Hi, I wasn't exactly sure where I should post this...
I was diagnosed with scleroderma in1993, at the age of 30. Around 2006, my weight started to go up significantly when I started taking Amitriptyline. After a few years after that, my rheumatologist put me on Nortriptyline. I was obese. Around 2010, my rheumatologist retired, and my current rheumatologist started treating me. I weighed between 210 and 220. I am five feet and five inches tall. In 2012, I started having shortness of breath with activity (like walking). My rheumatologist ordered an echocardiogram and a pulmonary function test (PFT). The echo showed mild cardiomegaly, and mild pulmonary arterial hypertension (PAH).The pulmonary function test showed mild diffusion problems (decrease in ?). She referred to a pulmonary specialist. The pulmonary specialist ordered a chest X-ray. At my next appointment with him, he said the X-ray was normal. He said he wouldn't treat me until I lost weight. I was shocked.
Later in 2012, my then 21 year-old daughter began having serious psychiatric issues and attacked her dad. We had to file a Restraining Order against her. I didn't see any doctor until around February 2013, when my GP made an appointment for me to see him. One of the first things he said to me was, "Did anyone tell you your chest X-ray ahowed some fibrosis?" I was shocked. I told him, "No...the pulmonologist said it was normal." He showed me the X-ray, but I couldn't make "heads-or-tails" of it. He asked me when was I scheduled to see my rheumatologist again. I told my GP that her office should call me for my annual appointment soon. However, they didn't call me and I didn't see her again until the end of April, this year. I still had dyspnea. When I saw her, I told her that I was still having shortness of breath. She ordered a new echocardiogram, PFT and a CT scan of my chest (my first). About five days after the echo, I received a letter from her stating that the echo showed "No significant change compared to the previous one", meaning there was still PAH. Next, I had the CT scan. A day or so later, I received a letter (on a Wednesday) from my rheumatologist informing me that the CT scan "showed no evidence of fibrosis", and if I was still having shortness of breath, I should follow up with my GP. That Friday, my GP's office called and said that he wanted to schedule a phone appointment for later that day. When my GP called, he told me the CT Scan showed "several nodules" on my lungs (!). I told him that my rheumatologist had informed me that the CT scan was normal. The next Tuesday, I received a "Continuation" of the Radiology Examination Report for the CT chest scan. In the History section of the report, it mentions my scleroderma and "dyspnea on exertion". (However, I also have it when I am just sitting.) It mentions that the scan was done "without IV contrast". I don't know if that makes a difference. I'm skipping the medical terms so I don't make my reader's head spin. Several findings in the heart area were described as "not significant". There was "moderate" cardiomegaly and a "small amount" of pericardial fluid. No pleural effusion, soft tissues are "unremarkable". No pneumothorax. It goes on to mention three, 3mm-4mm pulmonary nodules . One of these was a 4mm "groundglass" nodule . The report continues, "If there are no significant risk factors for malignancy, no specific follow up is recommended; if there are risk factors for malignancy, recommend 12 month follow up CT chest." There were no areas of bronchiectasis or fibrosis identified. There was scarring or atelectasis in the medial right middle lobe. ( I have read that a finding of atelectasis can be due to not inhaling all the way during the scan.)
That's basically the gist of the report. I gradually decreased the Nortriptyline (with a doctor's permission) and, as of this week, I am no longer on the Nortriptyline. I still weigh about 220 pounds. I am concerned because I have to see the same pulmonary specialist on Monday (June 16th). I think he's the department Head. I have read that, as soon as PAH is detected in a scleroderma patient, it must be treated aggressively - even if it is asymptomatic. I have also read about "Pickwickian Syndrome", a condition where obese people develop PAH because of the strain the weight puts on the body.
Can anyone give me any advice on this? Does the scleroderma "trump" the obesity in PAH? I sometimes have chest pain (recently) as well as occasional bouts of coughing (also, recently). Is the pulmonologist justified in delaying treatment until I am no longer obese?