Oxygen & Dialysis

A life with two lifelong therapies

Long-term oxygen therapy and renal replacement therapy – both are my chance to lead a largely normal life. Certainly, my daily routine is now largely dictated by dialysis days (six hours each Monday, Wednesday, and Friday), yet I still have time for a fulfilling private life and to dedicate myself to supporting patients on long-term oxygen therapy. When I was prescribed long-term oxygen therapy more than 17 years ago, I initially felt helpless and skeptical about this new situation. The outlook wasn't promising, and it meant I had to adapt to the new circumstances. However, this required me to be well-informed. So I began gathering information from my doctor, my medical supply provider, online, and in national support groups; and I repeatedly asked them all questions.

Exchanging experiences with other affected individuals as a lifeline

But even that wasn't enough for me. Where were the fellow patients, the ones who knew what it meant to live with long-term oxygen therapy? There were far fewer patients back then than there are today, and where were they? With the support of my doctor, we founded the LOT group in Augsburg, where, for over 13 years now, those affected, and especially newcomers, have been meeting regularly to exchange experiences. And through this work and my continued interest, long-term oxygen therapy, and thus the LOT support group, became my fulfilling hobby. Yes, I would even say today that it's my therapy – or at least my purpose. In 2011, the next lifelong therapy came my way: I've had to go on dialysis ever since. Due to a genetically inherited kidney disease, I had always known that this was coming. Nevertheless, the implementation was once again a drastically disruptive phase of my life. And in 2016, I founded the LOT group in Lindau on Lake Constance, where I happily travel to the meeting every fourth Saturday of the month. Which also gives me a break in a beautiful landscape.

A good doctor-patient relationship is absolutely essential.

A good doctor-patient relationship seems essential to me in order to foster trusting collaboration. For example, I have been a patient of my pulmonologist, Dr. Andreas Hellmann, in Augsburg for 29 years. For the past 13 years, Dr. Thomas Kirschner, also in Augsburg, has been my nephrologist (kidney specialist), and I use the dialysis center attached to his practice. I feel comfortable with both doctors (and their teams), although I have previously been to other doctors where I was dissatisfied or didn't feel well cared for. I believe, and am convinced, that a good doctor-patient relationship greatly contributes to well-being, compliance (adherence to and acceptance of therapy), and the course of treatment.

The 3rd therapy: Commitment to self-help

For me, both therapies represent a chance to continue participating in life, even though my overall health is severely compromised and I can no longer manage my own household. Thus, I retain my "third lifelong therapy": my commitment to long-term oxygen therapy with all its issues, its diversity, and its challenges, and especially being able to participate in training sessions and consultations with other patients. These activities keep me active, challenged, and provide me with a full daily routine, which is beneficial for my mental health and overall well-being.

Ursula Krütt-Bockemühl, as published in Alpha1 Journal 2/2017.

New portable oxygen concentrator

Ursula Krütt-Bockemühl

The eQuinox is a compact, quiet-running mobile concentrator.

With a continuous flow of up to 3 liters and 12 breath-controlled levels, it can offer a respectable supply.
Due to its compact design (27x35x19cm -WxHxD) and lower weight of 6.4 kg, it is particularly suitable for air travel.
The eQuinox can be used at any power outlet and in the car; for mobile operation, two different sized batteries are available.
Included in the delivery is a trolley, as well as a battery (12 cells), power supply for mains connection, power supply for operation in the car, accessory bag, instruction manual and flight documents.

I am happy to provide further information.
Wishing you a good summer

Ursula Krütt-Bockemühl

Tel.: 0821 – 7832 91
E-mail: ursula.kruett-bockemuehl@alpha1-deutschland.org

News about Everest silicone nose glasses

MIC – Medical Instruments Corp. – known as a supplier of 100%igen silicone nasal cannulae in two different lengths, announces two innovations for patients undergoing long-term oxygen therapy.

Firstly, a cleaning solution, especially for silicone nose glasses, that enables fast, targeted, germ-free and universally applicable cleaning!
The nasal cannula cleaning solution helps patients clean nasal cannulas of all kinds, especially after infections, but also routinely in everyday life, practically on vacation or for quick cleaning in between.
Since nasal cannulas and their associated tubing often dry slowly, the bacterium Pseudomonas aeruginosa can multiply in the residual moisture at room temperature.

