Questions about Pulmonary Hypertension

[Lily]

There have been a few interesting threads here recently about PH. I tucked a few points away in my mind. Wondering. But didn't really think it applied to me.

Anyway, I finally dug out my bicuspid replacement operative report, and some of the test reports from that time. I hadn't realized that I was diagnosed with PH before the valve replacement. I do recall reading it, but at the time hadn't realized that it wasn't just a fancy name for regular hypertension and I had just disregarded it. (Pretty dumb, huh?)

Now my valve is having some issues. I'll post about it on one of the Medtronic threads. But I'm wondering if there might be more going on than I would like to think.

From what I've very recently read, one of the worst things a person with PH can do is fly in unpressurized air cabins without oxygen, making quick dramatic changes in altitude. During the past year, I have fully embraced my husband's hobby. Mr. Toad's Wild Ride. We fly a lot.

A few months ago on a very hot day at a high altitude (which increases measurable altitude because of a situation called density altitude) I suffered some angina. That, with a lot of new dull headaches, puzzled me. . . until I read about PH and unpressurized cabins.

After the angina episode, my husband bought an oxygen saturation monitor to check me while we were flying and I was at 82%! I'm now flying with an oxygen cannula.

Sorry for all the thinking out loud. But here are my questions:

My newest echo doesn't mention PH. Could it be completely gone after my valve replacement and possibly not come back?

Or might it have never left?

Would they see PH on an echo if they weren't looking for it? All the echo tech looks at now is just my aortic valve and area.

I'm wondering about all of this because my pressure gradients have changed dramatically, all of a sudden this past year. And my cardio doesn't know that we fly. Is there any kind of relationship to high pressure gradients and PH?

My only other change in an otherwise average-stressful year, was a change in a hypertensive medication which had caused some cumulative issues with me, namely, recurring upper respiratory infections and mineral imbalances leading to arrhythmias. When I changed that medication, my heart felt stronger; I'm sure the other med was controlling or inhibiting my heart -- either for good or bad, I don't know.

But I have wondered if my flying or the med change might have contributed to the pressure gradient change, or maybe just because the valve is getting smaller and is now considered, as per the echo, as "abnormal." Happy thought.

This is probably difficult to read. My thoughts are kind of bewildered about it all. I don't know if the chicken or the egg comes first here.

My cardio had verbally told me that everything was about the same as the previous year; but when the echo report came in the mail a couple of days later, it had the ominous conclusions on it. So I haven't asked him about these things specifically. He gave me another annual appointment and I was just very happy about that and don't want to go back yet if I don't have to.

Any thoughts please?

Besides, "Ask your cardio?" He's so busy that I may just write him a letter about it. That's actually how I finally presented everything about the old hypertensive med to him last year, through a letter; but when I saw him in August he seemed surprised at the change saying, "Oh, they changed your med." I thought he had, not "they" had. I don't know who "they" might have been. He's that busy. But we really like him.

Anyway if you read this far, thank you; I appreciate it .

 

[Nancy]

This site has a very good overview in layman's terms and has all the acronyms and measurements. PH is a combination of a couple of different pressures, then it is divided so it is basically an algebra equation.

http://www.chfpatients.com/ph.htm

And here are the Pulmonary Hypertension Assoc. website forums and regular pages.
http://www.phassociation.org/Message_Boards/main.asp?board=1

http://www.phassociation.org/

This one has a more involved description and explanation of measurements.
http://www.phassociation.org/Medical/Advances_in_PH/Winter_2005/manage.asp

I would think that your echo and/or TEE would have mentioned PH if the numbers were high enough to mention it.

However, it might not be mentioned per se, but rather give the measurements and let the doctor interpret. In that case, you would have to do some of your own sleuthing and equations.

I think the best thing to do would be to ask your cardiologist about this and also tell him about how you are feeling when flying sometimes.

That being said-- as you no doubt have heard my rants, Joe was never told about his severe PH. We wouldn't have known what it was anyway. Like you, I am sure we would have thought about regular hypertension, and that his meds were taking care of that.

Not so. His card was satisfied not telling him a thing about it, not doing anything to treat it and probably the worst thing, was ignorant about it himself. Joe almost died. As luck would have it, during one trip to the ER, there was a substitute card who knew all about PH, and he filled us in and told us to get Joe help immediately. He saved his life.

Now, I am not saying that you have it, I wouldn't know that, but I do think you should be asking about it, and most importantly, you should tell the cardiologist about your reaction to high altitude w/o pressurized air. And I wouldn't be shy about really quizzing him/her about it. If you find out you have it, and are getting the brush off, then you must get a PH specialist.

But first things first. See what your doc says, and find out if it is something to worry about.

I would also ask your questions on the PH forum. They are nice folks and VERY knowledgeable.

