeks leading up to transplant and during assessment, I also had a nebuliser every 4 hours which pumped a vapour into my lungs for about 15 minute, sorry i’m not a medical person so I can’t expand further. The mask wasn’t that bad, a very dry mouth and almost impossible to sleep in but that’s about it, it was attached to the wall and I had portable bottles connected when I got taken anywhere in a wheelchair. I was told my HPS was very aggressive and that it is very rare. I’m guessing that’s why I was assessed and transplanted so quickly, i’m very lucky. I also had the usual bits that come with cirrhosis - ascities drained twice, varicose banded, oedema and HE but mine was a very different experience as it was all so quick from initial diagnosis to transplant in just 6 months.

Wishing you all the best

Will

[john110865 in reply to Will3]

Will

Thanks again for the reply. All these snippets of information are helpful. My HPS is starting to get worse, almost weekly now, but so far I am strong. No Ascities or Oedema thus far, my feet do swell but only when I sit too long. HE? is that the mad cow thing - lol - sorry one has to laugh or one goes mad!

Yuk, would not want a tube that big OR want to feel dry all the time. Not sleeping is horrible, thank-fully as an ex boy sprout, I was used to sleeping anywhere and frequently rolled out the tent landing up 10m away sleeping on the soil, so with any luck I can sleep...

Keep well matey. Have a great Sunday! Are you in any fantasy football leagues? Some big matches today. My captain is Hazard - hope he plays at least! J.