Those of you who know me or regularly read my blog, will know that my husband Neu suffers from chronic kidney failure and carries out peritoneal dialysis at home.
To date we have been extremely fortunate with his treatment, firstly Neu accidentally came under the care of Dr Paulo who works in both the Brazilian public and private health care systems and treated Neu at his clinic free of charge for three years, until it became necessary for Neu to begin dialysis when Dr Paulo referred Neu to the Pronefron dialysis clinic.
The dialysis clinic is a public clinic but appears private as it is run in conjunction with the German manufacture of the dialysis material. Now that Neu has decided to go for a kidney transplant he has been referred to the general hospital in Fortaleza, we are now facing the reality of the Brazilian public health system.
In January we registered Neu’s wish to be included in the transplant program and in February returned for an information session. We arrived at the appointed hour and sat in the waiting room and well; waited. Two and a half hours after the lecture should have started we were called, along with a group of other prospective patients, to a lecture room. Nothing in Brazil ever seems to start on time so this late start, while frustrating because we needn’t have left the house so early, was not a surprise.
The information we received was helpful and encouraging, we are lucky to be living in Ceará, as the region has one of the best transplant programs in the country. We were told the average time taken from the starting the testing process to transplant is only 7 months, great news for us but tempered by the fact that the high rate of available donors, is mostly caused by the shockingly high rate of motorcycle accident deaths. As a motorcyclist myself, this is a hard one to get my head around.
The next step was an appointment with the consultant in March, again we were very encouraged by what we heard, Dr Claudia said she was happy to put Neu forward for a transplant, he ticks all the right boxes being young (36) otherwise very fit, with no other medical conditions, he doesn’t smoke or drink and is in a stable relationship with a child, all this helps to make him an excellent candidate. Dr Claudia told us to come back in 2½ months, saying if Neu could get all the necessary tests completed before then, she was certain he would only have a few weeks to wait.
Dr Claudia’s receptionist said it was unlikely that we would manage to complete all the tests within 2½ months and so gave us a return date in mid July, she also explained that before we could book any of the exams at the hospital we would need to open what’s called a prontuário, a hospital file, that could be done on the same day as the exams but as it was now mid afternoon she advised us to do it all another day.
Although paid for by the health system, two of Neu’s exams would be done at specific private clinics, I went to both clinics on the same day and booked appointments that would tie in with days Neu has to attend the dialysis clinic, meaning less trips to Fortaleza. In both the clinics the staff were very kind and helpful and the whole booking process was completed in a matter of minutes. Two down but a whole load more still to book.
In April we returned to the hospital to see the Social Worker, we planned to see her first and then open the prontuário and book the exams afterwards, somethings should be so simple.
We arrived at the hospital early morning and waited until 10 to see the social worker, who after an interview dropped a bombshell, saying that Neu would have to accept that he will never be able to return to fishing, I could feel Neu recoiling beside me, I didn’t dare look at him, the words fell so lightly from her mouth but I knew how heavily they landed on Neu and I feared they would crush him completely.
It is hard for some people, especially those who don’t know Neu, to understand just how important fishing is to him, it’s not just a job, it’s who he is, the sea runs through his veins as much as his blood, he has lived beside it, in it, on it since birth, fishing since he was a child, he is happier on the water than he is on land. At the start of his treatment, when he was told he was no longer fit enough to fish he felt there was no point to his life and seriously debated refusing treatment, until Dr Paulo assured him that once he had stabilised he would be able to return to fishing. When that day came and he went back out on the water there was a marked improvement in his condition and Neu continued to be strong enough to fish for far longer than even Dr Paulo had expected.
Eventually Neu had to stop again but then was able to return occasionally once he’d started dialysis, his whole reason for wanting a transplant is that even with dialysis he is not strong enough to fish as he wants to.
The social worker explained that the medicine Neu will need to take for the rest of his life to avoid organ rejection, will make him sensitive to the sun, that he will have an increased risk of skin cancer and added to that, as fishing is such a dangerous activity, he would be at risk of infection or receiving a blow to the new kidney, all these things must be avoided at all costs. There was talk of retraining, there are free courses available and he would be able to learn new skills that would allow him to return to work in a different field. Words that spilled over Neu while he sat staring straight ahead, not hearing anything but that he could no longer fish.
There is a line in the Tom Hanks film Captain Phillips, where the Somalian Pirate says he used to be a fisherman before he became a pirate from necessity, the Captain says words to the effect of – but surely there must be something else you could do?- the reply is – “Maybe in America.” The situation in the coastal communities of North Eastern Brazil is not nearly as bad as in Somalia but unfortunately there is very little else that Neu could re train to do that would allow him to remain in the village, there are simply very few work opportunities, especially any that would keep him out of the sun.
When we left her room, I told Neu that as Dr Paulo had always said he would be able to return to fishing, we should ask his opinion and that of Doctor Giselli at the dialysis clinic, she had never said he wouldn’t be able to fish either, so I was sure we could find a way, if he used a full body wet suit of the sort surfers use, high factor sun cream, hats, gloves, night fishing, what ever it took, we would get him back on the water. Neu agreed to try and remain positive and wait and see what they said.
