Have you heard of Lymphangioleiomyomatosis?
I heard the word for the first time on March 25 when my doctor uttered the phrase “You have Pulmonary Lymphangioleiomyomatosis.” Since then my world has been an emotional roller coaster. It all started on Feb. 25 when I was admitted to the hospital with a collapsed lung. Five days after being discharged I was admitted again with the same condition. My doctor had me undergo a CT Scan which showed I had cysts on my lungs. I have never smoked a day in my life.
A lung biopsy was performed and talcom powder was placed in my lung in an effort to prevent further collapses. The biopsy was sent to the Mayo Clinic and the diagnosis that is changing my life was sent back to me. Lymphangioleiomyomatosis, LAM, is a disease that slowly kills the lungs. According to the information my doctor gave me only about 1,300 people have it in the United States. http://www.thelamfoundation.org/what-is-lam explains that the disease usually strikes women in their 30s and they are diagnosed in their 40s, if diagnosed at all.
For the last six years or so I have battled bronchitis. Now I know it could have been because of LAM. My doctor says in 10 years I will probably need a double lung transplant unless some miracle cure or drug is created.
After suffering an emotional break down, I went out and bought a new Mustang. Then I had a few normal days, then my doctor called and said I would have to travel to Denver, Colorado for treatment. That sent me back into an emotional crisis as the feelings of anger and frustration overwhelmed me. The next day I called the LAM Foundation in Cincinnati, Ohio and spoke to Sally Lamb. She told me there are women who have lived with the disease with out the aid of oxygen and lung transplants. However, bottom line is more donations are needed so more research can take place.
I still can’t wrap my mind around the fact that this has happened to me.I’m trying to come to terms with the fact that I must help raise awareness for this disease and beg people to donate to the foundation so that research efforts can continue. I do not know what my physical and or financial future is. So far living with LAM has been frustating, sad, and frightening and I fear the worst is yet to come. I had two calls from Denver and found the situation frustrating and time consuming. I was told I would be there for 5-10 days talking to people. I called the treatment center in Dallas, Texas and was told if I go there, it would be a one day ordeal.
So now I plan to go to Dallas. I spoke to another LAM patient who has lived with the disease for 14 years. She went to Dallas and is a lucky one. She has never been on a clinical drug, oxygen or a lung transplant. I hope I have her good fortune. Another positive is that a LAM patient won a contest sponsored by Metamucil and now the company is donating $100,000 to research.
Hopefully improved treatment or a cure is around the corner in the battle. I urge readers to log onto http://www.thelamfoundation.org Read about the disease, learn about the disease and if possible donate to research by purchasing a T-shirt or other item or just donate. Or log onto my donation page at https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1098071&supId=405644493
You can also order Scentsy from on my page. I’m giving a percentage to the foundation and funds will be used for my Dallas appointments. https://smrowen.scentsy.us/Scentsy/Home