As I related part of the following tale to a friend she said “Sometimes you find yourself in the middle of a movie. All that’s missing is the soundtrack.” I’m not sure what genre our movie would fall into, action and drama certainly, with moments of black comedy and farce but keeping that thought in my head made it all a little easier to deal with, movies like everything else, eventually come to an end.
Neu’s dialysis machine, which takes care of his dialysis through the night, has broken down and he’s back on manual dialysis 4 times a day until a replacement arrives. In the middle of a Monday night, Neu woke suffering a severe stomach pain, so intense he felt he would be sick. He made himself a herbal tea and after a couple of hours the pain passed sufficiently for him to be able to sleep again.
For a peritoneal dialysis patient, any stomach pain is a red alert to the possibility of peritonitis, usually caused by a slip in the hygiene routine carried out before and during the dialysis session, the risk being greater with manual dialysis simply as more sessions are carried out each day. The morning after the stomach pain Neu checked his dialysis liquid carefully and was greatly relieved to see it was crystal clear with no sign of infection. Over the next sessions, it remained clear and the pain didn’t return. All seemed well.
On Thursday evening Neu began his dialysis session as normal but as the liquid was draining, the pain returned gaining in strength until he feared he would faint from it. He abandoned his dialysis before doing a new infusion and was violently sick.
Now if the dialysis liquid had been cloudy we would have suspected peritonitis and the course of action for that is to go to the clinic in Fortaleza, however the liquid was clear and the clinic was closed. Clearly Neu couldn’t go through the night in agony and then do a 2 hour journey to the city in the morning before getting any pain relief. I was worried he might have appendicitis and we decided to go to the local hospital, a 40 minute drive away.
A friend drove like he was in the Grand Prix to get us to the hospital as fast as possibly whilst trying to avoid the worst of the pot holes in the road, Neu crying out in pain in the back of the car and eventually passing out. A bit scary for me but at least it stopped the pain momentarily for him.
At the hospital the young doctor suspected some kind of intestinal obstruction. She wanted Neu to see the surgeon to completely rule out appendicitis but he wasn’t available. Neu was given pain killers and after a period of “observation”, when no one appeared to even look in his direction, we were sent home.
The next day Neu felt a little sore but had no pain to speak of. Being about as stubborn as they come and with a tendency to hope if he ignores things they will go away, Neu had decided he was not going to do a dialysis session that day. Some time back we had several boxes of dialysis solution recalled due to contamination and Neu later told me he feared we had another bad batch, hence his refusal to do the dialysis. I cannot force Neu to do his dialysis and he hadn’t told me of his fears, he simply left the house and didn’t come back.
Neu was restless Friday night, finally falling asleep in the early hours. On Saturday I woke him at 11 and insisted he do a dialysis session, I was not altogether surprised to see the resulting liquid was cloudy, no denying it, he had peritonitis.
Unfortunately there was no one available to take us into the clinic that day but by phone the nurse outlined the dosing of antibiotics from the kit we had previously been given, issuing strict instructions for us to come into the clinic first thing Monday morning.
The pain Neu was feeling came and went throughout the rest of Saturday, each time it came on it was as strong as before but lasted for longer. Neu had now not eaten since Thursday and having had little sleep was looking tired and drawn.
We had organised for the village ambulance to come at 7 am on Monday morning. Luiz, a friend of ours (whose mother is married to Neu’s brother Chico) said he would come in with us. Luiz has cared for patients on peritoneal dialysis so understands the situation and knows the clinic and staff. It was a great comfort to know I would not be facing things on my own.
On Sunday morning Neu woke with the pain building again, by midmorning he asked to go back to the hospital for pain relief. The attending doctor noted the antibiotics Neu was on, gave Neu a quick assessment confirming peritonitis and ordered pain relief. After an hour of “observation” during which the nursing staff mostly observed their phones, the doctor came back and having satisfied himself that Neu really was going to get proper treatment for peritonitis the following morning, he allowed us to go home. Unfortunately the pain relief was short lived, leaving Neu terribly uncomfortable for the rest of the day. In the evening the pain began to ease and Neu finally fell asleep around 11pm. I set about organising things for the next day and tried to get the house in some semblance of order before finally going to bed around 12.30.
At 3am I woke hearing Neu being violently sick again, when I got to him he was obviously in extreme pain and begged me to get the ambulance to come earlier, easier said than done at 3 in the morning when I had no certain idea who would be the ambulance driver or even where the various drivers actually live.
Then there was Luiz, I really didn’t want to go in without him, even more so now with Neu looking so bad, but Luiz was at his mother’s house which is a half an hour’s walk away if you cut over the dunes. It was a moonless night and still pitch black outside, not the best of times to be tramping about over soft sand and scrub.
