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Since the whirlwind of a two weeks ago, I can hardly say things are calm now, we are still going backwards and forwards to Fortaleza three times a week, but things have got far less stressful.

We have been attending the Pronefron clinic in Fortaleza and have been extremely well cared for. All of the staff are very friendly and caring, their enthusiasm for the benefits of peritoneal dialysis is palpable and they are very optimistic for Neu’s future. The clinic is a joint venture between the Brazilian government and the German company who produce the dialysis materials. The staff told us the German company dictate how the clinic is run, it is extremely well maintained, clean and efficient, so much so that it has the air of a private facility.

We have been extremely lucky throughout Neu’s illness, being in the right place at the right time, meeting the right people who have cared for Neu or guided us to professionals capable of doing so. Although we are now within the public health care system, had Neu fallen into it earlier, straight from our community, it is likely that his outcome would not have been so positive, in fact it is entirely possible that he would have died long before he was fully diagnosed. We have indeed been blessed and are very grateful to all those people who have helped us, in ways large and small.

Neu’s need for dialysis is now urgent, he is very pale and extremely tired (not to say fed up with not being able to do anything and feeling so rough all the time) but we will not be allowed to begin dialysis at home until we have completed the training and have altered (to the clinics specifications) the room where the dialysis will be carried out.

The room has to made as dust proof as possible and easy to clean, to reduce the risk of infection. As we have a spare room we can use it is somewhat easier for us, those people having to use a bedroom for example, have to embark on a cleaning regime that is frankly daunting (well it would be for me, I’m not fond of housework).
In order to achieve this dust proof environment, the main things we are required to install are a false ceiling, a new window (the old one has no glass, only shutters), ceramic tiles on the floor, a sink with a dedicated water tank so we can adequately treat the water (there would be no point in going through the cleaning regime if the water supply is polluted), a plastic table and chairs and a low level cabinet to store some of the bags and act as a work surface.
This all has to be done as soon as possible and although the clinic staff are clear that you can use cheaper materials such as a PVC tap rather than stainless steel etc it is still a costly procedure.

Back home after Neu’s surgery, our Health Worker organised for the village ambulance to take us to the clinic for Neu’s dressings to be changed and then spoke to someone at the department of health to arrange transport for the subsequent days (the village ambulance is for emergencies only, not routine use). She also advised me to see the Social Assistance in Beberibe and see what they could do to help with the alterations.

On the first day back in the clinic, after Neu’s dressings were changed and I’d had a training session, we were shown to Social Assistance where a very sympathetic lady called Claudia wrote a fantastic letter to the Prefeitor of Beberibe (the municipal we live in) asking him to help us with the alterations, transport to the clinic and with having a dirt road constructed over the 300 meter stretch of sand from the main road to the house. This is necessary for the dialysis material to be safely delivered, there is no way a lorry can reach us over the sand and moving 20 heavy boxes of solution sacks in a wheel barrow every month would be a nightmare.
Claudia warned us that it is very much a lottery as to whether or not we would receive help, some local governments are very generous and respond immediately, others refuse completely.

On the Tuesday I went into Beberibe armed with the letter from Claudia and advice from our village health worker. As with everything to do with officialdom here, I had to spend some time in a queue but when I got to see the lady from Social assistance she was lovely, just not able to help that much. Off the record she said the Prefeitor would not help as we have an upcoming election and he wouldn’t want to be seen as buying votes, frankly I’m sure after the election he wouldn’t help us either. The best she could do (and it does help) was to guarantee transport for us. Neu couldn’t possibly travel in to Fortaleza by bus and if we were to take a taxi we would use all Neu’s monthly income in a week. From social assistance I was sent to another department in another building where they have a project that recycles usable materials taken out of schools when they undergo renovation and pass it onto families in need. I sat and waited to be seen, explained our situation and handed over a copy of Claudia’s letter, the lady read it and took my details, then said I would have to wait to see someone else. I waited…..Shortly after I was called in to see another lady who again was very nice, she carefully explained all about the project and asked what building materials we needed. I explained our situation again and said that we needed immediate help, it really was urgent. The lady told me she would take down all my details, this meant filling in forms and took some time, when we were done she told me there were no current plans for any school renovations to begin, certainly not this year but they would be in touch. So much for immediate help.
Our health visitor had told me I should ask to speak to the Secretary for Health but after my two lengthy interviews and a long queue in the post office to check if Neu’s benefit letter had arrived, I’d run out of time and seriously doubted I would get any help anyway.
A few days later we bought as much of the needed material as we could and work to transform the room is underway, fitfully but hopefully it will be finished by the end of next week.

Neu recovered well from his surgery and his stitches were removed last week, he had some initial discomfort where the tube in his abdomen was prodding his bladder, this was relieved by having a little fluid inserted into his abdominal cavity allowing the tube to float away from the bladder, other than that he is recovering well.

