Pulmonary Hypertension Lament: ‘It Never Rains, But it Pours’

Have you heard someone say “It never rains, but it pours”? That expression seems to describe the state of my life recently. I have Idiopathic Pulmonary Arterial Hypertension, but I also have a host of other symptoms that come and go.

The past several weeks have really tested me, and honestly, my spirit is starting to break. Sometimes I wonder how much one person and their family has to go through. I think about my friends who developed pulmonary hypertension after surviving cancer and the grueling treatments. I think about all the different scenarios we have in terms of our diagnosis. I try to stay positive, but it has been harder to do this month, this week and today.

Sometimes I feel like I’ve been knocked down too many times to try to get up again. I am tired and I am spent. I’d be lying if I said I didn’t miss my life, my health and body’s amazing ability to breathe and move before pulmonary hypertension crept into my life. I see other people my age and, of course, I feel a pang of jealously. Here I am green-eyed over other women’s big, beautiful and healthy lungs. How things have changed.

Upon diagnosis I was very unwell. I don’t believe I would have survived much longer if I had not been diagnosed when I was. Although I am still “sick,” I was very sick when I was diagnosed. It felt like I was beyond repair. Slowly, but surely, things did improve, little by little. It is not enough, but because of where I was before, I appreciate where I am now. I am thankful, I am grateful. And, although I still wish I was a little better, I am content with where I am.

Dreams ‘downsized’

I still have moments where I long for what I had. I still miss what I thought I was supposed to have in life. I’ve always longed for an uncomplicated and simple life. There is nothing simple or easy about living with pulmonary hypertension.

The other day my boyfriend mentioned he didn’t think we would be able to afford the house I would want and need to live in. Our dreams of living in an older home have been replaced by living in a newer bungalow. I also know that when he says “We can’t afford it,” that the problem is me. I can’t afford it. My contribution to a relationship has certainly dwindled, and that’s hard on my confidence.

My past month has been filled with doctors’ visits, tests, a halter monitor that has left me with itchy blisters, a couple of calls to my new PH specialist and an ER visit. I hate referring to myself as a “patient,” but the past month has reminded me that I am trying to balance living life on top of living with a very serious disease.

Although I try to handle all of this gracefully, I think sometimes you have to let yourself be vulnerable in order to be strong. I wanted to write this column as a reminder that we all face our own challenges and struggles as we face pulmonary hypertension. I don’t often write about my challenges of living with pulmonary hypertension in this way, but I wanted to share this because I know I am not the only one who struggles.

Life goes in spurts, and sometimes so do my painful symptoms. Thankfully, my symptoms have lessened day by day, and I hope to be back to my “new normal” soon. Although it is not ideal, I’ve learned to try to be content with what I have. In the meantime, I will be here waiting for the storm to pass and hope that the sun comes out again soon.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.