A cleaning agent for medical devices must meet the same high standards as the products themselves and must be compatible with them.
This means that neither material changes nor functional limitations of the medical device can be observed.
The antibacterial substances in the Everest nasal cannula cleaning solution prevent waterborne germs from entering the nasal cannula and tubing.

Secondly, a novel nasal gel has been developed specifically for users of oxygen nasal cannulas. Even with exemplary hygiene, prolonged use of nasal cannulas can repeatedly lead to problems with the inner lining of the nose. The mucous membranes react with swelling, skin irritation, and crusting.
This results in sores that take a long time to heal or require an alternative oxygen supply via a mask, such as the 'OxyMask'.

Suitable care products are needed for daily care and/or prophylaxis.
Everest oxygen nasal gel is specially designed for use with oxygen, so it is free of fats and oils.

Based on an aqueous formula with antibacterial substances – polyaminopropyl (polyhexanide-betaine complex) – it offers and is certified as well-tolerated, even by allergy sufferers. Naturally, an expert opinion on the use of Everest Oxygen Nasal Gel and Everest Nasal Cannula Cleaning Solution is available.

Everest silicone nose glasses are now also available with curved nose bridges in two different lengths. Please see our current summer offer for details.

You can also find more information on the new advice page.
www.copd-info.com with daily personal consultation chat and news about lung diseases.

Or via the advice hotline Tel: 05221/12253-50

Medical Instruments Corp, GmbH, 32049 Herford

Oxygen in everyday life – but how?

Information about long-term oxygen therapy from the training program of the German Oxygen League LOT eV

To improve the quality and duration of life for patients with chronic and severe oxygen deficiency, those affected are tested for the possibility of long-term oxygen therapy (LTOT). All drug treatment options are exhausted beforehand. During testing, which involves multiple blood gas analyses – including under stress – the partial pressure of oxygen must repeatedly fall within a critical range of < 55 mmHg. Furthermore, it must be demonstrated that oxygen administration improves these values.

Lung diseases are the main cause of oxygen deficiency

Oxygen deficiency can be caused by various illnesses. Above all, lung diseases, especially... COPD, emphysema and Alpha-1 antitrypsin deficiency. Pulmonary fibrosis, pulmonary embolisms, and pulmonary hypertension can also lead to oxygen deficiency; in addition, certain heart defects or paralysis of the respiratory muscles can cause it. Long-term oxygen therapy serves not only to supply the internal organs but also to relieve the strain on the heart.

Long-term oxygen therapy should be administered for at least 16 hours a day, ideally 24 hours, according to the guidelines of the German Society for Pneumology. Good patient cooperation is essential for the success of the treatment. The required 16-hour daily duration of use may seem easy to achieve. Many patients "hide" most of their oxygen therapy at night, meaning they take the oxygen during the first eight hours while sleeping. The remaining eight hours are then distributed, for example, between the morning and evening. This way, some patients manage to reach the required 16 hours. However, it is particularly important to have sufficient oxygen, especially during physical exertion, such as shopping, walking, or lifting heavy objects. Performance increases with supplemental oxygen.

The Pulmonary exercise Symptoms are alleviated when long-term oxygen therapy is carried out as prescribed by the doctor. The body cannot store oxygen. Long-term oxygen therapy does not replace exercise therapy or other medications. It also does not improve the underlying condition or its symptoms, such as coughing or phlegm. However, it does support the patient in coping with everyday stresses.

The pillars and devices of long-term oxygen therapy

The three pillars of long-term oxygen therapy consist of a concentrator (stationary or portable units), pressurized gas cylinders and liquid oxygen tanks for home use, and portable units for self-filling. With a concentrator, oxygen is extracted from the ambient air using a molecular sieve. For a stationary concentrator used as the primary supply at home, patients receive pressurized gas cylinders (weighing approximately 5 kg + accessories) for use outside the home. Those with statutory health insurance should submit their electricity costs to their health insurance provider for reimbursement. This is not just about the €5 monthly flat rate. It is better to read the operating time of the device from the meter to calculate the actual electricity costs. This precise calculation often results in a significantly higher reimbursement amount.

