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Were you misdiagnosed initially before a PH diagnosis?
A recent multinational survey shows that 41% of PH patients were initially misdiagnosed.
Our PH News team shared these results in a recent article. This survey also shares that these patients see an average of 2.9 physicians before getting an accurate diagnosis.
Some reasons for this delay are:
**Lack of Education
**Awareness,
**Vague symptoms ( often associated with many other conditions)You can read the full article below.
Delayed diagnosis common with PAH, multinational survey finds.Were you initially misdiagnosed? How many physicians did you see before an accurate PH diagnosis?
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50 Replies
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It was so bad. To shorten this, my hands were blue, I was short of breath, I was full of fluid and I felt like I was dying. I was diagnosed finally as severe late stages of everything. I kept going to my pcp and my pulmonologist and was told to lose weight and exercise. I told them , I would if I could breathe….Pulmonologist walked me out of his office in front of everyone……Changed ALL my doctors and very quickly everything was diagnosed correctly and I began treatment. However, early treatment would most definitely have been better.
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Hi, @Jill Upshaw. Your delayed diagnosis of PH, unfortunately, is not uncommon. But yes, it certainly helps when they catch it early on, and we can begin treatments.
Yeah, when I was diagnosed, I thought I ate too much over the holidays since it was in January that I noticed the SOB. But I thought I couldn’t even climb my stairs at night, much less exercise. I get it!
I’m grateful you finally found the right team to work with you and begin treatments. Thank you for sharing, Jill. How have you been? It’s great to see you on the forums. 🤗
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At first they told me I had COPD, then my cancer was causing it, then PH, then back to cancer, now it’s back to PH. Asthma was considered in there some place too. I think everyone now believes it’s PH now???
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Hi @Roger Bliss, yeah, I also was diagnosed with asthma and COPD before they came to PH. But now that it’s been so long, it’s PH. It’s frustrating and confusing, and I know I must keep going back and forth. But the main issue is you have something going on, and hopefully the Tyvaso will help. Although, I know you’ve been on it before.
Thanks for sharing, Roger!
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@Jill Upshaw @Roger Bliss I am so sorry for the both of you and countless others who were misdiagnosed and/or dismissed for so long. My son suffered the same consequences. For 2 years it was thought he had asthma (inhalers made him worse), sometimes we were told he had croup (He was 6 when he became symptomatic) and sadly, he also went through an anxiety diagnosis. By the time PH was discovered he was in critical condition.
Honestly, I hold no anger towards the doctors who misdiagnosed him. I always felt like they were listening and trying hard to figure out what was wrong but looking back 18 years ago, PH, especially in children wasn’t on the radar. It was his pediatrician who eventually notified his cardiologist that, “I know this might be hard to believe, but I’m wondering if what we are looking at is PH”. Soon after a right heart cath confirmed it.
We have to keep advocating and spreading awareness. I have noticed improvement in these areas since my son was diagnosed so I believe that speaking out about PH truly makes a difference!
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Hi @Colleen, and welcome back, my FWW and friend. I am sorry about the misdiagnosis. You’re right; during our years managing PH, so much more education has been out there. Although I know we still need to continue to advocate, especially for treatments for children, we are doing better than back when Cullen was first diagnosed.
Thanks for sharing and know how grateful we are to have you back! 💜
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Hello, @Colleen-Steele !
I’m so sorry to hear that! It seems that doctors have been conducting experiments, trying to use diagnoses familiar to them. But that’s what doctors should do – look for the real disease.
One of the good doctors tells me that I shouldn’t blame anyone, because in the early nineties few people had heard about such a PH and there was no necessary equipment.
I think we should hope that our experience will help doctors in the future! Every patient with PH or any other disease is a unique patient. The more science knows, the more new patients will have a chance of recovery.
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@Valerie I completely agree! I believe my son’s cardiologist prior to the PH diagnosis was doing his best to help my son. When PH was found the cardiologist said, “This is beyond me,” and referred us to a PH Specialist. That is a great doctor, one willing to admit lack of knowledge or ability in an area and the willingness to refer the patient to a doctor where they can receive the best care.
How have you been doing?
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Hi @Valerie, I echo your thoughts on this! You said this so well. We can only hope that our experiences here will better the treatments and care that generations receive after us.
Very little knowledge about PH existed in the 90s and still in the early 2000s. We are making advances in treatments and awareness efforts. Together, we all have contributed to this in some way.
