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Shortness of breath on exertion, now Bendopnea symptom.

Hello all,

I was a caregiver to my father for years. He was told he had congestive heart failure by a pulmonologist after having his lungs drained of fluid. They went into the lung with a long needle between the ribs and siphoned out what looked like foamy beer from each. He’d been unable to sleep lying down due to breathing difficulties and the chest x-ray showed the fluid.....The pulmonologist diagnosed the symptoms of heart failure.

I’m currently a caregiver to my husband of 54, who has had breathing issues with very little excursion for a couple of years now with no diagnosis and symptoms that are worsening.

My husband is mildly overweight (15 lbs) , has never smoked but struggles with sleep apnea ( cannot find a good fit for his C-pap mask ) and more recently his blood pressure has skyrocketed after a serious injury to his leg resulting in peripheral neuropathy. Currently he is on blood pressure meds that have helped.

While at home recovering I’d noticed he’d be breathing heavy just walking to get his coffee. As he healed and tried to be more active the breathing upon mild excursion continued, along with extreme exhaustion. Taking a shower was too much effort to stand with the weak leg and he’d need a nap afterwards. He will take naps on and off all day he’s so exhausted.

Did an ekg in the Dr. office ( nurse performed) ...normal. Sent for pulmonary function testing...( technician, not pulmonologist) no asthma or COPD; however the technician asked if he’d ever had his heart looked at because he couldn’t hold his breath without coughing? Ct scan of lungs, normal....nuclear stress test on heart showed premature ventricular contractions but nothing else.

He now has developed a new symptom....when he bends over to pick anything up, or tie a shoe, he cannot breath. The symptom is called “Bendopnea “ ......NIH says it can be a sign of decompensated HF....he’s never been diagnosed, but my father had symptoms for some time before fluid built up in his lungs.... My husband denies breathing difficulties while lying down but the bending over is very problematic as it completely takes his breath away.

Does anyone know of this symptom and have you experienced it apart from symptoms of breathlessness while lying down? From medical articles, it seems it may be related to fluid retention in chest area?

Many thanks for your time ,
Marie

  1. I personally dealt with heart failure and the not being able to lay down while sleeping, short of breath walking or sitting, bending over coming back up short of breath etc. But it was all related to heart failure for me.


    1. i think you can search it on google for better result

      1. Hi. Thank you for sharing your experience as a caregiver. First off, your husband (as your father before him) is very fortunate to have a person like you caring for him. You are a very special person to be doing this kind of research on his behalf. And, as I'm sure you know, we cannot offer medical advice or diagnostics over the Internet. Still, your concerns are worthy of a response. It is interesting your husband is experiencing these symptoms despite tests showing no pulmonary disease, as a pulmonary function test would clearly show if he had those. If you are thinking your husband is having heart issues, a referral to a cardiologist may be in order. They are the heart experts who would clearly be able to get to the bottom of your husband's symptoms if indeed the heart is involved. What do you think? John. heart-failure.net community moderator.

        1. John, thank you for your kind words. I definitely have been struggling to get my husband referred to a cardiologist. I believe a second opinion on his heart and pulmonary testing is smart considering his breathing has gotten worse with the bending over symptom. I asked this of the VA ....and they insisted on doing another EKG to see if a cardiologist referral is warranted. They hooked him up and it was finished in less than 2 minutes. I realize EKG’s are not a lengthy process, but less than two minutes? We also asked for a zio patch to be worn for two weeks to monitor the heart since the stress test showed Premature Ventricular Contractions.


          The VA also refused a broncoscopy after a CT of lungs showed nothing but a small polyp. Citing its “too invasive”......I’m feeling like his continued breathing issues warrant further investigation, even if the procedure is invasive.


          I realize no one here is a Doctor nor can offer medical advice, but you all are certainly experts on listening to your own bodies and symptoms. I asked about the Bendopnea symptom because it can be a symptom of heart failure that’s worsened. I only wondered if anyone in the community has had the symptom themselves apart from breathing issues while lying down.


          I also wonder how long it took and what testing was done to come to your diagnosis of heart failure? It seems there is no gold standard for diagnosis which is shocking to me?


          Hope you are doing well,
          Marie

          1. HI. I am doing well, thank you. And Thank you for the update. It sounds like a great idea to have an EKG done followed by a Zio patch. Those are two procedures that I do in the hospital setting, and they are both pretty simple -- and can provide some great information for your doctor. Even though your doctor doesn't believe a bronchoscopy is indicated, it never hurts to ask. Usually, doctors won't order bronchoscopies unless something questionable shows on an x-ray or cat scan that needs to be further investigated. Sometimes, it can be easy to come to a diagnosis. Although, as you and your husband are experiencing, sometimes it takes some time and investigating -- as is the reason for the EKG and Zio patch. Hope all goes well for you and your husband moving forward. Please do keep us posted when your husband's test results come back. Or, check in also if you have other concerns or questions. John. heart-failure.net community moderator.

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