We’ve had a couple of training sessions and on Wednesday under supervision, I was allowed to do the transfer (as they call the exchange of fluid) procedure on Neu. He had 1 litre of fluid inserted, drained out and another litre inserted to be left in place until Friday. He hasn’t yet had a full dialysis session, they don’t like to fill the abdominal cavity until 15 days after surgery. Yesterday was day 17 and back in the clinic, Neu had 1.5 litres of fluid inserted in the morning, four hours later it was drained out and another litre inserted before we were sent home. When he is doing the full dialysis he will be using 2 or 2.5 litres of fluid, 4 exchanges a day with 5 hour intervals except for at night (for example 7am, 12 o’clock, 5pm and 10pm). Neu will do several exchanges on our subsequent visits to the clinic, until we finish our training, long days but better that he has the dialysis sooner rather than later, even if its not complete.

While waiting for the transfer process we all got to see the Psychologist, I had specifically asked for our son to be able to see her, so the day was a family day at the clinic. People in the village are not always as careful as they should be when speaking about Neu in front of our son, there is also a tendency here in the way people talk to deny someone is ill, or have them about to drop dead, all very confusing for an eight year old. I have always tried to explain things to him in terms he can understand and be as reassuring as possible but no one can deny that his Daddy looks very bad at times and this is bound to affect him.  The Psychologist, Adele was lovely and gentle with him, he told her what he understood of his Daddy’s illness and treatment, listened while she explained a little more about how the kidneys work, then asked to play on the spinning chair in her office, a novelty to him and far more interesting than talking about kidneys.

The dialysis procedure we have to learn contains many steps and must be followed to the letter to minimise the risk of infection. The catheter in Neu’s abdomen is a possible route for infection into the body, hence the strict cleaning regime for the room where the dialysis will be carried out and all the materials used in the process.
Forty minutes before we can begin the dialysis the room must be prepared, windows and doors closed and the room cleaned, surfaces wiped down and floor washed (because we have a dedicated room, this only has to be done once a day). Later we bring in a solution bag, check it contains the correct amount in volume and the percentage of glucose solution, that the outer bag is intact and sealed and the date is valid. Tie hair out of the way, wash hands and the tap, especially the control to turn it on and off. Lay out the other items, 70% alcohol, masks, paper towels or clean J cloths, an item called the “organiser”  (the drainage tubes clip into this and the gadget which controls the flow of the dialysis liquid out of and into the patient), a new cap for the catheter which comes in a sterile package and finally any medication the patient will have injected into the solution sack along with two sterile needles and a sterile syringe. Everything is then cleaned with alcohol, following an exact procedure, you cannot for example, wipe the table down like you would before or after eating, using a circular or backwards and forwards motion, it must be wiped in one direction only and each side of the folded paper towel can only be used two times. Once you have cleaned something you must not touch it with your hands until you have completed the hand washing procedure which follows, even the outside of the sterile packets must be cleaned with alcohol before being laid on the table in such a way as to allow you to be able to pick them up without touching the table. The patients catheter is also cleaned and wrapped in a paper towel until later. The hand washing process is designed to clean every individual part of the hand, each part being rubbed with soap ten times, palms, backs, sides, each individual finger, nails, cuticles, finger tips and pads, wrists and them arms as far as the elbows. This is repeated 3 times over a period of 5 minutes with 3 fresh applications of soap. An error in the way you dry your hands or an accidental touch of anything other than your other clean hand before or during the dialysis transfer, would require you to begin the hand washing procedure all over again.  Now we can open the outer bag which contains a full dialysis solution bag and an empty bag with connecting tubes to a central dial. The tubes from the bags and central dial are placed in the organiser and the empty bag dropped to the floor. The full bag is checked for defects, strange colour or consistency, foreign objects in the liquid or holes in the bag and if all is well the patient’s catheter is unwrapped and connected to the system, their existing dialysis fluid is drained out, which should take a maximum of 20 minutes and the new solution drained in, which should be done in less than 10 minutes. The patient is then disconnected from the system and the new catheter cap fitted, the drained fluid (which looks and smells like urine) is checked for abnormalities (it should be clear, pale in colour and free of particles), measured and then poured down the toilet. Anything out of the ordinary and its straight back to the clinic. The whole process takes around 40 minutes.

It all seems a bit daunting at the moment but once we’ve got it right and Neu begins full dialysis he should begin to feel a difference within a few sessions, although it will be some months before he begins to feel back to normal (not sure Neu knows what normal is, considering Dr Paulo estimated Neu had been suffering from kidney failure for at least ten years).
We will not be allowed to do the dialysis on our own and therefore at home, until we have completed the whole routine 3 times with NO mistakes, I’ve begun to wash my hands in my sleep and am desperate to get it right so Neu can begin full dialysis at home as soon as possible.

©Claire Pattison Valente 2012