Why Pulmonary Hypertension Isn’t an Invisible Illness to Me

Why Pulmonary Hypertension Isn’t an Invisible Illness to Me

In Life with PH
Pulmonary hypertension might be an invisible illness, but it isn’t invisible to me. I notice pulmonary hypertension first thing when I wake up in the morning. I roll over, often feeling like a fish tangled in wire, and gingerly try to avoiding stepping on my oxygen cord as I try to get out of bed.

I am reminded of how serious my illness is by the time I finish my breakfast. It is at this time that I gobble down pills prescribed to me to help manage my pulmonary hypertension. It is a daily reminder that I am dependent on medication for the rest of my life. Although these pills won’t cure me, they help slow down the process of my body killing itself.

Sometimes I will have a bad-side-effect day from the medications I take. This can range in uncontrollable bowel problems to crippling headaches behind my eyes. I feel lucky that I don’t experience these symptoms every day, but they are difficult to manage on the days they do happen. I’ve had to cancel trips, plans and work all because of side effects ― often retreating to bed or the bathroom.

I feel frustrated by the changes in my body at least once a day. Even after three-and-a-half years, I still forget about the “new limitations” that have been put in place by pulmonary hypertension. The other day, I had to take my dog outside during a storm. I tried to run back to the house, and immediately felt a sense of heartache.

It felt as if there was a plastic bag over my head, as I desperately tried to gasp for air. I had forgotten I can’t even run from the front yard to my front door. I feel this sense of disappointment throughout the day while trying to do various activities, from walking up a hill, to showering, to putting on pants, to going up a flight of stairs.

Because pulmonary hypertension isn’t always visible, I get judgmental stares on days when I use an accessible parking pass. I try to avoid using it, but sometimes I have no other choice, if I am having a “bad PH day,” or can’t find a spot close to a door. I know people see me and assume that I must be lazy or feel entitled.

It can be difficult explaining how serious a disease is to someone who can’t see it. I don’t always look like someone who has been told they had five years to live because their diagnosis was so severe. I’ve had family claim I am not sick, mostly because of how I look, and because they never have bothered to see me after my diagnosis, or ask me questions about my life now.

Even though my disease is invisible, I feel how it isolates me from friends and family. Sometimes, I have to leave social events because of smoke, or if someone else is sick. It can be hard to really go anywhere unexpected, or meet new people, because of how dangerous something like the common cold could be for me. I’ve also watched a lot of people in my life become fair-weather friends after my diagnosis.

Every day, I am reminded of what it means to live with pulmonary hypertension, and the physical limitations it has placed on my body. Some days are better than others, but living with a progressive and incurable heart-lung disease is still a heavy burden.

Even if you can’t see it, I know what it feels like to live with pulmonary hypertension. I’ve felt it every single day for the past three-and-a-half years.

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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.

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10 comments

  1. Debbie Jarvis says:

    I am SO glad you wrote this, as I thought I was the only one that felt this way. This may be awful to discuss on here, but I did not know why I had so many days that I had to just more or less spend my day in the bathroom. SO many plans have been ruined over that issue and me being scared to leave the house. My illness hit me so fast, I did not have time to adjust, having to stop working almost killed me. SO many people do not understand how you feel. I have lost so many friends, as I am no longer useful to them. I do well on some days to do for my self, so my old ways of always being there to help others are over, and I hate that It has however shown me just how much of a friend they really were. At night I make all these plans in my mind as to what all I am going to try to do in my house the next day, only to wake up so tired that I can hardly make it from the bedroom to the kitchen to take a hand full of pills to help me live longer, but not ever cure me. When I am asked how I fell, I just answer I am ‘fine’, as I know they actually could care less and there is no reason for letting them know how I really feel. I am thankful that I am still alive, but I sure do miss my old life. I was not told by the doctors what all to expect from PHA. I feel guilty when doing my house work, I do a little then have to rest and then start again.It takes me forever to clean. Then friends will come in and point out spots that I need to clean, as until I got sick, I kept a spotless house and a beautiful yard. This is just SO VERY hard for me to adjust to…. my life will never be the same, but I am happy to be alive!!!

  2. delores potter says:

    The magnitude of what I’m facing down the road scares me. I was just diagnosed with COPD (not a smoker) and pulmonary hypertension, and as of yet I have no symptoms. I had a routine Echo for an upcoming surgery for atrial fibrillation, and that’s when all the dominoes began to fall. So far, I don’t have any symptoms, but I know they are coming. How does someone who never smoked get COPD, along with pulmonary hypertension, and is there a link? My life doesn’t look so good going forward, but I’m going to do all I can to keep this disease from taking me.

