- Idiopathic Pulmonary Hemosiderosis
- Interviews
Iphdaughter1's interview
How did all start?
My mom started coughing up blood in 1994 when we lived on a large hog operation. We always found it odd because she had a cat that started doing the same thing a year earlier and then he passed away a year after she started coughing up blood.
Do you already have a diagnosis? How long did it take you to get it?
She got diagnosed in March of 1996. She ended up in the hospital with her lungs full of blood and that’s when they diagnosed her.
For what medical specialties have you been treated? What has been the most useful specialty for your?
The doctors would pump the blood out from her lungs. This worked but only for short periods of time.
What has been the most useful thing for you so far?
The most useful thing they gave her was prednisone.
What have been your biggest difficulties?
Not knowing anything about the disease and no one else really knowing anything about it.
How has your social and family environment reacted? Have your social or family relationships changed?
I left school to go be with my mom. It brought us all together much closer and stronger. We were always a close family but this just made us closer.
What things have you stopped doing?
She never really stopped anything. The doctors wanted her to quit smoking and she tried but was unsuccessful.
Finally, what advice would you give to a person in a similar situation?
Find a doctor or team of doctors that cares and is willing to try new things to see if it works. Don’t give up hope. They gave my mom 1-5 years to live and she made it 12 years total with the disease. 14 if you want to count the 2 years undiagnosed!
