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Sunday, May 11, 2014

Saturday, April 12, 2014

Raising awareness about Lymphangioleiomyomatosis

On March 25, 2014 I was diagnosed with a rare killer lung disease called Lymphangioleiomyomatosis.

I heard the word Lymphangioleiomyomatosis for the first time on March 25, 2013 when my doctor uttered the phrase "You have Pulmonary Lymphangioleiomyomatosis."

My world became an emotional roller coaster. It all started on Feb. 25, 2013 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 talcum 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. The LAM Foundation explains that the disease usually strikes women in their 30s and the diagnoses usually comes in their 40s, if at all.

For the last six years or so I battled bronchitis nearly every year. Now I know it could have been because of LAM. My doctor says in 10 years I could 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 with then executive director Sally Lamb.

Their website is www.thelamfoundation.org/

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 donations are needed so more research can take place.

Lamb has since left the foundation and Sue Sherman is in charge now.

At the time I composed this article I still couldn’t wrap my mind around the fact that this happened to me.

I was 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 didn’t know what my physical or financial future was, still don’t as really no one does.

Living with LAM has been frustrating, sad, frightening and I feared the worst was to come.

I spoke to the hospital in 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 I went to Dallas. Had a wreck and a death in the family while gone.

The only bright side was a good visit with Dr. Carlos Girod.

He was very nice and not frightening.

He delivered good news that my lung function is still good.

My goal is to keep it that way.

Since the June 2, 2013 visit. I completed a 5k in an hour and 15 minutes and successfully defeated a virus that makes your throat hurt for three days, steals your voice and then curses you with coughing and sinus issues, with out the aid of prescription meds or hospitalization.

I have organized two successful T-shirt fundraisers and two local fundraiser.

The events generated $1,400 for the LAM Foundation.

I have added pine oil capsules, raw honey and cinnamon to the diet and continue to research possible diet supplements.

So far I have been lucky. I read stories on Facebook of others who are chained to oxygen machines, many have never smoked. Like all disease, it makes many ask, Why me? Especially those like me who have never smoked.

So that is my story and the chapters I hope to add to it is continued wellness, research and one day a cure.