Showing posts with label Pulmonary Hypertension. Show all posts
Showing posts with label Pulmonary Hypertension. Show all posts

Tuesday, September 27, 2016

My High Altitude Simulation Test Experience



When I looked up information on having a High Altitude Simulation Test (HAST) completed, the information was vague, brief, and clinical. I couldn't find anything about what the experience of having the test done would be like. I thought I'd post my experience for anyone who might be looking for a little more than the clinical explanation.

When I met with my pulmonary hypertension specialist, one of the first questions asked was when did I first experience symptoms. Of course I couldn't tell that story without it being revealed that I travel quite a bit. Because I fly in airplanes several times a year, my specialist thought it would be a good idea for me to have a HAST completed. The test would mimic conditions in an airplane and would evaluate my oxygen saturation levels to see if I needed to bring supplemental oxygen with me when I fly. 

I arrived at Penn's Perelman Center for advanced medicine bright and early. This is my second visit to the center. It feels a little like visiting a fancy hotel. There are staff everywhere offering to help you, directing you where to go, there is even someone who coordinates the elevators. It makes you feel kind of special. 

I reported to Pulmonary Diagnostic Services and was greeted by Michael, who would be administering and evaluating my test. 



Michael was awesome! He was extremely friendly and very funny. I sat down on something that was halfway between an examination table and a chair. It was kind of like an examination throne.  

After getting some basic information, Michael explained in detail, step by step, exactly what the test would entail. I then had to sign a consent that said I wouldn't hold anyone responsible if I passed out or had a heart attack during the testing. 

The set up process took some time. I had sensors put in place to hook me up to an EKG machine. Another sensor was then placed on my forehead, and then my forehead was wrapped in a headband. The forehead sensor measured my oxygen saturation. I was informed that the forehead sensor is more accurate than using a finger clip. I was cool with that because the finger clip always makes me fidgety. I looked quite the sight. 



Next, Michael inflated a giant bag with a mixture that included only 15% oxygen.



The final step was for Michael to put nose clips on my nose, and for me to put the breathing register, that was connected via hose to the bag, into my mouth. 



The timer was then set for 20 minutes. 

For the first 15 minutes, I just had to sit and breath normally. Michael was great. He was talkative so I got to hear about his daughter wanting to attend college in Japan, he talked about the plane ride to Disney World, and a whole array of subjects. He kept what could have been a very boring and slightly awkward 20 minutes, interesting. At specific intervals, Michael would record my oxygen levels, my heart rate, and print out my EKG readings. Actually he said he was printing out more than the usual EKG readings because it had been a while since he had seen such beautiful heart rhythms. They were so perfect, I was clearly created in a lab by the government. Yes, that was my backstory. I must have escaped and I no longer have any memory of my time in the lab, but soon, according to Michael, I will discover that I can move things with my brain. Did I mention how great Michael was?  

After 15 minutes, I had to get up and walk. Some people are fine when just sitting, but when they get up and say, walk to the bathroom in the airplane, that's when they have troubles. This would explain why Betty in the Sky with a Suitcase (podcast) always has stories of people passing out on the plane. 

Michael started out walking with me, and then he broke out some entertaining dance moves. After walking for 5 minutes, the test was complete. It ended up being easy. Probably the worst part was that there's a growing saliva issue as the test progresses, and by the time you dislodge the breathing piece from your mouth, well it's sorta gross. 

Two things that could have happened during the test that didn't happen for me-  

- If they had trouble getting good readings, they would have to check my blood gas levels. Michael stated this is always avoided if at all possible, because getting your blood gas level checked is an unpleasant experience. 

- If my oxygen levels dipped under a certain number during the test, Micheal would have hooked up an additional tube into my breathing register. He would then start to pump in oxygen increasing the amount until my levels were at a safe range. This would have determined how much oxygen I needed on the plane. 

Fortunately neither of these events were necessary during my testing. 

Micheal unhooked me from everything. I joked about keeping the headband so that I could cosplay Eleven from Stranger Things. Michael happened to be watching Stranger Things so we geeked out together about the show. 

The good news, my oxygen levels never fell below the mid-80s, so at least for now, I don't need oxygen when I fly. Yay! 

Due to the nature of pulmonary hypertension, I'll probably have to repeat the test at some point in the future, but as long as Michael is there, I don't mind.

