spirlhelix
10-11-2003, 02:31 PM
My internist mentioned after my echocardiogram that I have pulmonary hypertension. He didn't seem to know much about it.
Help! Does anyone know any resources, or have any experience with this?
Hugs,
Pam
Help! Does anyone know any resources, or have any experience with this?
Hugs,
Pam
Sponsor
zuzu8
10-11-2003, 06:13 PM
Pam- I don't have personal experience with this but know that recently great strides have been made to control pulmonary hypertension, particularly with calcium channel blockers and other drugs, depending on staging etc.
Here is an informative link (thru MEDLINE website). Permission to post from Medline has been approved by moderators. http://www.nhlbi.nih.gov/health/public/lung/other/pph_doc.htm
zuzu xxx
Here is an informative link (thru MEDLINE website). Permission to post from Medline has been approved by moderators. http://www.nhlbi.nih.gov/health/public/lung/other/pph_doc.htm
zuzu xxx
spirlhelix
10-12-2003, 07:29 AM
Thanks, zuzu
From what I can find (there isn't a whole lot out there), you can either have primary or secondary pulmonary hypertension. There is a strong possibility I have secondary, (caused by an other identifiable condition) which is good--as long as they can treat the underlying cause of pulmonary hypertension.
Ever since I got my echocardiogram, ever more tests are on the horizon. . .probably because they found I have heart failure with an ejection fraction of 20%.
I suggested to the doctor that we look for sleep apnea, which can cause both heart failure and pulmonary hypertension (I knew about the first, and that's when he told me I have pulmonary hypertension!). "Oh, sleep apnea can cause pulmonary hypertension--that's what you have!". Geez, I wonder if he would have mentioned it to me if I hadn't stumbled onto it.
People with sleep apnea who have heart failure often have central sleep apnea (usually with a neurological cause)--not the same as obstructive sleep apnea. Or they can have obstructive sleep apnea, or both.
Sleep apnea is a significant cause of hypertension. There are interruptions in the breathing pattern while the person sleeps. It makes us wake up at night suddenly with a feeling of dread or a "flight or fight" response. It is very hard on the heart, as the body is flooded with adrenaline up to 100 times an hour with each cessation of breathing.
I would encourage anyone who has "rough wakenings" during the night and high blood pressure to ask your doctor about a sleep study.
Hugs,
Pam
From what I can find (there isn't a whole lot out there), you can either have primary or secondary pulmonary hypertension. There is a strong possibility I have secondary, (caused by an other identifiable condition) which is good--as long as they can treat the underlying cause of pulmonary hypertension.
Ever since I got my echocardiogram, ever more tests are on the horizon. . .probably because they found I have heart failure with an ejection fraction of 20%.
I suggested to the doctor that we look for sleep apnea, which can cause both heart failure and pulmonary hypertension (I knew about the first, and that's when he told me I have pulmonary hypertension!). "Oh, sleep apnea can cause pulmonary hypertension--that's what you have!". Geez, I wonder if he would have mentioned it to me if I hadn't stumbled onto it.
People with sleep apnea who have heart failure often have central sleep apnea (usually with a neurological cause)--not the same as obstructive sleep apnea. Or they can have obstructive sleep apnea, or both.
Sleep apnea is a significant cause of hypertension. There are interruptions in the breathing pattern while the person sleeps. It makes us wake up at night suddenly with a feeling of dread or a "flight or fight" response. It is very hard on the heart, as the body is flooded with adrenaline up to 100 times an hour with each cessation of breathing.
I would encourage anyone who has "rough wakenings" during the night and high blood pressure to ask your doctor about a sleep study.
Hugs,
Pam
spirlhelix
10-22-2003, 07:13 PM
Well, I saw a cardiologist for the first time. Here's what he found from my echocardiogram:
Severe left ventricular dysfunction
Mitral regurgitation
Severe heart failure
Pulmonary hypertension
Right ventricular dysfunction
and a few other things. He told me I have a 50% chance of dropping dead in the next year. One of the things that makes me a difficult case is that I can't tolerate the meds that are the usual mainstays of treatment. He plans to refer me to someone who does more experimental treatments. He suggested I might be eligible for a heart transplant.
I'm going in Friday for a cardiac catheterization.
Wish me luck!
Pam
Severe left ventricular dysfunction
Mitral regurgitation
Severe heart failure
Pulmonary hypertension
Right ventricular dysfunction
and a few other things. He told me I have a 50% chance of dropping dead in the next year. One of the things that makes me a difficult case is that I can't tolerate the meds that are the usual mainstays of treatment. He plans to refer me to someone who does more experimental treatments. He suggested I might be eligible for a heart transplant.
I'm going in Friday for a cardiac catheterization.
Wish me luck!
Pam
zip2play
10-23-2003, 08:18 AM
Oh Jesus Pam,
So sorry to hear that dismal diagnosis.
