Wednesday, February 29, 2012

Happy Leap Year

Today, Leap year day is national rare disease day. As the lucky person who has pulmonary arterial hypertension I wanted to mention this. Only one in a million people get it which keeps the costs of the nine drugs used to treat it very high. It's called an "orphan disease." What it actually is was explained so well by my friend Julie that I used her explanation on my FB page to describe it. It's basically a problem between your heart and lungs. " This was Julie's post which she agreed I could share:
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 thought she did a great job of describing it. Few people who read this will ever need testing or deal with it because it is so rare but most people take two years or more to be diagnosed with it. Breathlessness can mean so many things. This week I have been dealing with two problems that may or may not be related to the PAH. One is very bad nosebleeds. I am talking the kind that last over 40 minutes and respond to nothing. Eventually huge clots are forming in the nose and falling down. It's grosser than I can describe and very difficult to deal with. I have ruined clothing etc. On Monday I finally agreed to have an ENT get involved .He told me that my blood vessel in my right nostril was really bad, in fact raw. I needed to have that cuarterized. Once he did that a few times (chemically not the ancient heated iron method!) he checked out my left nostril, which has been less of a problem, and decided that one needed doing too. I had that one done as well. It really burned and then my nose dripped clear fluid for many hours afterwards. For the next three weeks I am not allowed to blow my nose (and it feels stuffy) OR sneeze without opening my mouth. Try that. Not as easy as you would think. I have different saline solutions and antibiotic ointments that get applied three times a day. What fun. I am on blood thinner for my artificial heart valves so that may be what caused or contributed to the problem as well. I go back in three weeks and I certainly hope that this will end this problem.
I am also having stomach problems. I have chronic indigestion. What I eat has little effect on it. I have tried the two week trials of Prilosec and the minute I stop them, the problem is back. My stomach has become so very noisy. The PH medicine I take is known to cause stomach issues. It could be that. I have an appointment with a gastro and am hoping he will know what to do. Because of the PH medicine there are restrictions as to what I can take. I don't think I can tax anything as strong as Nexium and the Prilosec has to be the lowest dosage.
We will figure it out. I feel as though I am making headway, even if slower than I would like.
We are expecting some snow this morning. I am excited. We only had a dusting earlier this year and since I am not going anywhere the next few days a few inches might be nice. Rob has been having a problem that we are also dealing with. Hopefully it's nothing but he is missing work to go to appointments. He has used all his time off. As long as he is okay, it's alright.
I am hoping Leap Year will be a great year for all of us. Lots of new beginnings out there. :)

1 comment:


I did not know that Leap Year day was also National Rare Disease Day. The explanation about Pulmonary Arterial Hypertension helped me understand better. Thank you for that. I can't imagine how you cope. I am so sorry to hear about the nosebleeds. I had them many years ago and know how frustrating they can be. I'm glad it was a problem easily solved even though you are feeling some discomfort after the fact. I hope someone can help you with the heartburn problem, as well. My prayers go out to you and your hubby. I hope he is ok? Things here are in a state of flux too. We're taking each day, one at a time. I hope the leap year brings us all better days ahead. Take care.