About my PH

Idiopathic Pulmonary Arterial Hypertension. The four words that changed my life forever. It's a life-threatening, progressive, incurable disease. It's no joke.

Here is a note I posted last year from my Facebook page. This pretty much sums it up!

I know I am long-winded and I will try to keep this as short as I can... Ha! Looking back on my life before PH I was a Tasmanian devil of sorts- whirling through life at an insane speed. I spent most of my youth dancing and most of my time as a young adult running. I decided to join the Navy and become a Naval Aviator. Somehow I passed the tests and all of the flights. I was no rockstar but I got helicopters out of San Diego. Then one dark night in 2002 I was in a helicopter crash in the ocean. The helicopter hit the water, rolled over and sank. We all survived and it was an incredibly freaky experience. One I wouldn't wish on my worst enemy. I went through a grueling investigation and the powers that be decided to give me a second chance to be a pilot. I deployed in November 2002 and played an active role in Operation Iraqi Freedom in early 2003. I flew with body armor, a loaded 9mm pistol, a machine gun hanging off the aircraft and 4 Hellfire missiles- ready to attack at a moments notice. Launch LAMPS! :-P

After my second deployment, I got orders to be an instructor pilot to all of the newly winged helicopter pilots. It was the most rewarding job of my life so far. I loved every minute of instructing. I got divorced and decided that I needed to run a marathon to prove myself to... myself. I had run almost a dozen half marathons. Running kept me sane. No one could tell me I wasn't good enough, fast enough, smart enough, skinny enough and nice enough when it was just me and my body and my shoes. I trained 18 weeks for that marathon. I finished it with severe IT band friction at just over 5 hours. I was so proud of myself for finishing something very few of those close to me thought I could.

But after that marathon I started to notice that my running wasn't like it used to be. I would get winded more easily. I was in grad school, my grandpa was on the decline, I had just gotten divorced and bought a new condo. There were plenty of reasons for me not to be overly concerned. I met Jeff in November 2005. Well, that's not correct. He was a student but I had not flown with him and really didn't know anything about him. I certainly wasn't interested in dating students. But there was something about him that seemed so... normal. We ran a half marathon in Jan 2006 and somehow I did just fine.

I went to Ireland that spring and started noticing how many stairs I walked up. I was having a hard time with all of the stairs. I would joke to my friend Stacey that I needed to take pictures of all those damn stairs. I just felt out of shape. Another year goes by and my running is getting worse and worse. But I was happy running 2-3 miles, so I convinced myself I just needed to run farther to get back into shape.

Jeff got back from deployment in March 2007 and we went skiing at Lake Tahoe. Holy crap. It was the hardest thing I could possibly imagine. Lugging my skis to the lift took every ounce of energy I had. Looking back, I really don't know how I did it. Sheer determination not to be a wuss!

I ran a physical fitness test that spring and barely passed. I knew something was wrong, but I just didn't know what. I brought it up to my flight surgeon mid-summer. We started running tests soon thereafter. Everything came back normal. CT scans, MRIs, v/q scans, breathing tests, you name it. My flight surgeon believed me (thank God), though, and just kept ordering more tests. I think she began to know something BAD was going to come as a result of all the tests. I was finally scheduled for a stress test on the treadmill. I was freaking out b/c I knew that I would pass out if I tried to run on that treadmill! The doc gave me an echo, a bubble test, and then went to go whisper to other people in the corner. No treadmill for me. Yup. I knew it was bad. I heard something called Pulmonary Hypertension.

I went home, googled myself silly and pretty much determined I had the worst kind- Idiopathic Pulmonary Arterial Hypertension. No cure. Not many treatments. Bad prognosis. Awesome. After a right heart catheterization in November 2007, it was confirmed. I told Jeff to walk away while he still could. He could have a normal life, marry someone healthy, have kids, and forget all about my messed up self.

Luckily, Jeff is a much stronger person than I thought. He stayed by me and asked me to marry him a few months later. I don't think he really knew what he was getting into... he is my rock and I am so grateful he's in my life. I planned a wedding, took a trip to Europe, finished my MBA and dealt with my worsening PH symptoms. I was on 2 oral therapies and coumadin. The diuretics came later...

I was depressed. Really depressed. The entire course of my life had been altered. I was PISSED at God. Really, really pissed. I figured that He had to chance to kill me in the helo crash and the war. Some stupid disease would NOT be the end of me. Weak sauce, God, weak sauce. Being mad helped me flight. An endless array of doctors appointments, feeling like crap, dealing with insurance, pharmacies, never-ending bloodwork, etc really wears thin sometimes. I get tired of fighting. I sit on my couch and squeeze my cat til he squeaks and I cry. But those days are less and less as the years go by.

We were married in September 2008. A month later I was out for a walk and passed out in the middle of the street. I woke up with 4 people hovering over me and covered in blood. I took a taxi to the ER. Jeff came running in about 30 minutes later. After having my face stitched back up and even more tests, my doctor came in and said that I was beyond Balboa's capacity and I would have to be solely a patient at UCSD (where I was currently being treated also). What he was saying is that a central IV was my only option to ensure I stayed alive. Freakin' fantastic.

We canceled our honeymoon to Maui and drove to San Francisco instead. Jeff was amazing at figuring out the trolley stops so we could always walk downhill everywhere we went. I fought off my doc who wanted me to have the IV installed yesterday and was able to do some research and found my PEER mentor, the most valuable resource I've had with this disease. She rocks! Had the IV installed and began yet another chapter of my life.

I can't do many of the things that almost everyone takes for granted. I have a special plastic baggie that I tape over my boob so I can shower without getting my line/site wet. My pump is my 24/7 companion. I get out of breath unloading the dryer and have to sit in a rollie chair to clean out the cat litter- I can't bend over and still breathe. I have given up the freedom of running. That's been the hardest part of this whole disease and something I hope and pray I can do again years from now. I look at every slight hill/ incline and every flight of stairs with apprehension that I'll make it to the top without having to stop and catch my breath. Cleaning my house consists of me pushing the vacuum around in spurts when I have enough energy. Jeff has to scrub the showers b/c I simply cannot do it. I can't have children, which for us, has turned out to be more of a blessing than a curse so far. Travel involves bringing another suitcase filled with medical supplies. It's a pain. Flying is horrible and I have to have a wheelchair when I land- I can't make it up the jetway anymore. I can't go swimming, tubing, waterskiing, etc b/c I can't risk getting my site wet and infected.

There are thousands of "can't do's" but there are still thousands of "can do's." Because it takes me so long to push a cart around a grocery store I am always amazed what I find in weird places. I love going for long walks and doing yoga. I can get on the elliptical machine for 30 minutes and feel like I am working out like a healthy person. I just put on my oxygen and climb on the machine. I do machine weights so I am not horribly weak. Not worrying about the little things (dirty house, unloaded dishwasher, clothes in the dryer) has really helped my priorities. Life is short. I do things that make me happy. I have become quite adept at dealing with hospitals, insurance, nurses, and doctors. I have learned a lot about all sorts of diseases other than my own. I notice the changing leaves and a cool breeze. I love snuggling up in a chair with some tea and a good book. I know I’ll have lots of tomorrows but try not to take any todays for granted. My goal is to jog a 5k by the time I’m 40. That gives me 7 years of new therapies and treatments to get me jogging again. I know I can do it. I hate PH. It will not beat me in this game of life.