Ipswich & District Kidney Association

Gail's Story

 

My husband’s kidney failure started at birth and against all odds, he actually made it to the ripe old age of 52 before his health started to affect his work. Even then, he would have gone to work if he hadn’t been called in to hospital.

We had been married for 32 years knowing that this was going to happen, I didn’t worry much as he’d defied the doctors all his life. I knew nothing about dialysis, apart from the basics and thought he’d go to the hospital a couple of times a week, working in between sessions, have a transplant when one became available and everything would be fine after that.  How wrong was I? 

When we arrived at the hospital Nick, my husband, asked about having dialysis at home and we were taken to the renal unit to talk to someone from Home Therapies whilst they found theatre space to fit his emergency neckline. Apparently, they give training and you can actually have a dialysis machine at home; as long as you have someone to help with the treatment, a room big enough for the machine as well as an RO and somewhere to keep a month’s supply of stock. 

Although Nick had had a fistula formed, it wasn’t ready to be used, so we learnt to dialyse by neckline at first. It took about 8 weeks being trained by Nick’s named nurse and we were let loose to dialyse at home. I couldn’t believe it, I’m not a nurse and I’ve not had any medical jobs, but I still was able to be trained to do this at home with no supervision - after the nurse had watched us for 2 sessions that is. This is when I became Nick’s carer. I do stock taking every four weeks then someone from Braun phones for the order which is delivered direct from them.

Just after about a year, the unit called us back to teach me how to needle Nick’s fistula, as they had been forming his buttonholes. I must admit that I was a bit dubious about needling due to the lack of medical training, and I’m not very confident when it comes to doing new things. Luckily, Nick’s nurse was so very patient with me and supportive that she made it so easy to believe that I was capable to do the needling, and I was successful with the first needle. Over the next 2 weeks, I did have a couple of times where she needed to take over and, a few times fishing about to find the track, but we were finally sent home to carry on with Nick’s treatment at home.
Whilst dialysing at home, we’re not completely on our own as we can phone the unit whenever a problem pops up that we can’t deal with. If we can’t solve the problem with their input, then Nick will have to go on the unit until everything is sorted. Usually the things that go wrong are machine failure, power cuts or water being turned off for repairs.


Home Dialysis allows a bit of flexibility as we can change the time of day that Nick dialyses if we want to go out, and sometimes we can change the days around if we know something is coming up that we really don’t want to miss. Also when the treatment is over, he has no travelling, so if he needs to lie down, he can, at home without the travelling. 

There is no chance of getting away with any naughtiness at home, as it will show up in the record book we fill in and he’d only be cheating himself in the long run, it is his life he would be playing with anyway. So, we have to abide by certain rules just as you do if dialysing at the unit. Main important ones that come to mind at the moment are;
The treatment has to be done in the times and days that the unit is open so we have their backup, so that means no Sundays.

Any problems outside of hours would mean being taken in to A&E by ambulance and probably a good talking to by the named nurse when she finds out…and she would!

Someone has to be in the house in case of problems during treatment, so no popping off to the shops!
Someone to watch over and help for a couple of hours after coming off in case of low blood pressures causing dizziness or fainting
Eating and drinking limits whilst dialysing are the same as the unit’s.

Obviously, using a dialysing machine at home is going to put the electric and water bills up, so Home Therapies send a cheque every quarter to help with the extra costs. This means that financial matters do not have to make the decision. If it wasn’t for the cheques, Nick would not have been able to Home Dialyse.  

The Home Therapies team are brilliant. They gave us the training we needed, the information we wanted and helped us with the giant changes to our lives that kidney failure causes. It doesn’t just affect the patient, but the whole family as well.