Patient Comments: Pulmonary Hypertension - Symptoms

Question:

Please describe your symptoms of pulmonary hypertension. Submit Your Comment

Comment from: P A jones, 55-64 Female (Patient) Published: April 07

With pulmonary hypertension I found myself extremely short of breath, weak in my arms and legs to the point of feeling like my legs were like spaghetti, and nausea to the point of vomiting. My heart rate was extremely rapid, with no exertion at all. I couldn't walk more than a few feet without feeling like I would collapse. After cleaning a small spill, I stood up and promptly passed out.

Comment from: dancesilly2, 55-64 Female (Patient) Published: February 01

I am a 62 year old female who had knee surgery to repair a torn meniscus in September 2016. As a result of the operation I developed two blood clots in my leg which broke off and hit both my lungs. The right lung had a massive embolus that blocked the blood flow to the whole lung. Echo test did not initially show any pulmonary hypertension (PH). I immediately went on blood thinners. I have had shortness of breath and fatigue even after the clots have dissolved. Another echo showed PH of 35 which my pulmonary doctor say is borderline. I have always been on beta blockers for a mitral valve prolapse. Doctor did not change any medications and does not seem concerned. I on the other hand, cannot do anything without being out of breath. I'm now starting to feel dizzy and not in control. I am extremely depressed and can't seem to get a grip on my situation.

Comment from: Seifu, 45-54 Male (Patient) Published: January 04

My only symptom of pulmonary hypertension is breathing problem while moving, especially upstairs (no problem on a flat surface). Sometimes I have depression (sleep more than usual hours, unable to read giving enough time as usual).

Comment from: Sm7cb6, 45-54 Male (Patient) Published: March 21

I have pulmonary hypertension. I have been on rivaroxaban for 2 years. I get breathless walking short distance, putting shoes, or on talking on phone.

Comment from: Samantha, 35-44 Female (Patient) Published: June 10

I'm 44 and I was diagnosed with pulmonary hypertension in 2011 during my pregnancy. I'm in the mid-advanced stage. For the first two years of it I felt horrible. I gained so much upper body weight. I couldn't walk from my bedroom out to my car without having severe shortness of breath. I would sweat so much it literally dripped off me. I felt like I was literally dying. My pulmonologist put me on a medication called Opsumit, Lasix, Coreg, and warfarin. And oxygen as needed. I feel so much better. I can do almost anything, just like I used to. I still need to lose the weight.

Comment from: Winnie, 0-2 Female (Caregiver) Published: June 16

My son had heart failure at 6 months of age. He was born at 31 weeks, only kept on oxygen for 24hours. Send home at 34 weeks he struggled to feed, I spent hours feeding him. I feel so guilty because I thought he was not right, yet the doctor kept telling me he was fine. I knew he found it hard to breathe when feeding, yet doctor kept telling me he was ok. I took him to the hospital and was told he was having heart failure. He was diagnosed with pulmonary hypertension (PH). He's 2 and a half, was on oxygen for a year. Now only when needed, saying that seems quite often. He takes medicines etc., yet has never seen a doctor about his P. I just don't seem to get any answers, doctor says he doesn't have PH, so what does he have! Any time we fly he needs oxygen, how can he be sure my child doesn't have PH.

Comment from: law, 45-54 Female (Patient) Published: February 11

I am a 45 year old female. I was diagnosed with pulmonary hypertension 2 years ago. I was diagnosed with emphysema when I was 37 years old. The only treatment I am currently on is my 2 inhalers. I have dizziness all the time; when I stand up, when I stretch or reach for something, when I pick something heavy up or if I hold my breath at all even for 2 or 3 seconds. I get winded and out of breath climbing the stairs, using the vacuum or making the bed. I have chest pain almost daily. I have insurance through work, but sadly I still cannot afford the expensive tests and medication that is needed. I would like to know what my life expectancy is. My doctor will not give me a straight answer.

Comment from: friar120, 65-74 Female (Patient) Published: October 31

I have lived at 10,200 feet for 25 years. I was diagnosed with PH (pulmonary hypertension) several years ago. About 3 years ago I started having episodes of gasping air hunger with physical exertion, extreme lethargy and feeling my heart beats in the middle of my sternum and up into my neck and ear drums. This July I had 2 stents put in my right and left coronary arteries due to 80% and 70% blockage. 50% blockage was found in the other coronary artery in the back of the heart, but no stent was put in. I continue to have symptoms like the above despite having the stents put in. My problem is that the PH test shows up as only slightly elevated in Denver, which is only a mile high in altitude. I live at 2 miles high elevation in altitude and can't get a doctor to "look at the patient" rather than the test results at a lower elevation. I also have vertigo, swelling in my legs and weight gain. I have found that crashing lethargy happens when my oxygen is in the lower 80s and improves when I breathe oxygen at 2 liters. I have also been diagnosed with heart failure. I probably should be on medications, but that won't happen until a doctor recognizes my plight.

Understanding COPD
Comment from: Whatswrong, 65-74 Male (Patient) Published: October 07

Clear angiograhm, but continuing shortness of breath on exertion + angina like pressure 'tightness' in the chest, relieved by nitro spray + weakness in the left arm. Pitting edema in the lower legs and ankles. Currently taking a beta blocker, calcium channel blocker, Lipitor, and a water pill. Cardiologist is not sure what the problem is.

