In 2015 / 2016 my husband Neu underwent a series of abdominal surgeries. In the last of these, a large permanent mesh screen was put in place to act as his peritoneal wall, his own having been too badly damaged to hold together anymore. Unfortunately, Neu’s body had other ideas and rejected the screen. Since then, the screen has been slowly expelled through open wounds on his belly and the screen stops those wounds from closing. Two years on and we are hardly any closer to the surgery site being healed, than we were when we left the hospital.

In March 2017 Neu developed an infection, he was put on multiple courses of antibiotics, which all failed to deal with it. In September, we were told that he would have a small surgery in the outpatient’s clinic to remove the screen. Two weeks later, when we arrived at the clinic we were told there was a change of plans, he would now have to be admitted for a short stay in the hospital. It took until November for Neu to get a bed.

After a few days treatment with intravenous antibiotics, Neu was sedated and sent to surgery but, once he was on the operating table, there was another change of plan. Neu’s abdomen was hard and too inflamed for the surgical team to tell what was where. If they accidentally cut through the screen and into his intestines, it could leave him with considerably more problems than he already had. We also heard they were short on sutures and wanted to save what they had for more urgent cases.

Whatever the reason, his surgery didn’t happen as we’d expected. Instead they removed what they could through the holes. Neu was disappointed when he woke up, to find his stomach looking pretty much as before, although the surgeon did assure us they had removed a considerable amount. More would be removed periodically, when Neu attended the out-patient’s clinic.

Since then, Neu has made several visits back to the surgeon and undergone the painful process. Each time, as the surgeon is pulling at bits of the screen, he asks “Does it hurt? Am I hurting you? Of course it hurts,  it hurts too much, you’re very brave, just a bit more”. Speaking to one of his trainees, he said “You see to be a surgeon, you cannot be afraid of hurting people, I know that I am hurting him, it hurts really bad but I have to hurt him, I have to do this.” Then with a smile and a wink to Neu “Though it’s easier with him, he’s brave and doesn’t shout out.” Through gritted teeth, Neu managed a smile and even laughed about it afterwards.

On Friday we were back to see the surgeon again and, as always, Neu endured it without fuss. When the pain became too intense, he bit his lip, squeezed my hand tightly and tried to hide the single tear, which escaped unbidden from his eye.

When the surgeon had finished, he told us that Neu’s abdomen is healing well. For the most part, it is now much softer and the best he’s seen it. It looks like a battlefield to me! Laced with craters, trenches, scar tissue, fistulas, lumps and bumps all over the place. It’s hard to tell if a swelling is an infection, or an area that is opening up to expel more of the screen. The surgeon is pleased though and thinks that by later in the year, he should be able to open Neu up and remove what remains of the screen.

Neu is not at all sure how he feels about that. The idea of going back into hospital is hard for both of us, too many traumatic memories, but until he is completely healed, there is no possibility of trying for a transplant.

We have always sought to be as positive as we can be about the situation. Neu continues to be as active as possible. We try to see the funny side (you’d be surprised at what we laugh about) and enjoy the good days. Yet it is difficult to avoid the specter of his illness, it over-shadows everything. Psychologically, for a man in the prime of his life, to be unable to work, provide for his family or just do what he loves to do, is soul-destroying. We try not to let it get to us, but I’ll admit, there are times when we fall down.

What bothers us the most, is when we have a problem caused by the very people who are supposedly there to help us. Usually a governmental department or body, as has been the case for these last 6 months. A departmental decision to change the method for delivery of the drug Eprex (the synthetic hormone erythropoietin) has caused a great deal of suffering to many of the dialysis patients at the clinic, including Neu.

Erythropoietin stimulates the production of red blood cells and is normally, mainly produced by the kidneys. Without the hormone replacement injections, Eprex, dialysis patients become severely anaemic. Neu was first prescribed Eprex in 2011, shortly before he began peritoneal dialysis. Once a month we would collect his supply from the health department and he would inject himself 3 times a week. When he began hemodialysis in 2015, his supply was sent straight to the clinic, where he would receive a dose after each dialysis session.

In October of last year, someone in the health department decided that things should change. Patients were told to go to the health department for the municipality in which they live and fill out a load of forms nominating a third person. When the supply of Eprex arrived, the municipality would then telephone that 3rd person to collect the medicine and take it to the patient (and this is in a region where many people, including ourselves, do not get a telephone signal, helpful). The patients would then be responsible for buying syringes and needles and injecting themselves at home.

I won’t go into all the boring details but, things can never just be simple. The forms were given out, filled in and handed over, only to be sent back to the clinic time and time again. The health department required something else, another number, another blood test, a different exam. Finally insisting that the patients needed to complete a 24-hour urine test. As the doctor told the department official, this was impossible as dialysis patients do not, on the whole, urinate.

Once the stocks in the clinic where used up, Neu’s haemoglobin levels began to fall, leaving him feeling absolutely ghastly. Symptoms of anaemia include paleness, weakness, exhaustion and fatigue. Headaches and difficulty concentrating. Feeling dizzy, difficulty breathing, shortness of breath. Chest pain and heart palpitations.

It took 5 months to reinstate the supply. By this time Neu’s haemoglobin level had fallen to just above 5 (a normal level for a patient on Eprex should be between 10 and 12), any lower and he would have needed a transfusion. As it is, the number of patients in the clinic requiring blood transfusions during that time, grew exponentially. Not for the first time, Neu felt like he was dying and told me that he’d had enough of it all. Who can blame him? Not I.

I cannot help but think that this was all someone’s money saving idea. Eprex is a very expensive drug. The government health department would have saved an absolute fortune by not supplying Eprex to the hundreds of patients at Neu’s dialysis clinic for 5 months. One has to wonder, just how many dialysis clinics were affected?

Two weeks after the Eprex problem was resolved, a medicine on which Neu depends to control his blood pressure, Atensina, was suddenly withdrawn from the market. The stocks were cleared from the pharmacy shelves. Some problem with quality control. Neu’s doctors were very slow to respond, taking nearly a month to prescribe an alternative.

In the meantime Neu’s blood pressure became very unstable, either too low, or rocketing skywards. Readings of 230/150 are common and cause him terrible headaches. Several times during a dialysis session his blood pressure rose so high, they had to take him off the machine, it would have been dangerous to continue. The high blood pressure, combined with his low haemoglobin levels, puts a tremendous strain on his already over-strained heart.  Then this week, during a dialysis session, his blood pressure fell to 70/40, causing him to black out and again his dialysis had to be stopped. Missing or reduced dialysis sessions further destabilise his blood pressure.

Neu no longer has the strength to walk down to the beach and is talking like I have never heard him before. He wants to sell his boat, he no longer believes he will ever return to the sea. He feels there is no fight left in him and wishes to sign a do not resuscitate form. Wanting to sell his boat concerns me more than anything else. Neu loves his boat, loves the sea, it’s who he is. To hear him talking like this is heartbreaking, though I completely understand him. He has been battling against the odds and in pain, for a very long time.

A few nights ago Neu came back from the clinic with a load of paperwork that needs to be filled out. Someone in the health department has decided that it would be much simpler if the Eprex was delivered straight to the dialysis clinic again. Give me strength! Let’s hope it doesn’t take them another 5 months to sort out.

As I don’t want to show you pictures of Neu’s belly (might put you off your dinner) here instead are some photos of a kitten that someone chucked over the wall into our garden. I didn’t really want another cat (we have 4) but the poor thing was tiny and half starved so ……………. looks like we have another. For some reason he is very fond of sitting on my feet.