Living Well with a Bad Diagnosis - Lung Disease

Wednesday, June 17, 2015

Wisdom from the Front Lines

With this blog, I try to offer as much information about the reality of living with a lung disease. All the ups and all the downs. The trick is to appreciate the ups but not panic during the downs. What I can't give to you, dear reader, is my personal experience when lungs crash. Thankfully, I have been able to avoid that scenario, so far.

Sadly, a long-time reader of this blog has just lost her husband to an interstitial lung disease. She had shared with me so much about their experiences through the years but especially his final weeks. She asked if I would share important information with you. It is about the whole lung transplant process. I tried to re-write it but she wrote it so eloquently that, after changing identifying information with capital letters, I just pasted it from her latest email. Please read it:

Add to your blog posting about transplants. WE had his first encounter with the FIRST HOSPITAL transplant clinic on April 8. His hands and fingernails were showing clear signs of clubbing. He was on 5 liters of O2. His FIRST HOSPITAL ILD pulmonologist was calling regularly, trying to get the eval going. The transplant pulmonologist turned HIM away. She said she didn't think the eval had to be done on an urgent basis. That he seemed stable. I protested at the time, told her we had no Plan B if he crashed. She was unmoved. The clinic set the next appointment for June. HE was admitted to the hospital with either aspiration pneumonia or exacerbation or both on April 25.

I spoke to one of the transplant pulmonologists the day before HE died. SECOND HOSPITAL had directed me to move HIM to a transplant center. FIRST HOSPITAL pretty much refused. HE was on a lot of IV steroid at the time. That precluded him from surgery.

The update for your blog: FIRST HOSPITAL protocol demands that patients are on 20 mg of Prednisone or less for eval AND transplant. If you crash, any ILD pulmonologist's first reaction will be to reach for Prednisone. A lot of Prednisone. In doing so, transplant retreats as an option, at least here in CITY. It's not enough to get evaluated before you're sick. You must understand how the transplant center interacts with emergency treatment protocol.

It is that last sentence that I think it is so important for us. That is wisdom learned only by experience. She is going through the grieving of her husband yet feels so compelled to make sure this information is shared with us. An amazing woman. 

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