Home dialysis: a piece of independence
Claudia John
She is a power woman. Do not hesitate long when the job is calling or making decisions, hopp or top. Even when she's in bed, connected to the dialysis machine that is pumping her blood. The phone rings, a conversation with a lawyer about operational layoffs. As the chairman of a works council of a large conglomerate in Stuttgart, she has many things to do. "Terminations are going to my kidneys," says Claudia John and makes a face. Your kidneys are not working anymore. Five years ago she was diagnosed after a blood test: both kidneys were irreversibly damaged. A shock. With a slight hoarseness in her voice, the 46-year-old tells, frankly, not bitterly. She is not one who can be stopped by a disease. "Sometimes it's annoying, but you get used to everything" is one of the few concessions the dialysis patient makes. To quarrel and to bother is alright, not to indulge in wailing. When she had to vomit two years ago in spite of medication and limp while walking, it was clear that dialysis was inevitable. "But at home," Claudia John decided. To be independent of time. So she washes her blood three times a week for eight hours overnight, in her own bed, instead of in a dialysis center during the day or in the evening. This fits more to their life rhythm.
She is bustling and assertive, has an exhausting job as a project assistant in software development alongside her family and her house near Tübingen. She sees that she can no longer eat what she feels like, only wandering and swimming several times a week instead of climbing high mountains, something she used to like to do. But shorter career - no way. She loves her job, "besides, he challenges me and keeps me from constantly thinking of my illness," says Claudia John, leaning back and enjoying her cappuccino with sugar and a large hood of milk froth: "Milk does not work, too much phosphate. "
The limitations of kidney failure are enormous, which is why Claudia John has a severely handicapped card. In Chinese medicine, the kidney is considered the root of life. As a vital organ, it detoxifies the body and regulates levels for salts, water and blood pressure levels, as well as producing hormones. If sick kidneys fail, a human can only survive if their function is replaced by dialysis. The diet of the dialysis patient is narrow: low in salt, a lot of protein, not too much potassium and phosphates and little to drink, so that the machine does not have to drain too much. "Which strikes me hardest", even if Claudia does not cling to it slavishly. You hardly believe it, but you should eat fat instead of lean meat to give the body the necessary protein. That's not her cup of tea, so she'll reward herself with a glass of wine or beer. Even fruit is not healthy for her, yet she eats a handful of grapes every now and then. Apricots and bananas are quite taboo for this: "It's about finding a balance."
So it is on vacation. "Already corrosive if you have to go apres-ski to the dialysis center." Spontaneously as in the past with tent and backpack go off is no more. A supply of EPO, a drug known as a doping agent, but developed against anemia in kidney patients, is as necessary as a place for holiday dialysis, which should be reserved half a year in advance. Such offers do not exist everywhere. In France, where Claudia and her family like to go, it looks bad, in Italy, Croatia, Austria and Switzerland quite well. It is never completely free in her vacation planning, but if Claudia remembers what interesting encounters she has already made in various stations abroad, that is a certain compensation.
You can live with it, not just survive it.
Be sick, but not at the mercy of ruin. "You can live with it, not just survive it," she says positively. If you find your own way. She is an organizational talent, creates weekly plans, the family helps. For the past few weeks she has been traveling a lot for business. Monday and Tuesday training in Karlsruhe with overnight stay, Tuesday to work in Stuttgart, at night dialysis, Wednesday free, Thursday again Karlsruhe, Friday Esslingen, in the evening she is tired and goes earlier than usual to bed. And to dialysis. The blue box, on whose monitors various displays flash, gurgles and hums like a washing machine. It's difficult for her, but Claudia John has to help herself when connecting and disconnecting to the device.Blood can see them, even the two needles themselves pierce, one into the artery, from which the blood flows out, the other into the vein for the reflux. Her husband, Ingo Becker, pours open the transparent tubes.
Previously, he stapled a saline bag, a heparin anticoagulant syringe, and the osmosis filter cartridge to the dialysis machine. For three months, the two trained the processes at a machine in the dialysis center, while at home put an extra water and electricity connection in the bedroom, set up the 200-kilo-heavy box and created a material store in the basement. The health insurance companies pay all the costs, the home dialysis is cheaper than the stationary. The piercing of the needles is millimeter work. Then Claudia measures the blood pressure, while her husband sets at the touch of a button, how much water should be removed from the body. "The idea of the blood flowing outside the body was strange at first," she says, even though it's only a quarter-liter. In hemodialysis, the blood is pumped out of the body via a tube system and sent through a special membrane that filters out harmful substances and excess water. The purified blood is then returned.
