My Name is Janice Janus, I am 44 years old and my journey is a lifelong one living with and around this dreadful debilitating disease, but living it with Hope and determination.
Honey, I have no easy way of telling you this, but you have severe PH.
My story begins back in 1957 when my great grandmother died from pulmonary hypertension. Then in 1958 my grandfather was diagnosed and died in 1959 of PH at the Mayo Clinic in Ohio. In 1985 my Aunt was diagnosed with PPH [primary pulmonary hypertension] when there was still no medication available and had to undergo a double lung/heart transplant. Then in January of 1997, my mother was diagnosed with PPH as well. Fast forward to 2012 after being misdiagnosed in 2008, and my journey begins.
I didn’t have many symptoms at all. I mean walking 12 miles one month to not being able to walk more than a mile without getting the feeling of blacking out, almost a year later, you know there is something seriously wrong. What is even worse is when your doctor runs tests and doesn’t listen to you and hands you two inhalers and says it is only exercise induced asthma. This went on for almost 4 years.
On May 6, 2012 I was taken to the emergency room because I was having issues with my stomach. They wanted to remove my gall bladder but before doing so they needed to check my heart, do an x-ray and run an echocardiogram and EKG on me. Forty-five mins later the doctor came back in the room and said, “Honey, I have no easy way of telling you this, but you have severe PH.” I actually laughed and told him he was wrong because I was familiar with PH and I had no symptoms of the disease, DENIAL mode. Denial is an ugly thing, as is fear. The diagnosis hit home when I was told May 24, 2012 that my pressures are 108, 19 for my wedge and 7 for my back flow, which is high, so we need to bring those down.
So begins my journey with living PAH alongside my mother. Already aware of what this disease is, and what medications were out there, I have to be thankful for being in a family that has been able to provide me the knowledge and support of living with PH.
Thanks to PHA, I was really up to date on the medications available, and since I am familiar with my mom’s condition, I was adamant to begin oral medication. I couldn’t fathom stopping my active life by bowing down to limiting my lifestyle to living with a crutch by administering Sub Q Remodulin or being on IV treatment. If it isn’t oral medication, I really don’t want treatment. So we discussed it in length and together as a team we chose a Calcium Channel Blocker (CCB) and tadalafil/Adcirca.
The “NEW NORMAL” is going to be a tough one to abide by, but it is attainable. I was already in “training” with the 2000 mg-a-day sodium intake because of my mother’s diagnosis and I was the cook in the family. The hardest was no more working; I was a construction Manager and did a ton of indoor/outdoor walking and having to lift heavy articles. Limiting my activity level until we got this disease living inside me under control was the hardest by far dealing with this disease. I didn’t allow that to deter me though.
My limitations were my downfall, in all seriousness. I had no limitations before I was diagnosed, to having a 5-10 pound lifting restriction. I was lifting near 50 pounds a day no problems, why the change? I was doing more damage to my heart than good. You can’t see the damage, but it is there and lifting and straining makes more stress on the heart. No excessive bending or squatting, no running, no traveling. Oh that was the worst thing I could hear him tell me. My extended family lives in Chicago, we go there at least three times a year or more. No way am I not traveling. Yes way, you are not traveling, because your health is more important, right? Life Changing I tell you! But listen to your doctor, he knows what he is talking about.
I started my first pathway of Adcirca in August of 2012, Seven months later my pressures showed signs of decrease, but not a whole lot. So we discussed adding a second pathway to the mix. Finally in 2014, three days before our First Annual Phenomenal Hope 5K Run/Walk here in Pittsburgh, we added macitentan/Opsumit to the regime. Some of my restrictions were removed, not a lot, but I can now travel again, as long as I get out and walk around every so many miles to get circulation going.
On April 13, 2014 I walked the 5K…I didn’t walk the entire thing, I ended up at a huge rock and sat because I was too tired to continue walking. If I didn’t sit, I wouldn’t make it back to the starting point. So I sat and waited for my sister that walked with me. My niece, met us at the finish line, and walked with us as I came in dead last that year, but I finished.
Am I scared? YES! Will I allow it to be my downfall? NO.
To this day I am still pretty active. We do not know what my pressures are, as when I had my echo done in 2015 we couldn’t find a high number. My 6 minute walk tests are off the charts. Starting at a mere 12 laps at diagnosis in 2012, as of February 22, 2016 I am at 27 laps. Does it mean I will continue to be this strong? NO, but I am determined to win this phight, for me and for my mom who lost hers in 2013. Do I still have PH? YES! Do I continue to live life to the fullest? YES! I continue to do activities like hiking, not mountains, but flat terrain and small little hills, but at a pace that will not hurt me. I love gardening, and my all-time favorite is swimming. When I clean, I dance while I vacuum and dust. I sing when I do dishes. Am I scared? YES! Will I allow it to be my downfall? NO.
I’m proud to say this year not only am I walking my 3rd time in our 3rd Annual PHenomenal Hope 5k Run/Walk here in Pittsburgh, I am helping with the activities by advocating to others and getting their support while bringing awareness. I will do all that I can to help find a cure for this disease, and help others and teach them all that I possibly can, because it is “Life changing, in more ways than one.”
Pulmonary hypertension is “defined” as a debilitating terminal illness with no cure. What it fails to tell people is that it is “LIFE CHANGING.” It literally sucks the breath right out of a person. We do not look sick, we may not act sick, but we are truly dying inside, people do not get that. They think that because we look good on the outside we are sugar coating the disease, they do not see the inside, and have a hard time seeing the big picture because they are not walking in our shoes. They do not see our daily struggles, when we have a hard time walking a flight of stairs, or have a hard time getting out of bed because our body is so tired from this disease. That is why we phight so hard to bring about awareness.
There is no guarantee in life, no matter if you have a disease or live a healthy life. What matters is you listen to yourself and live life to the fullest. Have faith in yourself to bring about the changes needed to live a fulfilling life. Listen to your doctor, but most important to your body. This disease is, yes once again, LIFE CHANGING, but it doesn’t have to end because we got the diagnosis. It is a “NEW BEGINNING” of a new life and a new lifestyle. Embrace it full on, and own it, define it, do not let it define you, because you are the one in control.