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Last week Neu went for an abdominal scan to check he was fully recovered from the peritoneal infection to allow his return to peritoneal dialysis. During the scan, the doctor found a large cyst, measuring roughly 7cm x 5cm x 3cm which the doctor assessed as being filled with dialysis fluid as the liquid was clear. This combined with Neu not feeling any sensitivity when the skin above the cyst was pressed and with no sign of fever, would indicate the cyst is not infected. In that doctor’s opinion the cyst shouldn’t prevent Neu’s return to peritoneal dialysis, something Neu is desperate to do.

When I showed Neu’s scan results to his doctor at the clinic, she was less than happy to see the cyst and it is strange that it has formed now, many weeks after he stopped doing peritoneal dialysis, one would have thought that any liquid remaining in the peritoneal cavity would already have been re absorbed into the body.

His doctor has asked to see again the results of the CT scan Neu had done some weeks back and she will then discuss his case with another doctor and the surgeon, before deciding what the next step will be. Neu was very depressed by this news as the routine of trips to Fortaleza dominates our lives and he finds the hemodialysis extremely taxing on his mental and physical state. Of course we are grateful that he has the option of hemodialysis, without it he would be dead but Neu doesn’t feel himself to be living and I fully understand why.

As we don’t have a car we are dependant on the municipal ambulance service for the trips to the dialysis center. As I have said before, these ambulances are not designed with comfort as a priority, they are hot, noisy and uncomfortable, especially for those accompanying the patient. Neu gets to lie on a trolley bed, hardly the lap of luxury but I get a very narrow bench seat and shortly I expect to see I’ve developed a square arse from being wedged on to said bench for hours on end.

On the way into Fortaleza in the ambulance

On the way into Fortaleza in the ambulance. Under the bandage is the dialysis catheter which is inserted into the vein in his neck. It is uncomfortable, he can feel it when he moves or swallows. It limits his ability to shower and wash his hair as it must be kept dry and of course it draws attention and wide-eyed stares from people who do not know what it is.

The ambulance arrives at 9am, sometimes we are the only passengers, sometimes not. The other day the ambulance driver had decided to bring his wife and two sons with us for a day out in Fortaleza and there were several other patients that had to be dropped off in the next town on route. As we were bringing our son with us, in an effort to give him a fun day out, I didn’t feel I could complain but to say we were over crowded is an understatement.

Neu’s dialysis session starts at 11am and Neu leaves 4 hours later feeling worn out from the dialysis and extremely hungry. Patients are not allowed to eat while on the dialysis machine for reasons of hygiene, though they do allow snacks of fruit or crackers. Personally I can’t see the difference between that and something more substantial but rules is rules.

Dialysis sessions are long, boring and very tiring. The two tubes connect to the catheter in his neck, taking blood from him to the machine beside him for cleaning and then returning it to his system..

Dialysis sessions are long, boring and very tiring. The two tubes connect to the catheter in his neck, one takes blood from him to the machine (just out of shot) for cleaning and the other returns the cleaned blood to his system..

On dialysis days Neu eats before we leave the house but there is no time for him to eat again when we reach the clinic and so, other than maybe a banana and some crackers, he will not eat again until he finishes his dialysis, by which time he is overly hungry and in danger of passing out. Neu will wolf down the food I have waiting for him and then we wait for the ambulance to pick us up.

Sometimes the ambulance is there ready and waiting, other times not. Sometimes we drive straight home, arriving around 5.30pm, other times we have to pick other people up on route. Last week on the day we appeared to be a bunch of sardines in a charabanc, we had to wait nearly an hour for the ambulance. When it arrived there was another passenger in the back with a huge rucksack, she appeared to be a friend of the driver and his family.

Neu immediately collapsed on the trolley bed and fell asleep which was a relief as we then drove goodness knows where to pick up another passenger, a rather large lady with some large bags who had been in Fortaleza visiting family. Now there were 9 of us in this small ambulance (basically a small delivery van and not meant for more than 5 people).

The driver’s youngest son sat on his mother’s lap in the front seat, which is illegal (well what’s one more illegality) not to mention life threatening to him in case of an accident. We stopped at some other unknown place where the driver said we had to wait for someone else! We all popped out of the back like one of those rather bad jokes about how many people can you fit in a van.

When everyone had got out Neu woke up, to have me promptly order him back to sleep, I didn’t want to risk the driver seeing him awake and thinking we could squeeze yet more people in the back if Neu was sitting up. Thankfully we were only waiting to pick up another bag, though lord knows where the driver stored that. We finally made it home just after 7pm.

With long days like this several times a week, I have little energy for much else. My sister-in-law, bless her, does the bulk of the housework but there is always more that waits to be done, and continues to wait. Tired as I may be, I look forward to walking the dogs, being out on the dunes with the huge expanse of sea to the front and forest to the horizon inland, waiting for sunset and watching the moon and stars rise, gives me the chance to re-charge my batteries and reaffirms how infinitesimally small and unimportant we all are, it may seem strange but that thought helps.

Another gorgeous sunset. Prainha do Canto Verde

Another gorgeous sunset. Prainha do Canto Verde

Many people have asked me if we wouldn’t be better off with our own car and it certainly is an appealing prospect but unfortunately I do not possess the energy needed to make that come about. Firstly we don’t have the money to buy a car (prices here are crazy) and even if we did, the thought of trying to find a decent car, then getting my British driving licence converted to a Brazilian one, a costly and bureaucratic process, then doing all the driving, is just more than my tired brain can contemplate at the moment. What I’d like is for some one to present me with a car and all the paperwork sorted but that’s just not going to happen.

No, for the time being we are stuck with the local ambulances. Neu is getting stronger little by little and doing his best not to let things get to him. We keep our fingers crossed that the cyst turns out to be easy to deal with and most of all we pray for a transplant to come, it would initially be a load more stress but ultimately is Neu’s best hope for a new lease of life. All prayers welcome.

UPDATE: We saw Neu’s doctor again today and after checking his scan results again, alongside those of his C T scan, she it’s satisfied that he can return to peritoneal dialysis providing his blood test results come back ok, which I’m pretty confident they will do. Neu’s surgery to have the catheter fitted will be scheduled as soon as his blood test results are back. Neu gave a very relieved smile at the news.

Of course a transplant would still be the best option and I’m focusing on that happening sooner rather than later, willing it to happen.