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Having written of our drama with Neu’s peritonitis, I really thought we were out of the woods but I was terribly wrong.

On Sunday morning, the pain that has been plaguing Neu on and off for weeks came back and sadly the dialysis liquid clearly showed sign of infection again. I rang the 24 hour nursing team and spoke to nurse Valeria who rang Neu’s doctor for advice, which was that Neu was to go straight to the Hospital Geral in Fortaleza as she suspected that the infection had colonised the catheter and it would have to be surgically removed. Neu would have another catheter placed in the vein in his neck to do hemodialysis.

We set off for the city, Neu exceedingly glum as he has so wanted to avoid hemodialysis. It will mean coming into Fortaleza 3 times a week for the sessions which last for 4 hours at a time. Add on the 4 hour round trip and we are looking at the whole day. Also crucially for Neu, whilst on hemodialysis he will not be able to fish.

We arrived at the Hospital Geral around 1pm and were seen quite quickly as it was obvious that Neu was in serious pain. The first doctor was fairly sympathetic but called for what I assume was a more senior doctor. He was furious we had been sent to the hospital and said we should have gone to our local hospital. I explained that Neu’s doctor had ordered us to come but it cut no ice with him and he sent us away with very short thrift, telling us to go to the UPA (which translates roughly as unit of first assessment). We went to the nearest one which was a pre fab building in what looked like a demolition site.

We were very swiftly seen at the UPA and the doctor, on seeing the dialysis sample I had brought with us, agreed that Neu definitely had an infection. He ordered pain relief, blood and urine tests and we were told to wait on the results, if they looked ok it would be better for Neu to go home and go to the clinic the next day for treatment. Knowing that Neu needed antibiotics, I rang nurse Valeria so she could speak to the doctor, she requested that Neu receive 2 specific antibiotics, the doctor said they were expensive but he knew they had them and would ask if the boss would permit it.

We sat in a freezing room (air-conditioning set to minus 40 again) until 10.30pm when a different doctor said Neu’s blood tests showed no sign of infection, we could go home. I asked about the antibiotic, she said Neu had been given one on arrival (not the ones Valeria had asked for) and that as his blood test was fine, she could not give him the others.

Thankfully our friend who had driven us in had waited for us. I knew he was far from happy to be in such a run down part of Fortaleza at that hour, armed hold ups at traffic signals and crossings are a very real threat in the city at night.

It was well after midnight when we arrived home, we’d eaten nothing since breakfast and were exhausted but had to do a dialysis session which showed that the infection was worse. It was only then that I noticed Neu’s blood test showed his hemoglobin level was very low at 6.6, putting him well below the level where a transfusion could be considered desirable (a normal level should be between 13 and 17).

The following morning we went back to the clinic where Neu’s doctor was furious with the attitude of the Hospital Geral. I showed her the blood tests he’d had done but she said they were unreliable as Neu quite clearly had an infection which hadn’t shown up. The tests were done again and we were told to pick up the results first thing in the morning the following day (Tuesday) from the clinic, before taking Neu to a nearby hospital where he was booked in for surgery at 6am. After surgery Neu would be released from hospital around 2pm to go back to the clinic for his first hemodialysis session.

We got back home late again and that night the pain came back with a vengeance, Neu was unable to eat anything again and got very little if any sleep before the ambulance came to pick us up at 4am. By the time we arrived at the hospital Neu was in such pain, every little movement hurt.

I asked several times if Neu could receive pain relief but was told that until the surgeon saw him they couldn’t give him anything. At 10am he was finally taken for surgery. As it would last about an hour, I stepped out for a breath of air. When I got back, Neu was in his room but the surgeon had refused to do the surgery as Neu’s hemoglobin levels were so low (6.6 again). We were told to go back to the clinic for them to arrange a transfusion.

We got back at the clinic at around 11.30 where Neu finally got some pain relief. As Neu is on the transplant list, transfusion blood has to be rinsed free of markers, I can’t say I’m sure what that actually means in terms of what they are rinsing out and how they do it but it’s to stop the transfused blood causing rejection of a kidney that Neu might receive and is otherwise perfectly suited for. The blood is rinsed to order and is a slow process, so we had to wait for it to be delivered.

The blood arrived just after 6.30, the lovely Valeria had stayed after her shift to set the transfusion up and then left us in the capable hands of the hemodialysis nurses. Neu received 2 bags and before the first bag had drained, the colour began to come back into his face. Thanks to some seriously strong pain-killer he was able to relax a bit for the first time in days.

