Hello
October 13, 2009 11:51am
I just got back from a fundraiser that we had to raise money for Pulmonary Fibrosis. It all went well and I was so happy to see my mom. I am …
summerbell
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summerbell
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Update
September 23, 2009 11:52pm
Well a lot has happened since I wrote last. I moved to Spokane washington were I can live with family to help save for all my medical expenses. …
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Hello
July 27, 2009 11:37am
Well it has been a long time since I have written on here. I have been so buisy. I think I only had three days this whole month that I did not have …
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Journal Entry for February 14, 2009
February 14, 2009 9:51pm
WELL I HAD SURGERY YESTERDAY THE DOCTORS PUT A PORTA CATH IN ME SO THAT I CAN HAVE MY CYTOXIN IV'S. THE SURGERY WENT REALLY WELL I WAS IN AND OUT …
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Support Groups
Close Scleroderma
Type: Diffuse SclerodermaHello my name is Summer I have been sick since 2006. But was not diagnosed with Scleroderma untill august of 2008. My Scleroderma has caused me to have end stage interstial pulmonary fibrosis. I am now going through the process of being put on the transplant list for a double lung transplant. Fortunatly I have not had the typical problems such as thickening and hardening of the skin. But I do have raynauds.
Treatments
- Cytoxan Somewhat Helpful
Close Organ Transplants
Types: LungI am 28 years old and have a disease called scleroderma which caused me to have end stage interstitial pulmonary fibrosis. I need a double lung transplant and I am so scared.
Open Pulmonary Fibrosis
I have end stage IPF and need a double lung transplant
Treatments
- Cyclophosphamide Somewhat Helpful
- tired, my platelets get really low too
- Cytoxan Somewhat Helpful
Open Diets & Weight Maintenance
I have to lose about 70 pounds and fast because I have a life threatening disease. I am in the end stages of Interstitial pulmonary fibrosis and I need a double lung transplant. The transplant team will not put me on the transplant list untill I lose the weight. I know I need to do this but it is so hard because I love food. I also have a really difficult time with working out because I am on so much oxygen and I cannot breath good.
Treatments
- Counting Calories Working / Worked
- working good I just wish I could lose quicker
- NutriSystem Not Working
- terrible food. Couldn't handle it I would gag
