I realize a lot of people will be viewing this site and they will not understand exactly why I am so sick, so I really wanted to share with everyone the whole story of my lung disease from the very beginning.
It started about twelve years ago when I was in my early twenties. It seemed like all of a sudden I started getting sick a lot. In a matter of just a few months I was hospitalized three separate times. Twice it was for pneumonia and once for pleurisy. I also had my tonsils and adenoids removed. Well, needless to say I got tired of being sick so I sat down with the doctor and asked them to do some kind of testing to see why I was getting sick all the time. I was tired of them just fixing me because I would always just get sick again.
They sent me for tests and told me that there was something showing up on my lungs and they needed to do a needle biopsy to find out what they were dealing with. They told me at the time they believed it to be cancer. So, I went for the needle biopsy and they couldn’t get what they needed to make a diagnosis.
Then they decided to do an open lung biopsy. I had the operation. I was in the hospital for two weeks. I still am not sure how I survived that surgery. Anyway, when they got the results back from the biopsy it turns out that I had a rare lung disease called Fibrosing Mediastinitis caused by a super human response to Histoplasmosis. They treated the Histoplasmosis and told me there wasn’t anything they could do for the FM (Fibrosing Mediastinitis) because there wasn’t a cure. They said that the Mayo Clinic was doing research and if they ever came up with anything someone would call me.
Please try to remember that I was a young girl in my early twenties and had very little experience with doctors or anything medical. They did not act as though this was a terrible disease that would continue to grow. I was never followed up with in regards to this disease again. I went back to life as usual. I noticed over the years that my breathing was getting worse but I thought that was just from losing part of the right lung (taken during the open lung biopsy years earlier).
Here I am twelve years later and my breathing has become so bad that I couldn’t even carry groceries up to my second floor apartment without feeling like
I was going to pass out when I got to the top. So, I made a doctors appointment. I wanted to find out what was going on. This was in October 2006. My doctor sent me for an x-ray and a pulmonary function test. When those results came back he said there was definitely a problem, so he sent me to see a lung specialist.
This doctor sent me for a CT scan and a different pulmonary function test. So, I got these results back and they showed a definite problem. This doctor recommended a bronchoscopy so they could get a biopsy. The only problem was he couldn’t do it because he was crippled with arthritis, he told me I would need to find another lung doctor to perform the procedure. I found another lung specialist and he agreed the bronchoscopy needed to be done. That was done in December 2006. They were unable to make a determination from this procedure.
Next he talked to me about doing another open lung biopsy. I was terrified. There was no way that I wanted to go through that again. I just knew I couldn’t do it.
I went to see a surgeon about doing the operation. Because of my previous surgery he really didn’t want to go in on the same side because of complications the scar tissue could cause. So, he sent me for more tests to see if the left lung was as bad as the right. When these tests came back they revealed that my right lung was receiving no blood flow at all. After many more tests and procedures they finally re-diagnosed me with Fibrosing Mediastinitis. Because of this disease I also have severe pulmonary hypertension.
This Fibrosis is a scar tissue that has wrapped itself around my arteries and veins squeezing them off. Because of this scar tissue I am not a candidate for a lung transplant.
My right pulmonary artery is completely blocked so they tried to go in and stent it but were unsuccessful. I found out also that the left pulmonary vein was almost completely blocked. The doctors were giving me just months to live if they couldn’t put a stent in the vein. I had to see a pediatric cardiologist because he was used to working with small veins. The stent was placed and appeared to return blood flow through the vein. For the first few days afterwards things seemed pretty good. After that everything started going downhill. I started having excruciating pain in my chest and problems with my breathing.
This disease has progressed so fast over the last year that I am on oxygen 24/7 now and it seems I can’t stay out of the hospital for more than a few weeks at a time. In July I had a three week stay in the hospital. I went because I couldn’t breathe, my oxygen levels kept dropping and I couldn’t get them to stay up. While in the hospital I started coughing up blood and lots of it. They had to do an emergency surgery to the right lung. It was called an embolization (closing off the blood vessels). The doctor never expected me to make it home from the hospital that time. I am still dealing with this and many more symptoms.
I have been in the hospital at least 8 to 10 times since March 2007 and most of my stays have been long. I do not believe that I could have made it through any of this without my family right there by my side. The love and encouragement that they have shown is truly beyond human understanding. To be a part of God’s family is a blessing.
In the last year my life has been turned upside down and inside out. I have learned to love and to be loved!
The pictures and videos on this website are so very precious to me because they are about the love of God. God has touched so many people through my illness. I am thankful that he chose to use me.
