A cracked back – not pleasant, but not really bad either,” thought Sylvia Weiland from Altenstadt in Bavaria when her spine began to give way in December 2003. With a supporting kidney belt, the then 42-year-old dragged herself to work. Only when the pain got worse did she seek help in the clinic. “Lumbago” was the diagnosis after the X-ray. A nuclear spin examination is not necessary and too expensive.
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diagnosis leukemia
Various malignant diseases are summarized under this name, in which the proliferation of white blood cells is increased. Hence the term “blood cancer”. There are acute and chronic forms. Every 45 minutes someone in Germany is diagnosed with leukemia – including many children. The chances of recovery depend on the type of leukemia, the age and the state of health of the patient. Stem cell transplantation is an option for 30 to 40 percent of those affected. Even with cancer of the bone marrow such as plasmacytoma (multiple myeloma), often only a transplant can help.
But despite painkillers, the symptoms became even more severe. The family doctor, who was informed at the beginning of January, immediately ordered further examinations: magnetic resonance imaging and computed tomography by specialists in a Munich clinic. He also insisted on a tissue removal. “I’ll never forget the moment when the orthopedist said, ‘We’re sorry. You have to go to the tumor department,’” Sylvia Weiland recalls. The doctors had discovered a tumor in the spine, a plasmacytoma. In this cancer of the bone marrow, abnormal plasma cells multiply and produce antibodies, which can lead to bone pain and the dissolution of the bones.
Do not give up!
“First I received chemotherapy with tablets, then IV fluids,” she recalls. When neither helped, the first stem cell donation, a so-called “autologous”, was pending. This means: First, bone marrow is removed from the patient and filtered. He then receives high-dose chemotherapy, after which he gets his own stem cells back. “When this procedure didn’t work either, my family becamesearched for a bone marrow donor – unsuccessful.” At this point, the chemotherapy had already weakened Sylvia Weiland. In April 2004 a big search started. All of the data registered with the German Bone Marrow Donor Center (DKMS) in Tübingen was compared with that of Sylvia Weiland. As with the much more common leukemia, the same applies to plasmacytoma: the recipient’s body can only tolerate the donated bone marrow if numerous blood characteristics match. However, a suitable donor is not always found. And with Sylvia Weiland, time was of the essence…
donor found
Karin Weber was amazed when a letter from the DKMS fluttered into her house in May 2004. Ten years earlier, at the age of 22, she had registered there. “To be honest, I never believed that anyone would ever ask me to make a donation,” recalls the mother of three from Erharting in Upper Bavaria. Your family doctor took blood for a fine typing. A few weeks later, more blood tests followed. Then at the end of June the message: “Please contact the DKMS immediately.”
Karin Weber was actually the “needle in a haystack” you were looking for. Her blood characteristics matched 100 percent with those of Sylvia Weiland. Everything had to happen very quickly now. “I was supposed to fly to Dresden for the collection – but the DKMS immediately covered the costs for childcare and also made sure that my husband could accompany me without loss of earnings,” says Karin Weber. Everything went smoothly.
The procedure was explained in detail on site and the donor checked again. Everything was in order. At home she had received a drug that stimulates stem cell production. The only consequences: back and joint pain. “The donation itself took three hours twice and wasn’t particularly uncomfortable – similar to donating blood,” she recalls. “I was told that a 43-year-old woman was the recipient. During the removal I always thought: ‘Hopefully I can help her!’” Karin Weber found out three months later that the stranger was actually doing better. “I then regularly asked DKMS about her.”
The rescue
Sylvia Weiland was completely isolated in the clinic for two weeks and received high-dose chemotherapy that destroyed her diseased bone marrow. She felt tired, first losing her appetite, then her hair, vomited her medication. “But when I got the stem cell infusion I was longing for, I just thought: Thank you, thank you, thank you!” she recalls of that moment. “All I knew was that the donation came from a young woman in Dresden.” After just a few days, Sylvia Weiland’s blood values improved. For the first 100 days after the transplant, she had to follow strict rules: no sun, no carpets, no flowers, strict dietary requirements, avoiding crowds because of the risk of infection. She strictly adhered to that. “I was lucky enough to be given a second life – I couldn’t risk that lightly!” Sylvia Weiland firmly believed that everything would be fine. And got right.
The meeting
Although both women had agreed to an exchange of their data, they were only allowed to contact each other after two years. Sylvia Weiland sent her unknown donor a thank you card. Karin Weber then picked up the phone. “At first we approached each other cautiously,” she recalls. But the “blood relatives” quickly became sympathetic. All the more so when they realized that they live only 180 kilometers apart in Bavaria. Because of the cell removal in Dresden, both had believed that the other was definitely a “Prussian”. The first meeting was also cordial. “We think alike about many things,” says Karin Weber. “And even if we only speak to each other from time to time, the relationship is then very intense, brotherly,” adds Sylvia Weiland. she is convinced that Karin not only gave her a new life, but also some of her qualities. “My hair is now dark instead of blonde. Also, my passion for tea suddenly disappeared. Today I am a convinced coffee drinker – like Karin.” Is she afraid that the cancer will come back? “No!” says Sylvia Weiland with conviction. “Because now I know the disease, I know what to expect if it relapses. I have to and can live with this risk. In addition, Karin would donate to me again at any time.” says Sylvia Weiland with conviction. “Because now I know the disease, I know what to expect if it relapses. I have to and can live with this risk. In addition, Karin would donate to me again at any time.” says Sylvia Weiland with conviction. “Because now I know the disease, I know what to expect if it relapses. I have to and can live with this risk. In addition, Karin would donate to me again at any time.”
This is how you become a life giver
The registration
Many roads lead to the DKMS (address on previous page). After public appeals, at company campaigns, by letter or on the Internet, those willing to donate get in touch. Eligible are women and men between the ages of 18 and 55. After the declaration of consent, a blood sample usually follows to determine the tissue characteristics. Even easier: a cotton swab swab from the cheek mucosa. The 50 euros costs for registration and laboratory tests are financed by the potential donor or by donations.
The capture
Personal data is stored exclusively at DKMS. Only the search-relevant data with the assigned donor number go to national or international search registers such as the ZKRD (Central Bone Marrow Donor Register for Germany) in Ulm.
The search
For a successful transplantation, the tissue characteristics of the donor and patient must match as far as possible. In the case of frequent combinations of characteristics, a single donor may be found in 20,000, in rare cases none in millions. If a donor suits the patient and is still willing to make the donation, it can be carried out after further thorough health examinations.
The donation
There are two ways to obtain the much-needed stem cells: bone marrow harvesting and what is known as peripheral stem cell harvesting. In both cases, the donor is thoroughly examined beforehand, and the doctor then decides which method to use.
– When the bone marrow is removed, about 1 liter of bone marrow-blood mixture is taken from the rear pelvic bone of the donor under general anesthesia using puncture needles – not, as many people think, from the spinal cord. This takes about an hour. The blood mixture is completely reformed within two weeks.
– A growth hormone is injected into the abdomen of the donor for five days prior to the peripheral stem cell collection. It ensures that as many stem cells as possible are released from the bone marrow into the blood. The drug can cause flu-like symptoms that go away quickly. For the stem cell removal, the donor receives venous access in both arms. The blood flows from one arm through a cell separator and back into the body via the second access on the other arm. In this device, the stem cells are separated from the rest of the blood. This is done on an outpatient basis and takes about three to four hours over a maximum of two days.