Herbert Rude, as appeared in Alpha1 Journal 1-2024.

Sometimes it's okay to say no during a lung function test!

Most Alpha-1 pulmonary function testers have likely undergone numerous tests during their careers. Because the devices are sensitive and therefore prone to errors, these tests often need to be repeated, sometimes even several times in a row. "This can be extremely taxing, especially for oxygen patients, but not only for them," said Therese Kauf from the Alpha-1 Center in Augsburg at a recent patient information day hosted by CSL Behring in Mainz, which was also attended by many members of the Rhein-Main-Nahe self-help group and focused entirely on lung health.

Deep exhalation during the measurement can be particularly strenuous. "Therefore, patients should sometimes say no when asked to repeat the test one or more times, especially if the reading is roughly the same as in previous tests," the specialist advises. She recommends starting the test calmly and relaxed: "It's better to pass the test once than ten times badly," she says. "This includes being calm and relaxed, and patients should also point this out to the assistants if the hectic atmosphere in the practice or clinic is interfering with this relaxation."„

Initially, the test focuses solely on calm inhalation and exhalation. When a valve then blocks the airflow, it measures the breathing pressure. This valve is also used immediately before inhalation, as it measures how much air remains in the lungs after exhalation. After the final valve, the test involves calm and even exhalation, followed by a deep breath, and finally, at least six seconds of forceful exhalation. "It's crucial to participate with maximum effort, even if it's physically demanding. The results indicate the extent of any potential obstruction," explains the staff member from the Augsburg Center. Measurements include FEV1 (forced expiratory volume in one second) and FVC (forced vital capacity), as well as total lung capacity (TLC) and ERV (extended reserve volume), which measures how much additional air can be exhaled with effort after a normal exhalation.

In addition to lung function tests, Kauf also considers regular diffusion capacity measurements to be useful. These measurements assess the exchange between oxygen and carbon dioxide, specifically the loss of exchange surface area due to damaged alveoli. The measurement is performed by adding CO, or carbon monoxide, because it is absorbed just as quickly as oxygen. During this test, it's important to hold your breath for eight to ten seconds after inhaling. "Because it takes time for the gas to enter the bloodstream," the specialist explains.

Herbert Rude, SHG Rhein-Main-Nahe. Published in Alpha1 Journal 1/2022.

…and how our neck hurts our fitness – a CSL event in Mainz

It feels like we've been lurching from one crisis to the next for the past few years: the financial crisis, the euro crisis, the coronavirus crisis, and now the war in Ukraine. Meanwhile, people with a high enzyme deficiency are often already burdened enough by the secondary illnesses resulting from their deficiency. Crises disrupt their emotional balance and can trigger anxiety and even depression. "That's why crises must be managed, and strengthening resilience helps with that," said Ines Schneider, an anti-crisis coach, at the patient event in Mainz.

Finally, an in-person event was held again in the Rhein-Main-Nahe region for the self-help group, and the numerous exercises designed to strengthen resilience demonstrated just how beneficial it was. "Thoughts influence the body, but the body also influences thoughts," explained the coach. Singing, humming, or breathing exercises, as well as visualizing a walk by the sea with the cries of seagulls and a gentle breeze, can help with panic attacks, palpitations, or outbursts of anger.

Overcoming crises with splashes of color – and how our throat robs us of fitness – a CSL event in Mainz

Herbert Rude, Group Leader SHG Rhine-Main-Nahe

It feels like we've been lurching from one crisis to the next for the past few years: the financial crisis, the euro crisis, the coronavirus crisis, and now the war in Ukraine. Meanwhile, people with a high enzyme deficiency are often already burdened enough by the health problems resulting from their deficiency. Crises disrupt their emotional balance, can trigger anxiety, and even depression. "That's why crises need to be managed, and strengthening resilience helps with that," said Ines Schneider, an anti-crisis coach, at a recent patient event in Mainz.

Finally, an in-person event was held again in the Rhein-Main-Nahe region for the self-help group, and the numerous exercises designed to strengthen resilience demonstrated just how beneficial it was. "Thoughts influence the body, but the body also influences thoughts," said the coach. Singing, humming, or breathing exercises can help with panic attacks, palpitations, or outbursts of anger, as can visualizing a walk by the sea with the cries of seagulls and a gentle breeze.

Resilience – or the ability to withstand adversity – results from becoming aware of positive emotions. "The little bright spots in life are important," she said. Focusing on these leads to inner peace, and that strengthens resilience.

This isn't about denying the crises; they must be accepted and processed. The focus must be on solutions. This is achieved much more effectively by activating internal resources. Because...Visible thoughts and positive inner images strengthened, as did corresponding bodily activities and bodily impulses Nervous system: They led to the production and release of Neurotransmitters and hormones that have an antidepressant effect and affect our Support the immune system.

Since the body influences mood, there are also very simple ways to strengthen resilience: "Head up, chest out, and smile," she recommends, among other things. And: "Practice, practice, practice."„

The second topic of the event was sleep apnea. "It is dangerous and its consequences are underestimated," said Dr. Andreas Forster, a pulmonologist from Darmstadt. He referred to studies by the Federal Highway Research Institute, according to which probably one in four traffic fatalities is attributable to sleep deprivation.

„"It becomes dangerous when the upper airways become blocked during sleep," explains Dr. Forster. This causes the oxygen level in the blood to drop, while CO2 accumulates. The result is brief awakenings, so short that the person doesn't even notice them. These awakenings prevent the onset of deep sleep, leaving the affected person feeling unrested and tired during the day. In the long term, this can lead to dangerous conditions such as atrial fibrillation or diabetes.

Since the relevant muscle between the throat and neck is passive, it cannot be trained. For many patients, weight loss is a possible treatment option, as 70 percent of apnea cases are due to severe obesity. "But 30 percent are not," says Dr. Forster.

The most common and successful treatment involves wearing a breathing mask that uses pressure to keep the throat and neck area open during sleep. The appropriate pressure is set in a sleep lab. However, for many patients with mild sleep apnea, simply sleeping on their side instead of their back is helpful.

Herbert Rude, May 14, 2022