We’ve just had a week in which there was hardly a moment to think, its been so busy I was finding it hard to keep up with which day it was.
Before Neu’s downturn in health I agreed to have four students stay with us. They were coming to Prainha from a Brazilian university, arriving on Tuesday and staying until Saturday. As they were part of a much larger group of thirty-two students and teachers who would be working and eating together, I was not responsible for their meals, they really were just sleeping at the house.
During the same week, Prainha was also playing host to a group of eight international journalists and photographers, arriving on Monday, leaving on Friday. They had a packed schedule, visiting other communities during their for days here and as they all spoke English, I was due to share some of the responsibility for helping them get the most from their limited time here, going to Coqueirinho (a community farm near to Prainha) with them on Tuesday and then a walking trail to the lagoon on Thursday. I love the farm and the people there but owing to us not having a car, I can’t get there as much as I’d like, I was really looking forward to the day. Going to the lagoon is always a pleasure, its a nice walk, the lagoon is beautiful with the added bonus of being lovely to swim in. I was sure the photographers would love it and hoped to get some advice on improving my own photographic skills, just to watch professionals at work would be interesting.
On the Monday morning Neu and I went to the Pronefron clinic where Neu was to be assessed for CAPD (continuous ambulatory peritoneal dialysis). We had been told to arrive at 8.30 which we did, only to sit in the waiting room until 11. I can’t say I was impressed, the air conditioning was almost Arctic (I will never understand why, where ever you go in Brazil, the air conditioning is always set to freezing) there was a TV on but so many people coming and going that you couldn’t hear it, it just added to the general noise. Neu looked dreadful and I was increasingly concerned for him.
We were called in to see a senior nurse called Valeria, who apologised for our long wait, unfortunately they had been flooded with patients that morning, who all needed to see the doctor, Valeria would explain things to us and the doctor would be along as soon as she could.
Valeria couldn’t have been kinder, she gently and clearly explained to us, in easily understandable language what had been happening to Neu’s kidneys and body, what will have to be done in order for him to have peritoneal dialysis, what the dialysis process involves and how it differs from hemodialysis and what the long term prospects are.
Valeria answered every question we had and told us that now we are under their care, we will not only have 24 hour phone contact with her or the other head nurse, Neu will also be attended by Doctor Gizeli, see the nutritionist, the psychologist and someone from social welfare who will help us to get all the social assistance Neu is entitled to. Apart from basis things that we will have to buy, paper towels, cleaning fluid and so on, everything else is free, all Neu’s tests, all the material needed for the dialysis which will be delivered to the house, any further medication he will need (we will still need to purchase the 2 drugs that doctor Paulo prescribed but other than those, the rest are free, which is just as well as Neu was given 1 drug to control the level of phosphorous in his system, it alone is R$1000. for a months supply, no way we could buy that). Social assistance will help arrange transport as we will have to go backwards and forwards to fortaleza for training and tests for a few weeks. They will also request financial help with the alterations we will have to make in the house, to make one room dust proof in order for Neu to carry out the dialysis and be protected from infection.
As I had been so anxious about Neu for so long, anxious about how we would pay for everything, almost completely in the dark as to how things function here (as it seems to me are most people) and was premenstrual, I spent a large part of our 2 hour consultation with Valeria bursting into tears with relief, she must have thought me rather pathetic but I felt like the light at the end of the tunnel, that for the last 3 years had just been a distant glow, had suddenly got very much brighter. Our initial dark opinion of the clinic was swept away and replaced by something gleaming.
We briefly saw Doctor Gizeli who told us Neu needed an ultrasound and ECG, to be carried out in two different clinics, if they gave positive results she would try to arrange for Neu to have surgery to fit the catheter needed for dialysis the next day. They only do the surgical procedure on Tuesdays so we had to get the tests done fast in order for the results to be back in time. A mad dash around to find the clinics and get the tests done and then home, exhausted having had nothing to eat since 6 in the morning.
We got home just after 8 and I went straight up to meet the journalists at their guesthouse and apologise for not being able to go to the farm with them the next day. They were lovely, very sympathetic and kind and understood that Neu’s health came first.
The next morning we were up at the crack of dawn again. The students arrived just before we left, I showed them their rooms, explained the situation with Neu, asked them to try not to let the dogs out of the garden gate and then had to leave them to their own devises.
