The Worst Advice You Can Give to a Pulmonary Hypertension Patient

The Worst Advice You Can Give to a Pulmonary Hypertension Patient

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I’ve spoken previously about the day that I was diagnosed with pulmonary hypertension. There are a few moments that stick out from that day that will probably stay engraved in my mind for eternity. When I was first diagnosed, the doctor promptly gave me a life expectancy. It couldn’t have come at a worse time. I was 25 and just starting my career after working less than ideal jobs since the age of 15. I was obviously devastated to hear that my life was ending during a time it felt like it was just beginning. It felt like someone crumpled up everything I worked so hard for and threw it in the trash. As I started to cry my doctor said, “Any one of us could die at any time. I could die in a car accident.” This was the first time I heard this expression, but sadly, it wasn’t the last time.

As the days, weeks, months, and even two years have dragged on, numerous people have told me that anyone could die at any point, that the future is promised to no one. While I am aware of everyone’s mortality, living with a fatal illness is a very different experience than the advice I have been given. I know that the people who have said that “anyone could die at any moment” and “the future is promised to no one” are attempting to comfort me. However, these pieces of advice are often coming from a very privileged source. The doctors who have told me this are able to work full days and have a family. The people my age who have told me this are purchasing their first homes and traveling.

The advice that “the future is promised to no one” is often said in an attempt to equalize my situation with the rest of the population. Unfortunately, I am not like the majority of the population. I had about a one in a million chance of developing idiopathic pulmonary hypertension. Because the disease is considered rare, Canada does not have access to less invasive medications that have been available on the market for nearly a decade. Because PH is so rare, medications are very expensive, meaning that new medications are not always introduced in Canada, or are not approved for funding.

Pulmonary hypertension causes damage to the heart and lungs, eventually leading to organ failure and death. It is a progressive disease that leaves many people breathless and disabled. I myself am disabled because of pulmonary hypertension, and am oxygen-dependent for certain activities. I was on oxygen 24/7 for over a year after diagnosis. Knowing that PH is progressive, and that I might be that sick again, is very frightening.

While death is promised to us all, there is a difference between living with a fatal illness and living without one. Although I try my best to live in the moment, there is often a dark cloud hanging over me. I worry about what will happen to me. I worry about the slow progression of the disease leading to further disability and death. Life is filled with difficulties and tragedies. However, not everyone will understand the feeling of the dark cloud that living with pulmonary hypertension can put over your life. Able-bodied people who say that “everybody dies” in an attempt to over-comfort are forgetting one of the scariest things of living with a fatal disease: the progression.

In some ways, fatal illnesses are almost romanticized by popular culture. There are so many movies who have used this plot to write a love story. While I am very lucky to have someone who has stood by me through all of this, I know that having a fatal illness is not a selling point. It can create a lot of chaos and complications. My life revolves around medication, doctors’ appointments, tests, restrictions, limitations, disability, and oxygen. I know that not everyone is as lucky to have the kind of love I have in my life. Life-threatening diseases are scary, and sometimes they chase people out of our lives.

I often feel like I am living a fine line between quality and quantity in my life because I choose to do what I can while I can still do it. While all of us will someday die, not all of us will have to live with the burden of having a fatal illness, especially as a young adult.

What’s the worst piece of advice someone has given you about living with pulmonary hypertension?

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 blog article are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to the disease.

15 comments

  1. JM says:

    My heart goes out to you. I also have this disease but the only saving grace is I got it at 71 years old. In a way being so young gives you a much better chance of living long enough for them to come up with treatments that will lead to a cure. I have two friends that have had this disease for 10 years or more and are still doing ok. Medical science is advancing at such a rapid pace I feel there will be great improvements to our treatment. Your youth will also keep your body very strong to cope with the ups and downs. I would encourage you to live your life as fully as you can, not make this the focus of everyday, and to realize you do have time on your side. I wish you the very best.
    Regards, janice

  2. Andrea Rice says:

    So glad 2 read about how another doesn’t understand another with this illness. Recently, I stopped seeing my therapist. I tried unsuccessfully 2 drive myself 2 make it 2 a scheduled appointment but extreme exhaustion, tiredness and feeling drained stopped me dead in my tracks. I couldn’t even get out of my apartment. Instead, I find a message from her saying that if I’m late and she’s not there, 4 me 2 call and she will then come outside. Then she leaves me a text message that suggests I go out daily and start the car so the battery doesn’t die. I guess she skipped the part with extreme exhaustion, tiredness and feeling drained eluded her. While the car battery is important if I can’t get out of my apartment the chances of me making it 2 the car are slim. Sometimes I hate educated people because they just don’t get it. So, I texted her back letting her know that she shouldn’t look 4 me 2 be on her schedule anytime soon. 2 keep repeating myself over and over is getting repetitive and old. Having unrealistic expectations with this chronic illness they just don’t understand it. Even if she reads articles about it, she’ll still insist I can physically drive my car over 2 see her 4 an appointment. And between her and my son they wonder why I’m reclusive. Peace. Quiet. No engagement from others I have no interest 2 engage in. I’m anti-social and I love it!

