Donnie WAhlberg helps a fan get a new kidney all from Twitter.
Donnie WAhlberg helps a fan get a new kidney all from Twitter.
PLEASE READ MY FUNDRAISER BLOG. EVEN A DOLLAR WOULD HELP.
My husband has just got out of the hospital, He was running a fever of 104 and they said he had a urineary traack infection and his throid was messed up. We went to Birmingham last week and the doctor said his meld score has jumped up to a 20. They want him to be seen by the surgeon that does the transplants. i just sit and wonder , are they going to put him on the list now. He has to have oxgen. He has trouble breathing. I wonder how much time we have until he is put on the list.
On September 26, 2010, the UCLA Liver Transplant team performed their 5,000th liver transplantation. This is the most recent achievement of a 26-year journey that has given new life to literally thousands of patients. The first liver transplant at UCLA was performed on February 1st, 1984.
And I am so proud and blesssed to be one of those 5,000 transplant recipients and survivors by Dr. Busutill. Eveny day is a breathtakingly new life.
Thanks to you ALL.
Dispite the many breaks I've had to take, the 100 mile walk continues. I made the 50 mile mark just before Christmas break. I began walking again after the new year, and am currently at the 73.5 mile walk. My new heart is functioning perfectly, but the medications are causing a few complications. These complications are more worrisome to my transplant team than they are to me, and I assume this is because my ignorance is bliss. I feel great most of the time, but the few times I have problems seem to end in a hospital stay. Frustrating to say in the least! I realize I have been given a precious gift, and try very hard to OBEY all orders and suggestions. As most of you can relate to, after sitting around waiting for death to tap me on the shoulder, I am now ready to get going and live life! But I was told I could have my life back in a year, so I still owe them 6 months.
I am currently walking through Edgewater, Florida. Once more I'm in the hospital for a day or two of tweaking meds, then, thankfully, I'll be released to start walking again. Only 26.5 miles to go, and I am so excited to complete this pledge! So close to the finish line! Being in the hospital hasn't stopped my awareness efforts. Ever the one attempting to find an organ donor wannabe, I talked with a nurse last night who signed up on the organ donor website. Hooray! She promised to pass the web address on.
I hope this blog finds you happy and feeling well. I hope your dreams are coming true. I hope life is glorious and improving daily. I hope we can all work together to make tihs happen for all of us!
Well... It just aint been happening for me at the moment folks, which is damn frustrating!
If you haven't already picked it up via twitter or facebook, I didn't get to have my biopsy but just a rather expensive and annoyingly frustrating kind of a week.
As I said on my vid, I was due to go in on Tuesday - Fantastic. So I got up on Tuesday, pumped up and ready to go, dashed around a bit because on that morning I had an interview with a recruitment agency. That went well and as soon as I came out I thought, seeing as I was in town I would do a little retail therapy and hit the shops. I wanted to get myself a wireless internet 'dongle' so that I could keep in touch with the world whilst I was in hospital.
Many of you who have spent time in Hospital will know what I'm talking about when I say I feel so cut-off when I go in to these places, especially for something which you feel is routine or seemingly straight forward and then suddenly turns into a marathon 'staycation'.
If also like me, you use St Jimmy's specialist liver unit, you'll know there are no TV's on the wards. Now I know the phone signal is patchy inside the Hospital but, being a Vodafone customer, I have found that generally speaking I can get a signal. So I headed straight for the Vodafone store and re-emerged 20 minutes later with said item and £20 quid lighter, excellent. Now all I needed was to find was a 'vanilla slice', a cappuccino to go and my retail fix was done, cool!
Ok, once I got home I decided I would put an update on my blog. As my typing is still painfully slow even after all these years of using a keyboard, I decided the quickest way (and as Mandy and the kids were at work and school) was to use Mandy’s' laptop which has a webcam and post a video diary update. (http://youtu.be/vviKROJXEa8)
Ok, so after that I just had to load my 'dongle', pack and soon as we'd had tea and got the kids to bed at 7pm, I would get gone.
The reason for going in the evening before my biopsy was scheduled was to get me into a bed, get some blood taken out of me for tests, put a 'venflon' put in and then make sure I was 'nil by mouth' from midnight onwards.
Great, so I arrived and everything was going 'swimmingly' until a doctor came round and after 'blowing' a vein in the back of my left hand (not her fault, it's easily done!), we got onto the subject of medications and what drugs I was prescribed. As soon as I told her that I was on Warfarin for a clinical trial, we both realised that having a biopsy was not going to be an option!
I kick myself as I should've realised that taking a drug that thins your blood would probably help you bleed to death when they started trying to 'spike' you to take a peace of your liver away for examination - Warfarin stops your blood from 'clotting'! Ouch!
