Wednesday, September 26, 2012

esophageal PH study results

This is a difficult post to write. I'm feeling very emotional. James and I received some disappointing test results. We are both feeling a lot of anger and frustration, but I can't afford the energy to hold onto negative emotions. This will be another process of acceptance and letting go.

In Victoria, James had an esophageal PH study to determine the level of acid in his esophagus. This was a miserable experience for James. He was required to wear an electric sensor and have a tube down his nose for a twenty-four hour period of monitoring. Microaspirations are a known cause of bronchiolitis obliterans. This is a form of gastroesophageal acid reflux from the stomach into the lungs that causes inflammation and tissue damage. It is very common in individuals with Cystic Fibrosis. It is preventable and treatable through a combination of laproscopic surgery and medication to reduce acid levels in the digestive system. 

The study was recommended following James' drastic reduction in lung function with no known cause. We have since learned that the study is standard for many pre-transplant patients with Cystic Fibrosis at some transplant centres. This is a proactive strategy to detect and treat microaspirations prior to transplant to prevent post-transplant bronchiolitis obliterans.

James was required to stop taking his gastrointestinal medications in the days prior to the esophageal PH study. At that time, James was in the hospital recovering from sinus surgery for a nasal obstruction and nasal polyps. (This is also very common for individuals with Cystic Fibrosis). His lung function started to decrease in the days following his surgery. We both suspected that this was correlated with the discontinuation of his gastrointestinal medications, but it was also possible that it was a delayed response form the anesthesia.

We waited several weeks for the results. We inquired almost daily during James' inpatient hospitalization. We finally decided to get in touch with James' transplant co-ordinator form British Columbia. She informed us that the results had been faxed to Toronto several weeks ago. James' results were abnormal. James has high level of acid in his esophagus. 

We are waiting for more details. We need more information. We hope that the damage is not permanent. We cannot increase James' medications that reduce acid, because of a dangerous interaction with his prophylactic antibiotics. We will inquire about a repeat test without the discontinuation of James' gastrointestinal medications. We will also inquire about the laproscopic surgery to prevent further microaspirations, but James' may not be a candidate for anesthesia, because of the dangers associated with a decrease in lung function.

That is all for now. The only other news is that James will no longer be attending the transplant gym. He will have to wait for a further decline in lung function or for his official listing on the transplant waiting list. We knew this was possible. The gym has limited space. The priority is for individuals on the transplant list or immediately post-transplant. We will continue to do physiotherapy independent of the transplant gym.

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