I returned to my second home The Royal Liverpool Hospital for clinic this morning.  The usual, small urine sample, being weighed and over an hour wait.  I didn’t mind the wait though as I had specifically asked to see the top consultant.  I got called in, filled him in about the past couple of weeks and my chest saga, he didn’t seem too concerned.  

He said as long as I wasn’t coughing up green stuff I would be fine to go ahead with the operation for my fistula on Friday, but he would rather give me a local anaesthetic, de Ja vouz again.  I said I would rather be asleep but if he was the one doing the operation I wouldn’t mind being awake (this would not be the case if it was another registrar or doctor).   We agreed that I would have a local anesthetic (after some convincing) he then took a quick look at my arm and soon changed his mind. Right let’s pop you off to sleep! He said the scar on my arm will be quite wide and he can only give me so much local anaesthetic and would not be certain that he would have enough scope to cover the area for me to be comfortable and also to complete the operation.  So we are back to square one, I am having a general anesthetic, he is still quite confident I will be allowed home on Friday evening.  I will be sure to ask for plenty of anti- sickness meds. 

We then briefly spoke about my holiday and when I would be starting dialysis. He ultimately said that all my symptoms would be better controlled with dialysis but we can alter my immunosuppressant drugs once my fistula is matured.  He said that when my fistula is ready (in 6-8 weeks) I will not necessarily have to start dialysis immediately.  My function is 19% at the minute and once my dialysis access is ready he will reduce my anti-rejection drugs in the hope that that may bring my function up and delay dialysis slightly.   Tacrolimus (one of my anti-rejection drugs) is fantastic for stopping transplants rejecting but is also known for scarring the kidneys, he is hoping if we reduce this slightly then I may get a few more weeks dialysis free. 

We can’t stop all my anti-rejection/immunosuppressant drugs altogether and immediately as my kidney would completely reject and would need to be removed.  If we do it gradually it is likely the kidney will adjust and just fall asleep and not need removing.   There was also mention of me lasting till after my holiday if this process is successful.  This is by no means set in stone.  I will be monitored very closely, and it will all depend on how my blood results are.  Once my fistula is mature and ready to use I will be able to start dialysis immediately if the need should arise (for example if my kidney lost function altogether or I collapsed and needed emergency dialysis). This is the ideal situation as I don’t want a neckline in place as these are prone to infections. 

So all in all a relatively positive clinic visit.   Although I don’t have a time scale set in stone (which I would quite like as I like to be prepared and organised)  I do have some flexibility if I need it and a backup plan for an emergency again if I need it.   


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