All Posts (1744)

Reality T.V Show!

Well I don't want to go into too much detail just yet. This Saturday my donors mother and myself will be shooting the pilot for a t.v reality show in Hollywood. The producer of Think Tank productions is very excited about this project. I am a bit excited myself :)
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1/25/2010 ~ (Copied from my blog on TransplantBuddies)This is shaping up to be a very busy week. Often, we have very little on the calendar, but every so often we'll get hit with a variety of things all at once. But, that makes life interesting and we will go with the flow.Tomorrow is my day as a patient. I have labs, and echocardiogram, heart biopsy and visits with my transplant coordinator & transplant doc. My wife has her own "things" that she needs to deal with.Wednesday is volunteer day for me, and my wife has another full day of things that are scheduled.Thursday evening is my transplant dinner, but I have a feeling that the day will be spent in the guest room, finishing that little project.Let's hope for very little, to NO snow since I'll be driving to Cleveland 3 days in a row.Also, since I will be a "patient" tomorrow and will see my Tx coordinator, I have something I NEED to take with me. As I approach my 1,000th EXTRA day of living (2/4/2010), I have written another thank you letter and card for my donor family. It was something I felt a strong need to do. May God Bless them daily!!!Life is Good!!!!!Here's a nice DonateLife display that's right outside the main Transplant Center office complex at Cleveland Clinic.

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My Tattoo! :)

Well Today i got my Tattoo!! it has always been on my bucket list and today i went to the Tattoo Expo here in pomona,Ca.My transplant doc frowns on getting tattoos post transplant. Having said that he is also a huge advocate for living and enjoying life post transplant.I didn't tell my doc about getting my tattoo today. I will go and show him next week.I am seven years post double lung transplant. I have done a few things many other lung recipients would not choose to do. Including Scuba Diving and Volunteering in my transplant centers Lung transplant department.I had a good conversation with my young donors mother and told her of my wish to get tattoo'd. She was cool with it.My doctors biggest fear of tattoos post lung transplant is infection. The guy who did my tattoo was a real pro and used sterile equipment. He also advised me on the proper care of my tattoo.I love it and very happy i did it. I am half english and so my tattoo is of the Union Jack, which is the Brittish flag. I have it on my forearm
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Life with PKD

I lost my kidneys due to PKD in 2001 and was transplanted in 2002, living donor who is my daughter and only child. Accute rejection 6 months in and gradual chronic rejection. I am currently on a waiting list for retransplant and in end stage.My liver is covered with cysts and enlarged but functions well.On a two mg prograf every other day regime but that will change with new transplantwith a more conventional celcept, prograf and steriod protocol.Any other PKD familes out there? Our's had 4 of 5 with 3 transplants so far and one in end stage, not counting me. The one sister with no pkd donated to first of us to go.Mother died at age 52, in 1970 and was carrier for PKD.Other two transplanted sister's doing well at 9 and 4 years out.Many neices and newphews have the gene so we all hope for a cure.Transplant is a treatment for a disease, not a cure, but a gift of God and life.Phil :)
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Stories Like Mine... (

