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told I have Pulmonary Hypertension, based on an echo from last April
So today I saw a cardiac nurse was told I have Pulmonary Hypertension, based on an echo from last April. So I’ve had it for seven months and they didn’t mention it until I asked about the PAP of 39mmHg. And then I’m told I won’t see a cardiologist until March April or May. So my insurance company thinks it’s just fine to leave me untreated for a year or more?
I’ve been telling them since March that If I attempt to stand or walk over 5 – 7 minutes I end up in ER.
1. Unable to function due to extreme fatigue.
2. Had to buy a walker so I can sit down when unable to breathe.
3. Must sleep with pillows at a 45 degree angle or cannot breathe.
4. Unintended weight loss of 20 – 30 lbs.
5. Cannot breathe at high altitude and have to sell our mountain cabin.The nurse refused a repeat echo and refused a right heart cath. She prescribed Lasix, and I have no swelling.
Does any of this make sense? What can I do?
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4 Replies
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Sarah,
I am so sorry that you are having this trouble . If I were you I would ask your primary care provider or another doctor if they can help you to get the appointment moved up to earlier. It sounds like your symptoms are very disabling right now and you need some help. I have also gone the ER route and have just been admitted before to expedite a plan and treatment or to expedite testing. I have been told to do that by my doctors if things feel like they can’t wait. Especially with your level of fatigue and breathlessness. Did they do a walk test at all to check your oxygen levels with activity when you spoke to the nurse? Sometimes the nurses can do this test too. It only requires an oxygen monitor . I would even suggest buying a pulse ox monitor and seeing for yourself and then taking pictures of your levels of oxygen and heart rate before walking vs after. -
Sarah,
I would highly recommend pursuing a PH Specialist. Here is a link that could maybe help you find one close to you.
https://phassociation.org/patients/doctorswhotreatph/ -
Thank you Brittany and Colleen,
I contacted Loma Linda’s Pulmonary Center to be seen paying cash, and they said I need a denial letter from my doctor. I messaged both my pulmonologist and cardiolgist to ask for a denial letter and they have scheduled another echo for tomorrow.I’ve never had a six minute walk test. Twice I’ve had them walk with me wearing an oxometer but only for 3 minutes.
I asked for a follow-up apt. after the echo and they were not able to schedule me with a cardiologist but I will be seeing the cardiac nurse. I will buy an oxometer.
I saw on my records that I have both left atrial enlargement and mitral valve enlargement, so I’m wondering if either could be causing the PH.
Thank you both!
Sarah-
Sarah,
Please keep us updated on how everything goes with the doctors and scheduling your other testing. I would see if they can monitor your oxygen levels while you are walking at your office visit too. This will help them see if you need to be given oxygen or anything to help you when you are active since you are having so many symptoms upon exertion. Let us know how you make out please !
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