Chopped Liver – History

Maybe not HIS story – but MY story. As I stated in my latest blog, since I had my stent removed a couple of days ago, I feel that I have reached a, sort of a conclusion to, if not my medical procedures for the rest of my life (I’m not that dumb to assume…), then certainly a rather interesting part of it.

And one of my blog contributors has commented that perhaps now might be a good time to reflect, or more accurately, to summarize how I got to this point from where I started. So, I am going to do that. If you really want the detail, then it is all included in previous posts going back to March 5th 2010 – the genesis of my revelations.

I was considered for a liver transplant going as far back as 2004, although I almost made it to the “list” in 2007 – but it was decided that although my blood results were less than satisfactory, the risks of such a major operation were too great for a not-so-anticpiated increase in quality of life – in other words – I was still doing just about ok.

Further tests in the form of MRI scans, Ultrasounds and “Top and Tail” probing kept my name on the “bubbling under” grouping. Until late 2009 when my doc decided “enough was enough”. My condition, described as Nodular Regenerative Hyperplasia, was showing no signs of improvement on the blood results front and it was felt that, as I was young enough and fit enough (not in the Phwoaar!!! sense, I take it), now was as good a time as any have the transplant.

More tests followed – which revealed, da da DAAA…. a blood clot in the portal vein! Any doubts as to my suitability for transplant were quickly dispersed. I was a… eh.. how shall we say… an accident waiting to happen.

I was on the list.

The only issue was, that, due to the complications of my inner workings – previous operations, random arteries carrying blood where the portal vein couldn’t, and who knows what else, they had to wait for an absolutely ship-shape perfecto-mundo liver, for my size, my blood group and with no abnormalities thrown in. So, I had to wait for that. I had to wait for someone in a good condition to die. Not a pleasant thought, but the medical team have to look at these things in a non-compassionate way – and so, to some extent, do I. Every death can save up to 6 lives – when you take into account the heart, lungs, liver, kidneys and whatever else they are able to transplant these days.

So what was life like on the waiting list? I can only speak for myself really. And for my wife and family. Everyone deals with this differently. After a few weeks of realising that the phonecall I was dreading/anticipating was not going to come any time soon I got pretty complacent about it all. I think my wife found it a lot tougher. I tend to find that it is usually the nearest and dearest that suffer the most – certainly psychologically.

The call finally came on the evening of Feb 8th. I didn’t realise it was THE call until half way through when the penny dropped. This really was the real deal. I went home to my wife – and although we had had 11 months to prepare for this moment, we didn’t have a clue what to do.

What to pack for the hospital? (Really, what did I really need? Not a lot). How to say goodbye to my young son – I tried, but he was so far asleep and happy in his blissful state that I was unable to rouse him – unable to say goodbye – he wouldn’t have remembered anyway, even if I had managed).

I got to the hospital. Said goodbye to my wife. Bizarrely I got to sleep. Was woken early morning by the anaesthetist, who administered the pre-med drowsy stuff – and that was it.

That was it for me at least. The team of medics apparently performed miracles on my behalf over the next dozen or so hours (not to mention days and weeks). My family struggled to concentrate on the trivialities of life during this critical period, as you can imagine.

The medical team simply perform miracles – that so Michael Jackson?

But I woke from my deep sleep in ITU and felt… strangely fine. My wife, brother, doctor were there at the point I was conscious of waking, and they said some mumbo jumbo stuff I barely understood, but all with a smile on their faces.

And I felt…

No pain.

If I had been able to string two words together I might have asked if they had done the op yet.

Within a day, however, I was sitting up, out of the bed, sipping tea. (That was a mighty fine cup of tea, let me tell you).

For many, by day 2 or 3 they are able to walk about unaided – for me I had a bit of an issue to do with body fluid retention that hampered me for a good (good? it was anything but good – more uncomfortable than the bleedin’ operation if you ask me), and then there’s the talk of being allowed home for the weekend after only a couple of weeks.

Again, for most people, this would be achievable and uncomplicated. For me, unfortunately, I spiked a fever on arriving home and had to return to hospital immediately. But, everyday I could feel myself getting stronger and stronger.