    • Amy says:

      What part of the country are you in? Arizona ? California or Nevada ? These three states have huge numbers of this supposedly rare disease called IPAH. You have every right to want to know what caused you to get a disease that was previously limited to smokers. I will probably spit milk out of my nose if you reply that you too are in Arizona . PH is so common here and no one really cares to ask WHY??????????? Hint: the sky

      • dee potter says:

        Nope, I’m in Idaho. I’m now on Opsumit, which doesn’t seem to be helping. he symptoms I didn’t have before…well they are here, and I am sick. Tomorrow I have an appointment at a new pulmonology clinic, and I’m praying there is an answer to not feeling so badly. I keep hoping for better days, but so far I have not seen any. I refuse to quit. There is nothing that will ever cure this insidious disease, but there has to be a combo of something to help people feel better.

  3. Patricia Duarte says:

    It is amazing how most of our stories are the same. I am lucky that I worked at a job where I could retire early, have great health insurance and was retired before I was diagnosed.

    But I still miss my old, active life. Because I am on such a high liter flow of O2, my outings are limited to how long the batteries last in my portable O2 concentrator.

    I hate that my friends can’t seem to remember that I am no longer the energized bunny, that I need a day (or 2) of rest & lasix after a day of out & about.

    The other thing that I miss is just being able to go out to eat or going to a friend’s for dinner. I am so sensitive to sodium, that I suffer for days with fluid pretension. Thank goodness I was always a good cook!

  4. Charlotte says:

    Do not limit yourself to 5 years!!! I have had this damned disease for almost 4 years. I feel the same as you and me talkya nd emotionally this disease is a bitch. DO NOT let it define you… grab hold of one thing that makes you happy and grow from there. If you ever need someone to write to and talk, I’d be more than happy to be there for you!!

  5. Dixie says:

    I hate that others have experienced the same emotions I have from friends and family. It makes one feel like were not worth spending time on, similar to a throw away package. After battling this illness for years, and all that goes with it including 24/7 oxygen, pills galore, and now a pump with a tubing and a needle…,gluten free, no baths or showering due to pump, I have gotten very selfish with who I want to spend my time with or what I want to spend my time on. Never have I ever focused on me. I encourage others to look at this as this as my time. You cannot do everything, but you can do something. Do not let what you cannot do interfere with what you can do.

  6. Andrea Rice says:

    Cardiologist seen thinks I could have had PH 4 almost 20 years because it’s hard 2 pinpoint when it actually arrived. Inherited blood clots in my right lung without occurring in the legs was uncommon to say the least. I am reminded every day of this illness because of the swelling that is consistent with not only my feet, toes, ankles, and legs are super, super big and I cannot fit into my shoes anymore! So, I wear my son’s extra wide slip on shoes his awesome idea and wonder what will happen if I one day can’t fit into these anymore. I cannot even imagine standing down aisles of shoes at stores trying on men’s extra wide shoes without feeling super goofy!! Didn’t have any issues when my son was still living with mom, but now he’s moved out and I am by myself. Writing this actually made me laugh, so this is good 4 me, 2 laugh instead of feeling discouraged. Thanks 4 listening………

    • Casey says:

      Thank you, thank you, thank you! You have opened my eyes to the seriousness of pulmonary illnesses and where I could be headed if I do not adhere to the medication schedule given by my doctors. I have designed a form for each month to daily check off exacting when I take a medication, exercise, etc. It is easy to slip when living alone but by checking off items on the chart I am keeping accountable to myself.

  7. Valerie Eads says:

    Wow. That read just as i might have written my saga. Verbatim. Well, apparently I’m not alone in discouragement. I wish that I were. I would hope that no other person is going through this solo. I wouldn’t want to ever become a burden on anyone but wasn’t given the opportunity to swallow my pride and say, “OmG, please help.” There is no one to hear me. “Her and all her problems…” the latter is synonymous for my oxygen tank. I am fortunate that my neighbor was nice enough to call 911 when I had a heart attack after taking out my trash. Yes, for me and others with pah, because of this condition, a thirty foot walk to the dumpster carrying fifteen pounds of rubbage can definitely lead to a heart attack. Thank you, neighbor. I will quit making fun of you because you are a cop caller. This was necessary.

    Im not invited because I can’t run around town getting in and out of car, jaunt to and fro shops for fun, buy anything much over ten pounds. And I can’t get in the boat to fish? Please quit treating me as if I’m just being dramatic. I’m sorry I can’t change your tire or my oil any longer. I hate to hand you my money and ask you to grab me a slurpee because I can’t breath. Why can’t I be recognized for being optimistic and strong willed? Having survived this long, this Ill, after losing the support and companionship of my parents, my son, my friends. Go me. Are you thinking I’m just gonna quit? I’ve never given up on me. Even though you have.

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