Choosing home dialysis was exactly right for me back then

I started to feel ill about six years later. I felt increasingly exhausted. I also got strange rashes, was short of breath and was cognitively not at my best. What I just cannot fathom today is that even though I knew I had kidney problems and it was only a matter of time until I would have to go for dialysis, it wasn’t on my mind at all. I had obviously completely repressed it and didn’t think that it could be the cause of how I was feeling at all.

I was feeling worse and worse and at some point I went to see my family doctor. He checked my heart and circulation, but didn’t find anything. Now I know what gradual poisoning because of kidney failure feels like. Because my cognitive faculties were getting worse and worse, I probably wasn’t able to understand what was wrong with me anymore and react to it. I could hardly get out of bed by the end. To put it bluntly, I was slowly dying.

In the fall of 1986, I was taken to hospital in an ambulance with a nosebleed. The blood was flowing like out of a faucet. It wouldn't stop. They tried to stop the bleeding in the emergency room. They took some blood and did a blood count. The doctor then came back, and I can remember exactly how he said that the readings couldn’t be right. That something must have gone wrong in the laboratory. They then took some more blood, and the levels were just as bad. I had acute blood poisoning and had to stay in intensive care at first. The next day, I had my first ever dialysis in the hospital. But I don't remember that anymore.

My memory only came back with the second dialysis. It was rather unpleasant at first. But after one or two weeks, I did quickly notice that my health was significantly improving. The treatment – the dialysis machine – was like a life saver to me. I quickly realized and accepted that the dialysis was there to stay.

I was referred directly to a dialysis center when I was sent home from hospital. The doctor there strongly recommended that I try dialysis at home. That meant training at the dialysis center. And then with somebody doing civilian service – that still existed in Germany back then – to help me to do the dialysis myself three times a week at home. The aim was to be as independent as possible with the home dialysis. I was only in my mid 20s at the time and was still at university.

I set up a dialysis room in my apartment. The room had a bed and the dialysis machine, which takes up plenty of space with all the tubes. I had to shift things around a bit. The machine needs its own electricity circuit and has to be connected to the water mains, and there is also an osmosis system for preparing the water for dialysis. That took quite a lot of work.

Home dialysis also means that you don't have to follow such a strict schedule. I decided to do dialysis on Mondays, Wednesdays and Fridays. I arranged with the civilian service person whether we would do it in the morning or evening. That meant that I was a lot more flexible than with the fixed times in the dialysis center. And then there is the trip to the dialysis center. With home dialysis, I could carry on studying and then start working with some restrictions, but nothing too disruptive.

I still work in the same profession. I am self-employed, which was a good decision. If you aren't self-employed, I can imagine dialysis could be quite tricky. I can combine the two very well.

About ten years ago, a doctor from the dialysis center advised me to switch to daily home dialysis. The reason for that was my relatively stable state of health, and that I didn’t have any other illnesses which could have made home dialysis difficult.

That meant I did a two and half hour dialysis every day except for Sunday. Otherwise, it takes four and a half or five hours, so that gave me some more time each day. I was able to do that on my own, without civilian service help. That was good, because not as many people were doing that by that time. New technical developments in the machines meant I could do it all myself. That went on for a couple of years.

About six years ago, my mother became ill and I took care of her. But I then had three things to take care of – my mother, my work, and my home dialysis. That is why, after a while, I asked if I could go to a dialysis center on a temporary basis. I then went there three times a week.

I eventually carried on going there, even though I had been against going to a dialysis center with fixed times all those years. But I did actually like it there and I was able to make some friendly contacts with other patients and the staff.

I like going there. I have got used to the travel and the fixed times. In total, the dialysis definitely takes more time though. And then there is the travel time. Because there are five of us in the room, there are often delays here and there. Basically, I am out from seven in the morning until midday or early afternoon.

That's more time than if I do the dialysis at home. But I can work there, or if I don’t have much to do I can use the free time to read or surf the net. But I can work well on my tablet during dialysis. That usually works quite well and it isn’t lost time.

You can choose between various dialysis options: Dialysis in a center or at home, hemodialysis or peritoneal dialysis. And if your health allows, you can also switch between the different options.