Once home, within 3 weeks, the district nurse would call round regularly to dress my wound. And I would attend clinic as an outpatient – that was a great feeling – an outpatient! And before long, my anti-rejection drugs dosage was being decreased, and I was able to take to the great outdoors (keeping out of the nasty sunshine, of course). And everyday I could literally feel the improvement.

I have a bit of an issue currently regarding the thinning of my blood to ensure I do not suffer another blood clot in my new portal vein – which would precipitate the whole process starting again – and we would’t want that now, would we? I’m sure they’ll sort out this issue and, like all the other “issues” I have faced since the transplant (and which are featured elsewhere in this blog), it will soon fade into a distant memory – a minor blip in the grand scheme of things.

Obviously my journey does not end here. Otherwise why bother? Why not have given that liver to someone else? No. I intend to be very active. I intend to give something back. This blog is a minor start to help encourage others in a simliar position to feel confident and positive to go ahead with their solutions without fear – or, perhaps to feel their fear – but to channel it in a positive manner.

I intend to do more to help the cause. To help my family. And to help myself. And, finally, I owe it to the anonymous donor family to make my future as rich, colourful and rewarding as I possibly can.

It’s simple to carry a donor card.

Just follow steps 1, 2 and 3.</a

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9 Comments on “Chopped Liver – History”

  1. phil Says:

    David,

    What a journey! When did you first suspect something was wrong with your liver? And What was the scariest moment?

    • davidkallin Says:

      Well, Phil, I dont know when I was first aware of a problem. I woukld go for regular check ups for my Crohns condition and would be informed that my liver results were not good, but nothing was either disgnosed not any action taken, other than to monitor the situation – for years. Latterly – in the past few years I became aware how yellow my skin and eyes had become, plus I started getting fairly regular episodes of Cholangitis – a severe flu-lie sysmptom condition brought on by blockages in the bile ducts – and potentially very serious. My situation only became critical when the blood clot was spotted just over a year ago.

      The scariest moments were 1) the first time I was told I needed a transplant and I had to go straight to the liver transplant coordinators for the planning of the next stage of my life. 2) That phone call. 3) Every time a medic came near me with a needle.

  2. Vickie Says:

    Hi David,
    I’m trying to find a way to get back to your first blog without going backwards through everyone. I LOVE your attittude and your humour. I’ve been asked to do a blog to help others and I was initially against it because my history has been very serious and I don’t want to bring people down plus I have had bad experiences with people over being ill and on websites. I have a humour blog kiwiflyinghigh,blogspot.com I think now I have seen yours I will have a go as I do think some of the prejudices about liver disease need to be broken down and hopefully others who are going through serious health issues might feel less anxious. Did you have PSC? I have secondary scleorising cholangitis due to previous ops and cholangitis. I also have neutropenia which has never been investigated the whole 14 years I have been in pain everyday. We have just worked out I have had continuous cholangitis but without a temperture or a low temperture. I’m on the second to last antibiotic available. The neutropenia accounts for all the teeth I have lost,thrush,anemia , and constant cholangitis.
    I was born with a choledochal cyst and had my first op at 3 weeks old. iwas in and out of hospital with cholangitis as a preschooler and 2nd op age 4 as the first join had narrowed.(there was no join between the cyst and duodenum which is unusal in this condition-abit like biliary atresia. We had to come to the Royal Free where you were when I was 21 as there was no surgeon available in New Zealand. Unfortunately our house didn’t sell and we had to go back two years later.I had complications of ascities,acute pancreatitis and gangrene in my scar.
    At 24 I was the 23rd woman in the world to survive childbirth with 2nd cirrhosis. My clotting time was 13 mins normal is 3mins. By the time I had my roux-n-y surgery age 32 (finally a surgeon trained in England returned to NZ), the cirrhosis had reversed it self which is rare. A lot of rare things have happened to me! LOL, I was free of cholangitis for 4 years but than it started again and I was in pain everyday and they couldn’t work out why.
    now that we know I can go to hospital if I am in severe pain with no temperature and the iv antibiotics will bring the pain down. I have had two surgeries which weren’t necessary as they tried things to stop the cholangitis. I also had two hepatic ducts narrow 6 years ago and if they had given me the transplant they offered 14 years ago these three ops wouldn’t have been necessary. But its great news I will get a transplant now and can start my life again as I am housebound. I’m very excited and will go home to New Zealand (I have lived back in England for the last three years with my daughter). I could have it here but they are taking a long time to be even honest about what is going on and haven’t even told me I have secondary scleorising cholangitis but have given that tablet to break down the bile acids which they will try for 6 months to see if it stops the cholangitis, I don’t think they are listening about how incapcitated I am. (Kings College Hospital this time.)
    Keep up your great attitude David.
    best wishes Vickie