Hi Everyone, this is my latest blogpost, sorry for rambling...I was chatting with an old friend online the other day. Like a few of my friends, he had been following my blog on facebook and so was aware of my current plight. What he didn’t know about until he’d read my blog; was that I had experimented with drugs during my late teens and early twenties and that that was the probable cause of my contracting Hep C.He’d sent me a message asking how I was doing and when I thought that I might get a transplant, that kind of thing. I had given my usual answers as by now I’m used to this line of questioning. He then took me by surprise and said “You know Ian; I had no idea you were so bad when you were younger”. It knocked me ‘off-cock’ as I thought about that for a moment. I remember thinking ‘oh my God, is that what he thinks?’ Suddenly I wished that I’d never written so much about my past. I tried to answer with a kind of throw away comment “Oh, we all have our skeletons...” He replied “Jesus, Skeletons... You’ve got the whole bloody graveyard in there!”He was making light of it, but I think when he probably read about my former life it would certainly come as somewhat of a shock to him. My friend had never been into drugs and I dare say that the nearest he’d ever been to them was kicking some kids out of his pub for smoking ‘wacky backy’. I suppose it made him sit up and think about how someone he knew so well had had any kind of drug-taking history.Comparatively, my drug taking years was short lived however they were fairly intense. And during this time I would never have considered myself to be a ‘bad’ person, young and foolish maybe but never ‘bad’. Many people who start taking drugs and then get into the whole drug scene find that they then spend half their life trying to free themselves of the affliction. I on the other hand realised fairly early on that the life of a junkie was not for me.OK, before I go any further, I want to apologise in advance to anyone who knows me. What I’m about to tell you will probably shock some people and it will probably be embarrassing for my family. Not that my upbringing had any bearing on what happened during my formative years. But what I’m going to tell you is just how it happened. So to all of those people who can’t handle this; stop reading now.OK, if you’re still with me, let me tell you this story begins and ends quite well. It’s the bit in the middle that goes a bit ‘off-kilter’, my ‘formative years’.My childhood was very happy. I was one of five children brought up on a farm in rural Yorkshire. My Father was a farm labourer on a modest wage; we lived in a ‘tied’, drafty farmhouse. Dad worked God knows how many hours to scratch us a living. My Mum stayed at home and cooked and cleaned and worked her fingers to the bone to bring up five children; four brothers and a youngest sister, in a strong and loving family environment.I was born slap bang in the middle of the family unit and some of my very old friends teased me by calling me ‘the runt of the litter’. This was mainly on account of my brothers and sister was strong, healthy ‘farming-stock’, and I was just not! It did't bother me none, and as the saying goes “...but we were happy”, and we really were!And so, being raised in this agricultural environment, you can imagine how it was when I told my family after appearing in a couple of small bit-parts in the school play; that I wanted to go to Drama School! I’ll never forget that look of “Oh my God, he’s a puff!” which, let me clear this up here and now, I am not. Not that I’m homophobic or prejudice in any way, I’m just ‘not’. I will say though, that for some bizarre and unbeknown reason to me and considering we are all very much ‘cast from the same mould’; I am in many ways very different from my siblings.However, my family never faltered and supported me whole heartedly, and so off I went. As I said earlier, I was young and foolish, never bad but full of ideals and eager to meet the world outside of my safe rural family background.My naiveté and my keen desire to try absolutely everything soon led me astray and within a few short years, drugs had got the better of me. It’s a long story but before you could say ‘jumping jack flash’, I was drug dependant.My ‘experimenting had closed in on me and eventually I became addicted to Heroin and worse still, I was injecting. I was like this for two or three years, but before that I was into just about anything I could lay my hands on, as well as I had what they call ‘needle-fever’; I would ‘whack’ up anything if I thought it would get me off my tree!But after a couple of Methadone scripts that failed, a couple of close mates who O.D’eed and a shit-load of dirty hits, I decided to get out and go and see some mates who'd gone to live in Chamonix, France. I had no money so I hitched to Dover, got on the Ferry and then 'jumped' the trains all the way there.When I got there I'd done all my gear in, (in case I had to share it) and my friends, who were living in a Swiss style cuckoo clock chalet, locked me in a room with the shutters closed. They then left me to go 'cold turkey'. It damn near killed me but eventually, with them feeding me soup or cereal, I emerged 'clean'.My head was ‘f**ked’ and I would say it took about a year before I stopped getting 'flashbacks', as my conscience re-installed itself, but I was determined never to go back.- It was seven years before I dare go back to England and that was with my girlfriend (now my wife) and I still don't go back to my hometown unless I absolutely have to, twenty-five years on. I'm fine now considering but I did get depressed for a long time but eventually I rebuilt my life.I got a job in a restaurant in France, I learnt to cook, which seemed to come quite naturally too me, and I learnt the language which did not! I honed my cooking skills in France and worked my way up to Head Chef; that was quite cool for a 'Rosbif en France’!Then when I came back to England with Mandy, we got jobs in two local pubs in Nottingham and after several years, we were managing our own. Eventually we got sick of doing all the hard work for somebody else to take all the profit and so, with the help of Mandy’s mum, Anne, we sold our houses and bought our own pub. Nearly ten years later, we had three! I’d dug myself out of a hole and built a new life for myself and I was damn proud of that.Then, January 2nd a couple of years ago, I got sick. I dashed to our toilet and started vomiting blood, bloody loads of it, I managed to call my wife and she and her mum dashed into the toilet. I'll never forget the look on their face as they saw me with blood everywhere, all down my face and chin and spewing out of my mouth. It was fare to say that the Hep C virus had had enough of being quiet all those years and I think we all thought I was going to die right there and then.I was diagnosed with HCV, geno type 1a. The rest is history but after a biopsy it was clear that the only treatment available was a liver transplant and so eventually I've qualified and I am now on the transplant waiting list at St. Jimmy's in Leeds.OK, pause for a moment, becuse here comes the real tragedy.If we as a society would decriminalise and accept all drugs and our ‘need’ to sometimes use them, whether it’s alcohol, tobacco, dope or heroin. If we stop this crazy classification of them and accept that if heroin is class A then alcohol is A+. If we stop wasting money driving drugs underground so that drug dealers get richer and untouchable whilst drug users keep getting ill and clogging up our prisons. If our politicians can stop manipulating statics so that they can use hollow cliché’s like “the war on drugs” - which we all know has already been fought and lost. If we can do all this and use the proceeds to better educate and support anybody, drug user or alcoholic or even a naive farm boy, from getting into trouble, then maybe it would stop stories like mine from happening.I have learnt so much about addiction over the years, from my own experiences and from my time in the bars and restaurants that I have worked in. And of late I have had more time than most to contemplate the answer to it. It riles me to think about it – not just that my story could have been so different if we stopped this madness, but it’s the futility of what we’re doing. I know that making a decision like this would not come without pain, that's why our ‘leaders’ would never do it. They would rather manipulate the stats instead of actually doing anything. But I truly believe that if we just had the stomach to do this, it would empower us to tackle the real war which is addiction and ultimately our own health. Well, that’s my theory anyway, you can take it or leave it but you can’t deny that we’re not winning the way things are, and it will keep getting worse. And if we do something about it then you wouldn’t have to listen to me ‘carping on’ all the bloody time!Keep well everyone.... Ianthis story came from my blog: - Ian Quill : My WorldA blog about me, my thoughts, my hopes, my humour, my rants and my life with hep.C
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Donate LIfe Hollywood Golden Globes Pre party

