{"id":2016,"date":"2015-01-09T15:04:07","date_gmt":"2015-01-09T14:04:07","guid":{"rendered":"http:\/\/www.alpha1-deutschland.org\/?p=2016"},"modified":"2020-03-11T14:58:56","modified_gmt":"2020-03-11T13:58:56","slug":"mein-weg-zu-den-ventilen","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/mein-weg-zu-den-ventilen","title":{"rendered":"My way to the valves"},"content":{"rendered":"<div id=\"fws_6aad121c4ea56\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"3%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.03); padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<h1><span style=\"color: #004267;\">My way to the valves<\/span><\/h1>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 50px;\" class=\"divider\"><\/div><\/div><div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div id=\"cmsms_row_5e68ed62a1214\" class=\"cmsms_row cmsms_color_scheme_default\">\n<div class=\"cmsms_row_outer_parent\">\n<div class=\"cmsms_row_outer\">\n<div class=\"cmsms_row_inner\">\n<div class=\"cmsms_row_margin cmsms_11\">\n<div class=\"cmsms_column one_first\">\n<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p><strong>Heike Schmidt<\/strong>, as published as a letter to the editor in Alpha1-Journal 1\/2014<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p>Hello dear Alphas,<\/p>\n<p>My name is Heike Schmidt, I am 51 years old and currently live in Northern Hesse, but I would like to move to the north someday. I was diagnosed with pulmonary emphysema in May 2009. The diagnosis was completely new to me, and I couldn&#039;t make any sense of it. When the term &quot;alpha-1 antitrypsin deficiency&quot; was also mentioned, my family (my husband Helmut and sons Sven and Bj\u00f6rn) was devastated. I was prescribed Spiriva and Forair, as well as Atrovent, which I inhale using a Pari Boy nebulizer. I wasn&#039;t given Prolastin because I was still a smoker. In March 2010, I finally made it through and received my first infusion. In November\/December 2010, my husband and I went to Sankt Peter-Ording for rehabilitation. We stayed in different clinics, but the most important thing was that he was close to me, because I wasn&#039;t feeling well at all. It sometimes took me 45 minutes to walk the 500 meters to his clinic, but thanks to his presence and his closeness, I even managed to cross the pier to the water once, although it took forever, and that was in minus ten degrees Celsius. During rehabilitation, it was determined that my pulmonary emphysema had reached its end stage. The clinic immediately submitted an application to the social welfare office for an increase in my disability rating, as I had a disability rating of 30 at that time. In January 2011, my rating was increased to 60. After my sick pay from the health insurance company ran out after a year and a half of sick leave, and I was suddenly unemployed because my employer no longer had a suitable position available, I applied for disability benefits and received a letter from the state insurance institution in early January 2012 stating that I had been granted a permanent disability pension retroactively to June 2010. Meanwhile, my husband became very involved with my illness, and at some point, he came across the term &quot;titanium valves.&quot; So the research began. He then decided to take matters into his own hands regarding the valves. The two clinics that were suitable for us were in Gro\u00dfhansdorf, Schleswig-Holstein, and in Heidelberg.<\/p>\n<p>Helmut wrote to professors at both hospitals and informed them of the diagnosis. Both gave us the go-ahead within two days, so nothing stood in the way of the implantation. Since I had two exacerbations in 2011, I suddenly had a flash of inspiration. I had been &quot;brought back&quot; twice at the Marien Hospital in Kassel; perhaps the upcoming procedure could also be performed there. We contacted the head of pulmonology, got an appointment, and on Easter Monday 2012, the day finally arrived. On Tuesday, six valves were implanted in my right lung, and even after waking up, I felt like I could breathe better, and I wasn&#039;t mistaken. I had regained a piece of my quality of life.<\/p>\n<\/div>\n<div class=\"cmsms_img cmsms_image_n with_caption fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p class=\"cmsms_img_caption\">During a bronchoscopy, endobronchial valves can be implanted to regulate airflow into the lungs&#039; branches. This reduces the functional impairment in pulmonary emphysema.<\/p>\n<\/div>\n<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p>I was discharged on Saturday, and on Sunday I suddenly developed a fever; I&#039;d caught pneumonia, and three weeks later our long-planned vacation in Neuharlingersiel was supposed to begin. It looked like we&#039;d have to write it off. But we hadn&#039;t reckoned with my pulmonologist. He prescribed the right medication, and the vacation was saved. Finally, I could walk again without having to stop and gasp for air every few meters. The doctor we saw there for the Prolastin infusion was also very pleased with me and could hardly believe the distances I could manage again thanks to the valves. I was doing well until my condition worsened at the end of 2013, and the doctors said that too much air was entering the lung lobes closed off by the valves via a retrograde flow. That&#039;s when the terms &quot;RePneu LVR Coils&quot; and &quot;Bad Cannstatt&quot; were first mentioned, which meant: removing the valves and replacing them with coils. I didn&#039;t care \u2013 the main thing was that I felt better afterward. But it wasn&#039;t to be, because a CT scan revealed a large emphysema in my right lung. Now the valves were needed again. On February 21, 2014, six valves were implanted in my right lung \u2013 again in Kassel \u2013 and it was a success, though unfortunately not one I could enjoy for long. Once again, pneumonia spoiled the party, this time accompanied by a severe cough that hadn&#039;t completely cleared up 4.5 weeks after the procedure, forcing me to take Avalox. The valves are now working, and we&#039;re all very happy about that. We can only advise anyone who is a candidate for valve implantation to have it done. I&#039;m feeling much better now, and I no longer have to gasp for air. My daily exercise routine looks like this: in the morning, an hour and a half on the exercise bike, which corresponds to about 6 km, followed by 5 minutes of dumbbell training (3 kg) and 5 minutes of exercises with the Powerstick. In the evening, I cycle 5 km on the exercise bike (time isn&#039;t important at this point) and again do dumbbells and Powerstick exercises. Once a week I do Nordic walking, about 3 km, and once a week I go on a short hike with our COPD support group in Kassel, about an hour and a half. On a scale of 0 to 10, I rate myself at a 7. I hope this condition lasts a long time. I hope this report encourages other COPD and Alpha-1 patients and that they will also opt for valves if they are a candidate. I certainly haven&#039;t regretted having my 12 valves implanted.