On our last visit to Neu’s Doctor we were told that Neu’s haemoglobin levels are too low and he needs hormone replacement therapy, to be injected three times a week. The hormone erythropoietin is responsible for production or red blood cells/corpuscles, also known as erythrocytes and is produced by the kidneys. As Neu’s function is now so low, he is not producing sufficient quantities, putting him at risk of him developing severe anaemia. The main function of red cells is to carry oxygen from the lungs to the body tissues, where they exchange the oxygen for the waste product carbon dioxide, Neu will have to continue with the injections until after he’s had a transplant.
The doctor told me (briefly) how to inject Neu with the hormone, then gave us a special prescription for us to take to the secretary of health for the municipal area in which we live.
The doctor clearly has more confidence in my ability to give an injection than I do. It’s not that I think it’s particularly difficult, nor am I squeamish about such things, but as a young child of eleven I was subjected to a course of medical treatment which consisted in part, of large and incredibly painful injections 4 times a day for 6 weeks. I was later told by a vet that when treating animals with the same medication, it is standard practice to sedate them, perhaps I should have bitten a few nurses, maybe then they would have applied they same consideration to me. Anyway the point is, that I am very aware of how painful injections can be, the nurses who did a good job of inserting the needle and emptying the syringe went along way to improving an unpleasant process and I don’t want to hurt Neu.
I decided to take a look on the internet for some advice and almost wished I hadn’t. There is a mass of advice out there but it’s often contradictory and comments left in reference to some video’s on YouTube are alarming to say the least. I ended up more confused than I had been when I started. In the end I asked my friend who is diabetic and has been giving herself daily insulin injections since childhood, she gave me some simple and straightforward advice which I hope will mean that Neu doesn’t feel a thing.
Getting Neu’s medicine was a whole different story. First we had to take the special prescription to the secretary for health in Beberibe. So on a Monday morning we arrived in reception, where we were told we had to go to the building next door and ask for Jacqueline. When we found her, she said we had to go back to where we had just come from and ask for a health card for Neu, then provide her with photo copies of a recent electricity bill (as proof of address) and Neu’s Identity card. Back next door we were ushered into a air conditioned room with the temperature of the arctic, from where thankfully minutes later we were able to leave with what looked like a photocopy of a card with Neu’s name on (we didn’t get a card just the paper). We asked if we could photocopy the other documents we needed but were told no, the nearest place was a ten minute walk away.
At the photocopy shop I realised that the electricity bill I had with me, was the one the dog had ripped up as it was posted through the door, I wasn’t sure Jacqueline would except a photocopy of several shredded bits of paper so we used my Father in law’s bill and hoped it would do (we don’t actually have road names or house numbers where we live, just the village name).
We went back to Jacqueline who accepted all the paperwork and told us to come back in a month. What!
Jacqueline explained that the order has to go to Aracati (a slightly larger town in the opposite direction) then from there back passed Beberibe to Fortaleza. From Fortaleza the medicine will be sent to Aracati and then back to Beberibe so it takes at least a month. Perhaps it goes by donkey!
Just before we got the bus back home we met a young man from the village who said he had been into the health centre and Jacqueline had asked him if he knew Neu, when he said he did, she asked him to pass on the message that another patient no longer needed their supply of the hormone and therefore Neu could have it, to collect it on Thursday.
On Thursday we took the mini van back to Beberibe, we were lucky enough to be able to arrange to catch the later van and so only had to leave the house at 6.45 in the morning rather than at 5 which is when the more regular mini van goes. When we arrived at Jacqueline’s door she was no where to be seen, we sat and waited. Eventually someone came by and said Jacqueline was having her breakfast but wouldn’t be long, we could wait in her room. He ushered us in to Jacqueline’s office which also turned out to be the store room for the drugs and medical supplies for the Health centre. There we were on our own surrounded by boxes and boxes of pills, antibiotics, pain relievers, bottles of liquids and who knows what, had we been so inclined we could have had a field day, there didn’t seem to be any cameras and no one else about.
Some time later in came a smiling Jacqueline to tell us that she was very sorry but the people in Aracati had forgotten to put the medicine in the order, she would go and check if there would be another car today, while she was gone would we please not fiddle with the telephone (considering the drugs we were surrounded being told not to touch the telephone was a little odd I thought). When she came back again she said there wouldn’t be another car coming today or tomorrow, Monday was a holiday so we should go back on Tuesday.
On the Tuesday I wasn’t well so Neu’s sister went for us as she was going into town anyway, the medicine still wasn’t there.
On Thursday I tried to find the number for the health centre, I rang the operator who said the best she could do was to give me the number for the public telephone box outside the health centre (once again, odd!). I went to the school to use the Internet and found a list of three or four different numbers for the health centre. The head of the school, allowed me to try ringing from the school office. I didn’t receive an answer from any of the numbers, she then looked up another number and rang it, that too was unanswered, she then rang another number, was given yet another number which on the first attempt was engaged, but two minutes later went unanswered. We gave up.
On Friday I tried the last of the numbers I had been given the day before, I got through and was given another number, this time I got through to Jacqueline. Yes the medicine was there. Neu rang a friend who lives and works in Beberibe but usually visits his family in the village at the weekend, yes he would happily collect the medicine, no it was no problem, he would buy a small cool box to store it in with some ice and would deliver it to Neu on Sunday. Later that Friday evening he arrived, he said he was worried that Neu had already had to wait so long for the medicine, he thought it best to deliver it immediately and so had made the journey straight after work, a round trip of the best part of two hours. Unfortunately his incredibly kind and generous act (he wouldn’t accept any money, not for petrol, the box or the cool block he had bought, let alone for his time) was all for nothing as there were no needles or syringes in the box. He was as frustrated as we were, he said Jacqueline had handed him the box telling him it was all in there, had he known it was only the medicine he would have asked for the syringes and if non were available (as they are often not from the health centres) he would have bought some from the chemist. Such a kind man but ah well.
Neu has now had the first of his injections, his mother gave him a needle and syringe from her supply (she gives herself daily insulin injections but she doesn’t want to inject Neu and nor does he want her to). When I’d given him the injection he said it didn’t hurt too much.
©Claire Pattison Valente 2011