What can you tell me about Pulmonary Hypertension?

[tonycog]

Hi

I've posted about my heart issues; I had Atrial Fibrillation that was finally treated by an ablation 6 months ago. It was my initial AFib diagnosis that led to my sleep study, which determined that I have CSA, namely Cheyne-Stokes respirations during sleep. This is being treated by my BiPAP Auto SV, which I have been 100% compliant for 21 months now. The Cheyne-Stokes issue is completely unexplained - no congestive heart failure, no head injuries, none of the other usual culprits that can cause Cheyne-Stokes.

The ablation seems to be working so far; no AFib for 6 months now. I have continued to have some symptoms at times that are not from arrhythmia - slight shortness of breath, fatigue in the limbs, general tiredness. My cardiologist did a heart catheter two weeks ago and ruled out any blockages. He referred me to a pulmonary doctor to continue to search since it appears that my heart is working fine.

The pulmonary doctor's assistant called me last week to schedule an appointment. When I asked her specifically what they would be looking for she told me "Pulmonary Hypertension." I didn't know anything about this and assumed this was some blood-pressure related thing. Then I got home and asked Google what this thing is. The stuff I read really scared me. Pulmonary Hypertension is some bad stuff with no cure, just drugs and other therapies that "may" help some. It happens when the arteries in the lungs shrink, which increases blood pressures in the right side of the heart, causing it to work harder. (My layman's understanding.) It will be two months before I see the pulmonary doctor and do the testing, so I get to wait while I imagine the worst-case scenarios.

I've read a very minimal amount about this thing. Does anyone here know much about it, or perhaps have it? Anyone successfully dealing with it, living a reasonably "normal" and active life-style?

Many thanks,
Tony

[tonycog]

Anybody?

[HoseCrusher]

Tony, That is a very serious condition. However there are some things that can help.

First a caution... Don't get pregnant. That can make it worse.

Also, keep in mind that I am not a medical professional, so you should do your own research and run it by your doctor for clarification.

With that said, I believe that many people are deficient in vitamin D. This causes other imbalances in the body including lower levels of magnesium, calcium, and phosphorous. All of these are important in the body, so there has to be a balance. Testing and supervision is needed to achieve and maintain this balance.

My suggestion is to start with a vitamin D test. If your levels are low, you can add some vitamin D. This is where there can be issues. Simply adding some vitamin D can upset the balance of magnesium and calcium in the body, along with other things. Many people also have low magnesium levels and there are times when increasing vitamin D can lead to even lower levels of magnesium. This brings up adding magnesium.

Magnesium gives different results depending upon if it is taken alone or in combination with calcium. In order to relax the blood vessels (hoping for a reduction in the pulmonary hypertension) you have to take it by itself. Magnesium Malate is a good form to take and magnesium oxide is the form that is the hardest for the body to absorb.

The body needs a balance of both magnesium and calcium, so you have to come up with a plan to keep this balance.

In addition, there are some other herbs that can be beneficial.

Here is some information on both conventional and alternative treatments.

http://www.umm.edu/altmed/articles/pulm ... 000133.htm

Most doctors focus on conventional approaches, but many will "tolerate" an alternative approach as long as you disclose your alternative approach so they can understand any changes that may occur. There has been some success using magnesium with infants and the results are promising, but I am not sure if it has actually made it through clinical trials for official approval.

My perspective is to try the alternatives and have a test to measure progress. If things are getting worse, you then have your choices narrowed down to using drugs.

[PST]

Tony, I will share what I think I know, but I'm not a doctor and I've never been diagnosed with pulmonary hypertension, so caution is justified (as always) in taking advice from strangers in a forum. As you note, pulmonary hypertension is high blood pressure in the circulation of blood being pumped from the right side of the heart to the lungs. Therefore it doesn't show up as the kind of high blood pressure measured with a cuff on the arm, which is the pressure of blood pumped from the left side of the heart to the body. Pulmonary hypertension can result when, for any reason, it is difficult to push blood through the lungs. This can happen, for example, when the lungs have fluid in them.

I don't know anything about central apneas, but obstructive apnea can lead to pulmonary hypertension. It starts with the drop in oxygen saturation we experience when we stop breathing. The body reacts by taking steps to increase the level of oxygen. The arteries running from the heart to the lungs divide into numerous arterioles that extend to all parts of the lungs. It is in capillaries connecting to these arterioles that oxygen exchange takes place. Most of the time, when we are at rest, only part of our lung capacity is needed, so it is not necessary to circulate blood to the whole extent of the lungs. Muscles controlling the entry of blood to the arterioles are relaxed and wide open. Blood follows the path of least resistance and does not reach all parts of the lungs. When oxygen saturation drops, these muscles constrict, creating resistance to blood flow.

The analogy that comes to mind is air conditioning in my tall, narrow house. If all the registers are wide open, most of the air flows out from the ones on the first floor, near the furnace, and I never get any cool air on the top floor. If I want air upstairs, I have to go around and partially close all the registers, so the pressure in the system can push air to all corners of the house. Similarly, when the body is short of oxygen, the muscles controlling the flow of blood into the arterioles in the lungs contract, so that blood flows to all parts of the lungs, not just the parts easiest to reach. It seems like a paradox. Why limit blood flow if you want more oxygen? But it makes sense if the goal is to get all parts of the lung into the act. The constriction forces blood to follow all the pathways through the lungs, and thus to have extra opportunity for oxygen exchange.