On Friday the 15th I hosted a Donate Life Table in the Gift lounge of the Golden Globes Pre party in Hollwood,Ca. We had many Celeb's visit our table with an escort.I am thrilled to say that every one of the celebs that made their way to our table were in support of Organ Donation. All of them were more than happy to pose for a pic either holding their drivers license with the Pink Dot or holding a "I support Organ Donation" Car magnet.The Celebs that didn't have the pink dot assured us they would go register either with the DMV or on line at DonateLife California.A few of the Celeb's in attendance even got a bit emotional when we handed them a hand written thank you card from either a donor family or a transplant recipient. Along with the card I also shared a bit of my Transplant story and my 15 year old donor Tory.One of the celeb's that showed some emotion was Claudia Jordon, the number one Model from the show "Deal Or No Deal" I was even lucky enough to pose with her for a photo. A few others who got a bit emotional were The Pro Bowl Corner back for the LA Raiders(Sorry I can't remember his name) CCH Pounder from the t.v show "The Shield" and she plays the mother in the Movie "Avatar." Also Mehcad Brooks fro the show "True Blood" really showed some emotion and proudly posed with his Pink dot on his Drivers License. Jordon Sparks was being rushed and therefore wasn't able to pose for a pic but did say she supported Organ Donation!Anyway, it was a great evening and I felt very good that all the Celeb's we met with were all very supportive of Organ Donation!!
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1/17/2010 ~ Copied from my TxBuddies Blog

1/17/2010 ~Holly, thanks for the nice comments and picture captions. Those were good, and yes that is a McDonald's. Pic's of the bedroom after my wife decides what pictures and where to hang them. Actually, with my current med levels that container isn't too bad to use. I got tired of using the old "specimen bottles" @ 8am, Noon, 5pm, 8pm and 10pm. LOL*************************************The past few days have fairly quiet around here. Yesterday, I spent some time and removed an old laundry sink in the basement and have the new one about 85% installed. I still need to finish a few things, which I will do tomorrow. One can only spend so much time in a dark basement in the winter, without starting to feel like a mole.Today, since the snow melt in Ohio continues, we are going to take a drive and get out of town. No idea where we will head, but a day trip is order.Life is good.Years ago, we had a VW Beetle and I swore I could haul about anything in it. This guy beat me by a long shot, LOLThe next Romania pic ...........