I hope you are doing well, as I know you have multiple coexisting conditions to manage. You were most concerned about your vision, the last I recall, especially because you read a ton. How’s that going for you?
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Hello, @Colleen-Steele , @jen-cueva !
For some reason, I do not receive notifications about responses to my email.
How accurate! It is good when a doctor is ready to admit his lack of knowledge. It’s bad when a doctor considers himself omnipotent (I watched the movie “The God Committee”, which Jen once wrote about here!)
We hope that our difficulties with PH will not be in vain.
Everything is almost as it was for me. Most of all, I’m tired of chronic fatigue, of course.
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@Valerie I will reach out to IT and see if we can get you receiving email notifications again. In the meantime, please check your Spam folder. At some point PH News might have gotten recognized as Spam. If that is the case you should be able to click somewhere on a notification set to Spam that it is not Spam.
Fatigue is a miserable symptom. As much as it can interfere with your life I do hope you rest when your body tells you too. Between the disease and treatment side effects it’s a constant battle I’m sure.
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@Valerie Also, when you reply or post something, you will see at the bottom left in the gray section, “Notify me of new replies”. Make sure you have that selected.
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Hi @Valerie, I’m sorry you aren’t getting the email updates in your inbox. @Colleen also shared some information that you may find helpful. You can also try adding this to your favorite email addresses [email protected].
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@Valerie I checked with IT and the suggestions are already gave you are pretty much what they would have suggested too. Let us know if any of those help or if you are still having problems.
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I am sharing this post for @Randolph Reynolds since he has trouble posting it. He says, ”My experience with my first symptoms of shortness of breath was to be referred to a pulmonologist. His manner of working with patients was deplorable. Went through the CT scan routine and he didn’t look at the results until I came in for an appointment. It was then he found, after a bit of a search, that I had embolisms in both lungs. He put me on warfrin and every two weeks I went for a blood test to determine my INR. When ever I had an appointment all we talked about was the INR. One day I had an appointment to see a new cardiologist. After checking my oxygen level he took me on a walk about the office and concluded that I had PAH. He knew of a specialist in Phoenix that I should see.
I mentioned it to my pulmonologist and he said he would do a referral. He even said he knew one of the specialist. Time went by and no action on my behalf. One afternoon I charged into my Primary Care doc and interrupted him. He called the cardiologist and made it very clear he should get the referral. Later that night the cardiologist called me and told me I had an appointment for the following week. I fired the pulmonologist (who replied ’I don’t need your business.’) and kept seeing the cardiologist as he became a friend. In about a month I had gone through an pulmonary exam that revealed the firbrous embolisms. Then a right heart catherization.
<i style=”font-weight: bold;”>I am certain this early diagnosis was a blessing. That was in 2014.
Randy, we are also grateful that your PH was diagnosed early, and we now have the opportunity to learn so much about you and your PH journey. Thanks for sharing. 🤗
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@Randolph Reynolds your story is an excellent reminder to both old and new PH patients how important self-advocacy is! For some, it might be getting out of their comfort zone and confront doctor’s who aren’t listening. Their ego isn’t as important as a someone’s life so don’t be afraid to speak up!
Thank God you had at least one doctor who had your back! I’m so glad you eventually got the care you deserve!
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I understand what @Randolph Reynolds is saying. I have had to dump three doctors in AK. It was a combination of they didn’t have much knowledge or they couldn’t get along with the doctors at UCSD. I still have one that is pretty sharp, but doesn’t get along with doctors in UCSD. I have worked around that problem and still go to him. It’s so true……you have to go with your gut.
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Hello everybody!
How familiar this is to me! I was only diagnosed with “mitral valve prolapse”. They said it was nonsense. But in one hospital, the doctor incredibly realized that the pressure in my lungs was too high. I had to see different doctors until I was given a PH, but then I was already 18 years old (it was too late for surgery). So yeah, they just wrote “prolapse” and everyone thought that was all I had.
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@Valerie I’m sorry you went through that! My son was diagnosed with Long Q-T and Mitral Valve prolapse before PH. We figured those 2 out because I have a minor diagnosis of it so they looked for it in Cullen. His was much, much worse than mine. When his symptoms kept getting worse his dad and I kept pushing for more tests because we felt in our gut that something even bigger was at play. Two years later, his heart was so enlarged from PH that we were worried we were going to lose him that year.
Do you still have a mitral valve prolapse diagnosis with the PH?