Because I'm a child at heart, and firmly believe that one should always be rewarded when having to endure medical tests, we stopped by Federal donuts.



Guess what they have? A churro donut! We ended up getting three donuts. I got the churro donut, Shannon got the blueberry pancake, and we split a tres leches. 



They were all really good. The churro donut however, was magical. 

Tuesday, August 30, 2016

How Travel Most Likely Saved My Life


It starts in Belize. In order to get to the first zipline platform, we have to hike up a hill, and then climb a ton of steps. 


Part of the way up the steps, I feel like I can't breathe. I’ve been exercising every day, how can I be this out of shape, I think. I let the others in our group pass by me, until I finally catch my breath. I climb the rest of the stairs. I have no issues for the rest of the day,


 or the rest of the trip. I shrug it off as a fluke.

A few months later we travel to Colorado. We decide to go hiking at Chautauqua Park in Boulder. 

We take an easy trail that meanders up the mountain. 


I’m having an impossible time. Going up, I can’t walk more than twenty steps without having to stop. 


I can’t seem to breathe. It’s not a huffing from too much exercise can’t breathe, I’m gasping for air, only able to take short breaths that do not seem to be delivering oxygen to my lungs. 


It takes me forever to get up the mountain. Fortunately once we level off and make our way down, I’m back to normal.
Just after our Colorado trip I get a huge surprise. I’m the winner of Un-cruise’s 20th Anniversary essay contest (here’s the link to the essay if you’d like to read it). My prize is a trip for two to Costa Rica and Panama. Seriously awesome! While reviewing the itinerary, I notice that there is a good amount of hiking. I don’t want to be the weird girl who can’t breathe during the hikes, so at my routine appointment with my rheumatologist (because I have Lupus), I mention my recent issues. She thinks it might be related to the pulmonary embolism (due to Antiphospholipid Antibody Syndrome) I had a few years ago, but it seems easier to rule my heart out first before poking around in my lungs. The rest has been a blur…

 -Echocardiogram
-      
          -Call from the doctor-pressure found in the right side of my heart. Must go to the    hospital immediately for something called a V-Q scan. The test involves breathing in    nuclear gas. Sadly I do not develop super powers. The test is clear, no blood clots in my  lungs.
-         
         -See a cardiologist. Lots of appointments with my rheumatologist. 
-        
          -Get a right heart catheterization. Pulmonary arterial hypertension confirmed. Start    treatment (taking Viagra, yup, you read that right).
-       
      -See the pulmonary hypertension specialist. Because it is a rare condition, there aren’t a  lot of specific pulmonary hypertension specialists. I’m lucky because I live near The Hospital of the University of Pennsylvania in Philadelphia. They have an entire pulmonary  hypertension center.  

     Fortunately for me, my pulmonary hypertension was caught early. My prognosis at this point is positive. My heart is still strong and healthy. Most people are not so fortunate. Most people aren’t ziplining in Belize, hiking in Colorado, or doing other activities that trigger symptoms this early. The majority of people don’t experience being short of breath until they are doing everyday activities. Usually by this point the pressure has been quietly deteriorating and weakening their heart, and things are pretty bad (sometimes in heart failure bad). I am grateful to God for an early diagnosis and a whole team of doctors who are dedicated to, as my new specialist put it, keeping me from "falling off the cliff." 

The condition is incurable however, so I’m stuck with it. Actually, I’d like to think that it is unluckily stuck with me. I’m not in the habit of feeling sorry for myself. I am a fierce kick ass warrior. I plan to continue to travel for as long as it is possible, which will hopefully be a very long time. 

There will be challenges that I’ll have to face as they come. For example, since we fly often, I already have a special High Altitude Simulation Test scheduled to see if I need supplemental oxygen when I fly. 

I've been greatly blessed to be inflicted with wanderlust and an ability to travel often. If it wasn't for the trips we took that triggered my symptoms, who knows how long it would have taken to discover there was a problem. I feel like travel saved my life.




*Extra Note- Although this site (and hopefully my new website coming in 2017) will primarily remain a place for me to tell fun travel stories, I will add information about my pulmonary hypertension when it’s relevant. I couldn't find any other travel bloggers with the condition, so I hope to offer as much advice as I can to any in the future. With everything I do, my goal is always to be an encouragement, whether it is encouraging someone to not let a chronic illness destroy who they are, or encouraging everyone to get out and experience cool, new things.