    But, recently my son moved out months ago and between him and therapist they really believed I could manage on my own. Until I fell twice at home and don’t feel safe walking around in public alone, I have hired a caregiver service for a companion 2 accompany me on doctor appointments. To both my son and therapist they are surprised by this and although it has taken both of them awhile 2 admit they assumed I would be fine instead of making sure, instead of my son complaining how expensive the service is (they charge by the hour) he accepts and pays 4 it while I’m still waiting 4 disability 2 arrive so I have my own income. What I want is a wheelchair instead of a cane or a walker because I could get around oh so much faster, walking takes forever or so it seems. Whenever my son challenges what he thinks I can do on my own I remind him of my lung function at 29% and my oxygen level at 40% and ask him 2 play devil’s advocate 4 him to figure out with these numbers what he thinks his mom can actually do. However, the real issue is the fact that my son can’t accept his mom having this chronic illness that has no cure just treatments that enhance a person’s life. The thought of me exiting planet earth doesn’t sit well with him, he wants me 2 be here when he’s in his 40’s and be grandma 2 his children he plans 2 adopt. The real issue isn’t death, death is peaceful, the issue is living, day to day with this illness. I made it 2 middle age, so if I were 2 go at least I have lived part of my life, not exiting at a much younger age. So, my son has this great idea 4 me 2 live with him full-time where he lives. The biggest challenge is a young son choosing 2 deal with an ill parent at his age is similar 2 climbing Mt. Everest. But, my son is an optimist and doesn’t give up. Nothing is as it seems in society with which we all live, I always knew that adult children took care of their ill parents when they were much older than the age of my son. But this chronic illness pulmonary hypertension creeps up on folks when we least expect it, doesn’t discriminate against the age of a person and once it’s here there’s no going back 2 the way life was. It’s here 2 stay so make the best of each and every day. The 1 biggest change 4 me is 2 keep a voice repeating in my head 2 walk slow, I have a tendency 2 walk fast and this comes from living in Chicago over 30 years and getting into the walk fast, talk fast, drive fast, way of life up there. When I listen 2 the voice inside my head and do walk slow I find I don’t get so short winded.

    Last but not least, many folks that have it will die from it or from complications from other things. When I was initially diagnosed the cardiologist had this shock look on his face because he couldn’t believe I had been out walking around for how many years not diagnosed. The blood pressure in my lungs was so high it was estimated I should have had a stroke, but I didn’t have an enlarged heart instead. I was also told the average span a person lives with this illness is 20 years and while unhappy with this number, it’s best 4 me to live life in the moment instead of in the future when one can’t comment on what the future will bring. Most of us are always looking beyond where we are at life, wondering about our retirement, instead of focusing on life right in front of our faces. I’m alive now and each and every day I’m here I acknowledge and appreciate it. And I make it a point not 2 listen 2 other folks that have advice 2 give that may not be in my best interest at all. When I’m tired, I rest. When I have energy I engage in something constructive or creative. The shortness of breath will always be here when I need 2 get from point A to point B walking. If I don’t already know my limitations then I will suffer until I make amends.

    Thanks 4 listening!! Sorry it’s so long, I do love 2 put my thoughts into writing!!

    • Roxanne Barger says:

      Thank you for this article. I was diagnosed a year ago and I still don’t understand what is happening to me. My experience has had many similarities to what you describe so I’m grateful to know this is all not the work of my imagination. Thanks again.

  3. Vilma de Salazar says:

    People usually tell … you look great, keep it up… as long as you are not using the oxygen.

    I´ve learned I don´t need to express anyone If I am tired or if I feel bad, because nobody will get it, even happens with own family, so now whenever anyone ask me, no matter how I feel, I always respond the same … “I’m fine” with a smile. This helps to change conversation and avoid so many questions. Living with a chronic and progressive illness is difficult, but I have learned to enjoy the day and not think so much about the disease, I am disciplined and I have changed some habits that have made me feel more relaxed and manage my condition better. I always keep busy working and doing my favorite hobbies.

    Fortunately, social security gives me my medications regularly and I still work full time. There are days when I am tired and I stay at home office with permission from my employers, as long as I fulfill my responsibilities and that is already a great blessing.

    The fear of tomorrow has been removed and I live today.

  4. Debra K Novoryta says:

    OMG, I am relieved to read the posts above. I am 62 and was dx’d two years ago with PH, then PAH. I was dx’d with R.A. in 2011 which the doctors’ felt was due to extreme stress and anxiety from my Principal. I worked for my high school for 20 years but suddenly developed a tenuous relationship with our new leader.

    I do not have a family history of RA. I was treated well with Enbrel but suddenly couldn’t walk without breathing heavily. I was dx’d with PH and a year ago, PAH. I am now on 24/7 oxygen, multitudes of meds., limited to activities. My husband just retired and feels like I’m not TRYING hard enough to do things. My Pulmonologist says I should start Rehab. How can I if I loose my breath room to room? Yikes — help?

