Does PH ever go away?

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
G

geebee

I was going through my old medical records (10 years ago or more) and I found a report that I had not noticed before. Considering the size of my files, it is not surprising that one report was missed. In any case, the report indicated I had Pulmonary Hypertension. This was never mentioned to me then or since.
I have been having problems for the past year or so with increased SOB with activity, fatigue and/or just general malaise. My cardio says it is because I am out of shape and slightly overweight. I disagree with his diagnosis because I was in the same shape and weighed the same (or a little less) when I lived in California and did not have this problem
So, questions - Does PH ever go away? If I was diagnosed with it once, can it go into remission and show up based on where I live. In other words, does the area you live in affect PH (weather, smog, mold, etc.). I am also wondering (rhetorically, of course) why this wasn't mentioned when it was intially diagnosed.
Any thoughts would be appreciated.
Thanks, in advance.
 
If your PH is "secondary" to another condition, such as Mitral Valve disease, correction of that condition can lead to resolution of the PH. Mine was greatly improved by my valve replacement, although not completely resolved yet. I appear to be slowly heading towards normal, with the addition of a pacemaker and sleep apnea treatment.

Unsure why you wouldn't have been informed, unless it was found during investigation of the mitral valve.

If the PH is "primary", this means they are unsure of the cause. The area of PH treatment has seen major advancements in just the last 2-3 years.

http://www.phassociation.org/
 
The report does not discuss primary or secondary. All is says is "There is evidence of cardiomegaly with a mitral valve ring prostesis seen. There is evidence of pulmonary hypertension with prominent main pulmonary artieries". It also talks about a right pleural effusion "which blunts the right costophrenic angle" and "a small area of linear atelectasis is seen at the left base". I have little knowledge about what this all means.
Maybe I am worrying too much about an old report but I am just wondering if there is any connection to the way I am feeling now.
 
Hey Gee Bee...

Hey Gee Bee...

I also have Secondary Pulmonary Hypertension, which is almost back to normal thanks to the CPap machine that I am on for Sleep Apnea....I am wondering if they should do a sleep study on you to see if you might not have Sleep Apnea, and if you do, it does take getting used to the machine, but once your used to it, you would feel soooo much better....I hope you don't have it, but if you do, hopefully this will help the PH. Harrybaby :D :D :D :D
 
geebee said:
The report does not discuss primary or secondary. All is says is "There is evidence of cardiomegaly with a mitral valve ring prostesis seen. There is evidence of pulmonary hypertension with prominent main pulmonary artieries". It also talks about a right pleural effusion "which blunts the right costophrenic angle" and "a small area of linear atelectasis is seen at the left base". I have little knowledge about what this all means.
Maybe I am worrying too much about an old report but I am just wondering if there is any connection to the way I am feeling now.

I know about the cardiomegaly. My surgery report says I had, "moderate cardiomegaly." That simply means that my heart appeared to be enlarged on visual inspection. I was rather surprised at that.
The linear atelectasis means that a small area of unexpanded lung was seen-- apparently at the bottom.
I don't know how long ago the report was written, but the atelectasis might explain your SOB.
 
Wow, Gina, I can understand your concern. I don't have any answers for you but will be interested to hear if you ever do get any insight on this. I can speak for myself that after that terrible effusion after my surgery, I don't feel my lung function ever got back to normal. I've had a few lung tests at my GP's office, and it's still pretty low for someone my age. I get along o.k. and only occasionally feel SOB, but if you are now, I would definitely seek some advice from your cardio. Good luck, friend.
 
I know that ever since my last surgery I have always felt like sometimes I can't fully inflate my lungs. It's not all the time but, occasionally, I feel like I can only inhale to a certain point and then things are "blocked". I had some really bad moments walking in the hot weather this summer. The fact that is seems to be getting progressively worse is starting to really concern me. I guess it's time to start whining to the cardio. I was almost hoping it was being out of shape but I have to be honest and acknowledge that there is something else going on.
 
Here is the link for the PHA website. http://www.phassociation.org/

It is for the main page and there is a definition of PH. Then go over to the forum, the main one and ask your question there as well.

Joe has it. And his former cardiologist never even told us about it. It went on until he was in class 4 and about to give up the ghost. I can only surmise that the card had no clue about how to treat the condition, that there were new treatments and he probably thought it was something that was untreatable. We found out quite by accident when Joe was in the ER for some heart related thing, had an echo and we were told that he had PH and that it was severe. I found a specialist nearby and made an appt. Joe spent a month in the hospital and was put on a cutting edge (at the time) drug, Tracleer. And his other meds were rearranged and changed. It added years to his life, when we thought he didn't have a life.

