Is there anything against Abscessus when Tygacil, Amikacin etc have failed?

Hi all, With some desperation, I am looking for some support and ideas on this forum. I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time. After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago. Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now also to tygacil. After 5 months in hospital I was discharged this week, as basically there are no options left and the meropenem, amikacin,clarithromycin, tygacil cocktail showed now progress. So I am in worse shape now as I was when i entered hospital and I am really scared big time. I have a 7 months old daughter and sometimes I fear I will not see here become 1 or 2 years. ALso because transplant is not allowed for abcessus patients. So I am just wondering if anyone has heard about or has has any experience with any investigational drugs (e.g.bedaquiline) or is on a special regime or has some nice ideas about alternative or supplemental medication. Anything will be much appreciated!! Thanks a lot and sorry for the melodramatic tone in my message..I am almost 40 and for first time really scared as s...t Warm regards Jeanpaul FEV1: 1,0 ltr, Df508 and E528X...
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums

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Persistent air leak (PAL) is a common problem after secondary pneumothorax due to cystic fibrosis (CF). These leaks, caused by either bronchopleural or alveolopleural fistula, are associated with higher morbidity and mortality [1]. Air leaks are traditionally treated with chronic chest tube drainage, chemical pleurodesis, or autologous blood patching in non-surgical candidates [1]. However, these strategies can increase infectious risk or pleural scarring, which are associated with poorer lung transplant surgical outcomes.
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Bilateral lung transplantation (LTx) is a complex but important therapeutic option for end-stage cystic fibrosis (CF) patients, with a significant risk of perioperative morbidity and mortality [1,2]. Patients should be referred for LTx when pulmonary function has declined to 30% of predicted Forced Expiratory Volume in 1  s (FEV1% predicted) or when worsening rapidly [1]. After LTx, pulmonary function, quality of life, and life expectancy can improve drastically [2,3].
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Cystic fibrosis (CF) is today the second most common primary indication for bilateral lung transplantation in adults and the third most common indication for lung transplantation in adults overall according to the most recent Thoracic Transplant Registry Report of the International Society for Heart and Lung Transplantation (ISHLT) (1). In children and adolescents, CF is the commonest reason for transplantation reaching 2/3rd in children older than 11 years (2). In general, lung transplantation is considered a life-saving therapy option in well selected patients with respiratory failure due to advanced CF lung disease (3).
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