Choosing home dialysis was exactly right for me back then. After all, I did that for 25 years and it really paid off for me. And the daily dialysis was very good for me as well for a long while. It made a difference to me whether I was hooked up to the machine for five or just two and a half hours. I used to get up in the morning, hook myself up to the machine, and was finished by 10 and still had the whole day ahead of me. That independence and a certain degree of freedom was great with home dialysis.

Peritoneal dialysis wasn’t an option for me personally. It seemed too complex. And I also didn't particularly like the idea of always having an opening in my stomach. But there are patients who choose it because it suits their lifestyles better. It is a bit easier to travel with that system, for example.

The network of vacation dialysis options is so vast today, though, that you can pretty much travel all over the world, at least to the typical holiday destinations, as a dialysis patient. I have had good experiences of that, like in Spain. For a while I was also traveling regularly in Germany, or commuting. I always went to the dialysis center there. I arranged that together with the dialysis center, but it really wasn’t difficult to organize and was very fast, simple and uncomplicated.

Doing this procedure for years doesn’t go unnoticed. I notice it in my bones, my back, and my joints. I am nowhere near as mobile anymore as I would like to be. Something is always hurting. I now prefer to drive more often than I take the train.

I also have a nervous disorder called polyneuropathy in my extremities. It is progressing very gradually. I particularly notice it as numbness in my fingers; they aren't sensitive anymore. I have to be very careful not to drop things. That is very distressing and I feel very restricted.

I don't have many problems with the access. After the shunt was fitted the first time, it had to be readjusted shortly after. But that access then held out for about 27 years with no major problems. And then one day, when I went to the dialysis center as usual, it was closed. That was quite annoying. I had to be taken to hospital for the shunt to be corrected. That has to be done straight away because you can’t wait forever for the dialysis. It wasn’t a huge issue, but you are kind of torn out of your daily routine all of a sudden. That isn’t very nice. But it has been working fine again since then.

I have had two transplants in the past, one about ten years ago, the other about 20 years ago. Neither of them was successful. That is quite unusual. My body simply didn't accept the organs. I also got infections, meaning that I was in hospital for about half a year to get things sorted after the first transplant.

I am currently weighing up whether I should give it a third shot. Despite the after-effects, I am still fit and also still quite young at 56. The doctors have said that from a physical point of view, I could definitely try another transplant. The thought that it might work and I could get away from the machine is very tempting. But if I think back to how the first two transplants went and that I have coped well with the dialysis all these years despite the restrictions, it is a very difficult decision.

My blood pressure is always very up and down. It is either too high or too low. I rarely have phases of normal blood pressure. It is too high at the moment and we are trying to manage that with blood pressure lowering medication. I also take vitamins and phosphate binders, and I am also given a blood formation medication like a lot of patients with a kidney disease probably.

I don’t pee at all anymore. That means everything I drink stays in my body. That then has to be flushed out by the dialysis. Unlike a lot of other patients, my problem is more that I don’t drink enough. I just don't feel thirsty and really have to force myself to drink enough throughout the day.

But everything is pretty uncomplicated with eating. I can basically eat whatever I want in moderation. At first, I used some small scales to weigh exactly how much of what foods I could eat. I haven’t been doing that for a long while now, though. I think I have developed a pretty good feel for it over time. For example, if I have had a bit too much potassium, I often get cramps in my calf muscles. Then I have to do something about that, because too much potassium in your body can be dangerous.

I was able to accept the dialysis quite easily. It was a very fast improvement for me from an extremely bad state of health back to a normal life, with the restriction of dialysis three times a week. I was so grateful for the machine. It was the only way I could carry on living. Which I definitely wanted to do – I hadn't properly started to live yet.

But I know other patients who feel differently and have major problems with it. Particularly at first, it can be difficult to accept the dialysis. I think it is important that these patients seek help to learn how to live with dialysis. Over time, you can lead an almost normal life. There are no major restrictions for taking part in public life or having relationships. I don't think there is any reason to be depressed about needing dialysis: It is not the end of your life!