You can see the entire blog here ~
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fighting heart disease

have been fighting my heart disease since i had my first heart attack at age 39 this heart attack destroyed the bottom left half of my heart. my heart muscel is weak and deterriateing. i've had angeoplas and 5 metal steins installed, i've had three more heart attacks one in each of the other valves of the heart. i've had congested heart failure 2 times. i have a (I.C.D.) which is an implantable cardioverter diffibulator place in my chest and i just had mital valve sugery november 4th. i've also had a quadruple by pass done and when they did the valve repair they also fixed one of the by passes it was on the bottom of the heart and was blocked. i all so have blockage in my neck one side 49% blocked and the other side 79 % blocked. believe it or not i still work 40 hours a week and cut grass and snowblow in the winter. the doctors say they don't understand how i do it with all the problems i have with the heart i say its will power i'm not ready to die yet. my friend keeps telling me god has things for me to do and he wants me to do them before he takes me. well thats it for now be good be safe and never give up keep fighting we will survive thanks Wayne L Racine chicopee massachusetts.
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For those of you who are reading my ramblings for the first time and for those of you who ‘tune in’ regularly to my blog; you should know that I am currently on the transplant list waiting for a new liver.Unfortunately for me, by the time I was diagnosed with HCV, and then had a liver biopsy to determine the effects of the damage caused to my liver by the virus, it was already too late. My liver had advanced cirrhosis and therefore the standard treatment to clear the virus was not an option open for me.Cirrhosis means scarring of the liver tissues and for me it is scarred so badly that the functioning parts of the liver are no longer sufficient to sustain me. In short, my liver is failing. What’s more, the Hep C virus is continuing its attack of what’s left of the organ.The good part about that, if there is one, is that I have not had to go through ‘combination treatment’ of Ribavarin and Interferon over a long period of time to eradicate the HCV. Certainly from what I have learned is that that treatment is a bloody awful experience that you wouldn’t wish on your worst enemy! It would appear to me to be a long hard slog (usually 48 weeks) with many side effects and makes me shudder to think about. However there is a possibility that one day you may come out on top and virus-free.The down side for me is that I will never be able to live a life without taking drugs everyday and there is a strong possibility that I will have to live with Hep C, even after the op, for the rest of my life. Not good!That doesn’t mean though, that I am living a life without hope, far from it in fact. Though I'm not looking forward to the surgery, I am looking forward to feeling better after it.On good days, when I don't feel so bad I think; have they got the right bloke or, do I really need to go to these lengths to make me feel better. Have they made a mistake with their diagnosis and suggested treatment. Or even just; am I really that bad that combination therapy would not work?But then on other days I feel so bad that I could ring up St. Jimmy’s and beg them to get this thing out of me and change it for one that works, and the sooner the better.Or like the other day when I was editing some photos that I took over this Christmas period. Most of the photos were taken by me, but on the odd occasion Mandy had caught me in the background when I wasn’t paying attention and keeping out of frame. Suddenly there I was, old yellow head, my gaunt, wizened complexion against a plain magnolia wall or worse still, next to my kids! They looked so young and healthy, their eyes like beautiful blue pools set in white marble, Greek god like, and, stood next to them a ghoulish old creature about to pounce and devour their innocent soles. Thank God they don’t see me as that, to them, fortunately for me; they just see lovely cuddly Daddy who has a sore tummy and sleeps a lot!I try not to dwell too much on the transplant operation, Nine hours of surgery or so seems far too daunting to contemplate followed by intensive care and hospitalised recovery. I prefer to concentrate instead on coming out on the other side of all that.Do you remember Steve Austen, the Bionic Man? A man barely alive! He was my favourite 70’s all-action hero, half man, half Betamax video recorder spares, serialised weekly. For those who don’t know, the story line was; he was US astronaut turned test pilot who crashes during a test flight and then is rebuilt so that he can go on and fight for the US government and Mama’s home-made apple pie!I kid you not, it was that ‘cheesy’ and if you don’t believe me, click on this link and watch the opening title sequence!