Apparently I should’ve had a letter telling me to stop taking it five days prior to attending. I can only assume that as the study is being carried out by the Imperial College, London and not St James Hospital that it was an oversight and didn’t get sent. This was reaffirmed by the doctor who had no knowledge of my being on the study - bugger.
So after that I was told my bloods would be checked and then could go home in the morning once a new biopsy had been booked. Well, at least I got to check that my dongle worked OK! And I spent the next few hours chatting to guy in the next bed who had recently been 'transplanted' and consequently was still on high doses of meds - he babbled intensely and will probably have no recollection of ever meeting me but I hope I reassured him at the time that he was gonna be OK and was in safe hands. I know his situation only too well!
Next morning I was given a bowl of cornflakes and a cup of insipid tea and informed that my 'bloods' were fine and a date set for the following week to do it all over again! After hanging around to get my venflon taken out, I was released and went down to the main reception. As I'd driven myself in and parked my car in the hospitals' multi storey, I found the pay-parking machine and popped my car parking card in - £15.90!!! Yeas, I'll say that again, 15 bloody ponds, 90! To park overnight for something that didn't happen!!! Bloody Hell, I won't be doing that again.
So after running around the hospital to find a cash-point that worked before the price went up any further, I grabbed a Cappuccino to go to try and get rid of the very bitter taste in my mouth.
So that was last week in a nutshell. I was hoping to get the biopsy out of the way so I could try and make some decisions on moving forward. So many questions at the mo and I can feel the clock ticking away in the background all the while, bloody hell, it's like banging your head against a brick wall sometimes. This damn thing keeps stopping me every time I get started. Ho-Hum, we move on.
I did get some good news; both agencies I had signed on with came back to me with some possibilities of interviews. One fairly well paid but in London (which I'm not opposed to) and one not so but staying here (which is also good). Now I just need biopsy results so I can make a decision on what's best to do!!!
Watch this space, we'll try again this week - I go back in on Tuesday 2nd.
Take care everyone... Ian
Wow! Ya know, one of the best things about blogging (for me) is that it's a bit like keeping a diary! As with a diary, when you need a little inspiration, you can look back over some of your old stuff and very often you can sometimes amaze yourself. And that has just happened to me.
Like many people, a new year gives you the chance to clear the decks a bit and start to look forward and try and form 'a plan'. Ya know, out with the old and in with the new kind of stuff and it was for that reason that I decided that I would look back at how I felt at this time last year. I've got to say, it felt almost like reading someone else's blog but with whom I could really relate! A different person entirely but I could see that he was dealing with the predicament he was in, in much the same way as I would. ‘He’ was of course desperately waiting for a Liver Transplant and Hepatitis C was ruling every aspect of his life.
And that's it. That's the 'nail on the head' I've been looking for. Suddenly, for a brief moment the shroud was lifted and I could see what I was floundering around looking for. Who am I now? Not the person I had become, after experiencing the roller coaster ride that my life had always been, but the REAL ‘Brand New Me’ since I received a full liver transplant and now was ‘master’ in his fight with virus. No, not the guy I thought I was when I wrote ‘Brand New Me’, not the guy I thought I would become when I wrote ‘Gentlemen, We Can Rebuild Him’ But the man I now see everyday in the mirror and like I said, wow, he’s a very different but very recognisable chap at the same time.
I suppose the seriousness of my situation for the last couple of years has knocked the child out of me and maybe now those very same things are helping me find him again. In a strange kind of a way, I feel like I’ve been reset to a ‘default mode’. The guy I was before life got in the way. More childlike, maybe, but now that I’m starting to recognise him again, I seem to be getting more and more comfortable with him.
I’d like to say it feels totally great, setting out on a new road into the unknown, like I have so many times before. But this time around, understandably, I’m going forward with some trepidation. I realise that now as I sit here and write but am aware that again, going forward can only be better than where I have come from.
As a younger man, I lived and worked abroad for many years, following the seasons and the tourist trail as I travelled and tried to earn money as I went. It was great fun and one big adventure but like everything, it had its downsides too. I can remember, as each season was drawing to a close, how down I would feel. All the great people that I had met, I was now about to say goodbye to. No matter how great the intentions of staying in touch, I knew that for many of them, this would be the last time I would see them. They, like me, were backpacking on their own journeys of (self) discovery although for me it was a journey of rediscovery. This had been brought about by a brief, but what later turned to be a devastating foray into the world of drugs and addiction.
