Back in August, with the Covid restrictions in place, I decided to use the time at home for a spot of DIY and set about turning some lovely wooden doors, which I’d saved for just such a project, into new kitchen worktops.

I’d no sooner started the work when Neu was referred by the doctor at the dialysis clinic, to see a vascular surgeon at the hospital. Scaring, from the multiple catheters Neu has had in his neck, is blocking his veins and causing swelling in his face and upper body.

When Neu had to stop peritoneal dialysis and move to hemodialysis, it had to be done through a catheter in his neck. Unfortunately, as so many things went wrong during his hospital stay in 2015/16, Neu needed multiple catheters in both sides of his neck and groin. The multiple incisions into his veins and the prolonged use of the catheters, has led to his current problem.

Neither of us was happy at the idea of him having to go back into the hospital. We went through so much trauma last time he was there, it’s left a mark on us both but it was obvious that Neu really needed to be seen by the vascular surgeon and have the angioplasty procedure to clean out the blockages.

Once again we had a bit of a fight to get Neu admitted but, after the best part of a day and several different doctors examining him, we were told he would be given a bed. Patients who are bedridden must have an “Acompanante”, a family member or other person, who stays with the patient at all times and deals with all their day to day care. I filled that role last time and spent 3 months sleeping on the hospital floor but this time, as he was able to look after himself, Neu sent me home. I have to say, it was a huge relief to me.

So, I was at home doing my DIY with a bit of help from my son, while trying to keep up to speed on what was happening with Neu. Actually nothing much was happening with Neu. Every day he asked if he would see the vascular surgeon and every day he was told the surgeon was too busy.

After a couple of days, Neu was told he was being discharged. I wasn’t best pleased bedause while he’d had some tests, he’d not seen the specialist and not had any treatment. As we live so far from the hospital and don’t have a car, we have to pay someone to take us on the four hour round trip. I’d just arrived at the hospital when Neu rang me. Another doctor had been to see him, there had been a mistake, he wasn’t being discharged after all. It was an expensive, unnecessary trip but at least Neu would hopefully get some treatment now.

Neu was put on anticoagulant drugs and the doctors talked about putting another catheter in his leg. Neu pointed out that he’d had catheters in each leg before. The first one failed within hours, so it was replaced with one in his other leg, which failed the next day. Following that, he developed thrombosis in both legs and needed emergency surgery to fit a filter in the inferior vena cava. The filter wasn’t taken out in time and can no longer be removed.

At home and in the kitchen, my DIY project was coming along. I’d moved and re-plumbed in the sink and washing machine. My son and I had whitewashed the walls, one worksurface was finished and I’d cut the second surface to fit the curve of the wall.

After ten days in the hospital, Neu was discharged, he still hadn’t seen the vascular surgeon but was given an appointment to see him as an outpatient in three weeks time. Neu was told to keep taking the anticoagulants, which did seem to be helping, he was no longer as swollen as he had been. Weekly blood tests would allow the dialysis clinic to monitor the effect of the anti coagulant in his blood and adjust the dose if needed.

At the appointment with the vascular surgeon, Neu was seen by one doctor, then by his superior, and finally by the specialist surgeon, who quickly assessed Neu as needing surgery urgently.

Sometimes I feel like bouncing my head off the wall. Ten days in the hospital not seeing the specialist and being told by other doctors that there was nothing urgent about his situation and he didn’t need surgery. Now he’s deemed as needing surgery urgently but the chances of him getting back into the hospital any time soon, are slim.

Meanwhile, Neu is to keep taking the anticoagulant, which is at least helping a bit and, in case he isn’t called for surgery within the next couple of months, he has a return appointment with the specialist in December.

Once again we are waiting with fingers crossed for Neu, I seem to live with my fingers crossed for him.
At least the kitchen is looking good now.