The Six Million Dollar Man, it really was that bad! My Dad used to describe it as ’shit from China’ he always did have a way with words. But as a boy of 10 or 12 at the time, I loved it and tuned in without fail.The problem is that now, when I think of my ‘road to recovery’, I keep seeing myself in surgery in much the same way as the title sequence and then, there I am, on that bloody treadmill whilst the music starts to elevate in the background and next I’m running at 70mph! I can hear old ‘Oscar Goldman’ doing the voice over, “Ian Quill, A man barely alive” not that there was ever much going on much between the ears; “Gentlemen, we can rebuild him, we have the technology” by now I’m ‘pumping’ those bloody big dumbbells, “Ian Quill will be that Man, better than he was before,” no more wizened old yellow faced crone, “better, stronger, faster” and by now I look like a cross between The Terminator and a bronzed Adonis! And splat, someone slaps a price tag of £6.00 on me and at that I still look overpriced.Okay, okay, so I’ve overdone it on the Sunny Delight and chocolate and I probably won’t be able to sleep so well tonight. But just thinking about what it will be like to feel normal again seems damn good to me. At this moment in time I’ve got to say that I just feel plain old sick and tired of feeling plain old sick and tired, all of the time. So if the Six Million Dollar Man is going to help me get me straightened out, that’s fine by meAnd maybe when I have a correctly functioning liver that’s supplying my brain with the necessary chemicals it needs instead of toxins, maybe I’ll stop imagining that I’m an all American 70’s Action Hero, but until then, you’ll have to put up with me the way I am!Keep well everybody.... Ian
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Hello Everyone, Welcome to My First Post!