 

[kfay]

Susan, I'm sorry you've started developing issues with your valve. I'm certainly no expert on any of this stuff, especially PH (thank goodness). As you know, Nancy on here has had a lot of experience with PH and is probably the best person to direct you.

I can relate to you a couple of conversations I had with my cardios and surgeon at the Mayo clinic before my surgery. They were concerned that due to the state of my heart, I had PH. They told me at the time, if I did have PH, and it was mild, there was a chance it would go away once I had my surgery. Luckily, I did not have it. Since my surgery, I have had a couple of conversations with my cardio about the timing of replacement of the porcine valve that I now have. I haven't exactly gotten a straight answer about how I will feel during that time, but my understanding is that once those gradients go up, you can start feeling pretty bad and even worse than you did when you had your original surgery. My gradiant was a 5 earlier this year and she told me that when it gets to a 10, it will be time to start looking at a replacement. You may want to talk to Bob (tobagoto) since he just had his porcine valve replaced earlier this year and ask what his experience was like.

I definitely would get in touch with your Dr. and ask him your questions regarding flying and your PH. You shouldn't sit around and worry needlessly, or is there is some reason to have concern, you should know that too.

I wish you the best.

Kim

 

[Nancy]

Lily-

I left out something important. The true measure of PH is not an echo or even a TEE. It is a right heart cath. That will give the most accurate readings for PH.

 

[Lily]

Thank you both very much for the replies and helpful links and further information, Nancy and Kim .
I appreciate it more than you know.

If anyone else has anymore information or experience to add or to offer, I'd appreciate reading it.

I probably do need to think out a good letter to my cardio, detailing my questions and specifically addressing the flying and my decline over the last year. It never dawned on me that the cardio might need to know about they flying until I was reading about PH on the American Heart Association page recently. And I think I may ask the PH Association forum people some of these questions too.

Telling my cardio about the flying reminds me too of the strange resolution to my problem with the old hypertensive medication.

I had been having some various medical issues but had logically gone to my family doctor for them. To me, they didn't seem to be connected to each other or to anything else. And the local doctor evidently wasn't aware of the side effects of the hypertensive medication [that the more distant cardio had prescribed], nor was I.

It was my clever pharmacist who put it all together, seeing what the local family doctor was prescribing to try to help me for my various ailments, and the cardio had prescribed some minerals also, but it was the pharmacist's being aware of the med's side effects that made the difference.

So, my problem may have dragged out longer because I hadn't given all the information to my cardio that he could have put together to solve my issue.

Similar problems probably happen to a lot of people, between their various doctors. You know how we all probably read up on a medication when we begin it but then think, "Oh, I'm not having these side effects," and we might not give it anymore thought, even when they gradually come upon us.

 

[njean]

I'm being treated for PH by a specialist Susan. In fact, I went for a follow-up appt with him today.

I have had 2 Right Heart Caths, within the last two years one in June/2007 & the other one was in the latter part of 2008. Both times, my Pulmonary Pressures measured 88mm & 82mm respectively. This is quite high!

So my cardiologist suggested I start taking a medication called "Revatio" to help relieve these pressures. I started taking it in May of this year (2009) but could not tolerate the 60mg that he had prescribed so I cut it back to 40mg & still found I couldn't tolerate that. So, I have been taking only 20mg & even at this reduced dose, my pressures have dropped significantly.

My cardio did an Echo about a month ago & the PH measured 46%! Now, I'm still a bit skeptical about this because I know that a true reading is through a RHC, but I have to admit that I have been feeling better & I've noticed that I even shed some pounds due to less water retention.

Here recently, I have started using oxygen at night because the last time I went to see the PH specialist, my levels were low. He ordered a home test for me one night & my oxygen levels dropped to the low 70's for 4-1/2 hrs. which is pretty low.

Today, when I went to my appt. I told him that my low-grade headache that I had almost every day, was gone & he said that that was probably attributed to the low oxygen levels I had at night. He also wants me to increase the Revatio to 40mg a day. I am going to start that tomorrow & hope for the best.

Also, late this summer we went on vacation to a campground in AZ which as 9200' in elevation & I thought the CHF had returned with a vengence. I was SOB, couldn't lay flat to sleep & just felt awful. We had to leave early & as soon as we started reaching lower elevations, I started to return to normal or almost normal.

I have never had any issues while flying, in fact we flew last year to Anchorage & then to Austin this year & I didn't have a problem either time. And I pray that doesn't change any time soon either because we have a cruise planned & that would sure be a bummer.

So perhaps you need to ask your cardio to recommend a good Pulmonary Specialist & get checked out. As Nancy said, PH is managable but you need to go to someone that recognizes it & knows what to do about it.

Good luck & stay well!

 

[njean]

I'm being treated for PH by a specialist Susan. In fact, I went for a follow-up appt with him today.

I have had 2 Right Heart Caths, within the last two years one in June/2007 & the other one was in the latter part of 2008. Both times, my Pulmonary Pressures measured 88mm & 82mm respectively. This is quite high!

