Have you read another blog and that you totally understand where the blogger is coming from? Last night I read a blog and it hit me in my comfort zone. The blog was talking about one of their immediate family members recent diagnosis and how everyone is pulling together. It almost seems like it was yesterday that my stepmother passed away from the same disease her family member is facing. Pulmonary Fibrosis. The prognosis isn't good if you know someone who's living with it. Our family learned to accept the uninvited disease and face the unknown.
Pulmonary Fibrosis can be considered a terminal illness and is always fatal with a life expectancy of 5 years. We had less than 6 months.
Pulmonary fibrosis is the formation or development of excess fibrous connective tissue (fibrosis) in the lungs. It is also described as "scarring of the lung". (Source Wikipedia)
Symptoms
Symptoms of pulmonary fibrosis are mainly:
Shortness of breath, particularly with exertion
Chronic dry, hacking coughing
Fatigue and weakness
Chest discomfort
Loss of appetite and rapid weight loss
Pulmonary fibrosis is suggested by a history of progressive shortness of breath (dyspnea) with exertion. Sometimes fine inspiratory crackles can be heard at the lung bases on auscultation. A chest x-ray may or may not be abnormal, but high Resolution CT will frequently demonstrate abnormalities. (Source Wikipedia)
In 2009 or 2010 everyone began to notice my step mom was losing weight rapidly and starting to experience shortness of breath. Her activity level quickly diminished. She stopped going to town. This was a woman who went to town multiple times a day or drive 70 miles (round trip) for a deep fried pickle. Or 100 miles for beef jerky. Her sudden exhaustion didn't raise too much concern because she was 80, general tiredness should be expected with aging.
As the shortness of breath persisted and continued to get worse testing began in 7/11. In August she was diagnosed with Pulmonary Fibrosis. The prognosis was bad. My dad, niece and stepsister began providing 24 hour care at home. On 12/14/11 my stepmother was admitted to the hospital to have higher amounts of oxygen administered. She was quickly put on 15 liters. On 12/20 the Dr felt she should be put on a ventilator, she refused. The hospital wanted her to go to a hospice, she refused. She just wanted to go home. The hospital she was in was 50 miles from home.
On 12/21 my family arranged for a squad to bring her home. Our family realized she might not survive the trip but it's what she wanted. A couple hours before the transport some of the family came in to be there when the extra oxygen tanks were delivered, three tanks were connected. My step sister got her new furniture (she never sat on) and another decorated a tree. The hospice nurse arrived .
During the transport her oxygen had to be decreased. Again we were aware she might not survive the trip. Once the squad arrived and she was being unloaded her eyes brightened up. You could see a radiant smile behind the oxygen mask as she greeted the family with a wave. She was home.
It took an hour or so to get her situated and for quick training for those providing direct care. My family was shown how to give her morphine during the times hospice wasn't there. We thought we would have a few days so I was supposed to go the next morning to be with her.
The hospice nurse gave her morphine and she started burning up. The doors and Windows were opened. My family put on a CD of Dolly Parton singing "precious memories". Her conditioned worsened but she was alert enough to comfort my step niece. She told her not to cry I'm with Jesus now.
She passed away as Dolly was singing "Precious Father, Loving Mother". I'm bawling as I write this.
Perhaps the ambulance ride took away hours or days from the time she had left but it's what she wanted. Maybe the hospice might have gave her a few days but she just wanted to go home. Why deny her that? She felt she took care of her 9 children including me and some of her grandchildren , we should take care of her. My family took good care of her. Did she suffer? Her golden heart stopped beating before she started completely suffocating. In the end it would of felt like trying to breathe with a boulder on her chest. She made a choice to refuse further medical intervention just to go home.
It breaks my heart knowing a family I only know through blogging will take this same journey my family traveled not long ago. I'm praying for them
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