This post is longer than my usual ramblings, but I wanted to share with you what’s been going on over the last few months, so pull up a chair and have a listen to ‘my world’I'm a Hepatitis C sufferer and have been for sbout 25 years, unbeknown to me!The virus became 'active' about 2-3years ago however and I was diagnosed sometime after that.I have an eye for the unusual, a love of philosophical and political humour and enjoy nothing more than good, old fashioned 'Micky' taking!I write a blog mainly to amuse me, but also to let people know what hep c is and what it's like to live with.My blog also acts as a 'test-bed' for my studies with the 'Open University' on creative writing.Please click on the links on this site for the Hep C Trust and others, whom I have relied on for help, information and support.I hope you enjoy reading my by blog and maybe even find it amusing and enlightening! Check it out at: http://www.ianquill.blogspot.comOk, so I’ve made it onto the transplant list, which was no mean feat in itself. When I look back to the time when I was diagnosed up until this moment, it seems like I’ve travelled a very long road.However, I never thought I’d have to prove my ‘worthiness’ to receive treatment, that’s for sure. I believed that we all paid national insurance contributions so that access was an automatic right in Britain, right? Wrong!I’m not going to start ranting about the National Health Service (NHS) here. I believe their policy on this is fair and just. But I want to share what the implications of this meant to me.Let me explain. A week or so ago I was at St. James Hospital in Leeds. Sitting in front of me was a specialist nurse eyeing me calmly, whilst I was fast losing any composure I’d had and I was beginning to cry like a child.She’d only asked me how I’d been since I last saw her. As I started to talk I could feel my emotions rising up inside of me. My eyes became glazed and I could feel a lump growing in my throat, until I found that I couldn’t utter another word.She’d last seen me when I was first referred to the specialist liver unit at St. Jimmy’s. Up until that point I was still working (to a fashion), we’d sold our pubs, but most importantly, I was still drinking! Not as much as I had done once, admittedly, but that was more because I felt so bloody awful every time I did.I was admitted to one of the wards and within a couple of hours of arriving I was connected to all manner of pipes, drips and monitors. My abdomen, legs and ankles had ‘blown up’ with ‘fluid’ so as a matter of urgency I was connected to a ‘drain’. They siphoned off twenty-three litres of a thick, yellowy, vile looking fluid over the course of the first day.For me this was a huge relief. I no longer had this massive pressure around my torso and lower body that made me feel like I was about to split open at any moment. It seemed like it had actually been trying to choke me, making my breathing heavy and laboured. And now that had all gone. Relief. I felt as light as a feather and free to tackle just about anything again.Over the course of the next few days, I was subjected to all manner of tests, scans and cardiographs. In fact, any medical test that I may need before they would even consider whether I was fit enough for a liver transplant operation. However, that was the easy part! Next up was the psychological stuff, the bit where they start to look inside your head.This was the first time that I met the specialist nurse. Her official title was the ‘Specialist Substance Abuse Nurse’. Now, like me, you probably have visions of drug addicts or desperate alcoholics floating around in your head. I didn't consider myself to be in either of these categories and so I met the nurse with bemusement. However I knew that in order to receive any further treatment I would have to answer her questions.She started off by asking me when was the last time that the drink? I told her that it had been at least a couple of months, this was a lie. She shuffled through some papers until she found one which she started to read. A minute or two later she let out a sigh, took off her glasses and placed them on the table in front of her. “Mr. Quill, these are the results from your most recent blood tests. According to these you are still drinking.” she exhaled as she picked up the glasses. Mr. Quill, are you aware that we operate an absolute zero tolerance policy? Are you aware that if we believe you're still drinking then we will withdraw treatment immediately?” she looked at me indignantly and waited for a reply.I paused for a moment whilst I took stock, I felt like I had just been attacked for my way of life. “That's very easy for you to say” I decided my best form of defence was attack. “It's not been that easy. My whole world revolves around alcohol. That’s what I do, I’m the pub landlord, and I sell alcohol. When I was diagnosed with hepatitis c do you know what that did? It took my world, shook it, turned it on its head and smashed it on the floor. Now I'm left to pick up the pieces and the only constants that I have left is my family and alcohol. I lost my business, my friends, my livelihood and everything else that goes with being a licensee. I loved my job and I was good at it”.