"I am a retired RN and never thought I would end up with PH. I never smoked and have found myself repeating those words over and over again these past weeks."
Hi, my name is Pam and I have been diagnosed with probable secondary pulmonary hypertension related to obstructive sleep apnea by a PH specialist. It has been a confusing time these last few years. I had been increasingly fatigued and blamed it on being overweight. A previous primary care doctor placed me on phentermine briefly to kick start his diet program using HCG injections and limiting my calories to 675 per day. It worked initially, but I think I just lost 26 lbs from fluid as the diet forbade salt in anything. It was too expensive anyway. Though I tried another round of this, the phentermine was out as it had increased my blood pressure before and was stopped before the third week. I wasn't losing much after that round of HCG so I quit it. I finally decided if I did not get moving, I would never lose this weight and I joined a fitness club.
I didn't lose right away, but I started to gain strength. After the third month I started losing regularly, but slowly. I was still fatigued afterward and sweat profusely, but felt it was worth the effort. Despite being in better shape and lighter, I was still diagnosed with diabetes later that year in September 2012. I was started on metformin. When the dosage was increased I started having some episodes of tachycardia that I never had before. I assumed it was due to the metformin, but when it was decreased again, the episodes continued. My PCP did an EKG that showed a conduction problem and a murmur. Then I wore a holster monitor for 24 hours that showed nothing unusual. Then I had an Echocardiogram that suggested a problem with the tricuspid valve, estimated increased pulmonary pressure of 55 and right atrial enlargement. I was referred to the PH specialist Meredith Pugh at Vanderbilt Medical Group. I will be getting a VQ scan of my lungs on Monday and she will be communicating with my Pulmonologist, Jatin Kadakia MD and My PCP Pedro Salcedo, MD. I am grateful for this organization (PHA) and for the current information it puts out and support for those newly diagnosed. I will keep you posted about my journey as it has really just begun. Now that I learned that the obstructive sleep apnea may be the problem, I may have to go back to wearing a cpap mask again. I had started an oral device about a year ago with my doctor's knowledge and I thought it was working well. We will see. I have to learn to be patient, but at the same time ask pertinent questions and read, read, read. I know from the many other stories I have read that I am fortunate to be getting the care that I need. I am a retired RN and never thought I would end up with PH. I never smoked and have found myself repeating those words over and over again these past weeks.
Had the VQ scan of my lungs and a chest x-ray today and got an email from my doctor about it this afternoon. It was normal and no evidence of clotting in the lungs. Great! That is one more thing eliminated from the list of possible causes of PH.
I have learned it is a long road to final diagnosis. I have obstructive sleep apnea and was diagnosed with pulmonary hypertension with an ECHO due to my rapid heart rate about a year and a half ago. Since that time I have been diagnosed with Graves ’ disease. I had the Propranolol that I was already on increased to 240mg daily to bring down the heart rate and now I am also on Methimazole for the Graves’ disease. I am due to see my PH specialist in October for another ECHO and assessment. I am also seeing an Endocrinologist for the Graves’ disease. I will have a sleep study this Sunday to see if the oral device I use is adequate. I think it is.
I have felt better since the Graves’ has been treated. I am not so sure the sleep apnea is the problem, but I am only going by my own gut feelings. Maybe someday soon I will know for sure what is going on with me and why. I don't want to add any more conditions to my already long list of maladies. I am grateful for this organization for its support and information.