Pulmonary Fibrosis Support Group

I have had issues with difficulty breathing with excersise since I was a teenager. I always thought I was a wimp and simply overheated and passed out. Later when I hit 30 i began to have problems with inflammation in my Uterus that was "unknown" causes after tests were done. Then I developed eye problems and retinal bleeding when I was 35. The eye doctor then suspected a systemic autoimmune disease. Many tests were done and nothing showed up as positives. I developed dry coughs and finally complained of breathing issues as I became fatigued and problems sleeping. I had the ct scan done and told to come back in cause they found abnormal results. I was terrified. The doctor was nice and up front told me he knew it wasnt cancer but there were 4 nodules that needed to be checked. it took 4 months to get another appt for the tests but by then i was feeling better and the lung wash was again inconclusive. I use inhalers, cpap and a nebulizer but only the cpap seems to help. I'm 45 now, diagnosed with fibromyalgia, undefined autoimmune disease, deconditioning because i'm overweight and undefined central nervous system disease with muscle weakness and pain. Needless to say I hurt when I breath, cough and choke sometimes when I eat. I finally have after 3 years of not being able to work gotten my social security setup for being diabled. I havent been able to go to the doctors since I lost my insurance with my job so I haven't gotten futher tests or medication. It is getting worse.

Last week, my father called me. He was diagnosed with Pulmonary Fibrosis at 73. lower and upper lobes are full by 92%. He wont take the steriods and he knows he wont get a lung transplant. He has battled heart bypass's and stopped smoking years ago. He only noticed his problem when he almost passed out on an outing while opening an ice chest and thought his heart was going at it again. The heart tests were normal and someone finally thought to do a ct scan. My feeling is he has had this problem for a long time but with his heart issues it was missed. He is very confused because no one in his family he knows of has had this type of disease. He wants me to go back to the doctor because of my problems. I will and hope I'll get better care than I have in the past.

I have battled systemic inflammation for years now. I've accepted that an uncureable progressive disease might not kill you in a month but with medication they can help the symptoms. The first step in hearing the news is confusion; then grief for yourself and family. Depression sets in for anyone with a Chronic Health condition. You can let this disease or any other get you down or you can fight to suppress it or enjoy what you have. Life changes everyday from new marriage, new child or illness. Its hard to give up the freedom you've had but you just have to manage what you do now have and make a new path.

My sister is also fighting similar issues. She has fibroid tumors that grow in her limbs and she has a benign tumor in her brain that cant be operated on. She is currently going through radiation treatment that is causing her alot of lesion problems. We always thought that the diseases we have came from our mother who has AAT caused emphasema; Addisons Disease; RA; OA and a mess of other problems she deals with. Now we know we have a double whammy on our lungs.

Everyone of us has been Misdiagnosed or Undiagnosed. We've gone from one specialist to other who has shrugged and pointed to another doctor or suggested seeing a shrink. Don't Give up. If you have chest pain and your told your heart is fine, have your lungs checked out with high rez ct scan.

There are many diseases out there and as new tech comes along the ability to diagnose it early. Sometimes it is still a hit and miss with doctors even good ones.
Posted on 09/17/09, 11:09 pm