    • Debra A Watkins says:

      My son was just diagnosed with PAH. He is 44. My heart goes out to you—especially since your husband feels like you are not trying. Does he really understand this disease? God bless you and help you each day, and may he send people that will encourage and uplift your spirit when you are downcast.

  5. Jim says:

    I was recently diagnosed with PH following 20 months of breathlessness, and nearly a dozen visits to doctors before being referred to a respiratory specialist. I felt relieved after the cardiac catheterization established what it was (is), however I’m at a place now where I’m not sure I have the energy to continue.
    I have 3 other comorbidities – Insulin Dependant T1D all my life, Multi-focal Motor Neuropathy 30 years, and Systemic Lupus for past 10 years. All of those are well controlled and didn’t prevent me from building a vibrant business.
    The PH has literally sucked the life out of me.
    I am fortunate for all the experiences and friends I made over the years.

  6. Patty B says:

    My husband was diagnosed with ph four years ago, stemming from interstitial lung disease from a job injury in his 20’s. Living with the ild was pretty simple, oxygen once in a while, inhaler once in a while. The ph diagnoses was a blessing, in a way. about a year before being diagnosed, he began to faint and he got pretty banged up doing so. Then it progressed into heart palps, trouble breathing, becoming breathless at the smallest of daily chores like putting on socks. All the while fainting, banging his head, looking like Rocky Marciano. Luckily, he always ate and eats healthily, never smoked, is active. He has an amazing,positive outlook. He volunteers, he mentors at a local school. Veletri, Ascirca and his doctors have saved his life. What started as a terrifying, helpless feeling has turned into hope that maybe this diseasewill reverse itself to give us a long future ahead, but the management, and my husband’s desire to live, has helped us and the entire family cope.

  7. Lois says:

    Hi, I will first pray for you to have a blessed future ahead. I don’t have PH , but I have went through a devastating trial in my life when I found out I had to have a heart transplant at a very young age. After 30 years I am still doing well and hanging in there. God is Great. Put your trust in him , my friend. On lots of meds, but what the heak!! I AM ALIVE. I am a fighter, I wont give up. Don’t you.

  8. Lois says:

    Hi, please dont give up. I am praying for you. I went through a devastating trial myself when the doctors told me I had to have a heart transplant back in 1990. I was very young. It was shocking. I am doing well today, it is 30 years later. Dont give up. God is GREAT. I know life sometimes seems to be unfair in our eyes, but our Lord has a plan for each one of us. I am on a lot of meds , but what the heak, I am alive an giving true testimony that miracles happen. Take care and my prayers are with you.

    • Pamela says:

      Bless you Lois🙏 I will pray for you and all sufferers of this scary disease. My husband is 75 years old and was diagnosed two days ago, we are floundering in the dark about the consequences and long-term affects. The more we read about the disease the more depressed we become which I guess is only natural. He will be on oxygen permanently it is being delivered to our home today and he will be discharged from hospital today. We are both practising Christians and without our faith in God, in whom we trust with our lives and our souls we would not cope, but His love will give us the strength we will need to live each day to the fullest, until he calls us home. Neither of us are afraid to die we know where our spirits will go ” in my father’s house there are many rooms, I go now to prepare a place for you …” thank you and God bless you.

  9. Deena Houle says:

    I’m glad I came across this forum. My mom was diagnosed with PAH 6 years ago. We have all been very active in her care and we are all part of her team…but the unknown is so scary. People tell me all the time that I’m lucky I get to have this time with her but I don’t feel lucky. I don’t know what to expect. Every time she is put in the cardiac ICU with AFIB and CHF, I don’t know if it will be the last time. Since August 2019, she has been hospitalized 6 times. This last time, just 2 weeks ago was different. Now the VNA is setting up specialized equipment so my mom doesn’t faint while showering or even putting her shoes on. She is on fulltime O2 and has become accustomed to that but she is always tired now. The fluid around her heart and lungs will not go away and her heart goes into AFID constantly. I wish I had a timeline and could know when things are close. My mom talks about it. She has had us sit down and complete her last wishes with her. She wants as much family time as possible which we all make sure happens…but the unknown is scary. I lost my dad when I was 10 to leukemia. My mom and I have always been extremely close. Life without her scares me more than I can even explain. And not knowing makes it so much scarier. I’m dreading that midnight call telling me she is gone because I want to be there with her. We are a family of Faith and I know I will see her again but I really wish I could see into the future right now. Her PAH is progressing rapidly now. We see changes in her daily. Her voice is raspy and her movements are slow and calculated. We all know we are on borrowed time with her so we make the most of it. I don’t want my mom in pain anymore. I hate that she can’t do what she used to love…things like gardening, time outside with her family, and simple tasks like cooking. PAH is horrible. It’s an known predator with an unknown agenda. And as a daughter watching her hero suffer, it hurts a lot to see and live with.

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