Today we announce the release of Sharktank Research Foundation’s new WELLNESS PROTOCOL. This plan has been years in the making, in fact, since Sharktank was formed. It represents the pooled experiences of many adult CF patients and parents of CF children about what they believe helps them most to remain healthy. Among our contributors, we have patients well into their 30s and 40s who enjoy lung function stability and even see gains in lung function that they attribute to practices found in the protocol. Some who have adopted these guidelines have been able to return to full time employment or remove themselves from the lung transplant process. We particularly enjoy seeing how well children are doing using an approach that minimizes exposure to the more toxic therapies that damage the normal flora; and cause other side effects that can be serious and permanent such as vision and hearing loss.
This protocol is a work in progress and will be updated whenever new information becomes available. It is not medical advice, and should be used as a guide for discussion with your doctor. We advocate that your doctor should be a partner in your care and should know your daily regimen including supplements.
We drew heavily for our protocol from the vast experience and remarkable successes of the late Dr. Warren Warwick, who lead his Minnesota Cystic Fibrosis Center to outcomes far superior to any other CF Center. In case you were unaware, Dr. Warwick was also the inventor of the oscillating vest for cystic fibrosis. Dr. Warwick’s Center had a very high average survival age for CF of 48 in the year 2005; well ahead of other efforts. The centerpiece of his success is believed to be his use of a nebulized drug cocktail consisting of 4ml of 20% Mucomyst (n-acetylcysteine or NAC), 2 ml of albuterol and 2 ml of Cromolyn sodium for inhalation (also known as Intal). Although these solutions have been studied individually for clinical benefit, no studies apart from Dr. Warwick’s data combining all three solutions are available. Dr. Warwick’s data comprise a large CF population and speak for themselves.
The strategy for this combination treatment is as follows. Albuterol would allow the other ingredients to penetrate more deeply as the airways relax. Diluting 20% Mucomyst by half with the other solutions reduces the concern of some physicians that 20% Mucomyst is too harsh (patients report finding this neb soothing). Cromolyn sodium for inhalation is a mast cell stabilizer that may not have penetrated deeply enough to show significant benefit when used as a monotherapy. A patient need not have asthma or allergies to potentially benefit from a mast cell stabilizer as infection of the lung can also trigger mast cell degranulation.
Dr. Warwick had great success with this cocktail and many of our Sharktank members who have rediscovered his work also believe they benefit enormously from this neb. Importantly, Dr. Warick said: “I avoid all aerosols that provoke coughing by irritation.” We agree that irritating CF airways is a bad practice. It is especially counterproductive in the age of CFTR modulators that hope to restore airway surface liquid depth and reduce mucus viscosity such that normal mucociliary clearance is retored.
We do all of our important work through the tax-deductible donations we receive from our members and other generous contributors. Sharktank Research Foundation is also a listed charity on Amazon SMILES program and your Amazon purchases can support Sharktank if you make them through Amazon SMILES.
We look forward to feedback from the CF Community regarding the WELLNESS PROTOCOL. Without the observations and input of many we could not have achieved the many recent success stories we are accumulating.
Jim