“I got the virus when I was a kid, probably 19 or 20, when I was foolish and reckless. I dug myself out of that hole alone and built a life for myself. I have a wife, kids, I built a good business but it wasn't just a business, it was my life. Then one day I started vomiting and shitting blood all over the place. And when I wake up in hospital, my doctor tells me I've got hep c. He tells me that just about everything I've done has been for nothing. Can you imagine what that feels like? I don't wake up in the mornings, sweating and shaking, needing a drink. I never have, I drink because that's my job. True, I love having a drink as much as I love my job, but one without the other is no use.” I tell her.As she looked at me, I could see that I had started to break down her hard exterior however, not enough to change anything. She looked troubled. “Mr. Quill, whilst I understand, as I said, we operate a zero tolerance policy on alcohol. We can't give a liver that has been donated, and watch somebody destroy it.”At that moment I realised my life would never be the same again. She told me that my case would be heard again in six months and that during that time I would be called for random alcohol tests to ensure that I had, as I said, completely given up alcohol.So six months on and I’m sitting in front of her trying hard to control my tears and my emotions. Not because I had given up and hit the bottle or somehow gone completely off the rails. But because I told her how, for the second time in my life, I had turned it around again. How I’d given up so many things that I had held so dear, including the booze and my way of life. I told her how, with all the pain I felt everyday and my emotions all over the place, I had built a plan for the future. I told her how this time, I’d achieved this only with the help and support of my family.This was the point when I started to cry like a child. Tears were streaming down my face as I spoke of Mandy’s relentless support and how I just had to look at my two kids playing together for inspiration.But more than this, I told her that for motivation in my darkest hours, I imagined how my widow would try to explain to my two little orphans why their Daddy would never be coming home.Silence descended on the room except for my stifled bursts and then, after a few moments my nurse gathered herself and said “Well Mr. Quill, I have your test results here and it’s true to say no alcohol was detected.” I knew that they couldn’t say anything but that. “And I’m pleased to say that I have no reservations in recommending you to the transplant coordinators, however your case will, will go in front of the transplant team and it’s up to them.”I left the hospital that day feeling physically and mentally drained. Now it was out of my hands, I’d done my bit but was it enough? Did I deserve the treatment more than the next man? My head was swimming and I knew it was going to be a full week before the panel sat to discuss cases.That week was one of the longest I ever had had to endure. On the day of reckoning, I sat by the phone, not knowing whether to call them or wait to be called. As you can imagine, sods law ensured that everyone from double glazing to my Mother in Law called.Eventually the phone rang and even before I got it to my ear I knew it was my case worker at the hospital. “Hi is that Ian?” “Yeah, hi, how ya’ doing?” I tried to control my trembling voice. “Yeah good thanks, Ian, I’ve got some really good news, if you can call it that” My heart lifted then sank as he spoke, what the hell did he mean by that? “Ian, I’ve just got out of a meeting for the Transplant Panel, you’ve been accepted to go on the transplant list, and I hope that’s what you wanted.” Again I was fighting back tears, but this time tears of joy. If he’d been stood in front of me now I would have been hugging and kissing him now in an explosion of euphoria. He carried on as I jumped around with a phone pressed to my ear. “It sounds like you’re pleased. I’ve got to say the panel was very impressed and proud of you. They really thought you’d come a long way. The nurse you saw last week well, I don’t know what you said to her but she loves you, couldn’t speak highly enough of you!” I think by this time hysteria had set in on both ends of the phone.I was the only person at home so I rang Mandy and told her the great news, as you can imagine, my euphoria managed to relay what they had said my feelings about it all. Obviously she was as thrilled as I was and we would celebrate in some small way later when we were all home together.As I got off the phone in the quiet of our home, I contemplated what this moment meant to me. I looked back at how far I’d come. My fight to get here and how, after this small victory, I could at last look forward to a future again. They say that everything happens for a reason and I believe that’s true. Maybe this is a chance to build a better future than I was going to get or expecting, maybe, after I win another small victory on another day.Keep well everyone .... Ian
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Now That I'm Home

