I'm new here...and I have a lot of anxiety regarding this topic. I'm hoping some of you can offer me some support or advice?
I'm 27 years old. 3 years ago I started having bouts of dyspnea that were so alarming I went to the emergency room. My oxygen level and all that was great, but no matter how I tried to steady my breathing, I just felt like I couldn't get enough air. I would have to sit up and try to breathe deeply and yawned constantly. Suspecting a pulmonary embolism I was admitted to the hospital, and after that was ruled out, diagnosed with asthma. About six months later, I was back in the hospital with the same complaint. This time they did a CT scan and found a 4mm nodule in my right upper lobe. They released me and instructed me to have a repeat scan in a year. 6 months later, I'm back in again for the same thing. A repeat CT scan shows another couple of nodules (I do not know the size of these). A year ago I was admitted to the hospital again for the same breathing issues. Again they suspected another pulmonary embolism (my blood work always comes back suspicious of this, although I hear that is quite common.) This time there were many, many nodules (although I still do not know the exact number). I was instructed to follow up in 3 months with another CT scan, which I did do. This showed even more nodules once again. Then the doctors told me to wait another year. They will not say that the nodules have "stabilized". Now it's been a year and I have to go back this month for another CT scan. I AM TERRIFIED. The problem is that my husband is in the military and we have military health care. I went to visit one of the providers a couple of weeks ago and she (seeing my file, 3 feet thick) asked me what was going on with my lungs and I burst into tears. She said that the reason that they have not come to any kind of conclusion is because the doctors have no idea how to treat me. She said that I am the youngest person with lung nodules she has ever seen in all her career. She also said that she has never seen anyone with so many. I am hoping to be referred to a pulmonary disease specialist after this next CT scan, but I am very discouraged and tired of the medical community. In the past five years I have had medical mistakes almost cost me my life, and just pure lack of care from the doctors and surgeons here. I hope Obama does not get his way. We need our civilian doctors. (But that's another topic.)
I'm sorry this is SOOOO long. I could probably keep typing on about it, but this is the jist of it I guess. If you have any advice for me, or anything else, please do. I really do appreciate it.
They have not tested me for ANYTHING...They just keep telling me to wait another year and come back...then nothing again. I just got off of the phone with my doctor's nurse and she says that the two offices in the hospital (family practice and internal medicine) are now "fighting" over my file. Internal medicine wants me to wait until April for my appointments and a new CT, but family practice insists that I have treatment done now because of other symptoms (hair falling out, severe hormone fluctuations, extemely awful fatigue, GERD...etc). They think something else is going on. Hallelujah! She said that the 4mm nodule in my right lung they think is a scar although all the new nodules are pleural and non-pleural (radiology report still says "several" but no specific number or size) which I have to admit scares the be-Jesus out of me. I just keep getting information little by little.
I will definitely ask about the histoplasmosis. Thank you very much, and I will keep you posted after my appointment on Wednesday.
PLEASE KEEP ME POSTED , I KNOW WHAT IT IS LIKE WAITING TO HEAR IF YOU HAVE A HORRIBLE ILLNESS .I GO TOMORROW FOR A CT SCAN FOR ALL THE SCARES ON MY LUNG AND THEY WON,T CALL ME UNTIL LATE NEXT WEEK , BUT I FEEL VERY AFRAID , DON,T KNOW WHICH WAY TO TURN .I JUST KEEP PRAYING THAT GOD HAS BIG PLANS FOR ME . I WILL KEEP YOU IN MY PRAYERS . FELICIA
I have a diagnosis! I have Sarcoidosis! There is A LOT of information on the web about it. I went to the doctor today and in reviewing my medical and personal history, they finally told me what I have, and it ALL makes sense! I'm SO exicted to have a diagnosis, since it equals a prognosis! YOU ARE ALL IN MY PRAYERS!
i was diagnosed with breast cancer in Dec. 0f 08. 44 year old female. Had a PET SCAN in Jan. 0f 09. Oncologist told me the breast cancer had spread to my lungs and lymph nodes in chest and some bone areas. Before I was diagnosed with breast cancer, I had developed a dry cough could not get rid of, still had cough during Chemo, oncologist related it to chemo. Went thru 8 rounds of chemo. Did another PET SCAN after Chemo and oncologist said it did a great job of getting rid of the breast cancer but spots were still showing in lungs and bones and more spots in spleen, without doing any further testing, he wanted to start me on Chemo again immediately to contain the other spots......At this point I was devasted, decided to get a second opionion. Went to different Ocologist and she started doing all kinds of scans immediately...CAT SCANS, BONES SCANS, MRI'S after all scans were done, spots still showing up on lungs, so I went in for a lung and lymph node biopsy. Came back as Sarcoidosis. Also during all this all my blood work came back normal, no abnormalities. Cancer count down where it should be within normal limits, had a bone scan done on spine area and it came back as sarcoidosis. Had a partial mastecotomy and went thru 33 treatments of radiation, have been getting Zometa treatment every 3 months for bone issues and scans done every 3 months, last PET SCAN done in January came back and everything stayed pretty much the same, just had CAT SCAN of chest, abdomin and pelvis, now showing new nodules in lungs....Scarred to death........not sure if sarcoid is acting up or something new, but I did develop the cough back just about a month ago and was sick with a small cold, still having very dry cough, no shortness of breath, blood work was perfect again. Lung specialist wants to do another lung biopsy........VERY NERVOUS AND SCARRED......
Hi everyone! Like alot of you I have nodules on both of my lungs. July of 2011 I had a catscan that revealed 1 nodule on my right lung. I was told to repeat the catscan in 6 months. I had my 2nd catscan done at the end of December. Now they tell me I have developed several nodules on both lungs. I am a bit concerned about this. Now I have to wait another 6 months to see if it grows. I am at high risk for breast cancer and I had a hysterectomy 3 years ago that revealed pre cancer cells on my cervix. I am beside myself with worry.
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