<\/p>\n<p>Heike Schmidt, as published as a letter to the editor in\u00a0<a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 1\/2014.<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n<div id=\"fws_6aad121c500fc\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"padding-top: 5%; \"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t<div class=\"img-with-aniamtion-wrap\" data-max-width=\"100%\" data-max-width-mobile=\"default\" data-shadow=\"none\" data-animation=\"fade-in\" >\n      <div class=\"inner\">\n        <div class=\"hover-wrap\"> \n          <div class=\"hover-wrap-inner\">\n            <a href=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile.png\" class=\"pp\">\n              <img loading=\"lazy\" decoding=\"async\" class=\"img-with-animation skip-lazy\" data-delay=\"0\" height=\"586\" width=\"2352\" data-animation=\"fade-in\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile.png\" alt=\"Anwendung Ventile\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile.png 2352w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-300x75.png 300w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-768x191.png 768w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-1024x255.png 1024w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-580x145.png 580w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-820x204.png 820w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Ventile-1160x289.png 1160w\" sizes=\"auto, (max-width: 2352px) 100vw, 2352px\" \/>\n            <\/a>\n          <\/div>\n        <\/div>\n         \n      <\/div>\n      <\/div>\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6aad121c5180f\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"2%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.02); padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div class=\"cmsms_img cmsms_image_n with_caption fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p class=\"cmsms_img_caption\"><em>During a bronchoscopy, endobronchial valves can be implanted to regulate airflow into the lungs&#039; branches. This reduces the functional impairment in pulmonary emphysema.<\/em><\/p>\n<\/div>\n<h2><span style=\"color: #004267;\">Continued: Part 2<\/span><\/h2>\n<p>Hello dear Alphas,<\/p>\n<p>There was a mistake. My daily exercise routine after the valves were implanted looks like this: in the morning, I don&#039;t train for an hour and a half on the exercise bike (which would correspond to about 6 km), but it should read: half an hour. The valves have worked very well so far, and I&#039;m very satisfied, but I still have a cough that no one has been able to get under control. The doctors are baffled, and my attending physician said he needs to inquire at the medical conference in Munich in November whether this has happened to other patients as well.<\/p>\n<p>Sincerely, Heike Schmidt, as published in\u00a0<a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 2\/2014<\/a><\/p>\n<p>Addendum by Mrs. Schmidt:<br \/>\nThe cough I described earlier lasted for a long time. Despite extensive investigations, no cause could be found. Then suddenly it stopped, and I can now say that I am completely satisfied with my valves.<\/p>\n<h2><span style=\"color: #004267;\">Continued: Part 3<\/span><\/h2>\n<p>My lung function has improved from 27 to 44% since the implantation of the last six of my twelve valves in February 2014. I can now walk longer distances again, taking breaks along the way. Only climbing stairs or steep inclines still poses a challenge. We bought e-bikes in May 2016, and this investment has paid off. We go on bike tours and often cover 60 km without any major problems for me; my husband has to work quite hard to keep up. The valves have been a real boon for me and have given me back a great deal of quality of life. As mentioned in my earlier reports, I would recommend the implantation to anyone who is a potential candidate.<\/p>\n<p>Heike Schmidt, as appeared in\u00a0<a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 2\/2016<\/a>.<\/p>\n<\/div>\n\n\n\n<div id=\"fws_6aad121c52303\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"padding-top: 5%; \"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-2 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-8 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t<div class=\"img-with-aniamtion-wrap\" data-max-width=\"100%\" data-max-width-mobile=\"default\" data-shadow=\"none\" data-animation=\"fade-in\" >\n      <div class=\"inner\">\n        <div class=\"hover-wrap\"> \n          <div class=\"hover-wrap-inner\">\n            <a href=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile.png\" class=\"pp\">\n              <img loading=\"lazy\" decoding=\"async\" class=\"img-with-animation skip-lazy\" data-delay=\"0\" height=\"778\" width=\"1416\" data-animation=\"fade-in\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile.png\" alt=\"Lungenvolumenreduktion mit Hilfe von Atemventilen\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile.png 1416w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-300x165.png 300w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-768x422.png 768w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-1024x563.png 1024w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-580x319.png 580w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-820x451.png 820w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Atemventile-1160x637.png 1160w\" sizes=\"auto, (max-width: 1416px) 100vw, 1416px\" \/>\n            <\/a>\n          <\/div>\n        <\/div>\n         \n      <\/div>\n      <\/div>\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-2 wpb_column column_container vc_column_container col child_column no-extra-padding\"   data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"My Path to the Valves Author: Heike Schmidt, published as a letter to the editor in Alpha1-Journal 1\/2014 Hello dear Alphas, my name is Heike Schmidt, I am 51 years old and currently live...","protected":false},"author":1,"featured_media":3918,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,36],"tags":[],"class_list":["post-2016","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-alphas-fuer-alphas"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Lungenemphysem: Mein Weg zu den Ventilen bei einem<\/title>\n<meta name=\"description\" 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