Can We Celebrate Instead, Please? The Importance of Embracing Good News
“Can we celebrate instead, please?” crossed my mind as my doctor discussed the results of my most recent right heart catheter.
He showed me a chart that was sort of like a stoplight. The chart had green, yellow, and red markers. Red is an indication of “bad” results, and more than a couple of yellow results is undesirable as well. Much to my doctor’s surprise, all of my results were in the green. I have some unusual symptoms that have led to many other specialists, tests, and even heavy–duty lupus medications for several months. So, he was curious to see if anything unusual would show up on my heart cath. My heart, which was in severe right–sided heart failure three years ago, was now functioning normally despite my higher–than–normal pressures.
I was in the green, and my heart is functioning normally. That’s good, right? Some might even say that is cause for a celebration — especially after being as sick as I was during diagnosis.
Wrong. To wrap up the conversation my doctor asked me for the seventh time whether I have insurance. “No, I used to work in insurance. I lost my coverage when I had to retire,” I repeated. (Please stop dangling that delicious Uptravi carrot in front of my face if I can’t have it.) He then went on to say that it was OK because he will put me on IV medications if things start to change.
In my mind, I heard the sound of a record scratch. I wanted to ask, “Excuse me? Did I not just have pretty good results?” Here I was expecting a bottle of champagne to be spritzed over me like I had just won a NASCAR race, and my doctor was discussing a treatment plan for “when” I get worse. He even went on to say that IV medications are not something I need to be on right now.
So, why bring it up at this appointment?
I get it. I know that pulmonary hypertension is progressive. I’ve felt it ravage my body and crumple up my future like a piece of trash, barely missing the garbage bin. But do we really have to talk about the “decline” at every single appointment?
Truthfully, it is exhausting always leaving my appointments feeling so pessimistic about my future. And with PH, there are seldom reasons to celebrate. I don’t have three more rounds of chemo before I am done treatment, the chance of remission is viewed as a medical miracle, and unlike other diseases, PH can’t be cut or poisoned out of me.
As a PH patient, I feel like we so rarely get a chance to celebrate victories involving our health. It is really important to me to acknowledge when positive things regarding my health happen, and I need my doctor to embrace that as well. Hope is powerful; it is humane, and it can help ignite our will to live during dark times.
If we have a reason to be optimistic or celebrate, let’s not worry about what could happen. Instead, let’s focus on what is good today.
So, can we celebrate instead, please?
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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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Comments
Andrea Rice
This illness I have diagnosed 12/2016 was a shocker. No one wanted 2 believe that every 3 years since the trauma of a severe car accident something else was going to go wrong, and here it is Pulmonary Hypertension. This is by far the worst because I was given a time of 20 years 2 live. Or 3, it seems I could have been misdiagnosed years ago as it was suggested I have asthma and allergies. Not a happy camper. If I have 3 years left 2 live I'll take it because there's no point in prolonging with the medicine and the procedures and the suspected surgeries I could have 2 have. I don't like surgeries, procedures or taking medicine. A few of the medicines make me so nauseated I have 2 eat saltine crackers and drink diet coke 2 feel better. This is not what I call a proactive plan 2 feeling better. With that said, I'm still open-minded and strong-willed 2 listen 2 advice from others and doctors because I choose 2. I don't always have 2 agree and if I disagree with another person's opinion I have learned something new from this experience. But I am still sad. My cardiologist suggests I look at this illness in reality and not sugar coat anything. My son is taking this news very, very hard and worries constantly about me, having an upbeat, optimistic point-of-view it's hard 4 me 2 be negative. He doesn't want his mom 2 die but there's always chances of this happening. No guarantees. I don't want 2 die either but it's a part of life. I consider this illness not fair but then I read other people younger than I get it so it isn't fair 4 them either. Feel so old even though just turned the speed limit age last month, when I look in the mirror or watch how exhausted I get from walking few feet, rest, I feel as if I'm in my 70's and 80's already. I can't escape these feelings. Is there anyone out there that has feelings similar 2 mine? Please share. Thanks 4 listening.
Serena Lawrence
Hi Andrea,
Have you tried using online support groups and programs since your diagnosis? Online support is something that I have taken advantage of since my diagnosis, and I found it very helpful. The Pulmonary Hypertension Association offers a mentor program where you can talk to a fellow PH patient based on what you need to talk about, your age, and what kind of PH you have. Once I felt ready to talk to other patients, this was one of the first steps I took- and I am so glad I did. I met a wonderful mentor who really helped me!
I wrote about some online resources for PH patients that you might helpful, or be interested in: http://pulmonaryhypertensionnews.com/blog/2016/08/25/online-resources-for-pulmonary-hypertension-patients
Warm regards,
Serena
Andrea Rice
Thank you Serena, I will take your advice. Thanks 4 contacting me. Sending my sincere thanks back 2 you.
Andrea
Serena Lawrence
Best wishes to you Andrea, I hope you are able to find some wonderful online support. Sometimes being able to relate to someone who "gets it" can be very comforting. I've made so many great friends online thanks to support groups. We Skype and send each other care packages– there are a lot of great PHriends out there for you to meet :)
Jessie Brown
I have been living with PAH for many years on the IV Remodulin for almost 10. I have been seeing 2 docs. One I gave the nickname Dr. Awesome, the other, Dr. Fear. Dr. Fear was always concerned about how I was in a cautionary way. Dr. Awesome was a 5-state expert and always noted how great I was doing in respect to where I could be. Perspective is huge, and as important as our doctors are in our lives we have to maintain our optimism, sometimes independant of theirs. Celebrate. You may find yourself living with this a long while.
Serena Lawrence
Thank you for the encouragement. I am glad to hear you have Dr. Awesome on your side! :)
Director Melissa Dumitru
Beautifully said and about bloody time! Well done I couldn't agree more. Hope should be the first medication prescribed and no one has the right to rob you of it no matter the circumstances. Your reference to our disease not being able to be cut out of us or poisoned really resonated with me too... your work that you share with us here in your blogs has given me hope and inspiration Serena. I have also found that we get more encouragement from fellow PHer's. I don't think that the doctors can appreciate our circumstances because they are not sick and fighting to live. This divide is something worldwide. Its people like you who keep me going so thank you for sharing this amazing good news with us, congratulations it's amazing. Once again I will be sharing this with our members on FB and in our magazine. Take care and always enjoy the little things, but this, this is HUGE so eat the whole cake!! Warmly your friends down under in Australia Warmly Melissa x
Serena Lawrence
Hi Melissa,
Thank you for the kind words. Hope is a powerful tool, and it can be terribly hard to hold onto in dark times. It is my hope that more it will be prescribed more :)
I agree, I think it can be difficult for some doctors to appreciate our circumstances. I've had a few just give me facts and figures in a cold way, completely forgetting that they are talking to a human about their lively hood. But at the same time, I understand that it must be a difficult to be a PH doctor.
Thank you again for the support, and for sharing my story.
Warm regards,
Serena