The price of this is higher pressure in the pulmonary circulation. The constriction forces the heart to push harder, which is pulmonary hypertension. If I understand correctly, for those of us who suffer those drops in oxygen saturation over and over again, in time this becomes a chronic condition. The heart's reaction is something called cor pulmonale, an enlargement of the right ventricle of the heart and thickening of the wall, which diminishes the work it can do. It is much like what happens to the left side of the heart over time with ordinary high blood pressure. The sooner the cause is relieved, the less damage is done.

One symptom of pulmonary hypertension is edema, the accumulation of fluid in body tissues. If the right side of the heart has trouble pushing blood through the lungs, then it has less capacity to receive blood returning from the body to the right atrium of the heart. When I take my socks off these days and see how deeply the elastic has bitten into my calves, I worry I may have done the right side of my heart some harm before I got myself on CPAP. It is one of the symptoms that keep me masking up each night.

[Slinky]

There are a couple of online PH support groups - one of them considerably better than the others - and fat lotta help I am I can't remember if I even saved the URL or if I did WHERE I saved it. I have COPD so PH wouldn't be a surprise Dx. A couple of doppler echocardiograms have been suspicious for PH but in reading the online support groups' information one does NOT have and can NOT have a PH Dx unless or until a particular test is done. I forget the name of the test but it is somewhat like an angiogram (??). They have to run a catheter from a vein/artery at an extremity (I've read groin and I've read wrist) to the heart and then they measure pressures. Only then can PH be Dx'd. (I decided I wasn't that interested in a PH Dx so didn't pursue the issue any further). Heck, I figure the doctors will come up w/the idea on their own eventually if that is the way things end up going for me. I'm certainly not going to rush the issue. Having COPD I can only assume that PH in an inevitability eventually.

PST, thank you for your explanation. You and I were posting at the same time but you beat me to Submit. Yours is pretty much the same explanation of PH as I had gathered. But you've simplified and clarified.

[needzzzzs]

Tony,

There is more than one type of pulmonary hypertension.

Here's a link to some info from NIH that explains it:

http://www.nhlbi.nih.gov/health/dci/Dis ... ments.html

The page below has a collection of other articles about pulmonary hypertension, from a variety of good quality medical info sources. I'm a medical librarian, and MedlinePlus is always my first recommendation for info for someone who is not a medical professional, because I know that the info comes from organizations who know what they're talking about.

http://www.nlm.nih.gov/medlineplus/pulm ... nsion.html

Good luck with your testing -- hope something more treatable than PH will be the explanation for your symptoms.

Debbie

[tonycog]

Thanks to all of you for your replies. I will be getting at least three tests: Chest XRay, a "V/Q scan", which is what I think Slinky was describing. It sounds like it is the pulmonary equivalent of a heart catheterization. I will also be doing what they called a "six minute walk", which appears to be just that; I will walk for six minutes. The walk involves laps around some measured area. They will measure how far I walk in six minutes. They also monitor various vitals. After these three tests I will see the pulmonary doctor. This is being done at the University of Kansas, right down the hall from my EP/Cardiologist, who I think is great and I trust a lot, so I have a lot of confidence in the doctors who will be checking me out.

I have two months to wait for all of this. I'll read more, but this disease is scary enough that I only read it in small doses. Too much freaks me out and I stop dwelling on what I actually know and dwell on what my imagination comes up with.

Thanks all,
Tony

[diboja]

Thanks to all of you for your replies. I will be getting at least three tests: Chest XRay, a "V/Q scan", which is what I think Slinky was describing. It sounds like it is the pulmonary equivalent of a heart catheterization. I will also be doing what they called a "six minute walk", which appears to be just that; I will walk for six minutes. The walk involves laps around some measured area. They will measure how far I walk in six minutes. They also monitor various vitals. After these three tests I will see the cardiologist. Tony

Sounds like a familiar pattern which my spouse went through.
My wife has heart issues - she was born with a congenital condition - and has experienced heart arrhythmias for many years and particularly getting worse as she gets older - annually we would have to go to the hospital ER at least 9-10 times a year for electrical cardioversions. She is not a candidate for an ablasion.

Last year after extensive tests they found that she had pulmonary hypertension and she has been treated with a oral calcium channel blocker.
So far, so good, her arrhythmias have subsided to a large degree and her lung pressures have dropped.

Look on the bright side....you are going through some good solid care...and they will probably come up with a plan to fit your condition.
Lung pressures can be brought down - that is for sure.
Each person will be different and what may be good for my wife may not work for you....but be assured that your condition will probably be taken care of.
Be encouraged by the good medical care you are receiving and stop reading all the gloom and doom on some of those internet sites!

[Slinky]

Thank you for jarring my memory. There is primary pulmonary hypertension and secondary pulmonary hypertension and at least w/secondary PH if the underlying cause can be corrected or cured the PH is also cured as I remember it. As there is no cure for COPD only pallative care I just saw no reason for me to worry about PH until and when I encountered it.

[Gerald?]

Tony

I was diagnosed with PH at the same time as my OSA. Apparently it is a fairly common cause with severe OSA. The good news for me was that on 6 months of CPAP, it reversed itself and everything is working fine again. Here's hoping your 21 months might have done some good and you get a nice surprise from your test.

[tonycog]

Tony

I was diagnosed with PH at the same time as my OSA. Apparently it is a fairly common cause with severe OSA. The good news for me was that on 6 months of CPAP, it reversed itself and everything is working fine again. Here's hoping your 21 months might have done some good and you get a nice surprise from your test.

Thanks. That's good to know and I'm happy for you. The problem/concern for me is that I'm having symptoms right now, and before Bi-PAP therapy I had no noticeable symptoms to indicate anything (until my first episode of AFib hit, out-of-the-blue).

Thanks,
Tony