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Wow, @Valerie, I am so sorry that your actual diagnosis came too late for surgery. Do you continue to have mitral valve prolapse with PH and your other health conditions? Or did the treatments for PH help with this, too? I can only imagine how badly you experienced arrhythmias. Is that a big issue for you?
Thanks for aharing- take care, my PHriend.
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Hello, @Colleen-Steele , @jen-cueva !
Colleen, you and your husband are real heroes. You fought so desperately to find your son’s real illness! I think it’s very valuable to him. I’m sorry to hear that you have something similar.
I have mitral valve prolapse now. Is it being treated? I don’t know anything about it. -
@Valerie my prolapse and long QT were treated years ago but the beta blockers were making me extremely tired every day. At the time I had low blood pressure which didn’t help. It was decided I could stop treatment because my conditions were so minor. I take my dad to a cardiologist appointment tomorrow and I’m going to look into making an appointment for myself. It’s been a while since I’ve had my heart checked.
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Great call, @Colleen. So, we want to know if you scheduled a cardio appointment for yourself. It sounds like it’s been too many years since this was checked out for you. Although, I hope and pray it continues to be minor.
With the busy little bee you are, don’t forget to take care of your health needs. Have you already seen a primary care doctor in New? I know you’ll most likely need a rheumatologist, too, correct?
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@jen-cueva I have a primary care appointment scheduled but it’s not until June. When I took my dad to his cardiology appointment I did make an appointment for myself too. That is in May. I’m trying to take care of myself.
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Yay, that’s a huge win for this year, @Colleen! You are taking time to schedule self-care appointments! I’m incredibly proud of you, my friend and FWW!🏆
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@jen-cueva thank you ❤
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💜🥊❤ @Colleen, keep it up, my friend!
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Shortness of breath and extreme fatigue sent me to a cardiologist initially (early 2020) and he referred me to a pulmonologist as well.
My diagnoses were multiple heart issues: valve disease being the biggest. During the time surrounding these visits. I had a heart attack. Ten days later i was admitted to the local hospital with severe shortness of breath, bilateral pulmonary effusions and pericardial effusion. After 2 thorensetisis (I’ve had 8 so far), I was taken to OR to remove the fluid from around my heart. I woke up 4 days later – they had nicked my liver and I went into hemmoraghic shock. I was then airlifted to University of Virginia hospital. Eventually, I ended up on the cardiac intensive care ward. Through many tests, scans, MRIs, catherizations, etc. I received many diagnoses of my heart AND PH! Up to this point, I had never heard of PH. I was referred to the pulmonologist team at the same hospital. The doctors at UVA work together to take care of the (total)patient, and collaborate to find whats best for that individual. I am very thankful to have found a place where the doctors are extraordinary. As per my story above, it shows not everyone looks at the broader picture and fits the puzzle pieces together. I have learned through these experiences to be an advocate for myself. I’ve also learned to educate myself and others about PH, praying to bring greater awareness to help others who struggle with PH in the future.
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Wow, @DeLois Tweedy! You’ve been through so much within a few years. Although I read your shared journey for PH Awareness Month, it sounds much more complex when I reread it, and I am reminded that this has been going on for the last several years.
However, I’m grateful that you’ve found a team that focuses on treating the patient as a whole versus only focusing on one issue. It all goes into play, and many doctors forget about the other health concerns and only want to focus on “their portion.” I hope that makes sense.
I hope you are having a great month and enjoying the warmer weather, Dee.
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@DeLois Tweedy I can’t imagine how confused and traumatized you were waking up from surgery to remove fluid around your heart and finding out 4 days had passed. Terrifying but like you said, thank God you were in the hands of excellent doctors. Thank you for continuing to advocate for yourself and others. I do believe spreading awareness can save lives!
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Sometime around 2017/8 i discovered when attempting to walk up a hill I could not. I mentioned it to my GP who sent me to a Cardiologist who arranged an angiogram which showed the LAD artery was 85/90% blocked so a stent put in but I still had extreme difficulty breathing. At the same time I was seeing Rheumatology in a large Public hospital for another issue and spoke to them who sent me to Respiratory. Over a period of 12-18 months I was given numerous tests at Respiratory including CTs and a Bronchoscopy and lung flush. They then advised me I had mild emphysema and I must be losing blood somewhere as my iron/ ferritin levels were very low so they gave me a blood transfusion and iron infusion and discharged me. Tests showed I not losing anything but my mind. Pretty sure they determined I was exaggerating . I still could not breathe so went back to the cardiologist who gave me a cardio stress test and diagnosed severe pulmonary hypertension. An angiogram confirmed no blood clots so was sent for an rhc which confirmed PAH . The rest is history. I am of the firm belief methotrexate which I was on for another issue caused the PAH . On the positive side I could say getting PAH saved my life as my LAD (widow maker) artery was opened up. Now if only I could work out how to get rid of these bl..dy midges they are driving me mad .