    • davidkallin Says:

      Vickie – thank you so much for reading, commenting and sharing your views and experiences. I hope you get your transplant soon and can look forward to a much healthier future. I am on holiday in Dorset right now so can’t check out your blog yet but just to say that your blog experiences can serve two purposes. Cathartic for yourself and helpful to others. I bet even writing your thoughts down as a comment on my blog helped you release some of your tensions – a problem aired is a problem shared.

      Obviously I don’t know your full circumstances but for what it’s worth I would say if you get A chance of the transplant then grab it, embrace it, and look forward to a brighter future. It’s coments like yours that make me a) glad that I blogged and b) feel that I should continue – even though, thankfully, I don’t have much to say these days!

      By the way you should be able to pick the beginnings of my story and the background to my condition on a link on the right hand side of my page – if it works. I had various issues but not PSC.

      • Vickie Says:

        David, thank you for taking time out of your holiday for such a nice reply.

        I will set up a site today although I may not write much as I didn’t get much sleep last night again. Friday /Saturday I was bad enough to go to hospital but it takes me all day to set up things ie packing,making up the dog’s dinner as my daughter isn’t good at cooking rice. The dog, Jasper has come out in solidarity and has gallbladder trouble requiring a special diet – chicken and rice.
        My daughter came home surprised to see me still here and I explained it was so late now it would be really busy at the hospital, best to wait until morning. Next morning I was miles better but as usual I’ve started going down hill again, it’s been that type of week up and down. The G.P said to watch over the next two days but try to go in before the weekend if it doesn’t settle. (The pain killers don’t work unless I take them every two hours and after 14 years I’m on very high doses.)
        The last two hospital stays I have had to go home early due to builders coming or my daughter’s holiday (someone needed to feed Jasper.) It would be nice to have a full course of Iv antibiotics and go home without pain for a change.
        I don’t know if growing up with a serious medical condition as you did whether you too will put up with things more than others will and in so doing do yourself a disservice? Or are you just more sensible than me? It’s also a family trait that we tough it out–handed down from my Father who is Scots. It’s a very hard habit to change. My Grandfather went out to Robbie Burns birthday celebrations in immense pain –his ulcer was bursting and got back home and collapsed, as he lived on his own he died. The doctors don’t know how he did it but I know. I’ve had close calls with septicaemia but than part of that stubbornness would be why I am still here. Guess I’m using up my subject matter here and should put it on the site.

        Would you mind if I copy your light hearted style of writing? I promise not to borrow your words LOl. I may try and tackle how people treat people who are ill as I think the claim that people who deal with illness are accepted and treated better than people who have mental illness is a fallacy because I’ve come across lots of unpleasantness not just to myself but to other people I either know or have heard about. But I’ll try to be light about it lol.

        I don’t know how to add pictures etc but instead of music maybe I could talk about quotes from novels or poems and talk about animals. I love music too but don’t want to copy you exactly and I don’t have a good enough memory about songs to do that anyway.
        I hope you and your family have a nice time. I think it was really sweet of your wife to put your favourite treats on your pillow–it makes all the difference in the world to have someone supportive on your journey through life especially a journey such as yours.

        best wishes Vickie (Clearly I’m kidding myself about not writing much.)

  3. Vickie Says:

    ahem, just re read that– um I know how he died and meant they don’t know how he walked to the club and back again!

  4. Vickie Says:

    I’ve set up the blog at vickieandjasper.blogspot.com

    I hope that scar is starting to heal


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