"I have to come to terms with the fact that I'm no longer free but dependent on man and machine," says Claudia John. Late last night, when she noticed at eleven o'clock that she was missing a necessary liquid concentrate because she had forgotten to order it in time, she sat in her car and got a canister herself from the dialysis center in Tübingen. Her husband, Ingo, has to plan more than before, so if she does her dialysis, she has to be there in the evening and in the morning to lock up and lock up the machine.
Home dialysis detoxifies the body more gently
I have to come to terms with the fact that I am no longer free but dependent on man and machine.
The suggestion to try home dialysis had come from her doctor at the Tübingen dialysis center. "Hemodialysis at home can actually be done by anyone who is not old and lapsing and has a partner who helps," says nephrologist Dr. Gunther Scholl. One only has to dare to sit down, to deal with the device and its functions, to order materials and to know what to do if, for example, the blood pressure drops because it has been dehydrated too quickly. Despite the training, at first Claudia John minor breakdowns have happened. Then she was glad if her husband could call the dialysis center and get help from there. Compared to Norway or France, the network of dialysis centers in Germany is tightly woven, one reason why only a few patients dialysed themselves. Many also shy away from their own responsibility for their illness.
Gunther Scholl advises younger patients in particular for home dialysis. Anyone who washes their blood in the dialysis center spends twelve to fifteen hours a week, who detoxifies their body at home, makes it much more gentle in 24 hours a week. These patients feel more physically happy, their blood levels are better, they are allowed to drink more and are more free in their time management. On average, a dialysis patient waits seven years until the kidney of an organ donor is used. Claudia John has a friend who met her on the dialysis ward, which has been waiting for ten years. More than 60,000 kidney patients hope for a transplant in Germany. In 2009, there were only 1217 people who donated their organs after their death, very little compared to other European countries. In addition, there are about 600 living donors, such as the SPD politician Frank-Walter Steinmeier, who donated one of his two functioning kidneys to his wife. You can live well with one.
The two needles can pierce Claudia John herself. Her husband plugs the tubes for dialysis.
Claudia John wanted to transplant a kidney of her mother, but a stroke stopped this project. Her husband is ready to donate. However, as long as their 15-year-old son Niklas is not an adult, the parents shy away from the risk associated with such an operation. Especially since Niklas has already lost his older brother in an accident. A transplanted organ usually does not last for the rest of life; it is poisoned by the drugs, the immunosuppressants, which are supposed to prevent a rejection reaction. If Claudia is unexpectedly transplanted a kidney in the foreseeable future, her husband could be available as a second donor. Niklas serves spaghetti. In the middle of puberty, he feels responsible and cooks twice a week to relieve his parents. The mother is proud of him, radiates. "But spaghetti without parmesan does not work," says Claudia John. And though she should handle hard cheese carefully, she spreads a decent spoonful of it on the plate. Exceptionally.
Dialysis: What options do kidney patients have?
hemodialysis: The blood circulation is connected to a machine. The patient's blood is purified outside the body using filters and dialysis fluid. The treatment takes place in the dialysis center three times a week over four hours.More information and addresses: www.dialyseauskunft.de
Home Dialysis: She is home-made three times a week for eight hours on her own responsibility. A strong will and stamina are important to acquire the necessary knowledge. Maybe the willingness of the partner to take over the function of "dialysis nurse". Patient and partner are trained by the responsible dialysis center for three to six months. For dialysis, a bed or a couch, an osmosis (water treatment) and a dialysis machine are needed. This requires about six square meters of space. For the storage of the necessary consumables you need an additional two square meters. The supervising dialysis center provides everything for free. Financing of the necessary conversion (water connection, drain and electrical connection) is usually carried out by the supervising dialysis center. More information: www.heimdialyse-online.de
Peritoneal dialysis: Rarely. By means of a catheter, which is implanted in the abdominal wall, the dialysis fluid is pumped into the abdominal cavity to cleanse the blood there. The peritoneum acts as a filter. Dialysing is done at home for two to three hours a day. There is a risk of infection with this method.
General information: Association of German Renal Centers (DN) e.V., www.ddnae.de; Kidney phone: 08 00/248 48 48 (toll free); German Foundation for Organ Transplantation (DSO), www.dso.de; TransDia - Sports and Exercise for Transplanted and Dialysis Patients, www.transdiaev.de
