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Has anyone experienced sudden severe onset of symptoms?
I have PAH. I was diagnosed a while ago. This past November my husband came home after doing a construction project and complained that he was very short of breath. By the next day, he had severe edema in his leg and said that he felt like he had fluid in his chest. I used my pulse oximeter on him and he had a 78% sat. I put my oxygen on him immediately and got him to the hospital. Long story short, he was in heart failure and after 2 weeks they sent him home to manage the edema with lasix. My husband has a long medical history including a kidney and pancreas transplant, as well as advanced vascular disease. It is not uncommon for people with kidney issues to have edema, but his kidney function has been close to perfect. So the cause of all of this was a mystery. After more testing, they came back with stenosis in a valve that needed to be explored further. They ordered a transthoracic esophageal ultrasound and a right heart cath. Another long story short, the stenosis wasn’t that bad BUT his right heart pressure was at 80. So he’s been diagnosed with PAH also. They suspected that the AV Fistula he’s had since he was on dialysis before the kidney transplant may have been causing a strain on the heart, so they tied off the fistula today and we wait to see if there is any improvement in his symptoms. He has had sleep apnea, a pretty severe case, for years without treatment, but has had CPAP for about a year now. So I get that these things can cause PAH. But the onset is puzzling.
My question is this, my journey to diagnosis was so radically different from this that we are very confused. I had symptoms for a long time and edema, couldn’t go upstairs without stopping to breathe, the only time I didn’t have shortness of breath was when I was sitting doing nothing. I went all through Pulmonary rehab and have talked to a lot of people with PH. I have never heard of this. He had issues with edema for years but no problem with shortness of breath. The only breathing issue he ever had was when the edema would get bad at night, he would need to sit up until his lasix kicked in. But this was an occasional experience. He could go upstairs, he was bike riding last summer – no shortness of breath. I have never heard of a person going from being able to breathe one day and needing 24/7 oxygen at 4 liters the next day.
My other question is whether anyone has heard of this type of onset happening after lung exposure to something. The day this happened he had been cutting ceiling tiles with some type of electric saw and he said he breathed in a lot of dust. He was not wearing a mask. Before that day he could breathe, from that day on PAH.
It is crazy enough to think that we both could have PAH and beyond imagining how we are going to deal with it, but there has to be some answer for how this could happen this way. Any info or insight anyone might have is greatly appreciated.
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1 Reply
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Hi, @Ellen Driscoll; your post about your hubby is frightening. Thankfully, you knew what to do and got him to the hospital. You know we all have different pasts with our diagnosis, but mine was more like yours. But my hubby, Manny, had been cycling long hauls and working out several times per week. He came home one day and was “off.” He was complaining of chest pressure, edema, and noticeable SOB. I made an appointment with his PCP. He had no major health issues except asthma. He sadly had blockages and had stents put in the following day.
But with your husband’s already complex health conditions, like you, I feel this came on quickly. Did you tell the doctors anything he could have been exposed to that day? Do they have a plan for him yet as far as treating him?
This has to be insane, but I’ve heard of this happening on at least one other occasion. Please do keep us posted on him and you, too. How can we best support you right now, my PHriend? Hugs, love, and extra positive vibes and prayers, my PHriend.
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