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Wow, @Terry, it seems like you went through a lot, Mate. I’m sorry that the doctors didn’t find the PH sooner. I’m glad you could get the stent implanted in time after your concern and knowing your body best. Your story is an excellent example of how important it is to advocate for yourself until you get the necessary answers and relief.
Unfortunately, I can’t help with the blood loss and midges. Do you have iron infusions? It might be worth discussing with your doctor.
Thank you for sharing your story. It sounds like you’ve had a busy few years with all the tests and treatments you went through.
Thanks for sharing. It sounds like a busy few years with all the tests you endured.
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Wow @Terry out of curiosity I did a search on methotrexate and it sounds like you very well might be right that it caused your PH. Read through a few medical pages of documented pulmonary issues caused by that medication including Pulmonary Fibrosis and pneumonitis.
Thank God, you finally got the proper diagnosis!
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Hi Colleen and Jen,
I have regular iron infusions to keep my ferritin level up over 100 Jen. Seems this is a byproduct of PAH. That methotrexate can be a nasty drug .You know when I was in Hospital just to give me the methotrexate pill the nurse had to put on purple gloves and gown. Something to do with pregnancy.
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@Terry While handling many of Cullen’s medications over the years it was recommended I wear gloves when handling them in case of pregnancy and to protect myself from exposure to serious medication I don’t need. This gave me a future forum topic idea so thank you!
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Yes, I was misdiagnosed. I am overweight and my PCP was pushing gastric bypass surgery on me. I was pretty adamant about not wanting the surgery and I am so glad that I was. I went in with shortness of breath and fatigue and it was diagnosed as excess weight. It only got worse and I knew that it was something other than that and I persisted. He finally checked my oxygen levels and seen that I needed Oxygen. It got to the point where I couldn’t go up steps to get to my apartment. I wasn’t able to do my job and needed lots of help from co-workers before I was referred to a pulmonologist, who I met with and she saw that there was more to it than just my weight. She did an xray, blood work and a thorough consultation. I was in her office for about 2 hours. After I left her office a couple of days later she personally called me at home and told me she thought about our visit and consulted with a cardiologist and that he would be calling me and setting up an appointment to see me. (This was on a weekend) She was that concerned. She didn’t give me any clue as to what she thought it was. After I hung up with her the phone rang and it was the cardiologist. I had an appointment 2 days later. He did his consultation, sent me in for an echo, and while I was in the echo he told me that he wanted me to go to the hospital for bloodwork, and a VQ scan. They told me to wait until the cardiologist called and talked to me before I left the hospital. I never left. I was admitted and received my diagnosis and most of my weight was water weight due to congestive heart failure. I was diagnosed with PAH and later with mixed connective tissue disease. I was so bad that they were considering life lighting me to a bigger hospital. I am now receiving treatment at the hospital that they were going to send me to. I travel over 6 hours one way just to get the treatment I need because I live in a rural area and not many doctors know a whole lot about PAH or the drugs that I need to take. The cardiologist I saw just happened to know about PH and I was so grateful that he did.
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@Rayetta I’ve heard so many similar misdiagnosis stories because of weight and each time it upsets me more. Thank God for that doctor following her instinct and reacting with compassion! What treatment do they have you on?
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Wow, @Rayetta, that’s wild! If you would have undergone the gastric bypass, it’s most likely you have suffered complications. Unfortunately, it’s too often, I’ve heard many health issues blamed on weight and stress.
Thank God for being your best advocate and that doctor for going with her gut and not dismissing your symptoms. It’s often scary what could possibly happen when we aren’t advocating for ourselves! WTG! I am so thankful you shared this experience, although it makes my blood boil each time I hear stories like yours.
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I am currently taking Opsumit and Tadalafil for my PAH. For Congestive Heart Failure, I am taking spironolactone, Bumetanide and Potassium Chloride.
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I was misdignosed in 2015. It wasn’t until 2021 that I got a correct diagnosis.
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@Elaine I’m so sorry you were led astray down the misdiagnosis path as well. That is a long time to live with PH without proper care. How are you feeling now?