Portable liquid oxygen devices come in two main types: continuous flow and demand-based. Continuous flow devices deliver oxygen constantly, regardless of whether you are inhaling or exhaling. This allows you to inhale oxygen through your mouth or nose. Breath-actuated devices (demand or triggered devices), on the other hand, release oxygen only during a brief inhalation phase. Effective nasal breathing is required to activate a valve within the device.

Generally, for demand-controlled liquid oxygen devices, portable concentrators, and the oxygen-saving system for gas cylinders, it is essential to have the settings checked by a pulmonologist at least once a year. This is because all devices deliver a different oxygen flow rate per breath, meaning they are not interchangeable. Furthermore, as the disease progresses, the valve may no longer be able to activate during inhalation, or a different setting may be required.

When setting the breath-controlled flow rate, the setting is given in levels, not liters. A setting of, for example, 2 liters is not the same as level 2. It should also be noted that breathing patterns are always different at night, during exertion, or when feeling unwell. In these situations, it may no longer be possible to breathe effectively through the nose to trigger the valve.

Nasal cans and accessories

Oxygen is delivered via a tubing system made of PVC, Kraton, or silicone. PVC nasal cannulas should be changed at least every 14 days, and possibly sooner, for example, in the case of an infection. Silicone tubing can be boiled or cleaned with a special cleaning gel. In addition to cosmetic solutions for long-term oxygen therapy, other accessories are available to facilitate daily treatment, such as extension tubes, anti-tangle devices, condensation traps, and ear protectors.

Oxygen passport

The oxygen passport records the device used, the system the patient was tested on, and the oxygen requirements determined by the doctor at rest, during exertion, and during sleep. Since the measurements are repeated at time intervals, the current values can be read.

Humidification

If you experience continuous nasal discharge and a feeling of dryness, you should use a humidifier. Closed water systems are hygienic and easy to use. You can also fill the humidifier reservoir with sterile water. Otherwise, the water – whether tap or distilled – must be boiled daily. The humidifier reservoir must also be cleaned daily.

Carrying aids

Heavy portable oxygen concentrators can be transported in various ways. Smaller systems are available in belt bags or backpacks. Larger units can be transported in a caddy. Riding comfort varies depending on the device. Air-filled tires and a well-padded handle are helpful. Rollators also vary in weight, ranging from 7 to 15 kg. A tipping aid is useful for overcoming obstacles such as curbs. It is advisable to have someone demonstrate the correct use of the rollator.

Travel

Travel Made easy, without much organizational effort: Some rehabilitation clinics offer special package deals for oxygen patients. These combine vacation time, a health week, wellness, relaxation, and oxygen therapy. The clinics guarantee a reliable oxygen supply, and a doctor is on-site in case of emergency.

Thus appeared in Alpha1 Journal 2/2015.

Information about long-term oxygen therapy

To improve the quality of life and survival time of patients with chronic and severe oxygen deficiency – also known as hypoxemia – these individuals are tested for the possibility of long-term oxygen therapy (LTOT). However, all drug treatment options must be exhausted beforehand. During testing, which involves multiple blood gas analyses – importantly, also under stress – the partial pressure of oxygen must repeatedly fall within a critical range of < 55 mmHg. Furthermore, it must be demonstrated that oxygen administration improves these values.

causes

Oxygen deficiency can be caused by various diseases. A significant and large group consists of lung diseases, especially COPD, emphysema, and alpha-1 antitrypsin deficiency. Pulmonary fibrosis, pulmonary embolisms, and pulmonary hypertension can also lead to oxygen deficiency. Orthopedic problems can also trigger oxygen deficiency. Deformities of the ribs or spine severely constrict the rib cage, leaving the lungs insufficient space to expand. Certain heart defects or paralysis of the respiratory muscles also lead to oxygen deficiency and are therefore an indication for long-term oxygen therapy. Long-term oxygen therapy serves not only to supply the internal organs but, above all, to relieve the pressure on the right ventricle of the heart.