Make sure you stay under the care of the best cardiologist in your area.
Excercise tight control on BP, cholesterol, stress, no smoking and any other risk factors you can find and NEVER forget your daily ASPIRIN.
Did he mention any surgical intervention SHORT of transplantation that might be useful?
[This message has been edited by zip2play (edited 10-23-2003).]
So sorry to hear that dismal diagnosis.
Make sure you stay under the care of the best cardiologist in your area.
Excercise tight control on BP, cholesterol, stress, no smoking and any other risk factors you can find and NEVER forget your daily ASPIRIN.
Did he mention any surgical intervention SHORT of transplantation that might be useful?
[This message has been edited by zip2play (edited 10-23-2003).]
spirlhelix
10-23-2003, 10:51 AM
Hi, Zip
Thanks for the encouragement!
The BP is still out of control; 196/95 is an improvement, though. They are always looking for meds to help me with that.
Lately here, they tried Hydrazaline for heart failure. Cardiologist started the med Monday, I showed up at the internist Tuesday with joint and muscle pain and fever, finally called Tuesday night and begged the doctor to take me off it. He did, although he felt I had the flu and only agreed to let me drop it long enough to see if it was causing the pains. I quoted the package insert to him to convince him to do so.
So the next day, I felt a bit better, but had a headache, dark urine, and more fleeting aches and pains. Beh! Symptoms of hepatitis. Looked it up and sure enough, hydrazaline can cause hepatitis. So I called to see if they ran a hepatic profile (they did a blood draw Tuesday, but I don't know what all it was for). I just don't want to go in for a cardiac catheterization tomorrow if I have acute hepatitis--at least, not without the doctors being aware what's going on.
This cardiologist realized he was over his head when I refused to try Coreg due to my previous experiences with betas. Seems this intolerance automatically makes mine "end stage" heart failure. So he is referring me to a woman cadiologist who is highly respected here in this city. I'm also going to see a specialist who deals with pulmonary hypertension.
Ablation might help me, as I pointed out to him, but he did not seem to be familiar with the procedure. I think he tends to treat with medications more than new procedures.
I don't smoke or drink, so I'm cool there, but I can't tolerate aspirin either, because of a history of liver and kidney conditions. So I stick with large doses of methylcobalamin (sublingual Vitamin B12) and daily multivitamins. That cuts down on the homocysteine level, which is a risk factor for heart attack and stroke.
Thanks for responding!
Hugs,
Pam
Thanks for the encouragement!
The BP is still out of control; 196/95 is an improvement, though. They are always looking for meds to help me with that.
Lately here, they tried Hydrazaline for heart failure. Cardiologist started the med Monday, I showed up at the internist Tuesday with joint and muscle pain and fever, finally called Tuesday night and begged the doctor to take me off it. He did, although he felt I had the flu and only agreed to let me drop it long enough to see if it was causing the pains. I quoted the package insert to him to convince him to do so.
So the next day, I felt a bit better, but had a headache, dark urine, and more fleeting aches and pains. Beh! Symptoms of hepatitis. Looked it up and sure enough, hydrazaline can cause hepatitis. So I called to see if they ran a hepatic profile (they did a blood draw Tuesday, but I don't know what all it was for). I just don't want to go in for a cardiac catheterization tomorrow if I have acute hepatitis--at least, not without the doctors being aware what's going on.
This cardiologist realized he was over his head when I refused to try Coreg due to my previous experiences with betas. Seems this intolerance automatically makes mine "end stage" heart failure. So he is referring me to a woman cadiologist who is highly respected here in this city. I'm also going to see a specialist who deals with pulmonary hypertension.
Ablation might help me, as I pointed out to him, but he did not seem to be familiar with the procedure. I think he tends to treat with medications more than new procedures.
I don't smoke or drink, so I'm cool there, but I can't tolerate aspirin either, because of a history of liver and kidney conditions. So I stick with large doses of methylcobalamin (sublingual Vitamin B12) and daily multivitamins. That cuts down on the homocysteine level, which is a risk factor for heart attack and stroke.
Thanks for responding!
Hugs,
Pam
Canyondweller
10-13-2006, 02:31 AM
Pulmonary hypertension is not the usual high blood pressure. It is too much pressure in the pulmonary artery and there is back flow of blood into the artery. The only way to really know how bad it is it to get a right sided heart cath test. If you are a smoker you must stop NOW and be tested for emphysema. IF you have secondary it comes from a chronic condition like emphysema if you have primary it is from something that caused it like Fen-fen diet pills. There are many websites that discuss it. It is a serious condition and you need a new Dr. and soon and preferably one that specializes in PH. The treatment is not the same as for regular blood pressure. Don't get confused by the hypertention part. There is a national pulmonary hypertension organization where you can find more info.