Two weeks ago I passed the training in the fluid exchange process for Peritoneal Dialysis, allowing us to carry out Neu’s dialysis at home, a great relief as Neu is now on full dialysis and is feeling stronger every day. We still have to go in to Fortaleza once a week for Neu to complete his training but he’s pretty much got it so it’s just a case of doing it right on the day, albeit three times in a row.
Neu didn’t make it easy for me in my last days of training.
On the Wednesday I was to do a supervised exchange on Neu, the clinic was very busy and owing to the number of people who needed to use the room where the exchange is carried out, by the time we reached our turn it was approaching lunch time. Neu hadn’t eaten since very early in the morning and should have had a snack but not wanting to miss our turn in the queue, he missed it and because he likes to think he’s super human and doesn’t need to eat, he said he would wait and eat after the exchange.
Everything was going smoothly, I managed to keep my mind focused on the job in hand and my mouth shut (not conversing with the nurses is difficult, they’re all so lovely but thinking in a foreign language takes too much brain power when I’m trying to learn and demonstrate a new routine) and I got everything in order and done correctly.
Neu was rigged up to the system and the glucose the solution that was in his peritoneal cavity had begun to drain out. For some reason it was not draining with the speed it normally does, Lilianne (one of the nurses who carries out the training) went to tell Doctor Gizelli about the slow drainage and ask if Neu should use a different strength solution, when she came back something had shifted and the fluid was now draining freely.
Neu had about 1.5 litres of solution put in to him on the Monday, as that liquid drained out it was obvious that more was draining out than had gone in, this is good and what is meant to happen but as Neu hadn’t eaten since breakfast and had recently been put on a protein restricted diet (only 60g of meat or fish a day) it was possibly the glucose solution that made him feel he wasn’t so hungry, as it drained out his blood glucose level dropped and along with it his blood pressure.
Neu began to feel unwell and the next thing we knew he was out cold. Lilliane had to support him in the chair or he would have slid onto the floor, I couldn’t touch him because I was in the ultra-clean hand state and needed to remain so to disconnect Neu from the apparatus but Lillianne needed help and she couldn’t leave Neu, thankfully I’m not one for panicking.
Lilliane told me to use my elbows to open the door, keeping my hands clasped together so as to not accidentally touch anything, and to get the doctor who should be in her office. Typically the doctor wasn’t in her office, so using my elbows to open the door to the reception area I went out there and asked if they could summon her, remembering to add NOW, it’s an emergency! I’ve been told in the past that I am too calm for Brazilians to realise I mean immediately.
Back to Lilliane and Neu, he was still out for the count and Liliane looked worried, Neu’s pulse was dropping and he really didn’t look good. Lilliane told me to disconnect Neu from the system (I even managed that right). Dr Gizelli came in and suddenly all was bustle and commotion, she told me to go and call the orderly as Neu needed to be carried into the other room where he could be laid down, Lilliane ran out and came back with a machine to test his blood glucose and Dr Gizelli tested his blood pressure, the orderlies arrived and Neu was carried still unconscious in to the other room where he was put on a drip and given oxygen.
Doctor Gizelli was concerned that something had gone amiss internally with Neu as Lilliane hadn’t had time to tell her that Neu had in fact drained out all the liquid and more, once this was misunderstanding was cleared up, Doctor Gizeli was happier and as Neu came round she made it very clear to him that he cannot go without food. Thankfully all was fine with him, he just wanted to scare the pants of us all and he succeeded.
Back in the clinic on Friday, I finished and passed the training and we were allowed to begin the dialysis at home.
The room where we do the dialysis isn’t 100% finished, we still need to buy a table and chairs and a small storage unit but for now we have borrowed a couple of tables and chairs from Neu’s friend who runs a bar. We had help from friends who came on their day off and laid the tiles on the floor and put in the new window, I tiled around the sink and Neu set up the water tank and plumbed it into the sink.
The water tank was a bit of a head ache in the planning stage as we had to have a way of chlorinating the water we will use for washing our hands in the room. I didn’t want to have to chlorinate all the household water, it is stored in a huge tank that sits at the top of a tower level with the roof, I don’t like having to climb up there and wouldn’t want to have to keep going up there to dunk chlorine in the water, so we had to devise an alternative system using a smaller dedicated tank. That bit was obvious, what wasn’t so obvious was where we could site the tank and how we would get the water and chlorine into it as the main water tank is on the other side of the house.
There followed various versions of plans, things were designed and re designed as we tried to work out the simplest and most cost effective way that would actually function. Heath Robinson’s designs were very much in my mind at this point, buckets on pulleys, levers, hoses, and pipes running all over the place.
We finally settled on building a small wooden tower fixed to the wall outside the room, we used a new dustbin with lid for the water tank as although they make a 100 litre water tank, we couldn’t find one and were running out of time, the plastic bin will do for now. The bin was plumbed into the sink and the waste water drains out to a bucket so I can reuse it for washing the floors, it’s only been used for washing hands in after all.
I am very glad that Neu is using this form of dialysis, so much better for him than having to travel into Fortaleza 3 or 4 times a week for haemodialysis but even peritoneal dialysis takes time, each session lasts about 40 minutes and has to be repeated 4 times a day. Once Neu is able to do the process at home too, things will be easier. In the future, once it’s certain that Neu is coping well with the dialysis; we hope he will be able to use a machine.
The machine will allow him to connect at night and it will carry out the dialysis while he sleeps, having disconnected from it in the morning, he will be free all day. In this way Neu will be able to return to fishing, not deep sea as he obviously wouldn’t be able to be out over night, but at least he will be able to get back out on the water during the day, something he is desperate to do.
At some point in the future Neu will begin the process of tests necessary for inclusion on the transplant list but as the dialysis is working well, Neu doesn’t feel in such a rush to have a transplant.
And Finally a big THANK YOU to everyone who sent good wishes for Neu, your prayers and positive energy went a long way to helping him and we are very grateful.
©Claire Pattison Valente 2012