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Asthma? Heart results?

I have said for 8 years now triggers cause low oxygen and very high heart rates. I have been coughing up blood again. Still having triggers. NO diagnosis after 8 years for my lungs. I sent a note to why this is happening to a particular member on this site.

Heart echo shows: Pulmonary valve Regurgiation. Enlarged heart. A dilated inferior vena cava. The last one is a bad marker for mortality.

Seems it is too late for help now. But I go to a new Lung Doctor at Vermont Medical Center anyway. 

Doubt the truth will be told here either.

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  • K8sMom2002

    I'm hoping the new lung doctor will have a way to move forward on this and work with the cardiac issues that they've found.

    Meanwhile, you are NOT alone. You have support here and we understand how frustrating it can be to deal with symptoms and feel like you are not being heard.

    Please don't give up — every day new treatments and therapies are being found. I am not saying to ignore the hard facts you've been given, but you seem like a very smart and determined person, and you've persisted to finally find this information out. 

    And cardiac issues can look like asthma, so that may be complicating the picture. A great place to look, if we haven't already mentioned it, is AAFA's resource called "?" Could you take a look at it before your next doctor's visit? 

    I so hope this appointment is a good one that helps you move forward with a good plan. I hope this doctor will listen and really HEAR you. Coughing up blood is something to take seriously — just as you are doing and have been doing.

  • Emelina

    Ugh, I’m so sorry to hear about your struggles. Have you ever considered going to national jewish for an evaluation? Perhaps a thorough multidisciplinary review is something that could help you get answers? When I went there my doctor spent over 2 hours reviewing everything. 

    Good luck! Em

  • MPH

    Thanks for your idea.

    I went to the National Jewish center in NYC. That is one of the reasons I ended up this way.

  • K8sMom2002

    Hugs … it sounds extremely frustrating! I will say that different centers are run by different people, and one "brand" location may not be the same as another. I'm relying on word of mouth of the people who have been at NJH in Colorado to hope that it might be a different experience for you.

    What's the next step for you?

  • MPH

    Why did the heart doctor tell me a lie?

    Pulmontary heart regurgitation can come from pulmonary hypertension. Pulmonary hypertension is common to come from asthma. This info comes from the American Heart Association and Pulmontary Hypertention Association. This is a cause of some asthma deaths.

    I already been told the inferior vena cava comes from a poor functioning heart. Rare and serious. Tied to the rest? I believe so. When it totally collapses, I am dead.

    Doctors hid the enlarged heart since 2014. I knew about it from Doctors records long ago. I know that is all they thought they would find. I was told it shocked the heart doctor.

    Now I go to a new lung doctor. Who has to figure out how to lie to me about everything as the heart Doctor told me directly for all the above heart issues to talk to the lung Doctor.

    I don’t fear death. I fear the continuing of being lied to about serious medical conditions that lead to pain, coming close to dying multiple times, not knowing why you feel like you are going to die, and never receiving proper treatment leading to more additional medical conditions. I welcome death in that case.

     

  • K8sMom2002

    MPH, sometimes it stinks to realize that doctors are human. And some lies are not necessarily intentional or done with malice. Some omissions are because a provider genuinely doesn't think it's that serious. It's just not at the top of their list of things to be worried about — I've seen specialists do this, especially when they are dealing with something that is outside the scope of their specialty. 

    Or sometimes the provider doesn't get the full information from the radiologist or pathologist, just the bullet points. Honestly, there can be so many points of breakdown when it comes to learning about and properly interpreting test results. 

    Other times, yes, I'm sure that, since medical providers are human, in a small minority of cases, some doctors do seek to cover up mistakes. 

    I hear you on how frustrating it can be. While I've never faced a serious omission as you've experienced, my own family has had several times when test results (and their larger meaning) weren't properly communicated to us. It cost us time and worry and missed treatment opportunities. 

    For my own sanity, I have to focus on what I can control and what I can't. I can't change the past. I can only deal with the here and now. 

    In that spirit, could you …

    • ask for a copy of all doctor's visit notes and test results at every visit and with every doctor you see?
    • double-book appointment times so a doctor has additional time to walk through test results with you?
    • ask to be transferred to a cardiologist who specializes in medically complex patients with your condition? 

