A letter from Terry (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi Folks, sorry it's been a while...

I received this email to my web-site a couple of days ago and I thought I'd publish it (thanks Terry) and my reply to it - it says a lot ..... Ian


Hello Ian,

I too am a liver recipient. Mine was given in October 2008 because I was suffering from end stage cirrhosis. I was ill for three years prior to the operation and very ill indeed for the last three months. As I live on Grand Cayman, my procedure was carried out in the US at Broward Hospital, Fort Lauderdale, Florida.

Hearing of your progress brings back many memories. You seem to be making much faster progress than I did. 3½ weeks after my operation I was in the Respiratory Care Unit (a "Step Down" Unit, half way between Intensive Care and the ward), having spent over two weeks in I C first. Then it was three weeks up on the ward and finally six weeks in rehab.

Now, nearly eighteen months later, I am wonderfully well and happy. I take 1 and then 2 prograf alternately every morning (10 or 11 a week). I take one dapsone ever Monday and that's it.

Just before the transplant I was taking over 50 pills a day!

I also have felt the urge to write. I have started a blog that contains stories and episodes from my life. As I came so near to death - one or two weeks - I am putting in writing some of my memories. There's nothing about my medical experiences yet but I am sure that one day they will appear.

I suffered from, "ICU Psychosis" after the op and had many hallucinations but no nightmares. I confidently told my wife one day that one of my nurses was Gwyneth Paltrow. That surprised her but when Gwynneth appeared, I coughed and nodded at her. After Gwyneth had gone I asked Caroline what she thought. "That's not her," she said. "She is black but Gwyneth Paltrow is white."

"Not when she's nursing," I snapped.

Keep going. My thoughts are with you.

Terry.
 
And my reply...
 
Hi Terry,

Thanks for your e-mail, I've got to say it was the most inspiring message I have had in a long time.

As you can probably tell from my blog site, I haven't posted for quite some time. This has been due mainly to the fact that whilst struggling to recover from my transplant, I haven't had either the energy nor the inclination to write.

I always thought that following the transplant that I would go home from hospital and just keep getting better and better. I know now that this is not the case. I find in some cases you have good days and bad days, but more often you have bad days and worse days. That being said I feel physically as though I have progressed comparatively more quickly than most. However psychologically and emotionally I have found my recovery to be a complete roller-coaster.

I know that after only seven weeks or so after my op that my doctors etc are very pleased with my progress however I tend to feel whilst I am alive, I am not really living. So after reading your story of how long it took you to recover I realise that I am being far too impatient. Sometimes hearing stories about you and Gwyneth are all you need to realise it. A good laugh is always the best tonic.

Please write me back and let me know your blog address, I would love to catch up with you and find out how you're getting on and I hope you don't mind but I am publishing this letter on my site as a precursor to my return to writing and hopefully some more video diaries. This could be difficult as my little boy dropped my camera the other day and smashed it to pieces! Nevermind, I've still got my web cam.

Thanks again Terry and please give my love to your very understanding wife and to Gwyneth if you see her again in whatever guise. I read my e-mail to my wife and it made her laugh so much probably because she related to it so much more than I - God knows what she's had to put up with!

Speak to you again soon and keep well.... Ian

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