So my cardiologist suggested I start taking a medication called "Revatio" to help relieve these pressures. I started taking it in May of this year (2009) but could not tolerate the 60mg that he had prescribed so I cut it back to 40mg & still found I couldn't tolerate that. So, I have been taking only 20mg & even at this reduced dose, my pressures have dropped significantly.

My cardio did an Echo about a month ago & the PH measured 46%! Now, I'm still a bit skeptical about this because I know that a true reading is through a RHC, but I have to admit that I have been feeling a better & I've noticed that I even shed some pounds due to less water retention.

Here recently, I have started using oxygen at night because the last time I went to see the PH specialist, my levels were low. He ordered a home test for me one night & my oxygen levels dropped to the low 70's for 4-1/2 hrs. which is pretty low.

Today, when I went to my appt. I told him that my low-grade headache that I had almost every day, was gone & he said that that was probably attributed to the low oxygen levels I had at night. He also wants me to increase the Revatio to 40mg a day. I am going to start that tomorrow & hope for the best.

Also, late this summer we went on vacation to a campground in AZ which as 9200' in elevation & I thought the CHF had returned with a vengence. I was SOB, couldn't lay flat to sleep & just felt awful. We had to leave early & as soon as we started reaching lower elevations, I started to return to normal or almost normal.

I have never had any issues while flying, in fact we flew last year to Anchorage & then to Austin this year & I didn't have a problem either time. And I pray that doesn't change any time soon either because we have a cruise planned & that would sure be a bummer.

So perhaps you need to ask your cardio to recommend a good Pulmonary Specialist & get checked out. As Nancy said, PH is managable but you need to go to someone that recognizes it & knows what to do about it.

Good luck & stay well!

I forgot to add Susan, that the reason I have the PH issues, is because of the fact that my 34-year old mechanical mitral valve is not functioning the way it should due to scar tissue formation!

 

[rckrzy1]

I think Density altitude has very little or nothing to do with humans, just the amount of lift required . Kinda like wind chill has no effect on the temp at which ice forms. But I'm no expert.

 

[Nancy]

Here is a good overview.

http://en.wikipedia.org/wiki/Pulmonary_hypertension

Different types of PH from the PHA website. It is the WHO classification definitions.

http://www.phassociation.org/learn/what-is-ph/whoclass.asp

 

[Lily]

Norma, thank you for sharing the details of your experience. I'm very glad the medication may be helping your situation. 34 years ain't bad at all (especially compared to my six and counting) but I hope you get many, many more .

Adam, thanks; I'm no expert either, just a passenger and not a pilot, but apparently density altitude (which is defined as pressure altitude corrected for non-standard temperature variations) can make a big difference in the pilot (or in my case, passenger) as well as the plane -- specifically the engine and the lift and the thrust. Bear with me because I'm just learning some of this stuff and find it complicated. But high density altitude doesn't mean high density air pressure, but rather, just the opposite; it's directly related to high altitude and less oxygen molecules, or "thinner air." You climb higher and the air has less pressure, with less oxygen reaching your blood stream and your tissues, including brain and eyes, etcetera; but heat and humidity contribute even further to the situation. For example, in regard to humidity, from one of my husband's reference books, Cessna's Cleared For Takeoff, "The reason is that water vapor molecules are less dense than air molecules and the water vapor in the air cuts down on the number of air molecules available to deliver performance. An old pilot saying was even created for this one. 'Beware the three H's! Hot, High, and Humid.' Hot for hot temperature and high for high altitude."

Here are some links I found that had some interesting explanations, if anyone reading this finds the subject, and the related subject of hypoxia, interesting:

http://www.craggyaero.com/o2_systems.htm -- You'll need to scroll down past the items for sale for the info on this page; but it was very interesting, and explained in a clear but detailed manner.

http://www.auf.asn.au/magazine/hypoxia.pdf -- A very interesting magazine article on hypoxia.

Thanks again, Adam, because I benefited from doing this research. I also tend to drink very little water when we fly, which further contributes to my altitude reactions. Also, for those using oxygen, remember: DON'T USE petroleum-based products, such as vaseline or lipstick. Read the links, especially the second one. They can be very dangerous. There is also an old thread on here, from nearly two years ago I think, about a tragic fatality related to o2 use.
[edit - found it here: http://valvereplacement.com/forums/showthread.php?t=26857&highlight=oxygen ]

And thank you, Nancy for these links also. I found the second link very interesting in regard to all of the different causes or contributing factors of PH and I found the Wiki info very informative, but with complicated details.

 

[Lily]

Another question I had was related to whether secondary PH is seen more with mitral valve issues rather than aortic valve issues, I mean only between those two valves? I thought that was what I was seeing from various things I've been reading, but could be incorrect of course because this PH stuff seems very complicated to me. Anyone have any idea about that either?