    Without trust, a relationship means nothing. People have to trust their healthcare providers … and if they don't, then it may be time to either have a frank conversation with their provider or move on to another provider that has been recommended by people the patient does trust.

    You also mentioned this … 

    MPH posted:

    Pulmontary heart regurgitation can come from pulmonary hypertension. Pulmonary hypertension is common to come from asthma. This info comes from the American Heart Association and Pulmontary Hypertention Association. This is a cause of some asthma deaths.

    Pulmonary hypertension can certainly masquerade as asthma. That's why it is so important to have a good doctor who will explore other options with you if your asthma doesn't respond to the treatments prescribed. 

    One subset of pulmonary hypertension IS caused by COPD and , but asthma isn't usually considered an interstitial lung disease on its own. 

    When is your doctor's visit? I'm hoping that you will find that this doctor is a straight-shooter who will help you make a good plan forward. 

    You are worth and you deserve a good, long, healthy-as-possible life. I'm hoping you assemble a medical team that will work with you to get you what you deserve.

  • MPH

    I was told I have asthma and told it goes back to 2010 yesterday.

    6 minute walk something went down to 60 as I was told when I could not breathe.

    It happened twice in a 6 minute walk.

    Was told I have fibrosis in my lungs around the area of where my lungs go to the heart on an X-ray. First time ever told so. Reason I am coughing up all blood from my lungs?

    Yes honesty would go a long way to causing less stress.

    Mike

  • Wheezy Me

    Hi Mike,

    First of all, sounds like you're going through a really hard time, both because of worries regarding your medical condition and emotionally because of the doctors.

    What you said about your heart test can definitely result from pulmonary hypertension or other lung/heart disorders. Asthma is definitely NOT one of them (don't know where you got the information that asthma often causes pulmonary hypertension, but this is definitely some misunderstanding). Bloody cough is not a typical asthma symptom either. Are you sure you were properly diagnosed with asthma? Could it be a different lung disease? Or you have both asthma and another condition?

    Anyway, that is great you are going to another specialist to get tested properly. A correct diagnosis can lead to the right treatment which helps you feel better, and I hope that will be the case, and soon.

    Stay strong!

  • K8sMom2002

    Hugs, Mike. It sounds like you have two overlapping lung disorders: asthma and a form of pulmonary fibrosis. I agree with Wheezy Me that asking your doctor about coughing up blood is a good move.

    Could you also talk to your doctor about something called pulmonary rehab? 

    It can help preserve the lung function you have now and possibly help you build up your lung capacity.

    There's something called the dyspnea spiral — dyspnea is just a fancy way of saying difficulty breathing. 

    Interrupting this spiral with pulmonary rehab can help a person's quality of life and improve medical outcomes. But any rehab needs to be cleared by a person's doctor and tailored to the person's individual physical condition. In other words, the rehab needs to meet a person where he is and move slowly and carefully at a safe and appropriate pace.

    You've had a lot to digest and take in these past few weeks, and none of it has been easy. But please know you are among friends here.

  • MPH

    Can uncontrolled asthma cause something called airway remolding? Is this also a cause of scarring and fibrosis? Is this something that continues to get worse over time? While you continue to have uncontrolled asthma?

    Because the attacks have become worse over time. The after effects worse over time. I was told directly by my Doctor, pressures are a cause of my heart problems. Not just my heart itself but going back to my lungs.

    I have been told I have scarring and fibrosis. Lots of it in my lung area leading to my heart. Told this could be the cause of the bleeding. 

    When it all first started a Doctor told me in 2011 when I asked him what was wrong, “You are not smart enough to understand, so I am not going to tell you.” Also told me in my 2nd appt, “you can’t sue me”. Another Doctor said, “He did not help you because you talked about another doctor and some doctors dont like that.”

    He did nothing for these asthma conditions for them to be uncontrolled. Worse yet I was told later by another Doctor, “If I listened to the Doctor(same one as above), I would not have had the problems I have.” 

    Another Doctor told me, “Doctors are messing with me.”

    Hence the reasons I ask questions here. I think the present conditions are becoming life threatening and on top of it all I dont think anyone will tell me the truth of my conditions. 

    Can asthma uncontrolled kill? I think what I am describing is exactly that.