Hi Everybody,
I'm not even sure where to start. I have ARVD/ARVC, Cardiomyopathy. Ventricular Tachycardia. Heart Failure, DVT's, Pulmonary Hypertension and my docs thought this was all from the ARVD.
Blood tests in the past showed no clotting disorder but every time they took me off Coumadin I threw another clot. So lifetime Coumadin now. I've had lower back pain for 2 yrs and kept telling my internist something was wrong. He took some x-rays and told me everything was fine and dismissed it. I have recurrent bouts of pleurisy and cough up blood. I have been to the Cardiologist, who sent me to the lung doc, who told me maybe asthma and gave me some inhalers. He told me it was my heart and back to the Cardiologist I went. He sent me to my PC, who kept telling me, I don't know what to do with you and would throw his hands in the air. He blamed my HF and increased my water pill which really made me sick. This has been going on for years and finally I was so sick and weak sitting in my Cardiologist's office this May. He said, Why isn't anyone checking into your Pleurisy and why you keep coughing up blood. I sat there and shrugged my shoulders. He said, I want you to go to the PC and tell him to run some blood and check for Vasculitis. I did and my PC asked me what tests he should run. I asked him to please call my Cardio and ask him. So frustrating! Anyway I finally had the tests done.
My ANA was a little high and he told me it's probably nothing. He said my ANCA's are elevated and when I asked what that was for he snapped at me and told me to call a Rheumatologist, he doesn't know. I was done with that PC. I did go to a Rheumy and he ran his own tests. ANA, Lupus,... You all know. They were neg but the Anca's are all positive. He mentioned a lung biopsy to me and told me to go to my lung doc and ask. My lung doc said I had some scarring and inflammation but nothing to biopsy. He told me to go see an ENT and let them do the biopsy. So I went to the ENT, he checked me and found a granuloma on my voice box. He said it is not related and is probably from GERD. He even did a CT scan and told me I had broke my nose in the past! My eyes went wide! I didn't even know. LOL Anyway he didn't find anything suspicious in my mouth or nose.
I called my cardio that Friday because I was very SOB and having bad chest pains. he said go to the hospital. I did not! I have V-tach! So when I go to the hospital, it's all they see and panic! My breathing has been getting worse as well as the chest pain. I went back to the lung doc on Monday. He put the pulse ox on me and the nurse walked with me as I told her I was having trouble breathing. she kept showing me the reading. 99%. I kept telling her I can't breathe and she let me sit down. My heart rate went up to 140 and my 02 dropped to 90% I was having a hard time breathing. The lung doc told me it's not low enough to get me oxygen. I have to be at 88 or 89%. My head was spinning at this point.
I went back to the Rheumy, who wondered what happened to me since May. I developed Bronchitis and the lung doc had to put me on prednisone to help me breathe. I just came off the prednisone late August and the Rheumy realized the second set of tests he ran was when I was on the prednisone. And they all came back negative. He just repeated the test last Monday and He said the ANA and lupus were negative and the ANCA's positive again and this time higher. He wants me to start on Plaqunil for the pleurisy and Methotrexate. I'm just so confused in all this and I really need a good doc to help me figure this all out.
I thank God for my cardiologist! He never gave up on me and always spoke the truth. He explained I have HF and VT and PH and all but he didn't think it was severe enough to be causing all my symptoms. All this time we thought it was my heart and now I would love to find out it's not and there may be a treatment to help me feel better! : )
I have SOB, chest pain, recurrent pleurisy, hearing loss and ear infections, eye pain and burning, (This is new) Liver pain, back pain, nose bleeds, unintended weight loss and just feel really weak. Oh and I don't think it has anything to do with this but a few months ago my feet were killing me! I actually went to the foot doc because it hurt to walk on them. It felt like really bad cramping, so strange.
I live in NY, Long Island if anyone knows of a good doc? PC too! I'm open to all advice.
I thank you all for listening and being so bold as to share your stories on this board. As I sit here and type this I realize it's a Godsend... for many!
Thank you Andrew for encouraging me to share!
Thank you All!
Blessings,
Hope003
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