On feb12,2001 I gave birth to a beautiful 6lbs 4ozs and 191/2ins baby girl.
When she was about 6mths old I started having symptoms of what I thought was the start of a bad cold.
After about a week it got worse to the point I was passing out at work(I worked at JC Penny).
I didn't have health insurance at the time and my parents where so worried they took me to doctors care and paid out of pocket for many visits.
The first visit xrays were taken. The xrays showed what looked like phamonia(right lung was full,left lung was 3/4 full). I was treated for phumonia for eight months with eight or more antibiotics with no results.
I was then sent to my first pulmonolgist(sp sucks sorry). I was under his care for about two and a half years. He treated me with 180mgs of prednisone daily. My mother and I kept asking what I had. He kept saying it didn't matter treatment is the same for all pulmonary diseases.
I then went to another pulmonary doctor for a second opinion,he said the same.
I wanted a third opinion due to harsh side effects from long term,high doses of prednisone(3 different kidney stone removals and GOD only knows how many I past).
Third times a charm. After only two visits he had me tappering off prednisone,on a nebulizer 4 times daily,and a spiral CT done).
Within two hours of the spiral CT appointment he had me back in his office.
The results were chararistics of pulmonary fibrosis,emphzema,and sarcoidosis.
When I was still under the care of doctors care they ran a blood test looking for markers of sarcoidosis which came back negative.
Within a week after the spiral CT he had me in the office of a therasic surgeon.
On Feb15,2004 I had a orthoscopic tripel lung biopsy. On Feb16,2004 it was confirmed,and I was diagnosed with sarcoidosis. After what was only supposed to be two days in the hospital, but ended up being 10 days(woke up with a chest tube it was taken out the next day,one hour after removal of first chest tube the second was put in).
The second chest tube was only put in due to my right lung not sealing like it was suppose to.
After diagnosis I was sent to the Medical University of South Carolina(I live in Charleston,S.C.) to be under the care of world renown sarcoidosis specialist Dr. Mark A. Judson.
I then found out that the sarcoidosis has reeked havoc on my body.
I have sarcoidosis every were but my heart,lungs,brain,and central nervous system.
I have several doctors that care for some other organs that sarcoidosis has effected.
The reason I have other organ doctors is because even though Dr. Hudson is a specialist I need doctors that specialise I those certain organs.
As of Dec.2008 my lungs(only have 52% lung function) are officially in remission.
The other organs can't be tracked to know if they are in remission.
Unfortnately I have to have a MRI every one and a half-two years due to showing symptoms of sarcoidosis of the central nervous system(horrible headaches,not migraines, that last for a minimum of a week to as long as a month accompanied by numbness of the hands,unable to grasp cups,door handles,ect,some times with drupping of one side of the face).
Depending on the type of sarcoidosis you have depends on the symptoms.
Acute patience : most have no clue they have sarcoidosis until a x-ray is taken for suspicions of other illnesses like phumonia.
If diagnosed with acute sarcoidosis 80% of patience will go into remission without treatment.
If you have chronic sarcoidosis(like I do,stage3) only 20% of patience go into remission without treatment.
The remaining 80% of patience have to be treated with prednisone or stronger starionds like methotrexate or other chemotherapy drugs.
About 60% of patience with chronic sarcoidosis in remission the sarcoidosis will become active again. When the sarcoidosis becomes active again it usually is worse then the initial onset of activity.
You should always keep your appointments with your doctor.
My sarcoidosis doctor told me he has had several patience go into remission stop keeping their appointments and when it becomes active again,and finally see him again,it has effected their lungs,kidneys,and liver to the point that they become terminal or need lung,kidney,or liver transplants.
Sarcoidosis can be a very bad disease and hard to handle, depending on the severity of the damage and organs affected.
If anyone needs more info on sarcoidosis feel free to e-mail me or private message me.
Hope my story helps anyone that has questions about how sarcoidosis can effect not just your body but your life as well.
Good luck to all that have been diagnosed with any type of sarcoidosis.