At first, they thought Joe's PH was secondary but after extensive, and I mean extensive (similar to what one has when heart transplant is needed) testing, it was determined that his was primary, even though he has other heart problems.

The gold standard for testing PH is not an echo. It is the right heart cath.

I urge anyone who sees PH in their results to call a specialist and ask for guidance.

Most cardiologists and pulmonologists do not see enough PH cases to be able to help. It is a rare disease, but in the population here it seems to be becoming more common.

By the way, Joe's experience with his former card. is not unusual. Many people on the PHA website have had simialr things happen. Doctors fooling around until it's almost too late.

Secondary PH can go away if the underlying problem is taken care of. But it is impossible to determine whether it is secondary or primary without a workup from a specialist.

Shortness of breath, fainting or near fainting and even a bluish color to the skin are some symptoms. Weakness in the muscles is also felt by many, including Joe.

There are many very good treatments now which have changed this disease from an untreatable, progressive, and fatal disease to one that can be helped, and people now, can expect a much longer prognosis, and even a normal lifespan.

But it has to be taken care of. It is not caused by mold or stuff like asthma. It can be caused by diet drugs like FenPhen, autoimmune problems, living at high altitudes, heart problems and even genetics and several other things. It can also have unknown causes.

It is not the same as ordinary hypertension. Getting that under control, will only have a small change in PH. They are different things. It is an overproliferation of cells in the pulmonary vessels.
 
geebee said:
The report does not discuss primary or secondary. All is says is "There is evidence of cardiomegaly with a mitral valve ring prostesis seen. There is evidence of pulmonary hypertension with prominent main pulmonary artieries". It also talks about a right pleural effusion "which blunts the right costophrenic angle" and "a small area of linear atelectasis is seen at the left base". I have little knowledge about what this all means.
Maybe I am worrying too much about an old report but I am just wondering if there is any connection to the way I am feeling now.


I asked my husband about the "right costophrenic angle" --right costophrenic is the right outside portion of the lung--apparently the effusion was exerting pressure on it.
 
John has PH, he had taken 'redux' , so I did go digging for info.
It at a time was rare, ppl in Tibet ,etc frequently had this. Upper elevations affect it.A person suffering from PH does much better at lower elevations.
With proper meds , exercise , watching his diet. He is stable. Last exam showed no improvement, but no gain in his mean pressures . Good news.
I also had PH before my valve replacement..severe.as you Geebee,I was not told this and found it in my reports... :eek: , I freaked!!!!Called and spoke to Dr..it was caused by the regurge from my mitral, new valve fixes it.. but like you I also have severe sob.. cant do much..makes you wonder. Is it gone?
As Nancy stated most Drs havent any idea on how to treat PH, it was so rare that not many studies were done.
Diet pills have changed this, and now it has affected many ppl.
When I mentioned Traccleer to Johns Drs..they looked at me like I was an idiot.
Some Drs dont like you to be informed.. :eek:
It may not hurt for you to have a good consult with Dr, but a right heart cath is the only way to get the mean pulmonary pressures..echo's only give an estimate.
Hope this helps..love the pup
 
Gina, I think I really understand some of the feelings you are encountering. I've had a rough few weeks and think Nancy's advice to see a specialist in pulmonary hypertension may be appropriate. My first right heart cath (almost 3 years ago) did show PH. The finding coordinated well with the results from an echo at the same time. The echo I had a few weeks ago was the first one post-up that actually indicated an increase in PAP over the pressure before surgery. I too am SOB and worn out. Last week, my cardiologist reviewed the films of the last four echoes to double-check the findings and called me to tell me that it seems there is a definite increase in pressure as well as some remodeling going on. He added altace to my list of meds and wants to perhaps cath again in 6 months and go from there. I really love my cardiologist and I'm feeling so doctored out right now that I really don't know if I can face seeing yet another specialist( next week I add a neurologist to my list). I do know however, that my cardiologist is not the person to manage this area of my healthcare.

I'm wondering if secondary pulmonary hypertension becomes primary if the initiating cause is removed and the pulmonary hypertension remains.