Unfortunately the ambulance that was to come and get us was having to come from Beberibe, the town closest to where we live. The controller couldn’t seem to understand that the clinic would close at 8.30 and we needed the ambulance to be there before then. I was told to ring control when we were about half an hour away from being ready. More fool me I didn’t realise that he would order the ambulance to leave at the same time Neu finished his treatment. It takes at least an hour and a half to drive from Beberibe to the clinic and so there we were, the clinic closing and no ambulance in sight.

While we were waiting the duty doctor at the clinic said it was ridiculous for us to be going home and coming back the next day, he was seriously worried about Neu and ordered us to go the Hospital Geral straight away. He wrote a covering letter and told me to refuse to leave the hospital, create a scandal, do what ever was needed to get them to admit Neu. I wasn’t confident of this tactic as I was so tired I couldn’t think straight.

There was no sign of the ambulance and now several members of clinic staff had stayed behind to check we were safely on our way. The clinic stands in a very mixed neighbourhood, gated tower blocks of luxury apartments and then odd groups of very run down properties, with a large population of drug and alcohol abusers who like to hang out on the pavement in front of the clinic, hence the clinic staff didn’t want to close the building until we had been picked up.

The duty doctor said he’d order a private ambulance to the Hospital Geral, this made me nervous on two counts, who was going to pay for it and what happened if the hospital refused us, we would then be stuck in a dangerous area of Fortaleza in the middle of the night. The Doctor said he would cover the cost and prohibited us from leaving, if we refused to leave, they would have to admit Neu. This idea was cancelled when the ambulance from Beberibe finally arrived.

I explained to the driver that we had been ordered to the Hospital Geral, he was not happy and phoned the controller, who was also not happy, so there was I feeling stressed to the 9th degree having to argue with those two about the rights and wrongs of going to the Geral but when I declared I was only following doctors orders, they had to back down.

At the Geral the ambulance driver was impatience personified and said he would not wait for us, if we weren’t seen immediately he was leaving, he rang the controller again who asked to speak to me and started blabbing on but I was not in the mood to listen so handed the phone back to the driver. The receptionist was lovely and put Neu in the orange category, which requires that he be seen within 10 minutes but the Dr we saw was dismissive. I knew we were on a losing streak, she said that Neu was the responsibility of the dialysis clinic, that they would have to do the surgery to remove the catheter, the fact that the clinic does not do any type of surgery cut no ice with her. Her final argument was that the hospital does not have the equipment needed to remove a catheter, which is just stupid, what equipment can you need other than anasthetic and a scalpel?

I lost my temper and owing to being so tired, also my Portuguese. I let rip with a torrent of English abuse which did nothing to get Neu admitted but did make me feel a little better. My scene was attracting the security gaurds and fearing my imminent arrest, I reluctantly and exhaustedly gave up, burst into tears and needed Neu to guide me to the ambulance to go home. To say I was frustrated is putting it mildly, I was seriously worried about the possibility of Neu dying, he is incredibly strong but the body can only take so much and all this was putting a tremendous strain on his system.

We arrived home at 1am, fell into bed and couldn’t sleep. At 6 we were up again, preparing to go back to the clinic to see what they had managed to organise. This time the news was a little more encouraging, Neu was booked back into the private hospital for surgery in the afternoon. The clinic staff offered to teach me Brazilian Portuguese swear words for future use, whilst with the help of pain relief Neu slept until it was time to go to the hospital at 4pm. By 6pm the surgery was complete.

The surgeon came out to speak to me, the surgery had gone without any problems but he suspected appendicitis or something intestinal which I have been saying since the beginning. As this was a private hospital operating on a public health patient, the only surgery that is covered by the contract is the insertion or removal of catheters but the surgeon felt that as a matter of urgency Neu needed a CT scan and possibly surgery. He said both these things could be done there that night or the next day but there would have to be an agreement over payment. I was to leave it with him, we were there for the night no matter what happened later.

The following morning after a sleepless night (over zealous air conditioning again) Neu was discharged, the attending doctor said we were to go back to the dialysis clinic. There we were told that Neu would do a session of Hemodialysis and was then to report to the Hospital Geral Emergency again. My heart sunk like a lead weight.

I was assured by the clinic doctor that our reception at the hospital would be different, Neu was being sent with a covering letter claiming suspected appendicitis, they were bound by law to investigate. I can’t say I felt overly optimistic but we had no choice. We took a taxi to the hospital, Neu was given pain relief before we left the clinic but we were both stressed, tired and fed up with the whole damn thing.

At the Hospital Geral we were once again pushed up the queue by another nice receptionist who again marked Neu as urgent. We were seen within the time frame but had no sooner begun to explain, when the surgeon was called away to an emergency. We sat in a side room and waited for over an hour.

