After being diagnosed and treated for Pulmonary Hypertension (PH) for over 5 years now, I feel great and I can finally say I feel the way I did before I starting having symptoms. To say that is a very large hurdle for me. I have been across the "Pain Chart" spectrum over the years (many days being towards the sad/angry face). Some of the pain has been caused by the PH and some caused by the side effects of the drugs that I take to treat my PH.
When I was first diagnosed, I thought I was just out of shape and gaining weight. I was tired 24/7 and all I wanted to do was sleep, sleep, sleep! I was out of breath all the time and eventually it was even difficult to walk more than 10 feet to answer the door, go to the restroom, or even crawl into bed.
Once diagnosed, I was put on Flolan, Revatio, Digoxin, and Lasix in the hospital. The Flolan during the first week was terrible. It felt like I was burning up inside, I was hot all the time, I was achy beyond belief and was so weak I couldn't walk anywhere. Thank God for Morphine. In week two of treatment, I was transitioned to Remodulin. My hot flashes seemed to die off and it seemed like there might be light at the end of the tunnel. I was now having side effects from the Remodulin, and they were unique on their own. I had a shooting pain in my jaw every time I took my first bite of eating something. I was up walking around but after awhile, my shins and feet would burn like crazy. I was red as a tomato from all of the flushing and I had constant diarrhea. I had a crazy headache from the Revatio that always lingered around. The Lasix was making my potassium low and I had zero energy. At this point, I was praying that this wouldn't be the way my life was going to be forever.
After I got stronger over the next few weeks, I went home but I still was having the same side effects as I was having above but was starting to gain some tolerance to them. I went home after 4 weeks of treatment at UCLA Medical Center in Los Angeles, California. After 2 weeks of resting at home and what I call getting my "bearings" back, I went to work and started my new full time job. The first weeks there were hard, but I needed the health insurance to cover all my new medications, surgeries, and treatments. I had flair ups of gout from the Lasix. I was bruised from all the blood tests and line placements. A lot of people asked if I should even be at work.
Five years later, I am still at the same company but instead of a sit down job as a customer service representative, I am in a highly active sales and market researcher position. I travel to numerous states a year, and I love going shopping on a weekly basis to look for new, hot, trendy products our company should research in. I pack product and attend trade shows multiple times a year and you can often find me running around the office trying to meet strict deadlines.
Nowadays, if I wear the right clothing, you can't see my PICC line that runs from my left arm to my pump in my left pocket. I still feel sluggish some days, and I still have every darn symptom that I had above. I still have a nice glow (which everyone tends to think I got sunburned, even in the dead of winter) and I still hate Lasix with a passion. I have learned to take it on the days that I don't have meetings, traveling, or shopping to do. The headaches and the flu like symptoms such as a stuffy nose, burning eyes, and post-nasal drip, all stopped once I stopped taking the Revatio. The shin pain, first-bite syndrome, and other Remodulin side effects come and go as they please (they often visit when I increase my dosage). I have tamed the side effects with the usage of Tramadol and Immodium AD. Overall, life seems good.
Now when people ask about my PICC, such as, "What is that for?", I explain that I have PH and I have it for my medications. Often people don't realize that it runs 24/7 until I explain how the drug works. I always tell them it is a lifestyle that I have just gotten used. Then they always say, "But you don't look sick, you look awesome, you just look normal". In someways that is a blessing and a curse. Sometimes people just don't understand that I am just too tired to do stuff. Sometimes people just don't understand that I don't feel well enough to even go to work in the morning. But I make it happen. I drag myself up, crawl my way into the office and make it happen. I think having my job and forcing myself to get up and go, having a commitment to meet and to be held accountable for something, has forced me to live a more "normal" life. It pushes me not to think about "why me?" but to think of ways of saving up my paycheck to go on my next excursion or even buying property. I don't just sit around and watch TV day after day. I work to earn my money, when I can easily go on disability. And I think this motivation to go to work, to be held accountable for something is what has actually made me healthier. I don't dwell on my illness but focus on other things that make me happy, like having a purpose in this world. I feel great and I believe I look physically better than I did 5 years ago. Even though I have PH, I believe all of my patience, reconditioning, and determination is what has gotten me to this point in my treatment and caused many to respond by saying, "But you don't look sick...".
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