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Looking for Pulmonary Hypertension in Others
Do you look for the signs of pulmonary hypertension in others, maybe without being aware that you are doing it? Have you actually helped someone with an early diagnosis because you recognized the symptoms and encouraged that person to address them with a doctor?
My sons claim that when anyone is talking about their health I’m all ears listening for the possibility of PH. Apparently I do this to the point of annoying my children. For example, a girl from my son’s school passed out at two different times while at church. Both times my boys leaned over and whispered, “It’s not PH, it’s just hot in here!”. The girl did see a doctor and had cautionary tests done but it was determined she passed out due to heat and having not eaten breakfast.
Keep in mind I’m not starting a PH discussion with every person who is having health issues, but I do listen intently and will speak up if I become really concerned. So far that hasn’t happened, except while watching TV, and I’ve been spot on each time with the diagnosis. That also drives my son’s crazy! Having seen my son go through two years of misdiagnosis and his heart having payed the price for the delay, I am focused on trying to keep that from happening to someone else if I can.
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10 Replies
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Although I didn’t help someone reach a diagnosis, I like to think that I helped my doctors to notice the early signs of something wrong. One of my doctors offices even told me that because of me, when a patient is experiencing shortness of breath with activity, they now make sure to test the oxygen levels on exertion too. That is something that I have spread awareness about. If it wasn’t for a nurse testing my oxygen levels with activity, I still may have been searching for better answers and believing that things were “all in my head”
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You know Brittany, I think that is the most we can hope for, that doctor’s learn from treating their PH patients and spread awareness through the medical community.
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Exactly, Colleen! The more they are learning from us the better. I’d rather have doctors learn from me than be ignorant towards me and have too high of an ego.
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Colleen and Brittany, I vote with both hands for everything you’ve said!
I don’t think I’m looking for signs of PH in people, but I’m definitely a bit “turned on” on this topic. Since I visited my city at the reception of almost all doctors who are somehow connected with the lungs and heart (pediatricians, therapists, ultrasound doctors, cardiologists and others), I know that their level of knowledge is too low (in all topics, and especially on PH). That’s why my mother and I try to help people if we find out that they have any suspicions about lung and heart problems. We’re trying to explain to them that it’s better to get tested than to find out later when it’s too late. We give them contacts of my cardiology center in another city and explain how to get there, which doctors are better there (so as and there, too, there is not very clever doctors). When one of my colleagues said that her teenage son was sent for a consultation to this medical center, and she wanted to be checked there too (just in case, because she has constant problems with blood pressure), I told her in detail which doctors are better there. And I breathed a sigh of relief when she came from there from my ultrasound doctor and said that he didn’t find any problems with her in his specialization.-
Sorry not all the text fit. Is there a limited number of symbols?
I also wanted to say that I do not tell people a lot about myself, especially about any diseases (some of my colleagues would be terribly surprised to learn about my diagnoses), so I do not go into details “as I was at the reception of this doctor, go to him too”. But I try to direct people that they didn’t start any problems with heart or lungs if it is at them, I try to explain why it is necessary to be checked at least once.-
Valerie, you just never know when your personal experience and knowledge might help someone else. I think stepping forward with advice when things are sounding a bit too familiar is a good thing to do. I wish someone had when my son started showing symptoms. You and your mother are making a difference by teaching others how to advocate. As I’ve explained to my son’s I’m not going around giving everyone medical advice but I am listening and I ever feel it is appropriate I will share some friendly advice.
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You’re both absolutely right that our communication with doctors is beneficial to other people. A good doctor isn’t just trying to make our lives easier. He also aims to learn more about PH and prevent other cases of the disease. Or in our experience to simplify the lives of other patients. I know that newborns are often brought to my cardiology center, if there are suspected problems they have with the heart or the lungs.
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I see them being taken to my doctor for an ultrasound. On the example of me and one or two patients with PH, he knows where to look for “pitfalls”, what insidious secrets can conceal PH or similar disease. The same situation is with my cardiologist from this medical center. It gives me hope that their new knowledge together with modern medical equipment and timely appeal to these doctors can save someone’s life. If congenital PH can be operated in the first months of life, then perhaps some little patient will be lucky and doctors, having learned from their own and others mistakes, will save him from this insidious hidden disease.
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So true Valerie,
Thank you so much for taking the time to write all of that. It really means a lot to me and others in the PH community to have you show such passion for advocacy and raising awareness. I often direct my attention to the younger generation of PHighters but also have a ton of sympathy for those that are my own age and older with this disease too . I feel like if anything, doctors can learn so much from us and we can learn so much about healthcare and the health system and share our knowledge with others. That’s always been such a driving force that keeps me going back to appointments and back to get testing so doctors can get more information. Sometimes when i don’t want to do the tests and can’t find it in me to want to do it for “me”, I do it for others so hopefully one day they don’t have to struggle as much.
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I have one of the best Doctors infectious disease in the country. He is smart and admits that he is not an expert in PH but he is the kind of doctor that will find out. He is a good friend. I helped him in pharmacy questions all the time. But answering your question I probably look more for people with Systemic Lupus more than PH. You all are right. Doctors all need our help getting a clue how to diagnose and treat us. Especially me. I have about 5 different major diagnoses and any one of them may cause something. His medical students from.the University of Washington usually get a taste of confusion with all of my problems.I sure hope and pray that things go into remission so that I can enjoy a few days every week.
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