Finally another surgeon came to see us, he agreed that Neu needed at the very least to be kept in for observation and a scan. He said there were many possibilities but he suspected that the end of the catheter had begun to irritate a spot internally, he had seen this in a number of other long term peritoneal dialysis patients.

Neu was admitted to the Hospital Geral on the 3rd attempt at 5pm on Thursday the 11th of June.

Little did we know our fun was only just beginning.

Neu received more pain relief, had some blood taken and then we sat for 7 hours in the medication area. Just after midnight Neu was given a bed, our relief was short-lived. Neu, along with about 70 other patients, had a bed in a corridor. Neu’s was in front of swing doors, which bashed into his bed every time anyone came through them.

Neu's bed in the corridor Hospital Geral, Fortaleza.

Neu’s bed in the corridor
Hospital Geral, Fortaleza.

In Brazil when someone goes into hospital they must have a companion. This person can be family, friend or someone paid to do the job and is responsible for the day-to-day care of the patient. The companion sleeps (if that’s possible) on a chair by the patients bed. It seemed there weren’t any more chairs, so I slept standing up for a bit, until the person with the patient in the next bed offered me his chair.

Don’t get any ideas of comfort, the chairs are the bog standard plastic garden type. I was tempted to get into Neu’s bed with him but his mattress was so narrow it wasn’t possible. We spent the night listening to our distressed elderly neighbour demanding to go home because she had to light the fire and put the beans on to cook.

Patients line the corridors. Hospital Geral, Fortaleza.

Patients line the corridors.
Hospital Geral, Fortaleza.

On Friday morning we saw a very nice nephrologist called Dr Rubin. After carefully listening to all we had to say and having given Neu a very thorough examination (during which Neu nearly leapt out of bed when the Dr pressed on his abdomen) he ordered a CT scan for as soon as possible. The machine at the Geral was broken, so in the afternoon Neu was taken by ambulance to a private clinic.

Late Friday night we were moved from our place in the corridor to a new place in the corridor. Now we were beside the lifts. All night we had people coming and going, chatting and laughing, doors opening and closing, trolleys clanging in and out and a cold, cold draft every time the lift stopped on our floor.

They don’t turn the lights out, or even down at night and with no windows to the outside, it was monotonously, brightly the same. I slept when ever I was too tired not to, could never guess what the time was and had to think about it to work out the day.

At 4am Sunday morning we were woken and moved from our less than cosy place in the corridor, to the emergency observation unit, a ward at the end of the corridor with 28 beds. I noticed that the coloured marker on Neu’s identity paper on the end of his bed had gone from green to red. I asked a nurse about it and she said it was so they could see a patients status at a glance, red being most critical, not an encouraging thought.

Now Neu, like the other patients in the unit, had a very fancy state of the art bed, it could tip this way and that, go up or down, become like a chair, all with a press of a hydraulic switch but for the companions it was tough. We got our plastic chair but were wedged between two beds where we were constantly being asked to move as we were in the way of the nursing staff. I don’t think I slept for more than an hour at a time (if that) for the first few nights in there and my legs and feet became so swollen from sleeping sitting down, I was shocked to see I had developed elephant feet.

It was also absolutely freezing. One of the nurses told me that I was sitting in possibly the coldest place in the hospital. Something was wrong with the air conditioning vents, one side of the ward was very hot, so the temperature coming through the vent above me was set to rival the hardest Russian winter in the hope that the cold air coming in would waft over to the hotter part of the ward. I was wearing jeans and a T-shirt, plus a cardigan, sweat shirt, socks and two blankets (I had to go out and buy them as I had only been given a sheet) and I was still cold.

The poor old lady in the bed next to me felt like ice and shockingly, her companion while wrapped in a coat, seemed to think the old lady was fine with only a thin sheet. When the companion went out for a break I got several more sheets to cover the old  lady with, she rewarded me with weak gummy smile.

There was no dignity for the patients on the ward, bed baths (responsibility of  the companions, sometimes with nursing help or that of other companions) were given with cold water in full view of everyone. A sheet might be hung as a screen at the end of the bed between two posts but the patient, male or female, was still exposed to all the people on either side of them. While we were there a patient lay dying, his distraught daughter was given no privacy with him and the ghouls attracted by her cries came to watch. Remembering the pain of my own fathers death in a thankfully very different London hospital, the scene playing out before me was heartbreaking.

Monday was filled with umpteen new doctors or nurses examining Neu, all wanting to hear his history over and over again.

