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    Posted November 19, 2012 by
    Marietta, Ohio

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    Pulmonary Hypertension; The Caregivers Choice

    The epicenter of any explosion is normally a wasteland. At the center, everything is destroyed, there is nothing left of what was; the damage is total. Just outside of the epicenter, however, the destruction can be severe, but there may be something left to build on; there are reminders of what was before the bomb dropped. That’s why sometimes being just outside of the epicenter is the worst place to be; everything is in ruins. There is just enough left of what life used to be like that it can be more devastating than being at ground zero. That’s why the life of a caregiver, a family member or friend of a chronic patient, can be just as rough as the life of the patient.

    With Pulmonary Hypertension, as with any chronic disorder, the life of the caregiver often revolves around the life of their loved one. Family vacations become what is easiest for us to do, not necessarily what everyone wants to do. Daily chores can be doubled, as the caregiver is doing for themselves as well as for us, and many times the strain of income restrictions can take its toll. PH caregivers are no different in what they do or how they care for their loved ones, but they are often tasked with providing care to a patient that on the surface has no physical anomalies. I know that when I am in a public place, if I need help up stairs, or need assistance sitting and standing; if something is dropped, my caregiver and I will get funny glances from any onlookers. Many people may wonder why my beautiful partner, Karen, or my father, David, are jumping to help me pick up something I have dropped, or why they are helping a 6-foot, 185-pound, and otherwise healthy-looking person get to a seat or up the steps. Many people who see medical equipment; wheelchairs, oxygen tanks, walkers, and the like, understand who the caregiver is and why they are doing what they do. In the case of many PH patients and their caregivers, it is not that obvious.

    I don’t need an oxygen tank, yet, and no hoses, cords, or implanted IVs are evident if you are looking at me. For many Pulmonary Hypertension patients, the story is the same. We don’t always have obvious signs. People see a normal person seemingly doting on or jumping at the every need of another healthy individual. What the common bystander probably doesn’t understand is that bending over can cause this healthy person to pass out; that going up stairs can be as taxing on us as running a mile is for you. We look healthy, but things are not always as they seem. For this reason, the life of a PH caregiver can be difficult. On a good day, a PH patient may be as close to “normal” as we can be. We can hit the stairs all right, we feel good, and we want to move. This provides our caregivers a glimpse of what life used to be. They see a life like everyone else has, but their days of normalcy are generally fleeting, and our “new normal” can quickly reappear. The PH caregiver can be easily reminded of what life was like, only to have it taken away again. They are reminded of what used to be; and many times that can be just as bad as having PH.

    I know my caregivers, Karen and David, have walked through hell for me. When presented with a chance to walk away and return to a “normal life” neither budged, and both live this life with an energy even I cannot fathom. Even when people wonder why Karen needs to help me up the stairs, or steadies me if I get light-headed at the store; when people stare at my father, David, as he dives for something I have dropped, neither blinks. They see the good days, they see the bad days. They get a taste of how life used to be, knowing that tomorrow may be even worse than “normal.” They choose to live with PH, where I have no choice. They choose to live with the odd looks that come with helping a so-called “healthy” person up or down the stairs, they choose to take on any criticism for it. The stress on a PH caregiver can be extreme, just as it is with being a caregiver for many disorders; but oftentimes stress for the PH caregiver can come from unexpected places. I am thankful for my PH caregivers, and it is why I feel the need to make people more aware of Pulmonary Hypertension. Just because someone “looks” healthy does not mean that they are. With proper awareness of this disease, we can lessen some of the stress on these amazing people who choose to make PH a part of their lives through caring for their loved ones.

    I know my life as I knew it, is no more. I am the epicenter of the explosion. Everything has changed, everything has to change.The caregiver is the next closest person to ground zero for this blast. The caregiver lives with the devastation of this disease, but they can still see how life used to be. They see the good days that are reminders of how life was, only to be left with the reality of how life is now. A motivating force for them is hope, hope that one day there may be a return to what was, but they also know that when a patient has a good day, that a bad day will normally follow. For every up there is a down. I am rewriting my life because of Pulmonary Hypertension.
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