We went to the main reception area and spoke to a young man about opening a hospital file and booking the exams, it was just after 11o’clock but he said they were not attending any more people that day and we should come back tomorrow, we explained we live far away and couldn’t come back the next day, he went off saying he would see what he could do. A few minutes later he came back with a ticket and told us to wait until the number on it was called.
Twenty minutes later we were called to one of the desks, were a very grumpy woman entered Neu’s name and date of birth into the computer, then wrote down a number on a slip of paper and handed it to him, telling him that it was his hospital file number and not to lose it. We mentioned the exams and she said that she wasn’t responsible for booking them, we would have to queue up again.
We went back to the reception desk where a bored receptionist told us to come back tomorrow, we explained about living far away and were given a ticket with the number 270, I looked at the screen and saw there were over 200 people in front of us. I said that Neu is on dialysis, that makes him priority (which is a bit of a joke, surely pretty much everyone in hospital is a priority) I was given a priority number, 187, well it all helps. We were told we couldn’t expect to be seen until 3 o’clock at the earliest
We decided to book Neu’s blood tests which had to be done in another department. Thankfully the queue there was considerably shorter and we asked if it would be possible to make Neu’s blood tests for a date that would match one of his other clinic visits, sadly this attendant was as unhelpful as the first and she said words to the effect of, you’ll get what you’re given.
Having booked the blood tests we went back to the main queue and sat there until nearly 4. There were twelve kiosks, only six had attendants and it became obvious that only two attendants were booking exams, one of them was the woman who had opened Neu’s hospital file. I was silently fuming and it was with some irony that I read a large notice on the wall telling us dear clients that a little courtesy towards the hospital workers would go a long way towards us receiving a better service. When we were called I was almost relieved that it wasn’t to the woman who had opened Neu’s file earlier and I reminded myself that the woman we were about to see was not responsible for our long wait, I don’t know why I bothered.
This attendant treated us as though we were a bloody nuisance, no the exams couldn’t be booked on the same days, one of the exams could only be booked for late August (so much for the doctor thinking we could get them all done in 2½ months) and one exam couldn’t be booked by her at all, for that we would have to queue up AGAIN but she thought the woman had already gone home. I asked exasperatedly if there wasn’t someone else who could book the exam, she waved her hand and told us to ask someone down there if they could help.
We went in the direction she had waved in, to speak to yet another oh so lovely woman, who told us that no she couldn’t help, come back tomorrow, I explained again that we couldn’t come back tomorrow, she said we’d have to come back another day then. I asked when would be a good day to come back as it appeared there was only one person who could book the exam and I didn’t want to come back on a day she wasn’t there, I was told that the exam could be booked any day, morning or afternoon, to which I pointedly replied, but not today! The woman sighed and said “Look I’ve already told you, the woman is not here today, but you can book the exam any day, morning or afternoon!” Now is it only me that can see the contradiction in that statement?
Neu said later that he had never seen me so angry, I think he was a bit worried I would lose the plot and strangle the woman.
Now on a much happier note, the other day I spoke to Dr Paulo, he said that in an ideal situation someone who has had a transplant should live in a bubble, not come into contact with any bacteria, not receive any knocks, have only the best food etc but that is not real life, that if someone was to live like that they would be just surviving but he wants Neu to have a transplant to live and for Neu to live he needs to fish. What the woman was doing was treating the illness and he (Dr Paulo) treats people, he knows that for Neu fishing is fundamental, as important to him as breathing and regardless of the risks, Neu will return to fishing (slight pause while I whoo hoo and jump up and down). I wish you could have seen Neu’s face when I told him the news!
Dr Paulo also said that after the transplant he will tell Neu when he considers him well enough to return to fishing, which was lovely to hear as it means he intends to follow Neu’s progress, you’ve got to love that man, we are so grateful to him. He also said that our experience with booking the exams in the hospital was a disgrace and that it’s small minded people refusing to be helpful or simply not doing their jobs correctly, which causes so many of the problems in the Brazilian health service, obviously they’re not responsible for all the problems but they certainly don’t help.
We are now hoping that we can book the last exam this coming week, that all the exams will be carried out on the days they have been booked for and that from now on things will go more smoothly but, we’re not holding our breath!
So after all that, here’s a nice photo of the acerola berries in our garden.
Any thoughts? Feel free to share
Post script 05.05.2014
We are just back from another hospital visit and thankfully had a very different experience today. Having learnt the need for an early start to queuing, I got a ticket to book Neu’s last exam as soon as we arrived at the hospital at 7 am, then we headed off to register Neu’s arrival for his ECG. While he was waiting to be called I went back downstairs and was soon attended by a lovely young woman who was full of smiles and very helpful, I told her she was the nicest person I had come across in the hospital and she said that it doesn’t do to be grumpy, people have enough to deal with as it is (she was the youngest of all the receptionists and had by far the best people skills, as I was pleased to tell her). Then I went and asked if Neu’s appointment with the consultant should be rearranged for a date in August after all the exam results are back, the secretary said yes and so that was done. Neu was called for his ECG shortly after and by 9am we had left the hospital feeling very much happier, onwards and upwards.