Gina, I really feel for you and hope you find some answers. I have noticed that several of us with rheumatic heart disease also have problems with PH. I don't know if it a result of the valve damage or a seperate component of the RHD itself. I'll be watching for an update from you.
 
Hi Gina,
Chloe had pulmonary hypertension prior to her valve replacement. Now, a few years post op its gone. So yep, it can happen but I suppose it would depend very much on the individual and their own condition.
Hope you find the answers you want
Love Emma
xxx
 
Thanks everyone.

Betty, I am doctored out also. I am so tired of "fighting for my symptoms" (if that makes sense). It seems like if I don't go in agressively, I am not listened to. I like my cardio but he seems to be focused on my weight and anything else is secondary. I am a little overweight but those of you who have met me know I am not obese by any measure.

Yaps, maybe this is just something I will need to learn to live with. I am hoping it doesn't get much worse. Sometimes I get winded walking a short way and sometimes I can run up steps. That's why I don't buy the "out of shape" scenario. These symptoms are not consistent.

Mary and Nancy - thanks so much for the definitions. These words are way too confusing but they sound ominous. I am thinking this has been hanging around waiting for an opportunity to rear up.

Emma, I am glad Chloe got rid of her PH. If PH is what I am feeling, I wouldn't wish it on anyone especially a precious child.

Sherry, Johnny & Harry - thanks for the encouragement. I think it's time to fight, I just have to get my energy level up for the attack. ;) :eek:
 
Gina, I KNOW you aren't obese and I think your card is off base blaming anything on your weight whatsoever.

I meant to ask you what your RVSPs have been on your most recent echoes and your MPAP on your last cath but somehow forgot. How has the trend been over the years?
 
Gina -- you mentioned pleural effusions. I've been fighting this for the past 3 months. Let's see -- I have high bp (had if for years), sleep apnea, grossly overweight, now have AI, mild PH, some amount of LVH, Hyperventilation, and the list goes on. Just one week ago, I began taking a booster diuretic one hour before my morning bumex. In two days I took 6 lbs of fluids out of my body, most of which were behind my lungs. My inspiration capacity has doubled from 2000 ml to almost 4000 ml. Also taking 4 liters of O2 into my CPAP and am sleeping like a baby. 7 nights of 8 hrs sleep. My bp is now 117/41. Also down 35 lbs now since Aug 1.

I can literally run up stairs now, and could barely walk just 10 days ago. Haven't seen the written results yet of my TEE -- but I will be interested in seeing if the PH has subsided somewhat. I am thinking that mine is secondary PH, because of the high bp, OSA, AI, and the hypoventilation. Yours could very easily be SECONDARY. But you'll never know until get that fluid off your lungs and make other improvements.
DB
 
geebee said:
MPAP, last cath - 24
RVSP, last 3 echos = 28, 31, 33

Gina, I just don't know. It seems that those pressures are at or just a little above the normal range. I'm looking at a list of normal pressures and the RVSP norms are listed as 20-30 so maybe even the 33 is hopefully within the margin of error. The same source states MPAP is normal if below 25.

But then that leaves you with the question of why you are feeling the way you are. There are quite a few causes of SOB and I hope yours turns out to be a benign one.
 
I agree that I am right on the border of the ranges. However, my symptoms are not very severe so I am thinking there could be a connection. Hopefully there is something else going on but I just don't know. I guess I just need to see a specialist and see if there is any way to find out without going through another cath.
I will keep you posted.
 
Here is the list of pressures that I have:

Systolic Pressures:

Mild PH: 40-55 mm hg
Moderate: 55-75 mm hg
Severe: above 75 mm hg

Mean Pulmonary Pressures:

Mild PH: 26-35 mm hg
Moderate: 36-45 mm hg
Severe: above 45 mm hg

So it is vitally important that you are comparing the correct pressure readings. If not sure, then it's time to discuss it with your doctor/s, and hopefully a PH specialist.

Here are the classifications:

PH functional classifications

Class I: No symptoms during ordinary physical activity. Normal heart function. Elevated PAP.

Class II: Comfortable at rest. Ordinary physical activity somewhat limited by undue breathlessness, chest pain, fatigue or near fainting. Elevated PAP

Class III: No symptoms at rest, but physical activity is greatly limited by breathlessness, chest pain, fatigue or near fainting while doing routine things. Elevated PAP

Class IV: Symptoms at rest. Signs of right-sided heart failure. Prone to fainting. Elevated PAP
 

Latest posts

Back
Top