I was extremely active ran marathons – weight training 2 hour cardio session in the morning, 10km afternoon run in the week and far run on weekends. I am (was) a S&R Paramedic (land, air, sea) Diving Emergency Care Specialist 2012 developed severe right sided stabbing chest pain, dizziness, dyspnea and fatigue. 2013 #hemoptysis post run, then pneumonia develops happened regularly. 02/2015 training for the Two Oceans 56km, felt severe pain, dyspnea, #ataxia, hemoptysis, developed a pneumothorax, later got another #pneumothorax from coughing, stopped all exercise; signs&symptoms worsened.
Several CT lungs, Clusters of nodules with a tumor right lower-lobe; cysts on the other lobes with #bronchiectasis, pleural thickening and scarring (necrosis, fibrosis), was referred to a Pulmonologist & Cardiothoracic surgeon. Professors decided to perform a lobectomy. They said at least your left lung is clear. The lobectomy performed 26/04/2016. A month passed, dyspnea & hemoptysis continued,#pleuritic pain started on the left side. Histology, diagnosis of DPO with Pulmonary Hypertension was made – several spicule nodules start forming in the alveoli, bone marrow starts growing in the nodules, normal size 1-6mm with cysts & #tumours mine was 55mm in diameter.
There has been less than 100 patients since the 1800s, with most diagnosis post-mortem. I’m the only Sub Saharan African patient with progressive DPO. 10/2017 CT, pleural thickening, scarring. Tumors on right are bigger,left lower lobe 15mm tumor, ground glass opacity; architectural distortion right upper lobe, several irregular bilateral diffuse nodules. My Hb drops below 8 often due to hemoptysis get transfusions and then Keep on picking up bacteria and fungi in my lungs, regular hospital visits.
Professors are frustrated they don’t know what to do.Pain management: Fentanyl patches, breakthrough pain Tramadol & Stilpane. See a Psychiatrist once a month for Major #DepressionSyndrome and #Phycologist once a ,week. My Professor’s said I will get a lung transplant, but not anymore they uncertain ,if the new lungs will develop DPO. I have accepted death, I try to stay positive. MY AMAZING DISEASES ARE ONLY MAKING ME STRONGER I REFUSE TO SINK HOPE ,ANCHORS THE SOUL LIVE EVERYDAY AS IF IT’S GOING TO BE YOUR LAST.