Hello to family and friends,
I've never blogged before so forgive me as I attempt to convey what is happening with Mom right now. First, for anyone who is just joining the loop, Mom was diagnosed with idiopathic pulmonary fibrosis last March. She has been on oxygen and in therapy ever since. She initially improved with the oxygen and exercise and had stayed stable since then. She has been on the lung transplant list which is her main hope for living out her life. Without the transplant she is looking at 2-4 years to live after the initial diagnosis. Pulmonary fibrosis is a disease effecting the membrane between the lungs and the heart affecting the transfer of oxygen from the lungs to the blood stream. With pulmonary fibrosis, this membrane thickens and decreases the oxygen's ability to transfer into the blood stream.
A couple weeks ago she came down with pneumonia and was hospitalized at UW where her main doctor is (Dr. Raghu). We are fortunate that he is one of the world's leading doctors in pulmonary fibrosis and has been on her case since the start. The pneumonia was treated with antibiotics and she was sent home. She continued to have a lot of trouble breathing and moving without significant breaks to restore her oxygen levels. On Sunday night she woke up having trouble breathing in the middle of the night and with a fever. She was taken into the UW on Monday where she has been ever since.
Initially they were investigating for a missed infection and had her on a number of antibiotics. Her white cell (immune system) count was steadily increasing and the doctors felt they were missing an infection. She had some pain in her back and was given a CT scan and MRI to see if something was going on there. They never found any other infections and today her white cell counts began to come down. With the absence of an infection, her oxygen levels should have been returning to normal. Unfortunately her oxygen levels are not increasing.
There are two things the doctors are going to attempt today and tomorrow to see if they can combat the fibrosis.
1. The MRI showed that the membrane around her lungs has thickened significantly over the past week. There is a chance that this is temporary inflammation that can be reversed with steroids. She is currently on the cortisone steroids to try and reverse this inflammation. The hope is that this is not a permanent progression of the fibrosis.
2. There is a valve in the center of the heart that the blood is not supposed to travel between except at birth. The blood travels from the left side, down to get oxygen from the lung and then to the right side and back through the body. If there is pulmonary hypertension, the pressure from the lungs is greater than the right side of heart so instead of the blood traveling from the left side, into the lungs and then to the right side, it skips the lungs and travels through the center flap straight to the right side. This flap is used while in utero when the lungs are not yet functioning and the blood circulates straight through the body without the lungs. It looks as though this is happening with Mom right now and they are going to attempt medication to remove the hypertension.
Papa says that there is about a 50% chance that one of these will work. If they don't work then she will most likely be on a ventilator in a couple days and has about 10 days to live. She has read all the Facebook comments and messages and sends her love and thanks to everyone thinking of her and praying.
Prayer requests from the family:
1. Strength for Mom emotionally and physically
2. That the steroids and pulmonary hypertension medication would help the oxygen levels
3. That a lung transplant would become available
4. Wisdom for the doctors
5. Peace and hope for the family
The best way to contact us would be through email at namleerc@msn.com or through Papa's cell (206)354-9533 or my cell at (206)354-9505 (call or text).