~Kim's Sarcoidosis fund ~
Organized by: Kim Ferguson
June of 2015 started to wheeze and cough and had eye problems swollen and hurt couldn't open it all the way. Could waln a few steps wothout havjbg to stop had awful cough and wheezing 24 /7 Went to eye doctor they gave me drops it wasn't helping so was referred to opthamologist he wanted to get a blood panel. He thought I had have Sjogren's or sarcoidosis or lymphoma right away. I've never heard of them. What the heck is sarcoidosis ! I went to a family clinic and I've had such a bad cough I test for breathing treatments and the resident on that treated me didn't want to help and give me anything no inhaler no cough medicine nothing even didn't want to do an x-ray. He said I had a cold or the flu and it was better to not give me any medication I was so upset I cried and cried that I was just sick and no one would help me I was so frustrated I couldn't get out of bed I was coughing wheezing and fustrated. Then I was referred to ENT he wanted to cut my face open basically they make cut along your ear all the way down to your jaw and peel skin over and take biopsies, I declined this treatment after doing any research on the side effects and possible nerve damage Bell's palsy damage to the nerves at least for now. I went to rheumatologist I had more X-rays, ultrasounds MRI , cat scan, nerve conduction test EMG blood workup you name it until finally got my ACT blood work up with was extremely high, the doctor said inflammation is active is but only way to confirm diagnosis is to have a lung biopsy so I agreed to have lung biopsy where the sample was taken to pathology blood workups tested for so many different things was told I had cancer until the lung biopsy came back with sarcoidosis. There is no cure for sarcoidosis. My face started swelling oddly shaped on one side on my parotid glands where a doctor thought I had lymphoma it was swollen so bad I'll looked like chipmonk and I could barely swallow I could dry mouth I was so weak I couldn't get up I couldn't just do anything but sleep. Ultrasound shows tumors in parotid glands . At first I couldn't go outside of the house because I look deformed I couldn't cry I have dry eye in high dossge prednisone I couldn't get out of bed I felt sick all the time. I lost my Medical because I had to quit my job I couldn't work and I was without insurance and I was getting treatment with bills that I still can't afford and I and I can't get further treatment, I owe doctors offices labs x-ray etc... I finally got Medical which but is limited treatment and usually you get residents that are just learning how to diagnose people and I've never heard of sarcoidosis and it's not very useful for my progression of my disease. Sarcoidosis is a disease involving abnormal collections of inflammatory cells that form lumps known as granulomas. The disease usually begins in the lungs, skin, or lymph nodes. Less commonly affected are the eyes, liver, heart, and brain. Any organ, however, can be affected. The signs and symptoms depend on the organ involved. Often there are no, or only mild, symptoms. When it affects the lungs there may be wheezing, cough, shortness of breath, or chest pain. Some may have Lofgren's syndrome in which there is fever, large lymph nodes, arthritis, and a rash known as erythema nodosum. The cause of sarcoidosis is unknown. Some believe it may be due to an immune reaction to a trigger such as an infection or chemicals in those who are genetically predisposed. Those with affected family members are at greater risk. Diagnosis is partly based on signs and symptoms, which may be supported by biopsy. Findings that make it likely include large lymph nodes at the root of the lung on both sides, high blood calcium with a normal parathyroid hormone level, or elevated levels of angiotensin converting enzyme (ACE) in the blood. The diagnosis should only be made after excluding other possible causes of similar symptoms. I have in access of $30,000 in bills and growing from doctors hospital visits and tests. My specialist in sarcoidosis required me to have other medical so, I need to have insurance.
Presently I'm taking chemotherapy which is the moon suppressant along with Prednisone for over a year. I require further testing to check lungs and body and brain to see where it has gone. Started losing my memory and I can't remember things or names or places I fear that I have and in my brain. I've exhausted my short-term disability and if applied for SSI which is long term disability since October of last year and have been waiting since and they denied my claim so I feel that and hoping for some miracle there . Anything you can do to help no matter how small will help thank you for listening and god bless.