After 50 weeks embedded in my chest my ‘triple lumen Hickman line’ is coming out tomorrow, scheduled for 14.30.

First of all I will have my last treatment through it which is immunoglobulin (IMg) antibodies to help boost my immune system.

Post transplant you have no immune system to speak of and effectively your body is taken back to the equivalent of a baby with the relatively small amount of donor cells introduced. That means all the immunities we build up over time no longer exist and at some point soon I will have all the normal childhood innoculations again.

In the meantime that comparatively small amount of cells are trying to produce red cells, white cells, platelets, neutrophils etc for a 6ft 1inch body instead of a baby sized body so it is hard work and they have to have time and support. It is pretty normal for the IMg transfusions and this will be my third session I think with a full dose this time as I have not had any previous adverse reactions. I will be on the drip for nearly four hours then head up to surgery to have the line removed.

After today any further IMg treatment will require a needle and canula in my arm but that is not too much of a problem as it should only be every three weeks so the veins get plenty of time to recover. Additionally as I attend Clinic every three weeks now instead of weekly I only have blood taken off every three weeks and so again there is little pressure on my veins, and having lost a lot of weight my veins are easy to access – the best compliment I get in hospital is ‘You’ve got lovely veins’ but then I’ve learned to take the wins when you get them, whatever they are!

Pick a vein, any vein!

Back to the line though, and at the time it was put in I was so scared and all of the assurances that it was a minor procedure and that the surgeon had done thousands before without a problem and was an expert unfortunately counted for nothing for me.

Two years previously a cocky, arrogant surgeon (just my opinion of course!) had been saying the same thing about the minor operation he was going to carry out on Lisa and that there was nothing to worry about as he was a brilliant expert, had done thousands of them and there would not be a problem….yet ten hours later instead of being at home Lisa was being rushed into emergency surgery on the point of death as the surgeon had made grievous errors – sticking a verres needle through both sides of Lisa’s stomach, and two if not three parts of her bowel.

She had put up with the excrutiating pain of stomach acid and bowel contents leaking into her abdomen for 10 hours while the ‘brilliant’ surgeon refused to accept that there was a problem.

Fortunately Lisa’s life was saved by a genuinely brilliant surgeon after four hours of surgery, flushing her abdominal cavity of half a litre of blood, bowel contents and stomach acid and sewing up all the wounds. Eight days of intensive care followed and we nearly lost her at least three times, a further week followed on a ward and still today she carries the physical scars and mental scars of the surgeons mistake. So, no, I was not assured at all and once we had relayed Lisa’s story the chap inserting my line understood fully why that was and to be honest was then brilliant at handling the situation and as the procedure was utterly trouble free, he was clearly very good at what he did, taking suitable care and attention.

Unfortunately/fortunately I am now in the position that the line has to come out – so it is another ‘minor procedure’ of which the surgeon has done thousands – funnily enough that is still of no comfort despite the successful yet painful endoscopy operation I had a few weeks ago via my Gentleman’s Appendage.

The line enters your chest and is then run through to the main artery above your heart so that whatever ‘fluids’ have to be introduced into me would go straight into my main bloodstream and be distributed quickly in the flow without damaging the smaller veins in your arm or hand if a cannula had continued to be used.

I have got so used to the line being used and it is all very straightforward – it actually feels more safe having it in than imagining what it will be like having it taken out. Yet keeping it in still means having the three lumens flushed out and the dressing changed once a week and when hopefully the only use will be the three weekly IMg treatment which is all very benign, certainly compared to the vicious chemicals of the the chemotherapy.

Not the healthiest way to lose weight – but it does prove the adage that if you put less in than you need you WILL lose weight! Easier said than done though…

Having it removed will also allow me to do more physically – maybe soon even get on a rowing machine or go for a light on/off jog. I’ve done a fair bit of DIY stuff and gardening stuff recently and am still recalibrating what overdoing it means.

But the thought of a light, 5 min erg cheers me up a lot as does a 20 step on 20 off 200 step jog!

Not least I will be able to have a proper shower without worrying about getting the dressing and line entry point wet. The latter will be a real joy once the removal wounds have healed, for me and for Lisa!

It will also be a final goodbye to the brutal chemo which had to go in via the line and which has so ravaged my body since treatment started. OK, so in theory I could have done with weighing less at the beginning of all this in normal life but I am glad I was a chunky monkey, indeed in terms of body fat percentage I was a proper fatty as my percentage was 28% – that is actually obese and for me that is a statement of fact. No-one could ‘fat shame’ me as I knew I was fat and looking back I’m pleased I was as after my transplant I barely ate a single thing for four months. Literally nothing and often what I did get down I would throw up again; in hospital the feeding tube wasn’t so good either as I could feel the fluids going down and it made me gag…..there is an un-said ‘Ian-ism’ there!! I was like something out of the Walking Dead and just do not know how Lisa held it together with me at home most of that time.

Anyway, the line is now coming out – yes, I am a bit panicky at that thought and yes, I can’t wait and that is the nature of this bloody thing. An ongoing conflict in your head on so many things and much like the ocean you just have to find a way to ride it out and take the next stroke – the weather may be forecast to be better tomorrow but it could just as easily be even shittier – take the next stroke, just like in normal life, and if that doesn’t help go have a nice warm shower!

Then…..fat boy

Now………Gollum

Still counting down to coming off FB so please do subscribe below.

Share this too if you wish – it seems some of my story has been helpful to a good few people so far.

Next on the blog…….more of the book…..

xx

 

Category:
Challenges, Ian's Blog

Join the conversation! 12 Comments

  1. Good luck Ian, will be thinking of you. Let’s hope there’s no drama of capsizing this time and hope that crossing the finishing line is within you reach. Willing you on every step of the way, nobody deserves it more. Let those brilliant doctors who have worked their magic so far continue to do so 😘

    Reply
  2. Good luck Ian xx

    Reply
  3. Praying for a successful op and a full recovery. Enjoy your shower!

    Reply
  4. Genuinely moved by reading that. Good luck mate from both of us and if you need a rowing (I’m not steering!) or running support partner let me know. We’ll maybe wait until after you’ve had that shower !

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    • Cheers big Fella – recommend you read the ‘book excerpt’ blog that’s coming out soon, there’s a reference in there to rowing tekkers that may resonate with you!! 😉

      Reply
  5. Thank you for sharing your journey with us – I hope today went well x

    Reply
  6. Wow brave, honest and inspiring all the best for the op 🙏

    Reply

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