It has been almost 2 yrs.,since I started the adventure of being in the Hosp./Nursing home. It is really great to be home!! There have been many changed since I came home.I'm now tethered to a long tube that is attached to my fairly large oxygen machine.When I go out I have smaller tanks that I use and I always make sure to take a back up.So when I'm out it almost like having a curfew (like when we were kids! hahaha! I went to rehad a few times.They wanted me to go again for pulmonary rehab,but that is kinda a waste of time for me ,the reason? I can't do the eliptical or the tread mill.I cant workout on them because I have AVN/ON ( this means I have a loss of blood flow in my femoral bone. And that the bone is Dying) The only cure is to have hip replace ment. I also have a condition in my right foot Nuropathy ( they really aren't sure how I got this)Neuropathy is a type of nerve damage. I'm now on meds. that really dull the pain and it just leaves my foot feeling numb and tingly. I has also caused foot drop.So as you can see my life is still an Adventure ,now we just go thru different Chapters. I was to Liver Clinic last week and my Liver is doing great! All my labs are fine ,too. I'll be back to write another Chapter some time soon!
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At the Hospital

y daughter Melanie and I decidedthat we would go to the ER. I was having a hard time breathing. Melanie got Me into the Er and went to park the car. ( This happened on Jan.24,2008) I don't remember anything until March 2008. II guess I was awake at the time. I was admitted for a few days but I guess I has a big issue with breathingso they put me in ICU.Some where diring this period I went in to respitory distress. They gave me a trach.and put me in a ventalator.I was put into a drug induced coma for 7 weeks. My lung collasped twice. I work up sometime in March ( I know it was right befor Easter)when I woke up I had a hard time moving and my right foot hurt so bad ,burning stabbing pain it was horrible.I still was on the resporator.That was just really scary.I couldn't talk because of the resporitor and the Trach.I was not allowed to drink any thing and I had a feeding tube in my nose.Sometime during this period I was able to have my daughter explain that I didn't want the tube in my nose.So I went into surgery and had the feeding tube put into my stomach.It was really rough trying to get my word across to anyone because I couldn't talk.My daughter Melanie quit her job so she could stay with me during the day while my Husband Rick was at work. I don't know how she did it but somehow she was the only one who could figure out what I was trying to say.I believe it was sometime in April that I was taken off the resporator.Which meant the trach was ready to heal. I had to still have to pass a swallow test before I could eat or drink.1st. time I failed they would try again in 2 weeks. I would have P.T. during the day . it was really learning to sit up for a few mins. and soon after I was able to sit longer & they began the leg exercises.Second swallow I test I pasted. I was able to have ice chips! They were so good! I was brought in real food. Everything was so good. This also meant I would get my tube removed from my stomach!! Everything was going good. I had caught a super bug (C-Diff) this is an intestinal bug.C-Diff is also very hard to get rid of!! I was finally released from the hosp. and went into a nursing home for rehab. (I would never want to be in a nursing home again. The CNA that came in for the late night shift were just there for a pay check. I would cry when My Husband and kids would leave at night. I was scared. I would not sleep. I just wanted to go home. The dr's told me I had neuropathy in my right foot.This is nerve damage.Once they found the right meds.the pain went away but I still had the numbness and tingling. This is going to be a permenat thing.I would have P.T. and work on standing or walking. I was moved to a few nursing home's I think it had something to do with July I could walk a bit with the walker. I was sent back to the 1st nursing home. I was at the point that they really couldn't help me any more. I was only there because of the C-Diff.One day the Doctor came in to see me and I told her I wanted to go home.Itold her I can take the antibiotic's at home. The Doctor agreed with me. I needed to get away from all the germs . So I went home on July 17,2008 .I had spent 6 month's in the Hospital. It was so good to be home!!!!Due to the foot I had to have several MRI's .They never figured out what was wrong with it.The MRI's did find a problem with my hips. I have a bone disease called AVN/ON (the best way to learn about this is to google it) It is very painful and the only cure is hip replacement. The Orthopedic said they won't do surgery on me because I'm too high risk due to my lungs. So I'm not sure what will happen when it progresses. So this is the story of my adventure!! Thanks for taking the time to read it! suz
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The Rest of my Adventure

I hope you all read my 1st part of my story In Transplant Buddies.This is the rest of my story. After my 2nd. Transplant I went on treatment for Hepatitis -C. It was 1 injection of Interferona week for 52 weeks.Also I had to take a drug called Ribavrin. (This Med. would make me moody and really mean)Ribaverin also would mess with my blood counts. and had to have several blood transfusions. I still had to finish the treatment.I was so Happy when I took that last shot!! i though Wow,I can get on with my life. That was not the End of my Adventure ,just another Chapter!! One week after I was done with Treatment I had to have my labs checked and have my Hemocrit checked (this was done by a nurse and was just a finger prick. The results came in 10 mins. It also said my hemocrit was very low. I needed a nother Transfusion.I waited for a bit for them to get me the blood for the transplant.When it came I was called into the infusion room.The nurse in there was going to take my vitals .It turned out I had a fever.I would need to be admitted into the hospital. I was told to go home it would take about 6 hrs. to get a room.This was in January and with the flu the hospitalran out of rooms. However I knew they had to take walk ins into the hospital, just no ambulances. ( this meant the hospital was on ByPass)
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Thank you

Thank you for inviting your friends to Transplant You can also tell them about We have dedicated forum leaders on and now I am going to ask for volunteers who would like to lead the way on our friends site here. Anyone interested in becoming a Social network Director? What I need help with is greeting others, answering questions, posting pictures and I am always open to ideas. Thank you so ((((Much))) Rise'
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I also have AVN/ON

Hi! I'm so glad that someone else has wrote about AVN/ON.I also have it in both hip's.My otheopedic says I'm to dangerouse to do hip replacement.. I got phnumonia one week after I finished treatment for Hepatitis-C. I will also post this on my profile. Take Care ,Sorry but I could not get this to post in transplant soski25P.S. This is in reply to a post I saw on Transplant Buddie's. The post's were written by Ticker andThunderlungs.buddies.
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Introduced, it is now I eat the drugs:

Introduced, it is now I eat the drugs:Tacrolimus 1.0mg/b.i.dMMF, 0.5g/b.i.dLamivudine, 0.1 q.dOf anti-hepatitis B immune globulin, 200IU/10 dayDifficult problems, proteinuria0.38g/24HWho told me, how do you treat proteinuria? and I have a kidney transplant。
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Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need for a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at Thank You So Much!

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