I can cope well with dialysis as things are at the moment

Photo of an older man

Ed, 83 years old

“I have developed an almost family-like relationship with the other patients and nurses over time. After all, I've been going there several times a week for quite a long time.”

I’m not sure when it all started. Often, kidneys that aren’t working properly anymore don’t cause any symptoms. I can remember that my kidney readings weren't great when my family doctor did a blood test some 30 or so years ago. He advised me to drink more fluids. And that’s what I did. The results were then fine for a good while.

But then the readings went back up again about eight or nine years ago. I didn’t feel anything though. The levels weren't terrible, but they were borderline. My doctor prescribed medication, and I took it. I then went for regular check-ups and the readings stayed borderline. That put my mind slightly at rest.

My kidneys were no longer getting enough blood

A little while later I had an ultrasound scan of my kidneys. They found that the left kidney had shrunk a lot and was hardly working at all. The right kidney was not in top form, but it was still working. It wasn’t getting enough blood because the renal artery was narrowed.

A catheterization was suggested to take a closer look at the artery. I had that done, too. They took the opportunity to put in a stent to open up the narrowed artery. That solved the problem at first. The readings got a bit better. But the kidney tissue was already quite damaged because of the circulation problems.

Kidney failure

In early 2016 I went to the hospital to have a treated. I had a . I got over that well, but my kidneys gave up.

The readings were so bad that I had to go for emergency dialysis while still in the hospital. They told me that I should expect to have to go for dialysis for the rest of my life. And that’s how it turned out.

Living with the dialysis center

There are about five or six dialysis centers in my hometown. I chose to go to the dialysis center right next to the hospital, and I still go there now.

I haven’t been a dialysis patient for long, only for about a year. It took me a little while to get used to the idea of having to go to dialysis several times a week for the rest of my life.

That now takes up three mornings each week. There are certain events and invitations that I can’t attend now because of that. I also have to plan my holidays around dialysis. You can skip one day of dialysis if there is something very important going on. But they are very special situations.

I currently go to dialysis on Tuesdays, Thursdays and Saturdays. A taxi picks me up at 7 in the morning. I share a room at the dialysis center with three ladies. I almost always see the same people there, so we have all known each other for a while. Everything works on a first come, first serve basis. I am always there for about four hours. How long it takes overall also depends on how busy it is.

I am usually finished by noon at the latest. I sometimes have to wait a little while until a nurse has time to unhook me from the machine. The taxi takes me back home, that’s all arranged. My wife usually has lunch ready by the time I get home. I have lunch and then usually have a lie down.

The dialysis doesn’t cause me any pain or other symptoms. The only thing that’s unpleasant is when the rather big needle is inserted into my arm at the start. I have never had any problems with this connection, though. I have a shunt.

At first I was also given the option of doing dialysis at home. I looked into it and spoke to people who do dialysis at home. But to be honest, I am scared that something might go wrong. Of course you get training, but I would still be too unsure. I prefer to put up with the journeys to the dialysis center. But everyone has to decide what suits them best.

Like a small family

You have to get used to the amount of time you spend in the dialysis center at first. It’s different in each room. Sometimes patients who might have already known each other for years will have lively conversations about this, that and everything. My room is pretty quiet. The three ladies don’t talk much. But we can watch TV or listen to the radio. And there's an internet connection. Although I don’t find that particularly practical. I do have a tablet, but one of my arms is attached to the machine of course. That makes it a little bit tricky to fiddle around with a tablet or laptop.

You can have a snooze as well, but it’s a bit difficult sometimes. The nurses check you blood pressure from time to time, sometimes something isn’t working properly with one patient or another, or the nurses have to bring some new material in, so it can be quite loud.

I have developed an almost family-like relationship with the other patients and nurses over time. After all, I go there several times a week for quite a long time.

We have adjusted my diet a bit

The kidneys have two functions: removing toxins, and regulating water discharge. Lots of my fellow dialysis patients hardly discharge any water anymore. I'm still doing OK with that. All of the water that your body collects has to be removed during dialysis. That is why kidney patients have to be very careful about what they drink. I am very happy that I don’t have any major problems with that. I drink about 1.5 liters a day and I pee about the same amount. I drink half a liter of tea every morning, with a few sips throughout the day, and then I drink some more tea in the evening. You have to bear in mind that food also contains liquid.

My wife and I have changed our diet a little. We are very careful with salt. I don’t eat any bananas anymore, and generally eat less fresh fruit. And we always soak potatoes now before we cook them. But having to change our diet isn’t a problem for us, we can cope well with that.

Dialysis patients can go on vacation

Last year, we went on vacation for 14 days in Germany. I looked around for other dialysis options, and found a dialysis center near where we were staying. I called them and they said they would need my dialysis data. My dialysis center faxed everything over.

The dialysis center there even arranged my transport from the hotel. I was picked up from the hotel in the morning and brought back around midday. Everything was just like at home. And the staff were really very nice. So, if you look around a bit, you can find dialysis options in lots of places. Some cruise ships now even offer dialysis stations.

I don't have any problems with the medication

I take tablets for my high blood pressure every day, and tolerate them well. I also take cholesterol lowering medication. I used to take medication because my uric acid levels were too high. But my doctor then told me I didn't need to take them anymore because the levels were fine.

I have check-ups every three months. They are done at the dialysis center. The blood is already in the machine, so they don't have to put another needle in.

Exercise is a little trickier at my age

I am quite old – I am 83. Sport isn’t terribly easy at that age. Walking isn't as easy as it used to be. I can use a bed-bike at the dialysis center. It is placed at the end of the bed and you can cycle while lying on your back. It is great and I also did that for a while.

At first I had a , which was inserted in my shoulder. That was very handy because I was a bit more free to move during dialysis, so it was a bit easier to use the bed-bike. The only drawback for me was that I had to stick a big patch over the spot where the is inserted when I showered. But because there is a very high risk of with a , after a while the doctors urged me to have another passageway put in instead – the shunt.

I haven't done any cycling since getting the shunt. But I have thought about asking for the bike again. I now have a walking frame after my wife pressured me to get one. I can take a seat on it when I am out and about, which motivates me a bit more to take slightly longer walks.

Deciding whether to have dialysis or not is a personal choice

Deciding whether to have dialysis or not is a very personal thing. If you decide not to have dialysis, your days really will be numbered.

At my age, a kidney transplant isn’t an option. And nobody has ever suggested that to me. It often isn’t that simple. I can cope well with dialysis as things are at the moment.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Created on June 28, 2022

Next planned update: 2025

Publisher:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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