On the Tuesday afternoon we were told by a surgeon that the CT results had come back and not revealed anything, leaving them unsure about the initial cause, but as the catheter was now out, the antibiotics should resolve the infection. Neu was no longer experiencing pain when his abdomen was pressed and the wound from his catheter removal was healing cleanly.

As Neu was not in need of surgery, he was released from surgical care but we needed the nephrologist in control of his dialysis at the hospital and the clinical doctor in charge of his overall well-being to agree to his discharge before it could happen. As we hadn’t seen either of those doctors that day, we were stuck there for at least another night. His coloured tab returned to green which was a relief.

We were not permitted to bring in any food to the hospital, including fruit, snacks, sweets or drinks (even water) and the only food available was that prepared by the hospital kitchen. There is no choice of this or that for breakfast, lunch or dinner, it’s a one dish option. Neu, who should be on a salt free diet, had been given a sachet of salt with everything he was offered and in a place where so many of the patients (and probably their companions) suffer from diabetes, I only managed to get coffee without sugar on two occasions.

I have always been allergic to school meals (joke) but hunger forced me to try the soup offered to the companions, the salt content was staggering and my mouth burned with it. I could only go out of the hospital to eat when Neu was doing dialysis, so I was starving as well as being dead tired.

Hitler’s Brazilian female relative was in charge of the patient’s meal trolley, for days Neu was given only hot rice water to eat, ok so at first they thought he might need surgery but the surgeon had put him on a light diet after Monday and after Tuesday he was able to eat everything, but Mrs Hitler wasn’t having it. Every time she came round I would have an argument with her, needing one of the nurses to tell her he could now eat. One day she arrived while I was not there, offered Neu his rice water, when he refused she said he could have the soup, when he refused that she literally threw the polystyrene dish of food at his bed, he was tempted to throw it back at her.

One day another dinner lady came round, she couldn’t have been more different to her Gestapo colleague. When I explained to her how fussy Neu is over food, how he would definitely not eat the dried up, grey looking bit of stuff that was said to be fish, she became quite panicked as she didn’t have anything else she could offer him, explaining to me that kidney patients are not allowed to have any of the dishes with meat in. I assured her that Neu would probably only eat the rice and beans that came with the meat dish and so with my promise that I wouldn’t let him so much as touch the meat, she gave me one of those dishes. I tried the meat and decided that as that would be the carers meal for the day, I would go out for my dinner again, all this eating out was costing me a fortune.

On the way round to the rather grim canteen, we companions passed the ranks of those patients still in the corridor. Some were placed where building work is being carried out, there was no ceiling above them, cobwebs hung from the pipework, wiring and air conditioning ducts all exposed above them. The constant noise from hospital equipment was deafening and during the day pneumatic hammers where being used close by. Where I was freezing, others were sweltering, some lay on the other side of the corridor from an open area, exposed to the heat of the day or the deflected splashes from a sudden downpour.

In the ward there was one female and one male bathroom. In each there were two toilets, one of which was also had a shower. The shower cubicle was in front of the entrance door, there was no door to the men’s cubicle, so any man taking a shower was exposed to the ward if any one else entered the bathroom. In the women’s bathroom the bottom panel of both doors was missing, with a plastic bin liner taped across the gap. The cleaners did their best to keep the toilets clean but with the amount of people using them (all 28 companions from the ward, walking patients and the bulk of those 70 patients plus their carers in the corridors) they had an up hill battle on their hands. On our last day there I noticed what looked like mosquito larvae wriggling about on the shower floor, I’d just washed my hair ewww!

The nursing staff do not seem to have “caring” as part of their remit. They administer medicines and carry out the doctors orders. Whilst some of them were really wonderful, some would never crack even the barest smile and seemed to take delight in making the carers life harder. Some nurses worked 24 hour shifts, others one day on one day off. Some would administer medicine, others take blood, others take blood pressure and glucose readings. A nurse had a specific group of patients to care for, though we never knew who Neu’s nurse was on any given day, nor did we ever know who the doctor was. It was only on the day of Neu’s release that senior doctors toured the ward. There was obviously a shortage of nursing staff and this was hardly surprising when I discovered that the nurses have not been paid for two months.

Most of the companions were relatives, but I spoke to people who didn’t know the patient at all, they might be a friend of the normal companion and only there to let them have a break, or a distant relative. On the one hand it has to be admired that someone will give up their time to care for a stranger, on the other, these people were often completely at a loss when the doctors asked them questions about the patients history.

One of our neighbours, a timid old man with a brain tumour, was being cared for by his neighbour, she was lovely but I couldn’t help feeling that it must have been terribly humiliating to him to have her take him to the shower and stand with him while he washed.