Again, we were all getting ready to depart for new destinations and new adventures. For me, even though I knew it was an inevitable conclusion to another happy chapter, I always faced it with a heavy heart. It was as though it was period of pre-grieving for what I was about to lose until I could finally square it in my head. Then, after the final leaving party and the hangover had lifted, I would pack up my kit and set out on the road with a renewed lust for adventure. For sure I worried at points, setting off into the great unknown, but these worries were far out-weighed by the myriad of possibilities that lay ahead.
So, where does that leave me now? For sure, I can’t just pack up and move on like I once did. I have my family to consider and they are one of the few things that have kept me grounded and sane through all the turmoil I have been through. But I still can try and get back to the naive joker who was creative, laughed a lot, cared a lot and had a sense of adventure; back to my ‘default setting’.
And so that’s it, that’s my revelation which leads me to my resolution for this year and the first that I have been able to plan for sometime. Somehow, I’ve got to ‘shoe-horn’ that into my life in a way that fits with my family and financial constraints. I definitely need a job of some kind, something that I can get my teeth into and will hopefully benefit others. But definitely not a job that was as all consuming as my last one, which ended up ruling my life. I need to ensure that whatever I do it leaves enough time for my family but also leaves time to allow for some kind of creativity.
For what seems like forever, I have been saying “Once I’m better, I’ll be able to…”! What? Get back to normal? Carry on like nothing ever happened? Put it all behind me?
Well, the first two of those (get back to normal & carry on like nothing ever happened!!!) will never happen. It’s not that I’ve let the genie out of the bottle and it doesn’t want to go back in, you understand. But more like some weird ‘TV soap plot’ that I could never have imagined would ever happen in real life, was unleashed on me & my family.
I can remember (way back when…) having to endure an episode of ‘Eastenders’ that Mandy had been watching. Some particular piece of torrid drama unfurled on one unfortunate character and I said “Why does that always happen on these types of programme? Anyone who ever seems to be doing well gets hit by some kind of personal tragedy. It’s so pessimistic and depressing (& predictable!). It doesn’t always have to happen like that and it certainly doesn’t in real life!” – WRONG!
Okay, so it happens! And it happened to me. Yes, I’ve still got the virus, and yes, some days I feel like crap. But I did for many years prior to my transplant without even realising it. And once I did I kept on working up until about four or five months before my transplant. I was working fifteen hour days with an hour or so travel time either side, to and from work, for six days a week! That was until my employer found out I had HepC and that I had not declared it! I was suspended from work immediately. After all sorts of inquiries and tribunals I was told I was allowed to return to work but under a final written warning! “Erm, let me think about that for a moment, er, thanks but no thanks. Don’t call me, I’ll call you!”
But now I need to get to my third point “Once I’m better… I’ll put it all behind me!” Okay, so I’m not completely better but I need to move forward with my life and that is what has been ‘bothering’ me lately.
As you may have read in ‘How Do I Define Myself?’ that for me – ‘I am what I do’ so to speak. Now, more than ever, I need to go back to work.
But would you hire this man? After an ugly split with the company I sold my business to but with whom I was under contractual agreement (because of my HepC)? Bad credit history because this forced me to declare bankruptcy (because of my HepC)? Pushed out of a job by my last employer for whom I was working (because of my HepC)? Not worked for over a year (because of my HepC)? Just returning to work after a Liver Transplant (because of my HepC)? And STILL has HepC!!! Now, I was an employer for many years and I wouldn’t hire me! You get my point.
So folks, if you’ve been in this kind of situation or something like it, and I’m sure there are others like me reading this, what do you suggest? What do I say when I get asked at interview “Tell me about yourself, what have you been doing up until now”? What do I write on the ubiquitous application forms when they ask about ‘time off sick’? And do I declare my HepC? Especially when I know I’ll never get the job if I do.
The thing is, I moved on once before in my life, when things weren’t going well, as many of us have who contracted this virus - because of a ‘dubious’ past. I put it all behind me, moved on with my life etc etc. I was even making a real success of things until one day out of the blue, I got sick. I don’t want to feel like I’m going backwards. I don’t want to stand still. But I’m also scared as hell that if I do move forward it will happen all over again.
Don’t get me wrong, it’s not all ‘doom & gloom’ here. I generally have a positive outlook on life. I always said that I would use this ‘second chance’ as an opportunity to switch careers (especially as going back into catering with HCV would be difficult) and do something that I really wanted to do. The problem is, I’m not quite sure now what that is and there just aint the jobs out there that there once was. I do keep getting calls to go for interviews because my CV etc looks quite good, but it makes no mention of my HepC nor my recent’ish history. So I go to the meetings and that’s the end of that. Surely there has got to be ONE job out there somewhere…? So any help or answers right now would be real helpful.
Take care everyone…. Ian