| 1 |
Engaging in self-care activities |
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| 2 |
Seeking medical advice |
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Taking prescribed medication |
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| 4 |
Adhering to dietary restrictions |
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| 5 |
Attending medical appointments |
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| 6 |
Engaging in physical activity |
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| 7 |
Experiencing repeated lung infections |
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| 8 |
Managing stress levels |
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| 9 |
Monitoring oxygen levels |
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| 10 |
Previously using Enbrel injections |
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| 11 |
Researching treatment options |
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Seeking alternative therapies |
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Seeking emotional support |
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Seeking information about Cellcept |
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| 15 |
Seeking second opinions |
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| 16 |
Adhering to lifestyle changes |
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| 17 |
Asking about his feelings and updates on his condition |
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| 18 |
Attending doctor's visits and consultations |
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| 19 |
Attending follow-up appointments |
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| 20 |
Attending regular medical appointments |
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| 21 |
Being passive about her own health and not interested in understanding her disease |
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| 22 |
Being put on supplemental oxygen |
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| 23 |
Being unable to work due to physical job requirements |
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| 24 |
Biopsy |
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| 25 |
Blood tests for connective tissue, auto-immune, and hypersensitivity causes |
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| 26 |
Blood work |
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| 27 |
Breathing difficulties during physical activity |
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| 28 |
Caring for a dog |
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| 29 |
Change in eating habits |
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| 30 |
Changing needs faster than advice or help can be obtained from the pulmonologist |
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| 31 |
Chest tightness |
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| 32 |
Complaining of shortness of breath and a progressing dry cough |
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| 33 |
Concern about the hereditary nature of ILD |
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| 34 |
Considering moving to a long-term care facility |
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| 35 |
Considering starting Cellcept treatment |
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| 36 |
Considering starting treatment with Cellcept |
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| 37 |
Considering taking courses to acquire new skills |
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| 38 |
Considering the possibility of IPF |
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| 39 |
Coughing episodes |
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| 40 |
Coughing fits |
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| 41 |
Coughing up phlegm |
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| 42 |
Dealing with seronegative Rheumatoid Arthritis |
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| 43 |
Declining health of the father |
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| 44 |
Dependence on family members for managing medications and appointments |
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| 45 |
Depression |
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| 46 |
Describing the presence of a cough |
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| 47 |
Describing the pulmonologist's current suspicions |
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| 48 |
Desire to understand the chances of future generations being affected |
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| 49 |
Determination to live a healthy lifestyle |
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| 50 |
Developing dry and crusty castings in bronchial airway |
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| 51 |
Difficulty breathing |
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| 52 |
Difficulty sleeping and inability to settle |
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| 53 |
Difficulty walking and relying on an electric wheelchair |
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| 54 |
Dipping oxygen saturation levels while moving |
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| 55 |
Discussing symptoms |
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| 56 |
Doctor needing to check and get back with answers |
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| 57 |
Embracing a positive outlook for the future |
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| 58 |
Encouraging regular walking or exercise |
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| 59 |
Engaging in daily activities (mowing, gardening, housework, shopping, cooking) |
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| 60 |
Engaging in physical activities and hobbies |
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| 61 |
Engaging in physical activities with a walking aid |
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| 62 |
Experiencing fatigue and panic feelings |
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| 63 |
Experiencing side effects |
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| 64 |
Exploring treatment options and their side effects |
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| 65 |
Expressing concern about getting through the flare |
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| 66 |
Fatigue |
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| 67 |
Feeling anxious and spiraling after researching online |
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| 68 |
Feeling depressed |
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| 69 |
Feeling devastated and not like oneself |
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| 70 |
Feeling fine when sitting on the sofa with home oxygen concentrator |
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| 71 |
Feeling fine with no issues during mid intense cardio |
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| 72 |
Feeling initial fear and anxiety |
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| 73 |
Following a treatment plan |
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Following recommended treatment plan |
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Following treatment plan |
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| 76 |
Frequent bronchoscopies to remove castings |
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| 77 |
Gasping for air |
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| 78 |
Getting a CT scan |
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| 79 |
Highlighting the elevated RF levels |
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| 80 |
Identifying a pattern of lung disorders in relatives |
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| 81 |
Inconsistent duration of walking before oxygen levels drop |
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| 82 |
Increased heart rate |
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| 83 |
Increased respiratory effort |
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| 84 |
Indicating the use of high flow oxygen |
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| 85 |
Inquiring about the effectiveness of pulse dosing steroids |
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| 86 |
Interacting with a support group on social media |
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| 87 |
Lack of compassion from doctors |
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| 88 |
Learning about clinical trials for fibrosis treatment |
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| 89 |
Limited information received from the doctor |
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| 90 |
Living alone and being independent |
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| 91 |
Living independently and performing daily chores |
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| 92 |
Looking for treatment options |
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| 93 |
Looking up recipes for lung-healthy foods |
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| 94 |
Loss of appetite followed by regaining appetite |
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| 95 |
Maintaining a positive attitude and faith |
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| 96 |
