Considering I havent 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 http://hepcnomads.co.ukand the Hep C Friends http://hepcfriends.activeboard.com ). 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 Im currently trying to circumnavigate. They seem to have worked too, but Im 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 this virus face.
Nanakoosa ( http://nanakoosasplace.blogspot.com) 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 http://jennysliver.blogspot.com
Pixie ( http://hepcnomads.co.uk ) 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 dont 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 Pixy, 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 Pixy, 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 thats 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 Pixy
Karentaliesin from Nomads (http://hepcnomads.co.uk ) 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 dont 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 dont. 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 doesnt, if we didnt know before the story then we have the same head that doesnt 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 youre 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 whats 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 thats 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 http://ianquill.blogspot.com/search/label/Brand%20New%20MePost (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 times xx Eva
And finally Bethland 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
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
rio said
Dec 27, 2010
One year on, A Strange New World... (Hepatitis C / Liver Transplant (Hep C) HCV Blog)
Monday, 27 December 2010
On this run up to the New Year and with Christmas just behind us, as with many people, it has prompted me to sit back and take stock of the year and to cast my mind back over the highs' and lows' of 2010 and where I have got to....
In some ways this has been a truly remarkable year. Not many people I suppose can say they did so much and yet did so little at the same time. And I doubt there are many people who would've traded places with me either.
But as the log fire starts to die, worn out kids are now in bed and the Christmas tree has started to wilt and fade I feel a sense of melancholy that I'm forced to give air.
I could only remember how last year as we were doing the same thing, that I was constantly wondering if this would be the last time I would get to view this special treat. I use the word 'view' because all though I was present and joining in as best I could, I couldn't say that I was whole heartedly enjoying this Christmas 'scene' because of the turmoil which at this point was raging in my head.
All the questions lashed to their own worry that were being tossed all around my brain like pieces of a wrecked ship being battered against the rocks, constantly pushing to the front of my mind on each wave of fear and wondering if these final pieces that I had been clinging to were now bobbing around in the foam; their fate too close to danger to call.
Maybe this sounds like I'm over-dramatising but I can honestly say that this was how I felt. With hindsight, the waters were much calmer than I was reading them and my 'ship' stayed afloat. Though the HepC had just about finished off my own liver, I got the call from St Jimmy's at about eight p.m. on January 28th and the following morning I had a full Liver Transplant.
What I will say for anyone who may be facing the same treatment that I was hoping for back then, is this; the hardest part of having this kind of operation is your own state of mind beforehand. It seems easy for me now to say that I shouldn't have put myself through that worry and neither should anyone else in the same situation but I did, and others will. The operation is the easy part; it's the 'not knowing' and the 'will it happen in time' that gets' ya every time.
But those of you who followed my blog back then know that relatively speaking, once it happened, I breezed through the Op without too much difficulty and my recovery after seemed fairly speedy. Then you may also have noticed that six months or so after I seemed to drop off the radar a bit and I suppose it's this 'bit' that I'm talking about now. The 'bit' that I seem to have lost and I'm trying to get back to.
I don't know if it's because of all the pain killing opiates and steroids that you get pumped full of after the op (and I aren't complaining here) and all the other types of medication for this and for that, but for the first few months you feel like your on a natural high (though it's anything but natural). Or it could be the 'new' liver that has revitalised the 'new you' or as I suspect, a combination of both; that the first six months, barring any complications and the initial 'soreness' are nothing short of fantastic! It sounds crazy but it's true! I even wrote in 'Brand New Me' (Feb '09) that it was 'the most life enriching experience I'd ever had!'
Strong words indeed and I suppose that although I never ended up on the 'rocks' that I had been fearing a year ago, I do feel now that somehow I have ended up sort 'washed' up on the shore. I am still alive; but I'm not the person I once was. No longer the foolhardy adventurer running along on any breeze I can find, no more the captain of my own ship; all that has been washed away. The experience has left me clinging to the shore looking for a new life, fearful of what has gone behind.
I hope that in this place that I have landed I can find a new way to live. Who knows, maybe the best is yet to come and somewhere here I'll find a new 'jewel' to prize. But for now this is a strange new world that I'm learning to navigate and will be for some time to come; or at least until I learn how to come to my own rescue again.