There was a tremendous sense of camaraderie between the companions, we helped each other and each others patients, shared treats we’d smuggled in, ate, laughed and cried together, I couldn’t help feeling that this must have been a little like it was during the blitz in WWll.

People back in the village kept asking why my sister-in-law didn’t come to relieve me but I had told her not to. She was caring for our son along with her own two children and I knew she would have our house cleaned from top to bottom and all the washing taken care of, no doubt far more effectively than I would do. As we were seeing a different doctor every day, who all wanted to know Neu’s story from beginning to end, with odd questions about his treatment thrown in, Neu’s sister could not be expected to know all the details and Neu has been in so much pain over the last month, he’s a little confused over events.

I had to go to the Secretary of Health in the center of Fortaleza to arrange Neu’s transfer from Peritoneal dialysis to Hemodialysis. As Neu was still in the hospital and didn’t have a date of release yet, I couldn’t book his dialysis sessions at the clinic. Without a set date for those at the clinic, the Secretary of Health would not transfer his treatment, which the clinic had told me I had to do as a matter of urgency so Neu wouldn’t lose his place.

It looked like we were to be stuck in no man’s land again, until I thought to phone nurse Valeria. Valeria just happened to know the woman in charge of transfers and so was able to confirm that Neu had a place at the clinic. On her word the lack of a release date from the hospital or a start date at the clinic was overlooked. Phew a relief, but another example as to why, as much as I desperately needed a decent nights sleep, letting anyone else take over for a bit wouldn’t actually give me any rest.

On Wednesday morning the Nephrologist said he was satisfied with Neu’s dialysis and that he would recommend Neu to be released, we still needed the clearance from the clinical doctor but maybe we would be out of there by the afternoon.

Early afternoon the clinical doctor came by and said she was not willing to release Neu as the nephrologist had not released him, we told her what had been said earlier but she said there was nothing in Neu’s notes. She promised to try to meet with the nephrologist later in the day. I told Neu to expect another night in the hospital.

The following morning at 8am another nephrologist came to see Neu, once again he said Neu was free to go pending the agreement of the clinical doctor. The clinical doctor came by a little later and said there was still nothing in Neu’s notes from the nephrologist. We were having to fight nearly as hard to get out as we did to get in. I begged the doctor to sort it out, if Neu wasn’t released soon I would have to be admitted due to exhaustion.

The clinical doctor came back at 10am to say she had spoken to the nephrologist but still did not want to release Neu as he needed a further 4 doses of antibiotics, which meant 8 more days in hospital. I suggested he could be given those at the clinic when he went for dialysis but understandably she was unwilling to take my word for it. Once again I phoned Valeria and after speaking to her the doctor was satisfied. Now we just had to wait for the doctor to write-up her notes and the release forms; that took until 2pm.

Neu’s diagnoses remains uncertain but we are inclined to believe that it was the position of the catheter that caused the problem, for some months now Neu has found it very uncomfortable when the liquid was fully drained from his peritoneal cavity, as though the catheter was sucking on his flesh. He is always so careful with the hygiene process needed during the dialysis, we find it hard (though not impossible) to believe he caught the infection through a lack of hygiene.

Peritoneal dialysis is a wonderful method of treatment for kidney patients but peritonitis is a risk, when it sets in the pain is truly horrendous and the infection can be life threatening.

We got home late Thursday night and had to go back to the hospital on the Friday to see Neu’s transplant doctor, who was horrified he had not been admitted to the hospital at our first attempt. Normally in cases of peritonitis she would remove the patient from the transplant list as they are not well enough to undergo the process but, as she considers me to be a “very responsible and good carer” she would leave Neu on the list, if we promised to turn down any call he might receive until he has once again been declared fit. I was more than happy to agree to this, I know Neu must be 100% fit to cope with a transplant but being removed from the list would mean having to start the process all over again, with more tests and exams which would be a real pain.

On Saturday morning we went back to the clinic for Neu to have his dialysis session, he will attend three times a week from now on, until he goes back to peritoneal dialysis or receives a kidney which ever comes first. He is looking very much better, though very thin and with a cough he picked up in hospital, he’s happier now he’s out of there but embarrassed by the catheter in his neck and terribly sad that he can’t fish.

At 4.30pm we left the clinic to go home. Less than ten minutes into the journey, the village ambulance broke down. I laughed my head off, Neu looked at me a little bemused but hey, what’s a dodgy radiator problem after what we’ve just been through.

If you live in Britain and are not sure the NHS is worth fighting for, you might want to remember this story and my previous post which you can read here. The NHS may not be perfect but it stands head and shoulders over what we have here and I know under which system I would rather be treated.