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Very Confusing Recent Diagnosis
Hello, my son is 14. He has had lung issues most of life requiring oxygen on and off. He ended up getting diagnosed with asthma years ago. He had a hole in his heart that was repaired 4 years ago. Which seemed to have made him require the o2 less. He went in last month for throat surgery. Of course he ended up requiring o2 afterwards and by day 4 they did an echo and his pressure was at 66. The on call cardiologist told us that 3-4 years ago his pressure was at 30. We were never told this. So we were irate thinking he could have been getting treated all this time. I asked his pulmonologist if he has in fact been diagnosed with PH and he said yes and I told him about the pressure being 30 years ago then he said he had mild PH then. So now we follow up with our cardiologist and he does an echo and tells us he sees no evidence of PH. We asked him what was the measurement and he said it was “immeasurable” as it was so low??? So he says PROBABLY not PH. I then asked about his pressure being at 30 a few years ago and he said “a measurement of 30 is NOT PH”. That is very different than what I have been reading!! I feel more confused now than before. Should I go for a 2nd opinion with another cardiologist?? I want to be excited about him not having PH but I also want to make sure!!
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8 Replies
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Oh and he is currently requiring o2 while he sleeps.
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Hi Ann,
speaking from my own experience, I had high pressured prior to a VSD repair has a child and after the surgery they returned to “normal” . I too always had shortness of breath that they labeled as “asthma” and recently found out that my oxygen levels drop into the low 80s and high 70s with just a minute and a half of exercise without even reaching my exercise capacity. They also found that within this minute my pressures went into the 30s and I am considered to have exercise PH. I would suggest talking with the doctor about a possible exercise heart cath, this is how they found my pressures increasing, especially if he is having symptoms still. I know that this diagnosis is scary, and if your gut is telling you to get a second opinion then take all of his records and follow what it’s telling you. I have had numerous opinions and now am feeling comfortable with my team. With the mild PH, all they are doing for me is breathing treatments, heart medications, and oxygen therapy. I am not on medications for PH specifically like many on here. -
Thank you so much for sharing that with me Brittany! I hope to talk with his Pulmonary doctor soon.
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Hi Ann,
I’m so sorry your family is dealing with confusing messages. I was born with a congenital heart defect and my cardiologist dismissed my complaints of shortness of breath until we got a second opinion. It still took that doctor 6 months to diagnose me, but that was back in 2000.
Only a cardiac catheterization can diagnose pulmonary hypertension. Echo’s are not always accurate. Above 30 is PH. Make sure you get the cath done at a medical center that sees pulmonary hypertension patients. My first cath (at age 6) was a nightmare (I was awake the whole time) and everyone was very surprised by what they found.
Glad you are reaching out to us and other patients. You will find lots of support in this community, and there are treatments available, and more and more research being done.
I’d recommend avoiding Google searches if you can. Find information about PH on our main site and phassociation.org.
Sending virtual hugs to you and your son!
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Thank you Kathleen! I spoke with his Pulmonologist today and no one is wanting to do a cath at this point. He confirmed that when he had the pressure of 30 a few years ago that that is PH. I am confused as to why the cardiologist doesn’t agree with that! The Pulmonologist said since he is still on the o2 at night and if he in fact he does have PH the o2 is the best medicine for him and that could have brought the pressure down. So he agrees to just wait out the 6 months for the next echo, which I tried to get him to do one earlier than 6 months but he didn’t want to step on anyone’s toes as he put it but that he agrees that is a fair time to wait. So I guess now I just need to trust the doctors and I will wait it out and see what the next echo says and hopefully he will be off the o2 by then and we will see the difference. Thank you for the replies 🙂
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Hi Ann,
As I said before too, I am on oxygen full time and at night with a bipap machine. The oxygen definitely helps me through the day and when I am wearing it as I’m supposed to it gets rid of a lot of the symptoms for me and takes the stress off the heart which in turn helps with the pressures. Helps the heart not have to work as hard and gives my lungs a much needed break. I know it must be hard for him to be on the oxygen, but as someone who is on it, I totally can relate. He can reach out here as well if he wants to join the forums too! There is a group for teens and young adults and I’d be happy to connect with him. 🙂
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Hi Brittany, thank you! He is chronologically 14, but has developmental delays, so he is a lot younger mentally and doesn’t know about all this. He wouldn’t understand it yet, but thank you very much 🙂 I will stay connected here until I get some definitive answers.
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Hi Ann,
please do! We certainly aren’t doctors or even in the medical field, but I can always share my experiences and own stories with you any time ! I’m glad you found us here 🙂
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