Comments & Replies on One Year On Its the Piece it Takes Away (Hepatitis C / Liver Transplant (Hep C) HCV Blog)
Considering I havent 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 http://hepcnomads.co.uk and the Hep C Friends http://hepcfriends.activeboard.com ). 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 Im currently trying to circumnavigate. They seem to have worked too, but Im 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 this virus face.
Nanakoosa ( http://nanakoosasplace.blogspot.com) 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 http://jennysliver.blogspot.com
Pixie ( http://hepcnomads.co.uk ) 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 dont 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 Pixy, 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 Pixy, 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 thats 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 Pixy
Karentaliesin from Nomads ( http://hepcnomads.co.uk ) 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 dont 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 dont. 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 doesnt, if we didnt know before the story then we have the same head that doesnt 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 youre 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 whats 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 thats 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 http://ianquill.blogspot.com/search/label/Brand%20New%20Me 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 times xx Eva
Tina ( http://hepatitiscnewdrugs.blogspot.com ) wrote May you find your way brave Ian
And finally Bethland 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. Iani 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
Monday, 27 December 2010
On this run up to the New Year and with Christmas just behind us, as with many people, it has prompted me to sit back and take stock of the year and to cast my mind back over the highs' and lows' of 2010 and where I have got to....
In some ways this has been a truly remarkable year. Not many people I suppose can say they did so much and yet did so little at the same time. And I doubt there are many people who would've traded places with me either.
But as the log fire starts to die, worn out kids are now in bed and the Christmas tree has started to wilt and fade I feel a sense of melancholy that I'm forced to give air.
I could only remember how last year as we were doing the same thing, that I was constantly wondering if this would be the last time I would get to view this special treat. I use the word 'view' because all though I was present and joining in as best I could, I couldn't say that I was whole heartedly enjoying this Christmas 'scene' because of the turmoil which at this point was raging in my head.
All the questions lashed to their own worry that were being tossed all around my brain like pieces of a wrecked ship being battered against the rocks, constantly pushing to the front of my mind on each wave of fear and wondering if these final pieces that I had been clinging to were now bobbing around in the foam; their fate too close to danger to call.
Maybe this sounds like I'm over-dramatising but I can honestly say that this was how I felt. With hindsight, the waters were much calmer than I was reading them and my 'ship' stayed afloat. Though the HepC had just about finished off my own liver, I got the call from St Jimmy's at about eight p.m. on January 28th and the following morning I had a full Liver Transplant.
What I will say for anyone who may be facing the same treatment that I was hoping for back then, is this; the hardest part of having this kind of operation is your own state of mind beforehand. It seems easy for me now to say that I shouldn't have put myself through that worry and neither should anyone else in the same situation but I did, and others will. The operation is the easy part; it's the 'not knowing' and the 'will it happen in time' that gets' ya every time.
But those of you who followed my blog back then know that relatively speaking, once it happened, I breezed through the Op without too much difficulty and my recovery after seemed fairly speedy. Then you may also have noticed that six months or so after I seemed to drop off the radar a bit and I suppose it's this 'bit' that I'm talking about now. The 'bit' that I seem to have lost and I'm trying to get back to.
I don't know if it's because of all the pain killing opiates and steroids that you get pumped full of after the op (and I aren't complaining here) and all the other types of medication for this and for that, but for the first few months you feel like your on a natural high (though it's anything but natural). Or it could be the 'new' liver that has revitalised the 'new you' or as I suspect, a combination of both; that the first six months, barring any complications and the initial 'soreness' are nothing short of fantastic! It sounds crazy but it's true! I even wrote in 'Brand New Me' (Feb '09) that it was 'the most life enriching experience I'd ever had!'
Strong words indeed and I suppose that although I never ended up on the 'rocks' that I had been fearing a year ago, I do feel now that somehow I have ended up sort 'washed' up on the shore. I am still alive; but I'm not the person I once was. No longer the foolhardy adventurer running along on any breeze I can find, no more the captain of my own ship; all that has been washed away. The experience has left me clinging to the shore looking for a new life, fearful of what has gone behind.
I hope that in this place that I have landed I can find a new way to live. Who knows, maybe the best is yet to come and somewhere here I'll find a new 'jewel' to prize. But for now this is a strange new world that I'm learning to navigate and will be for some time to come; or at least until I learn how to come to my own rescue again.
Take care everyone.... Ian
http://ianquill.blogspot.com - Ian Quill : My World