Neu suggested I go to his parents house next door and wake his father to ask him to get Luiz but I knew if I did that it would wake his mother too, she has dangerously high blood pressure and if she heard that Neu was bad again she would have hysterics and probably pass out, Neu’s dad would no doubt rush off to get Luiz, leaving me to deal with his mother, frankly I could do without that. I decided it would be simpler to go and get Luiz myself, he could then organise the ambulance while I went back to Neu.
Neu was very worried about me heading out into the dark of the dunes, actually I would be more worried about heading out into North London at 3 in the morning but I have done that often enough. The only thing I was likely to meet on the dunes was animals. I was nervous of snakes or coming across the odd cow lying down in the sand or wild donkeys, which despite looking sweet can give one hell of a bite but Neu was more worried about dogs, of which there are sometimes large numbers loose at night.
I set off with my long walking stick, leaving my dogs behind so as not to attract others. I couldn’t find the torch and so was going by the little light the stars were offering, there being no street lights once passed the end of our road. I went walking as fast as I could into the inky black, swishing my stick in the hope of scaring off anything in my path, while trying not to fall over the uneven ground.
I know the route to Luiz’s mothers house well but half way to their house I came across a fence, there has been a lot of building work in the village and the fence was new to me. I began to walk one way along it but couldn’t see the end, desperate not to waste time I changed my mind and went back, by what I knew of the lie of the land, the fence probably ended sooner that way. It was warm even so early in the morning, I was very hot from the effort of fast walking over soft sand and from being dressed in jeans and long sleeve T-shirt, my heart was pounding in my ears and I was troubled by black thoughts over Neu.
I came to where the fence turned at right angles and began to follow it up the 2nd side when my foot hit water, I realised I had come to the stream that cuts through the land but now had to find a place to cross it before it widened into the lagoon, unfortunately it was still too dark to make out anything clearly. The stream has steep banks in places and thick vegetation, including a particularly vicious, super big stinging plant which I really didn’t want to meet up with having experienced it before.
I found a place where the ground at least looked clear of plants, relatively level and not too churned up by cows and headed into the water, immediately loosing one of my flip-flops. ARGH!!!! I felt down into the mud where I thought my flip-flop would be, nothing. Felt a bit further afield and still nothing. A deep breath, a silent prayer and peering into the gloom I managed to make out the shape of the bloody thing floating towards me. Now soaked to my knees but with my flip-flops I got out of the stream and headed on. I passed a house where a fisherman was just coming out of his door, if he saw me I probably gave him pause, as being dressed all in black I would possibly have appeared as no more than a floating head.
I got to the house and was grateful that I could make out Luiz’s form in a hammock outside, I had worried about waking the whole house by calling for him, though I knew Chico would shortly be up anyway to go fishing. I called Luiz in a sort of loud whisper, causing him to leap in fright and the dog to bark. The house was awake in an instant and I, having explained my mission to Luiz and Chico who had appeared by my side, promptly burst into tears.
Within minutes Chico had organised for Luiz’s brother to take me back to Neu on the motorbike, Luiz was heading off to the ambulance and his brother would meet him there to bring him up to me after he’d spoken to the driver. It was a much easier journey going home.
Neu looked if anything, worse than when I had left him, he was now unable to stand, pain was etched on his face and his lips were white, he’d been sick again. Luiz arrived and between us we got Neu dressed, the ambulance arrived shortly after. I woke our son and told him we were having to go to the hospital earlier than expected, that the alarm was set and when it woke him he should get dressed and go to his aunt’s house (also next door) he smiled, told me he loved me and went back to sleep. I didn’t like leaving him alone but then with 6 dogs in the house he was hardly that.
It was now nearly 5am, Neu was lying in the back of the ambulance with Luiz and me sitting on the bench seat beside him, every jolt and jerk in the road had Neu screaming. The ambulance driver did his best to avoid the worst of the bumps but it was impossible and before long Neu was going out of his mind in pain. Luiz and I were doing our best, urging him to squeeze our hands, encouraging him to breath through the pain, Luiz mopping his brow and both of us praying for all we were worth.
Neu was now looking increasingly at risk of going into shock and he kept passing out, we’d bring him round again which seemed cruel but we couldn’t risk him slipping into unconsciousness, we had a long way to go. At one point Neu seemed to lose all connection with us, he no longer knew who we were, was saying things that didn’t make sense and staring wildly about. I am not one for panic but I seriously thought I was about to lose him and was so grateful to have Luiz by my side, he kept his fingers on Neu’s pulse which he assured me was strong, a little fast but strong, I clung to that.
As the sun rose Neu slipped into another state, he smiled and mouthed that he loved me, that it would be alright, he was still grimacing with pain over the bumps but no longer screaming which was a relief for all of us, though I got a strong feeling he was not really in his body at all and was almost as worried by that.
We arrived at the clinic around 7, the clinic was open but only security staff on duty. The guard said he doubted any nursing staff would be in until 8 but at least Luiz and I were able to get Neu onto a bed and give him a degree of comfort. Unfortunately the nurse was held up in a traffic jam, no doubt brought on by the sudden, intense down pour that had hit as we arrived at the clinic. It was after 9 when Neu finally got some pain relief.
