Pulmonary Hypertension

Posted by Mary D @maryd, May 26, 2018

I'm wondering if anyone has been diagnosed with pulmonary hypertension and would share what type it is, the symptoms they had, and their journey to a diagnosis. The more I read about it, the more I am convinced that I have it but the doctor's just keep repeating echos and telling me they are normal. They will not move on to an invasive test like a right heart cath but from what I've read, that might be the only accurate way to diagnose it.

@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

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I've had a cath through the groin and it was not bad at all. You feel the sting when it first goes in, but it's only a little more than a regular shot. Afterwards, I just had to rest and be careful for a day.

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@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

@carolkel– I had to have left cath because I was having a HA and my LAD (Left Anterior Decending) artery was 100% blocked so it wasn't like I had much of a choice. I was fully aware of getting poked with that slight sting as others have mentioned and it was just fine.
I was awake for the whole procedure and had 2 monitors in my way from seeing anything. At one point I needed to scratch and proceded to do that and all of a sudden a god like voice was heard saying Mr. … I am working on your heart at the moment and if you need to scratch, we have someone that can do that for you. Okey doke! Things went well after receiving a single stent and I even got a DVD of the procedure from my Dr.

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@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

Hello racerjon. I had the right heart cath. You might not have read my post from June 19th. Thanks for following up.

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@kanaazpereira

Hi @maryd,

I'm tagging fellow members @tvashon @kashanimn @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

Jump to this post

Hello carolkel. I recently had a R heart cath thru the jugular vein in the neck and was told that they primarily do this to check pressures within the R side of the heart when they suspect pulmonary hypertension. The pain on insertion of the catheter was awful and it hurt the entire time during the test. They can do the R heart cath while awake and pedaling bike pedals to see if exercise causes the pulmonary pressure to abnormally rise. They discovered exercised induced hypertension during my test although that is not the primary reason that they to the test. They can also clip some heart tissue for a biopsy if they suspect inflammation or infection in the heart from a myocarditis. I had a left heart cath in 2006 thru the groin while awake. I felt no pain. I was told they do the left heart cath to primarily look for blockages in the coronary arteries and to identify the existence of anomalous arteries. They also measure pressures within the heart. If certain pressure are high it may indicate a problem with the heart valves. In 2006 I recovered from the left heart cath well and went home in a couple of hours. I hope this helps. Good luck with everything! Please let me know how things went if you decide to get the left heart cath. Thanks.

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just got the diagnosis the other day after completeing the testing and the right/left heart cath. still have to have a face to face appt w/pulmonologist..waiting for the date. he says it’s moderate to severe…anyne know the prognosis as far as life expectency? not too sure about the oral med, as i had a liver transplant a little over a year ago and the meds can cause liver problems..one thing after another, but my motto is ‘this too shall pass’..any info would be greatly appreciated. thank you

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@teakettle2

just got the diagnosis the other day after completeing the testing and the right/left heart cath. still have to have a face to face appt w/pulmonologist..waiting for the date. he says it’s moderate to severe…anyne know the prognosis as far as life expectency? not too sure about the oral med, as i had a liver transplant a little over a year ago and the meds can cause liver problems..one thing after another, but my motto is ‘this too shall pass’..any info would be greatly appreciated. thank you

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Hi @teakettle2 welcome to Connect! You may have noticed I have moved your post to this thread on Pulmonary Hypertension so you can read what others have said about their experience with this condition.

I wanted to share this link that gives an overview of Pulmonary Hypertension: https://www.mayoclinic.org/diseases-
conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

Your motto is a great way to look at this recent news and I hope it is bringing you comfort at this time.

I wanted to tag the @racerjon @cognac @ornelasrebecca and @lyndylou as they have discussed living with pulmonary hypertension in the past and may be able to offer advice or support for you.

@teakettle2 what symptoms are you feeling that led to you getting the test for done for pulmonary hypertension?

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