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Hi @Elaine, I’m sorry about the misdiagnosis. What were you misdiagnosed with in 2015? Was there another misdiagnosis between 2015 to 2021? I’m so grateful you finally received the proper diagnosis and could start on some treatments for PH.
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I spent 5 years getting a diagnosis. I was pumped with steroids and multiple inhalers for 3 years having been misdiagnosed with asthma which incidentally I never had. My pulmonologist said he thought there was something wrong with me but didn’t know what. My cardiologist was the worst of all. I fell off the treadmill on 3 different occasions so out of breath that the technicians had to pick me up off the floor. This same Cardiologist didn’t believe that I exercised 6 days a week and actually yelled at me “there is absolutely nothing wrong with you.” It took my Ortho MD who thought I had a fungus disease from roses who sent me to the Head of Infectious Diseases . He cared enough to walk me around with an Oximeter and then personally tracked down the best Cardiologist who rushed me into the hospital for a right heart catheterization . I had pressures 4 times normal ( he redid the test because the reading was so high!) , spent 8 days in the hospital at UCSF where they saved my life. Only then was properly diagnosed . They told my husband I only had a 5 % chance of survival. That was 3 years and 4 months ago. FYI, I wrote to the CEO praising the 3 MDs who listened to me. I did not castigate the Cardiologist but wrote her a personal email about all the signs over 5 years she dismissed probably because I was a female, over age 70. She never even acknowledged her role in the progression of my disease . I am grateful to be alive but how many more vulnerable people are out there whose Cardiologists and Pulmonologists aren’t listening more critically to their patients symptoms and actually believing them. Yes, this is a rare disease but this was a major SF hospital group . There clearly needs to be more ongoing training and focus in both Cardiology and Pulmonology on PAH before more unnecessary suffering and deaths occur. Accepting “ this is a rare disease” is not good enough. Thanks for listening.
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@Germaine Norwood “There is absolutely nothing wrong with you,” makes me furious! Yes, my son was misdiagnosed for 2 years but his doctors kept listening and trying to figure out what was going on. When PH was finally diagnosed the cardiologist acknowledged the disease was beyond him and sent us to a specialist. The 5 years of misdiagnosis hurt in more ways than one but I am grateful the his team kept trying for answers. Being told there was nothing wrong with you must have been hard to forgive. I admire the way you handled it and disgusted that the doctor remained dismissive!
By the way, you are very good at telling your story. I hope you do it often to help spread awareness.
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Wow, @Germaine Norwood, that’s frustrating and angering me! You’re right; all doctors need to listen to their patients and do a bit more investigation. If they don’t know the answer, they can refer you to someone who can help. In your story, the ortho doctor at least was concerned and sent you to another doctor.
Congrats and keep PHighting, my PHriend. 🤗
I agree with @Colleen. Your story reads well and will help many. I hope you choose to share it for PH Awareness Month!💜
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All these tragic stories of being misdiagnosed for years with multiple doctors. I can add to that list as too so many more tragic stories are still out there today that we don’t know about.
The biggest take away – is self advocating. You know your body is trying to tell you there is something terribly wrong and the doctors are not listening – your overweight, you’re a woman, you’re over 70 …
You have to believe in yourself and keep searching for the right team, do the research, keep calling and don’t give up!
It took me 4 years to find the right doctor, the right diagnosis and then finding the right team to deal with so many other critical diseases along with my PAH. And most importantly, finally finding HOPE.
Love to you all – keep fighting. ❤️
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@Carol Volckmann it is sad and scary how long it can take for PH patients to receive a proper diagnosis and care. I wish it weren’t the case but it often is and so your words of encouragement are valid and important, “You have to believe in yourself and keep searching for the right team, do the research, keep calling and don’t give up!”.
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Thank you Jen and Colleen for the validation and encouragement. Be happy to tell my story anytime, anywhere. You guys are the warriors leading the fight and we are right there behind you!
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Awesome, @Germaine Norwood! We will look forward to hearing more and sharing your PH jouney.
Thank you for such thoughtful words. But the warriors are our members, we are all in this together, my PHriend. Enjoy your weekend. 😎
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@Colleen I am so thrilled Colleen and so proud for you! Taking care of Colleen is huge! You have your appointment! You have been taking care of everyone else which you still can do, but taking care of your self is so important – remember, you are the roots of the tree 🌳. Love and hugs and praying 🙏 your appointment goes especially well and you are able to find some answers!! ❤️
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