Making lifestyle adjustments to manage symptoms |
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| 97 |
Managing chronic lung fibrosis |
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| 98 |
Managing chronic lung fibrosis, ground glass inflammation, and bronchiectasis |
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| 99 |
Managing seronegative Rheumatoid Arthritis |
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| 100 |
Managing side effects |
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| 101 |
Mentioning stepdad's previous work schedule |
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| 102 |
Mentioning the presence of scar tissue |
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| 103 |
Mentioning the recent PFT results |
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| 104 |
Monitoring and tracking test results |
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| 105 |
Monitoring health parameters |
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Monitoring symptoms |
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| 107 |
Needing a walker to move around |
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| 108 |
Non-existent social life for the OP |
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| 109 |
Noticing off and on rhonchi at night |
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| 110 |
Noting stepdad's daily walking routine |
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| 111 |
Noting the absence of a formal diagnosis |
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| 112 |
Noting the absence of bipap or ventilator use |
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| 113 |
Oxygen level dropping to 88 during walking |
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| 114 |
Panic attacks |
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| 115 |
Participating in clinical trials |
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| 116 |
Participating in pulmonary rehabilitation |
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| 117 |
Participating in support groups |
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| 118 |
Pathology results showing extensive honeycombing |
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| 119 |
Patient is actively involved in decision-making with their doctor |
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| 120 |
Patient is motivated to bring up new information or medications with their doctor |
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| 121 |
Patient is not currently on Ofev or Esbriet |
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| 122 |
Patient relies on Pulmonary Fibrosis NOW site for information and support |
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| 123 |
Patient tracks lung function test results mentally |
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| 124 |
Patient travels about an hour and 15 minutes to see ILD specialist every six weeks |
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| 125 |
Patient uses oxygen for exercise and sleep |
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| 126 |
Patient wants to stay as healthy as possible for as long as possible |
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| 127 |
Patient works two jobs during tax season and is busy |
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| 128 |
Previous improvement with ventilator and heated circuit, but recurrence of symptoms |
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| 129 |
Previously using Quvar-80 inhaler |
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| 130 |
Providing medical history |
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| 131 |
Rapid breathing |
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| 132 |
Rationing inhaler due to lack of supply |
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| 133 |
Reading up on environments and foods that can worsen/improve the condition |
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| 134 |
Realizing the disease is at an early stage with minimal lung impairment |
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| 135 |
Receiving a diagnosis of ILD |
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| 136 |
Receiving diagnosis |
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| 137 |
Receiving infusions of Remicade and Orencia |
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| 138 |
Recommendation for a lung biopsy |
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| 139 |
Recovery from the lung biopsy |
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| 140 |
Reporting minimal improvement and resolution of infection |
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| 141 |
Reporting progress |
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| 142 |
Reporting symptoms to healthcare provider |
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| 143 |
Requesting medication refills |
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| 144 |
Requiring 5 liters of oxygen per day |
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| 145 |
Researching about the disease |
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| 146 |
Researching and staying informed about the disease |
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| 147 |
Researching anti-fibrotic medications |
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| 148 |
Scheduling appointments |
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| 149 |
Searching for hidden causes not detected by lab testing |
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| 150 |
Seeing a rheumatologist |
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| 151 |
Seeking a second opinion |
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| 152 |
Seeking community and support |
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| 153 |
Seeking financial assistance for medication |
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| 154 |
Seeking information about clinical trials |
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| 155 |
Seeking information about family medical history |
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| 156 |
Seeking information about ILD and its relationship to IPF |
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| 157 |
Seeking information about ILD flare survival experiences |
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| 158 |
Seeking information about precautions to prevent ILD |
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| 159 |
Seeking insights from others with similar experiences |
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| 160 |
Seeking medical advice and treatment |
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| 161 |
Seeking social support |
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| 162 |
Seeking suggestions for non-physical job options |
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| 163 |
Severe feed and esophogisitis |
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| 164 |
Shallow breathing |
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Sharing stepdad's medical history and recent hospitalization |
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| 166 |
Shift in location for the siblings |
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Shortness of breath |
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| 168 |
Shrinking social life of the mother |
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| 169 |
Skin thickening |
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Spitting up white sticky saliva |
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| 171 |
Struggling and panting when getting off the sofa |
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| 172 |
Struggling with daily activities |
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| 173 |
Taking prescribed medications (Symbicort, albuterol) |
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| 174 |
Taking Symbicort and albuterol |
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Tracking health data |
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| 176 |
Undergoing a high resolution CT scan |
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| 177 |
Undergoing infusions of Remicade and Orencia |
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| 178 |
Use of accessory muscles for breathing |
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| 179 |
Use of Shiley uncuffed and Astral 150 ventilator with heated circuit |
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| 180 |
Using a pulse oximeter to monitor oxygen levels |
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| 181 |
Using oxygen at home and portable concentrator outside |
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| 182 |
Visiting a different medical center |
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| 183 |
Waiting for a follow-up appointment with the pulmonologist |
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Walking daily with a walking aid |
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Walking every three days |
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Weekly or bi-weekly calls with the doctor |
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Weight loss |
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Wheezing |
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