His doctor came to see us a little later, understandably she was not happy that he had not done his dialysis on the Friday and told us off for that and for not coming in then, she was right and her anger at us was only from concern for Neu. Peritonitis is a serious infection, prompt treatment goes a long way to a positive outcome, if Neu didn’t respond to the antibiotics he could end up in hospital having his peritoneal catheter removed and having another inserted into the vein in his neck to do hemodialysis until the infection was cleared. There would be no guarantee that he could return to peritoneal dialysis as the peritoneal wall can become too damaged by infection. In the worst case scenario, peritonitis can and does kill.
Neu was put on 3 different antibiotics, 1 taken orally daily, 1 injected into his dialysis solution at every session and 1 injected weekly. After more pain relief we were sent home to return the next day.
Back in the village the health worker organised for the municipal ambulance to come, unfortunately it would arrive at 4.30am, another early start then.
By Wednesday the doctor was sufficiently pleased with Neu’s progress to allow us a day off, to return on the Friday but with a warning that if Neu’s dialysis liquid wasn’t completely clear by then, he would have to go into hospital for the catheter to be removed.
The ambulance man on Tuesday was a kind and careful driver, Wednesday’s driver was an accelerator brake man and we lurched our way to and from the clinic. I was grateful that Neu had such strong pain relief but by the time we reached the clinic I was exhausted from holding onto the bench seat to avoid hitting the back doors as we shot forward or flying through to the front as he hit the brakes. On leaving Fortaleza the driver went up the access road to a viaduct, decided it was the wrong road and so reversed on the slip road, with all the traffic coming up behind blasting their horns. A little further on and the back doors flew open, I had visions of Neu sailing out the back into the oncoming traffic and was shouting to the driver who didn’t seem bothered, telling me not to worry it was just that the latch was broken, Oh you don’t say! I was left holding the door shut until he pulled over, Neu musing on the irony of recovering from peritonitis only to be flung from a moving ambulance. I told you there was an element of black humour and farce.
Friday came, the liquid from the first dialysis session was dark and cloudy. We left for the clinic with Neu’s bags packed for hospital and him very depressed. At the clinic Claudia, one of the lovely nurses, soothed his fears as she administered his antibiotic via a drip so slowly that Neu was a little late doing his 2nd dialysis, she’d given the antibiotic time to work, the liquid was clear enough and Neu was allowed home.
The doctor had been surprised by the level of pain Neu was experiencing but over the weekend the pain continued. I was increasingly worried that we were missing something, last time he had the infection the pain went immediately the treatment began, was this just peritonitis or was there something else going on?
On Tuesday Neu was booked for some exams for the transplant process, this meant another early start as we had to be at Fortaleza general hospital before 7am for a chest x-ray and an ECG, then to the dialysis clinic for more antibiotics. In the afternoon he would have an abdominal scan at another clinic, maybe that would show something.
They say the English like to queue but I have stood in more queues in Brazil than I ever did in England and the hospital is one of the worst places for it. I told Neu to sit and wait while I stood in the long queue to get in the building. Almost at the door a man checked the exam slips I held and said that while one of them was in the building where I was, the other exam was held in another building and that it would be better to go there first. So we went and stood in another queue. Neu was given a number and told to sit in another queue, before being called into the X-ray department where he sat in another queue. Back round to the other building where we queued again, were sent upstairs where we queued again, Neu getting paler by degrees as the pain returned. Finally he got his ECG done and we left for the clinic. Neu had not yet done a dialysis session as we’d left home so early and wrongly assumed we would get to the clinic around 9. It was nearly 11 by the time he did his session and the resulting liquid was once again dark and cloudy, not good.
Neu’s scan was booked for 2.30, he was not seen until nearly an hour later, at least the doctor who carried out the scan was thorough but the scan showed nothing to explain the pain, everything was normal and looked good, that’s something anyway.
We headed back to the clinic to carry out a 2nd dialysis session and were amazed to see crystal clear liquid. We go back to the clinic on Friday, the pain hasn’t stopped but the period between bouts is increasing and he is feeling very much improved. The liquid continues to be clear and his appetite is returning. It is possible the pain is caused by a reaction to the antibiotics, though that wouldn’t explain why he had the pain before showing signs of peritonitis, of course the two episodes might not be connected at all.
On the way home on Tuesday we got a telephone call. Due to the intermittent signal and the noise of traffic, Neu found it hard to hear and assumed the woman was calling about the dialysis machine, however having asked him questions about his dialysis her final comment to him was that he should be prepared, the call for him to receive a transplant could come at any minute now and to make sure he kept the phone with him at all times. He won’t be allowed to undergo surgery until he is free of peritonitis but fingers crossed we are over the worst and he will soon get a transplant, then with luck our movie will have a happy ending.