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    • #23754

      As a young adult living with a chronic lung disease, Charlene Marshall has met several other patients navigating life with both an interstitial lung disease (like IPF) or heart-related issues. About two-and-a-half years into her own IPF diagnosis, Charlene was noted to experience cardiac issues as well, leading to a diagnosis of pulmonary hypertension (PH). As a result, the results of this study conducted by the University of Keele in the United Kingdom, stating a relationship between interstitial lung diseases and heart-issues did not come as a surprise to Charlene.

      If you’re living with a diagnosis of IPF/PF, are you monitored for your cardiovascular risk as well? Have your physicians spoken to you about this risk? 

    • #23771
      Kenneth Overby
      Participant

      Charlene,
      This was a very interesting article and I concur. Delores has consulted with her cardiologist also and he has communicated with her pulmonary doctor. I noticed that you have been diagnosed with Pulmonary hypertension. In my research I found out that one of the mutated genes that contributed to PAH the most was the BMPR2 gene. So, I had Delores tested for that gene and it came back negative (she didn’t have it). So when we informed the pulmonary doctor of this, she changed the prognosis to Interstitial Disease. Also, if you do in fact have PAH, one of the main test you want your cardiologist to check annually is the one that checks the status of your right ventricle. This is because in the late stages of PAH is the failure of the right ventricle to do its job. Please let me know that you got this message.

    • #23789
      Jofac O’Handlin
      Participant

      Charlene, Yes this is interesting, in simplistic terms logical. As our vital capacity and gas exchange values reduce, the only compensatory mechanism is for the heart to attempt to circulate a larger volume of blood. Thus stain on the heart. I wonder what was the final component to fail when my sister died? I would expect that the death certificate would record IPF, but I would need to check with my brother in law. I wonder what will be the component when my turn comes.

      My consultant, some years ago, referred to a progressive abnormality of the heart which I regret to say I did not take in. I had the arrogance to believe that my  athletic background would protect me to some degree. In following up Kenneth’s observations, I noted that arrythmia was one of the symptoms, something that I suffer occasionally.  It is episodic in nature, presently clear.

      As a final note, I wonder if maintaining an iron rich diet, or supplement is desirable to maintain healthy haemoglobin? I tried tablets but they didn’t agree with me, so I now use iron rich water in juice as a lower strength supplement…. a palliative.

      Regards, Joe

    • #23805

      Hi Kenneth,

      So nice to hear from you my friend, thanks for writing! I have indeed received your message, and thank you for the update on Delores. I’m glad to hear she didn’t have the PAH gene, that is good. Did the new diagnosis of interstitial lung disease (ILD) change the trajectory of any treatment or anything for her? I get annual checks on my right ventricle, good reminder. Thanks for writing and letting me know how Delores is doing. Always great to hear from you!
      Charlene.

    • #23820

      Hi Joe,

       

      Nice to hear from you – you raise some really good discussion points and questions regarding the relationship between heart disease and IPF. Logically I agree, it makes good sense, though it is of course most unfortunate for those of us already suffering from a lung condition. Are you/have you been followed by cardiology since your diagnosis? It’s often hard to know which disease is causing the symptoms like shortness of breath, which can be easily a lung or heart disease. I too suffer from arrhythmia’s on occasion.

       

      It was recommended that I do take an iron supplement, so I am now on Feramax 150. Was this the tablet you tried? Otherwise maintaining an iron-rich diet is the next best thing. Hopefully this is working well for you. I can’t say whether or not it is beneficial, but I would imagine it is since I was told to start taking a supplement. Thanks for writing!
      Charlene.

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