Life of a PH’er. A Dozen things you didn’t know.
In 2015 I was diagnosed with Eisenmenger Syndrome which caused Pulmonary Arterial hypertension (PAH); a silent disease that causes high blood pressure (hypertension) in the arteries of the lungs (pulmonary artery) for no apparent reason; a disease that causes shortness of breath, fatigues, elevated heart rate, blue-tinged lips, chest pain, and dizziness. Although there are therapies available to help ease the symptoms and make life more comfortable for sufferers, it is a disease where there is no cure.
I know, when you google for pulmonary hypertension or about me this is the sad description you get. But did you know that there’s more to this disease that you don’t know about? Which makes us quite rare!
1. Unlimited Supply of Viagra
Did you know that Viagra was actually found to treat high blood pressure in the lungs (pulmonary arterial hypertension)? Although the side effects got more popular… So yeah, most of us are on Viagra 20mg (or more) three times a day, along with another stronger vascular dilation medication. I know you must be wondering — does the viagra make us horny all the time? Well, I guess it doesn’t work with women that way. But keeps me wondering all the time how they treat men with PH? And I’m sure men must be initially wondering that the doctor got the wrong patient. So now you know who to reach next time you need your Viagra supply.
2. Blushing for No Reason
Since we are on Viagra and stronger vasodilators we blush without a reason. Yes our cheeks ears nose goes red like Rudolf without a warning. So Next time you see my ears cheeks nose all red, sorry guys i’m not blushing because of you or if you plan to ask “Looks like SOMEONE got some sun!”, Nope it’s the Viagra's effect on me.
3. Blue nails & Blue Lips — Who needs makeup or nail polish
So all of us who has pulmonary hypertension has a weak heart causing low blood oxygen saturation. When the amount of oxygen in our red blood cells is low our body parts can’t get the oxygen they need which makes our skin, fingernails and lips to turn in to a bluish color. So who needs to wear lipstick and nail polish when your lips and nails are naturally blue.
4. Heavy Periods
Most of us are on some kind of blood thinners to ease the blood flow in vessels. Which means more bleeding. If we have the slightest cut we bleed for days. And for women, bleeding is not just cuts we are due to bleed every month which results in heavy bleeding that sometimes so much we can get anaemic, and have low energy. It’s a unique struggle for those on blood thinners. So if you meet us at that time of the month you might feel like you visited a crime scene. So make sure not to judge.
5. No hot or Cold Showers or steam baths
Too much of Low blood pressure or high blood pressure is deadly for us. While the Cold showers increase our blood pressure the hot baths, spas and saunas help to decrease blood pressure by opening/relaxing the walls of blood vessels. So either one of those can cause us to pass out while having a shower, and may end up being the final bath we have. So it’s a NO for steaming hot showers for those for us who have PH, we will have to settle with only mildly warm water. I know its sucks right.
6. High Elevation — More intimidation
Did you know that air pressure is 30% lower at higher altitude due to the fact that the atmosphere is less dense — that means, the air molecules are farther apart. … So at high altitudes, the lower air pressure makes it more difficult for oxygen to enter our vascular systems causing oxygen deprivation. So for people like us who suffer from pulmonary hypertension, the lower oxygen in the lungs and the pulmonary arteries is quite deadly. So no more high elevations and flying for us. There goes my travelling/hippie life.
7. My bag is more expensive than your Prada.
Did you know our oxygen concentrators are more expensive than your Prada? Plus needs maintenance that costs about another Prada. And the best part is we don’t need an occasion to carry our expensive accessory as it is literally our expensive life partner, our lifeline who accompanies us everywhere. And guess what? They all have names too.
8. More Swelling than Pride
Most of us who have Pulmonary Hypertension has an enlarged right heart that struggles to pump blood around our body causing fluid retention and swelling. Salt and MSG makes it worse causing to retain more than a kilo of fluid overnight. So the more sodium we eat & the more we exert, the more fluid we retain causing us to swell more. Some of us end up having an significantly different weight when leaving the hospital after a dose of Diuretics.
9. We pee more than we drink
So as I mentioned earlier our disease causes our body to hold onto excess fluid. The fluid builds up and causes swelling in the ankles and legs, increased shortness of breath, fatigue, and sometimes chest discomfort for us. So to avoid this we are on Diuretics which make us pee more than we drink until all the excess fluid in the body is out of our system. Sometimes it makes me wonder how? Because I lose 2 kilos overnight from the diuretics when I only had two glasses of water the previous day. And a point to note; although we are normally slower than a tortoise, we can muster up a Usain-Bolt-like-sprint when we have to run to the loo. Which at times can be like every 30 minutes.
10. Tangled in real life
While some of us use the oxygen concentrators or tanks only when we are out and about some of us are tied to it 24X7. Whichever it is we all end up tangled in our own hose. It gets tangled on door knobs on our own clothes and accessories and we even trip and fall on our own oxygen hose. It is a bit hazardous but still it is our lifeline so we have no option but to untangle our selves.
11. I could have become a millionaire
… And the medical costs! Our medicine prices range between $10,000–$90,000 for a month. So without Health Insurance, I think we all would have a very short life. And even after insurance if we save all the expenses including co-pays and other expenses we could have easily become a millionaire in about 5 years time. Imagine if they scrap insurance for pre-existing conditions, and how many lives it will impact… It’s around 50 million people in the USA (who have Pulmonary Hypertension alone).
12. Oxygen saturation # lower than Tiger Woods best day on the golf course.
By default, our blood oxygen saturation is very low and when we walk talk or do the slightest activity the oxygen saturation falls much lower. But did you know that some of us can still function normally at 80% oxygen sat? Which is way lower than Tiger Woods best day on the golf course.
I’m sure that no one other than us PH’ers can beat us to this. If you can you are definitely are a Zebra like us or might be a Unicorn too. So next time you meet any of us you gotta know that you are meeting someone special because “We are Rare & We are Aware”.