Oxygen is a medication

To ensure long-term oxygen therapy is effective and efficient, it should be administered for at least 16 hours, ideally 24 hours a day – as recommended by the guidelines of the German Society for Pneumology. Patient cooperation is essential for the success of the treatment. The required 16-hour duration may seem easy to achieve: many patients "hide" most of their oxygen therapy at night, taking in supplemental oxygen during the eight hours they sleep. They then take another four hours of oxygen in the morning and perhaps spend four hours relaxing on the sofa in the evening. This is how some patients manage to reach the required 16 hours. However, it is particularly important to have sufficient oxygen, especially during physical exertion. Whether shopping, taking a walk, or lifting a walker up a curb, supplemental oxygen enhances performance. Pulmonary rehabilitation exercises are also more effective when combined with long-term oxygen therapy as prescribed by the doctor. It should never be forgotten that the body cannot store oxygen; the gas cannot be supplied in advance. Long-term oxygen therapy does not replace exercise therapy or other medications. Nor does it improve the underlying disease or its symptoms such as coughing or phlegm. However, it does support the management of everyday stresses.

The pillars and devices of long-term oxygen therapy

The three pillars consist of a concentrator (conc) as a stationary or portable device, gas cylinders (gox) and liquid oxygen tanks (lox) for home use, and mobile units for self-filling. With a concentrator, oxygen is extracted from the ambient air using a molecular sieve. For home use with a stationary concentrator as a basic supply, gas cylinders (weighing approximately 5 kg + accessories) are available for use outside the home, possibly with a fuel-saving system. Patients with statutory health insurance should definitely submit their electricity costs to their health insurance company for reimbursement. However, this isn't just about the €5 flat rate per month. It's better to read and note the operating time of the device on the meter to calculate the actual electricity costs. This precise calculation often results in a significantly higher reimbursement amount.

Portable liquid oxygen devices are divided into continuous flow and demand devices. With continuous flow, oxygen is delivered continuously, regardless of whether the user is inhaling or exhaling. A small cloud of oxygen forms in front of the mouth and nose. The oxygen can then be inhaled through the mouth or nose.
The flow rate is measured in liters. With breath-actuated devices (also called demand or triggered devices), oxygen is released only during a brief phase of inhalation. Effective nasal breathing is required to activate a valve within the device.

However, the following generally applies to demand-controlled devices for liquid oxygen, portable concentrators, and the oxygen-saving system for compressed gas cylinders: The settings should be checked at least once a year by a pulmonologist. This check should be performed both at rest and during exertion to ensure that oxygen deficiency does not occur. Firstly, all devices deliver a different oxygen flow rate per breath, meaning they are not interchangeable. There is no one-size-fits-all demand-controlled test. Secondly, it is possible that, as the disease progresses, the valve may no longer be able to be triggered during inhalation, or a different setting may be required. When adjusting the breath-controlled flow rate, the term used is "level," not "liters." It is also important to note that a setting of, for example, two liters is not the same as level 2.

And it's also important to consider: How do you breathe at night, under exertion, or when you're not feeling well? Can you really still breathe effectively through your nose to trigger the valve?

Oxygen passport

An oxygen passport records which device is used or which system one has been tested on, and the oxygen requirements determined by a doctor at rest, during exertion, and during sleep. Since the measurements are repeated at regular intervals, the current values can be read. This is also important for pulmonary rehabilitation, so that therapists have precise information.

Nasal cans and accessories

Oxygen is delivered via a tubing system made of PVC, Kraton, or silicone. Various models and designs are available. It's advisable to try several options to find the most suitable system. As mentioned earlier, patient cooperation and adherence to the therapy are essential. PVC nasal cannulas should be changed at least every 14 days, or more frequently in cases of infection. Silicone models can be boiled or cleaned with a special cleaning gel for silicone nasal cannulas. While these tubes are more expensive to purchase, they have a longer lifespan. In addition to cosmetic solutions for long-term oxygen therapy—now offered by various manufacturers—there are also other accessories to facilitate and support daily therapy: extension tubes, detanglers, condensation traps, earplugs, etc.