Happy Leap Year

Well, it's a leap year. I am hoping that will bring good things to us all. My friend Julie posted something on her FB account that I want to share with you:

February 29, 2012 is National Rare Disease Day ... I have Pulmonary Arterial Hypertension, better known as PAH, or PH for short. What it is essentially, is a constant dangerously high elevation in systolic blood pressure in the Pulmonary Arteries in the lungs. These are the arteries that carry blood from the heart to the lungs to be oxygenated to carry oxygen to the rest of the body. My Pulmonary ...Arteries are constricted, thus restricting blood flow, which backs blood up into the right side of the heart and elevating levels. Eventually this causes Right sided heart failure. There is no cure for this disease as of yet, but there are many researchers out there diligently working to find one. This disease knows no boundaries, such as age, race and gender. Only about one person in a million Per capita per year are diagnosed with PH, which estimates currently about just less than 100,000 people here in the USA have it. Some of the symptoms of this disease are: Unexplained shortness of breath, chronic fatigue, chest pains, dizziness and fainting. This disease often goes misdiagnosed until it is too late because it can mimic so many less serious conditions. There are currently two tests that can be done to diagnose this disease. One is an Echocardiogram which is a sonogram of the heart and is often definitive and inaccurate and then there is the most accurate way to tell and that is by having a Right Heart Cath, where doctors usually insert a catheter through the neck or groin and push instruments up through the veins into the heart in order to get measurements and readings directly from the source. Just wanted to tell you a little bit about my Rare disease. Please, if you or anyone you may know suffers from any of these symptoms and the treatment they are getting does not really seem to be working, PLEASE get tested for PH as early diagnosis is essential for a good prognosis.

I think she did an excellent job of explaining what PAH is. Julie is a PHriend. That's a PH friend and I love that. It's been so helpful to chat on a conference call with other PH patients, to chat in the chatrooms that the Pulmonary Hypertension Association has. Noone understands like someone else going through this. You get helpful hints and like the other night when a woman named Carol told me that the side effects of adcirca would not last I felt so hopeful. She has been on the drug and experienced some of what I have.
This week I had to have my nose cuarterized for bleeding. I am also on blood thinner and I'm sure that contributed to the problem. No nose blowing for three weeks. Will I make it? Not sure. I must also sneeze with my mouth open. Yikes. Easier said than done but so far I have been able to follow the ENT's orders to a T. Soon I will be seeing a gastroenterologist and trust me, I need help in that area. My stomach is a mess. Adcirca is known to cause indigestion but I am getting it from anything going into my stomach, even a cup of tea. Prilosec helps somewhat but am hoping that a doctor can have suggestions or recommend another medicine that might be better.

Another Adjustment

I am having very serious stomach problems. It's the adcirca. No matter what I eat I have the worst heartburn imaginable. Nothing tastes right either. I find I can't go to sleep at night unless my head is elevated on three pillows to keep the acid from coming up. I wear a Cpap mask and you can't if you might throw up. Last night I had about three hours of sleep. My right foot is still swollen and has been for several days. Today I tried so hard not to eat anything that might have acid in it. I have an appointment with a gastroenterologist March 9th. I hope I make it until then. I can take over the counter Prilosec or Rolaids but it's not enough to really help. It also lowers my blood thinner forcing me to have more tests and up the dosage.

I think I might be breathing a little easier. I am hoping after another month or so to be in better shape than I am now. Won't know if the adcirca works until they do another heart catherization which I think will be a few months from now. Keeping my fingers crossed and praying for a good outcome.