Filling in the gaps… (Part 1)

I had my first graft inserted in an operation on the 12th August… It seems like a lifetime ago!  I ended up having a rapid graft fitted and was told that it would be used 2 days later.  This still came as a shock as it wasn’t the original plan, we thought we could buy 6 more weeks and use the other graft. 

I say it was a shock but of course we knew things hadn’t been right for a while it was just the smack of reality in the face that it was happening and it was happening now.  The operation itself was fine but the pain after was unbearable and the thought of someone putting needles into an already swollen arm was terrifying me.  By this point I couldn’t control my potassium, bicarbonate or blood pressure and my kidney function was hardly anywhere to be seen.  It was decided I needed a femoral line.  I was devestated that I was having to go through another procedure and this time whilst I was awake.  Getting ready for that intervention I had to have an anti-bacterial wash.  I’ve never felt so weak in all my life.  Trying to balance oxygen, a drain sticking out of one arm and a drip in the other arm I was determined I didn’t need any help and shouted at any of the nurses who tried (apologies for that – I blame the anaesthetic). 

The procedure to insert the line went without a hitch and as soon as I came back to the ward I immediately went onto the dialysis machine for emergency treatment.  Everyone was rushing round, checking obs and sorting the bleeping machine.  It was pretty scary.  In the calm of it all though, A held my hand and my Mum and Dad smiled at me from the bottom of the bed and I knew all would be ok. I lasted 45 minutes on the machine before it decided to clot and my blood pressure dropped.  

The next day the time had come for my graft to be needled and I’m not going to lie, it was traumatic.  Not only for me but my poor Mum watching me (I’ve never seen her look so pale).  I wasn’t offered any numbing solutions, I just had to grit my teeth.  This was it. 1 stab. 2 stabs. 3 and 4 stabs and when I say stabs I mean my arm being gripped and the large dialysis needles being forced through my skin, vein and then the plastic tube.  To say it was uncomfortable is an understatement, I felt sick and my poor Mums legs nearly went from beneath her. 

4 attempts later and the needles were bringing out tiny clots from the graft, deep down I knew this meant only one thing. The graft had clotted and I knew the procedure to unblock it was painful.  

I left the dialysis unit feeling totally deflated, wondering how I would ever needle myself and not looking forward to another painful procedure.  First they would need to do an ultrasound scan of my arm to check what was happening and to confirm that the graft had completely clotted.  

I had to wait a few days for the scan as my arm was so swollen and painful.  In the meantime I had daily dialysis through the femoral line in my groin.  I was sick every session and clotting became a huge issue, I lost blood in the machine every time it clotted (that is why I am so anaemic now).

The scan showed that indeed the graft had clotted and was no longer working.  I had prepared myself for the procedure to unclot it and resigned myself to the fact this was another bump in the road.  In fact reality was much worse.  All the doctors came round and said that’s it. We’ve done all we can, we can’t unclot it, it’s too dangerous and we are going to insert a tube in your stomach for Peritoneal Dialysis.  (The dialysis you do at home, exchanging fluid from bags into your stomach – the dialysis I DID NOT want to do.) 

I just cried.  This is not what I had planned.  I didn’t want this type of dialysis and I certainly didn’t want the tube sticking out of my stomach.  After a bit of thinking and realising that I was totally against this next plan (it’s my right to choose and it’s personal choice). The surgeon decided he would risk another surgery as I was so adamant. The next day I would go into surgery for my graft to be removed and another one inserted (this one would be needled after 6 weeks.). I also had to sign the consent form for a neck line to be inserted on the right side of my chest/neck. 

My femoral line came out that day and although extremely weak I was allowed home for the night before going to theatre the next day.  

I waited all day for theatre and went down around 3.30pm. The next thing I remember is waking up…. Waking up whilst I was still in theatre….. I’ll leave that story for the next blog… 

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