Alexandre our friend and taxi driver, once again drove us back to fortaleza, we picked up the results which showed all was fine for Neu to be operated on and Doctor Gizeli managed to speak to the surgeon at another hospital who agreed to carry out the surgery that afternoon.
We had several hours to wait, so went and sat on the beach, watching the ships coming into port, not a bad way to pass the time.
We went back to the clinic to pick up the catheter and some other things which we had to take with us to the hospital, I was given a slip of paper with the name of the hospital and told where to report once we reached there.
The hospital was a long way from the clinic, way out on the other side of the city. When we arrived the receptionist didn’t know anything about us, she said Neu was not down on the surgical list, I explained where we had come from and asked her to call them, she said to take a seat and she would call Fatima, the surgical team manager. Fatima arrived, she said Neu was not on her list and asked who had sent us, I explained again, she said they hadn’t sent her an email and therefore there was nothing that could be done, she didn’t seem to know any of the doctors or nurses from the clinic, nor did she seem disposed to be helpful.
Thankfully I had Valeria’s / Claudia’s emergency number, I rang and gave the phone to Fatima, she had a heated exchange with Claudia, gave me back the phone and told me to wait. Poor Neu, this was the last thing he needed.
A few moments later Fatima came back, all smiles, oh dear they had sent the email, she just hadn’t seen it, oh how funny, yes we’re really laughing.
A short time later Neu was taken in for surgery, I was told he might be allowed home the same day, I should come back later.
Alexandre and I drove back into the center, arriving at the department of health just before closing time, here I got the paper work sorted that will allow Neu to have the dialysis training. Back to the hospital to wait and wait.
Neu had been given an epidural and although I wad told that the surgery had gone well and Neu was fine, I wasn’t allowed in the recovery room to see him, they still couldn’t tell me if he’d be allowed home.
Just before 8 o’clock they brought him out, he looked a lot better than the last time I’d seen him but they said he now wouldn’t be discharged until the next morning.
I got home just after 10 and went back first thing on the Wednesday morning to pick him up.
On Thursday I gave a talk to the journalists, explaining some of the fishing methods used here which I hope they found interesting, then in the afternoon we went to the lagoon which was as wonderful as ever. Most of the group went in for a swim and that and the walk was just what I needed.
I thought we’d have a day off on Friday but the day passed in a blur of visitors for Neu, the students coming in and out and going to say goodbye to the journalists, I was sorry not to have had more time with them.
I’d rung the clinic and was told to come in on the Saturday morning.
Our health worker in the village managed to organise an ambulance to take us in, a relief as Neu could lie down but also we wouldn’t have to pay. Alexandre has been great and doesn’t charge us the full rate but even so, four trips to Fortaleza in six days had hit the bank balance.
Neu had been suffering pain through the night and didn’t sleep well, his headaches had returned, I suspected this was due to a sudden rise in his blood pressure which had dropped so low as to make doctor Paulo suspend Neu’s medication. Neu also had pain in his bladder, I hoped he hadn’t picked up an infection.
At the clinic we were seen by Valeria almost immediately, she changed his dressings and said the pain Neu was experiencing was the end of the tube poking his bladder, once he had the solution in the cavity, the tube will float within it and he will no longer feel it. She ordered some fluid to be inserted and Neu said thankfully the pain vanished.
Dr Gizeli adjusted Neu’s blood pressure medication and after having seen another Claudia from social assistance who gave me a fantastic begging letter to take to the local council, asking for assistance with the building work and transport we were sent home.
Over the next 3 weeks we will return to the clinic 3 times a week for them to check Neu’s wound and receive training.
Its Sunday today and I’m having a day off but before I go I just want to mention Doctor Paulo Mesquita who has been attending Neu privately for the last 3 years free of charge. He has been absolutely wonderful and we are both extremely grateful to him. We felt great trust in him from the first consultation and he has been responsible for more than just keeping Neu’s body functioning. He gave me the information I needed to keep the drama queens and doom and gloom merchants at bay, those who would forecast Neu’s imminent death and have him believe his life was over. Its not always been easy to keep Neu having a positive outlook on things but I have always believed its best to see things as half full rather than half empty and Doctor Paulo’s part in all this is immeasurable, I will never be able to express the extent of my gratitude to him, he was an absolute God send, blessed be.
©Claire Pattison Valente 2012