- Year of Birth
April 9, 1944
- Short Bio
Originally diagnosed with COPD/emphysema, latterly diagnosed with IPF/emphysema complicated by defective immune system. Mild respiratory contamination with Beryllium dust in 1968 followed by spontaneous pneumothorax (treated in Karolinske Institut in Stockholm) and pulmonary cysts/scoliosis resulting in a thoracotamy in Heidelberg Thorax Clinic in Germany to remove upper part of right lung. Currently using Spriva and Innovair inhalers. Diagnosed with autoimmune problems including polymyalgia rheumatica (PMR) and chronic “conjuctiva” resulting in Prednison treatment which started about 20 years ago. Four years ago I started using 20 mg/twice a week Gammanorm subcutaneous gammaglobulin infusion since when I’ve only been hospitalised once with pneumonia. Prior to that – and going back 15 years or so – I was hospitalized on average 4 times a year with chest infections and pneumonia. On one occasion I coughed so badly that I broke my neck and my neck is now bolted together. As my wife so feelingly said – basically you’re screwed. Happy, but screwed!
- Type of Diagnosis
- Treatment / Medical Facility
Various treatments ordinated by Hillerød Hospital here in Denmark
- Current medication regimen
Sprivia + Innovair inhalors, standby nebulizer, 20 mg Prednison, Mometasone nasal spray
- Lung transplantation status
- Supplemental Oxygen
- Best advice for PF symptom management
Lose weight if you can. I recently aimed at losing 6 kg in 100 days and I used Under Armour’s Myfitnesspal as a guide. And it worked. In all I’ve lost 8 kg (76 kg to 68 kg) and now I’m able to move freely about the house – which I could not do before – and with my walker (or a supermarket trolley) I can now go shopping again.
- Are you currently taking an anti-fibrotic medication?
- How did you find us?
- How long have you or the person that you are caring for had PF?
At a guess I say more than 10 years