Iph

---

My mom was diagnosed in March of 1996 with idiopathic pulmonary Hemosiderosis. I will never forget it as I got the news on my birthday and she told me she had 1-5 years to live. The first year and a half was the worst. The first doctor to diagnose her with it sent her home with nothing, no explanation, no medicine, no nothing, except that she was going to die. She was in the hospital 3 times to get the blood pumped from her lungs. The third time I begged her to go see another doctor, as the first one refused to see her anymore. Finally the 4th time she needed to have the blood removed she went to another doctor. That is when we went to Columbia, MO, and met the best team of doctors ever. They got her stable again and set out on a journey to find out what exactly was wrong and how they could fix it. They set her up with a team of 100 different doctors. They still couldn’t tell her what, when, where, or why this happened but they didn’t give up on her. In 99/2000 they gave her prednisone. It was a wonder drug for her. Her trips to the hospital become less and less (for getting the blood removed from her lungs). It helped her for a few years and then the side effects of it started showing. The doctors struggled to control them and did a pretty good job. We lost our mom 3 times due to the disease. Doctors were able to bring her back all 3 times. The third time is when she decided she wanted her body donated to science in hopes they could find a cure for it. In 2008 my mom lost her battle. She made it 12 years with the disease. It was a long battle and a very hard one for all of us. I can remember cussing out new nurses for doing her iv’s wrong.
I remember laying next to her several times in the hospital bed while we would watch movies together waiting for them to remove tubes from her lungs. They told us this was a very rare disease and even more rare in adults. I hope every day that with her donating her body they have learned more about this disease. I will always be greatful and thankful to all the doctors from MU that she had. Without them I would have lost my mom a lot sooner. If you or someone you know is going through this, hang it there it will be a long fight but worth it to have more time with your loved ones. Dont let a doctor tell you there is nothing they can do either, go to another one. They might not know exactly what to do but there is always something they can try if they are willing to and you are willing to!!