Comments & Replies on “One Year On – It’s the Piece it Takes Away” (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Considering I haven’t written in a while, I got some great feedback from my last posting, not just direct to my blog but also by email and through Hep C Forums (such as Hep C Nomads and the Hep C Friends. It was always good to know that help is still out there when I needed it most.

I decided, unusually, to post their responses and my replies. These answers helped me sit and think about what it was that seems to be the problem that I’m currently trying to circumnavigate. They seem to have worked too, but I’m not going to jump into that now but try and express it in my next post.

Thanks to all who wrote, I hope you can throw further light on the trials & tribulations that I write about and that all those with HCV face.

Nanakoosa wrote - “Another great post. It feels like we do become so consumed within this disease, either being sick, or on treatment or waiting for a transplant that those things begin to define who we are. I like to remind myself to say I'm an unemployed Social worker, or an aspiring writer, but in the back of my mind is always the thought (or I will be after treatment). That phrase, "after treatment", or in your case "after the transplant" carries a lot of weight...and uncertainty. It seems like that's where you are now, in the great unknown where it's time to fill in the blank that follows the "after" phrase. I'm the kind of person who believes that if we keep an open heart and mind and take one day at a time, our path will eventually become clear. Problem is sometimes it takes longer than we'd like! Wishing you a Happy New Year, Jenny”

Pixie of Hep C Nomads wrote – “Thanks Ian and gives us a good insight as to the journey you have been on.....It seems not everything is clear cut regarding the HCV, even post tx members are saying they are not the same, though there are good positives stories as well as the negative.

Hope you don’t mind me asking you some things..? Do you think the "adventurer" in you has gone because of the worry of rejection once you have had a transplant; is this foremost in your mind? I know those living with the virus worry about Viral loads, those on tx just worry and post tx many say they feel different, those SVR still worry the virus might come back, it seems we are never free of the worry of it all? I am glad you are alive and kicking one year on and believe you will find the jewel your seeking...PX”

MY REPLY TO Pixie “Gosh Pixie, Hard to say, rejection yes, I suppose it is. And now that I can come forward I get the same old question of "what have you been doing with yourself the last year or so" you start by not just telling them about the transplant, it's then telling them about the hepC which casts a light on your past and so on and so on. By the time you've finished, you've knocked any kind of confidence you may have had out the window. I was saying to Nanakoosa earlier that 'I haven't hit the nail on the head' yet with this post, but this is why I write it down (&share it) to try and throw up the answers. Kind of healing and kind of exploration I suppose. Good to 'talk' with you again Pixie, take care x”

And Pixie replied - “Ian, I cant imagine the feelings a transplant would give you, I could talk till the cows come home about the overwhelming feelings of living with this virus and how it changed me, but a transplant ???...going into theatre just not knowing, waking up and you must feel fragile having a new organ that’s keeping you alive...over whelming. I just cant imagine it, your bound to feel different, I expect some people do just grab life and live it to the full? Taking everyday risks perhaps? But yes I believe your never quite the same afterwards – Pixie”

Karentaliesin from Nomads wrote “Hi Ian, Good to hear from you, and for sharing these thoughts of yours and feelings, I guess when I read it I take my own slant on it, but I throw it out for you to peruse, coming face to face with our immortality and sort of beating it we think the whole world and its wife is gonna become different, we are so focused on that, and when its all done, we find we are obviously physically different, we are not the person that we thought we would return to being, even if we have been granted far better health than before , or for many life but with extras, and somewhere we are left hunting for meaning, why am I here, what is it for, and we still don’t have answers to those questions and somehow I think in our struggles for health we somehow think we will come out of it with that knowledge, and we don’t. We are the same ole person with the same old stuff, if not a bit more thrown in from the knowledge of how fragile life is, and we know we are supposed to love it and live it, all the things escaping death we expect should give us, and it doesn’t, if we didn’t know before the story then we have the same head that doesn’t know it after!! and that can lead to a pretty dark hole for some, and after major illnesses’ it is quite common for people to lose their joy in life, (depression or hard times) our fragility is quite frightening and beyond our comprehension or even ability to control safely, adventuring becomes quite fearful, because none of us actually want our mortality to end, but neither do we know how to live it in a way that makes it seem like its got a point; so I suggest you’re having some serious questions going on inside you about the world the universe and all that jazz, the hole that need or wants filling, and how do you do that is the Question, the melancholy, why am I here, or what’s the point? Or whichever way it comes out for you: Maybe you have just become aware of the human condition because all the distractions have actually been taken away, this too shall pass, so there ya go that’s my take on it for you to think about, or play with, take care Ian, always great to hear from you, love - Karen xx”

Eva wrote (http://evaday.blogspot.com) – “Ian, That was so great to read. I have thought of you often and yes particularly during the "missing bit” you mention. Yes I actually do remember the ‘Brand New Me’ Post (though wouldn't have recalled name of it till you mentioned it again) and have found your story amazing. And bravely done and well told - which I am sure will be a great contribution to others in same boat.... I am sure you will gain good new navigation skills Ian, you seem to have inbuilt instinct for it.... very well done to you for coming through all this as you have and always good to hear from you - will look out for any updates. Wish you good health and happy time’s xx – Eva”

Tina of HCV New Drugs ( http://hepatitiscnewdrugs.blogspot.com ) wrote – “May you find your way brave Ian”


And finally Bethland at Hep C Freinds wrote – “Hi Ian, I love your stuff...I used to see you on facebook and your blog when I first started treatment. Love and Peace to you in the new world – Elizabeth”

Once again, thanks to all who commented.

Take care everyone…. Ian