Comment from: Annod, 45-54 Female (Patient) Published: October 07

I was just recently diagnosed with pulmonary hypertension as soon as last week. I did not know why I have been so short of breath and cant walk up 3 steps without trying to catch my breath, the last three weeks my feet ankles and legs have been swollen which caused my doctor to run tests and PH was the result. I am so scared I would like to talk to others that have this I am 53 years old and have always been super active and hyper naturally that this is very difficult to swallow but mostly cause it is so new, I am just somewhat greatful that at least I know what the problem is.

Comment from: heartful, 45-54 Female (Patient) Published: August 21

I suffered a blunt force blow to my chest. I was left with a small bruise the size of an elbow over my heart. My heart ached for a couple months, and unbeknownst to me blood had begun to fill the pericardial space until symptoms of cardiac tamponade sent me to the hospital to have a pericardial drain. The injury was so severe that 500 cc of fluid initially, and an additional 450 cc were drained that first evening. My symptoms returned and I had pericardectomy (removal of the pericardium) 3 weeks later. Post-operatively I suffered from severe mitral valve disease which caused my pulmonary hypertension. I continued to worsen after recovering from surgery. Chest pain, shortness of breath and fatigue led me from cardiologist to cardiologist, most trying to convince me it was due to deconditioning. I knew it was not the cause as I was trying to do more and yet my condition was worsening. I received a diagnosis of pulmonary hypertension in years later. After researching a description fit my symptoms perfectly! Still I was not given any medications for the disease until I was put on oxygen as my condition continued to worsen with my oxygen levels dropping into the 80's with walking. When I finally received medication for the disease, seven months later, it took only a week to get off the full day oxygen treatment. My energy level is low, I still get out of breath, and I continue to have chest pain which has been worsening, but I am able to breathe better since getting on the Revatio. The cost is more than $1300 a month for the drug, but to me is worth every penny.

Comment from: Becky, 45-54 Female (Patient) Published: August 19

I am 49 years old. Another tip I have found is doing my walking where there is a cart or stroller to hold on to. This way, I am able to walk a lot farther, and it is not as obvious as using a walker would be. Also, when I first get signs of congestion, I am proactive with treatment. I keep prescription cough medicine on hand and use it at the first sign of a bronchitis flare-up. This has kept me from taking antibiotics as often. I hope this helps a little. Be as active as possible, and make each day count. Embrace the good days. Lots of prayer has kept me going.

Comment from: Jackie, 35-44 Female (Patient) Published: August 19

I was diagnosed with pulmonary hypertension in March of 2009. My symptoms were/are: shortness of breath, dizziness, swelling of the ankles, fainting episodes, and heart palpitations. It got to the point where I couldn't even take a shower or get dressed. I was scared. I still am, but with the meds (Coumadin, Lasix, Tracleer, digoxin,and Cardizem), I have been feeling a little better. I have my good days and my bad ones. I feel bad because I am only 37 years old and can't do the things I used to do. I am limited. I hate the way I feel. My doctor, who is a specialist in pulmonary hypertension, says I will need a lung transplant in about 10 years. I got this from a diet pill I took 10 yearrs ago: fen-phen, Fenfluramine (Pondimin). I have now got a lawyer to do a lawsuit on the diet pill company. I have three kids. My oldest is 17, and my youngest is four. I'm scared to die from this. My baby needs me, and my family needs me. I want to live to be 70 or 75, but I don't know if I will live that long.

Comment from: 35-44 Female (Patient) Published: August 04

I was diagnosed with pulmonary hypertension a few years ago. I get short of breath doing ordinary things that other people who are healthy don't even think about, such as light housework or walking around the shopping mall. I take my medicine as prescribed by my doctor. I am grateful that I have many friends who are very supportive. At times, I feel bad emotionally with my family because I can't do the things I once did. I don't want to spoil their fun when doing things as a family. I was once a very active person and besides feeling bad physically, I have to deal with my emotions, although I always try my best to stay positive and happy. I try not to dwell too much on what I used to do, but I concentrate on what I can do. I can't change my diagnosis, but I can change what I choose to think about it.

Comment from: melrai, 35-44 Female (Patient) Published: August 04

I am 35 years old and was involved in a car accident in 2004 in which I suffered a saddle pulmonary embolism. Since then, I have had episodes of shortness of breath. Last summer, I had an episode of pneumonia and was treated with antibiotics. Since then, I have been extremely tired, short of breath when I shouldn't have been to the point that I would miss work because I couldn't get up because I was too tired. In the winter of 2008, I fell off my roof and hurt my right hip. After several doctors, I had surgery in March 2009, and two weeks later, I developed severe pain in the hip. Again I was bounced back and forth from doctor to doctor. After finding another doctor, I was diagnosed with a severe infection and had surgery in early May of 2009. Two weeks later, I went to the emergency room with severe shortness of breath. I was diagnosed with pulmonary hypertension, severe anemia that required a blood transfusion, and congestive heart failure. I was put on lisinopril and Lasix. Over time, I improved, but I still have issues. No one will tell me how I got this, what the prognosis is, and if there is anything besides medication to help. I have read some articles that show that if you have primary pulmonary hypertension that life expectancy is not that long and that is very concerning to me. I am terrified of what could happen.

Understanding COPD
Comment from: sallyc, 55-64 Female (Patient) Published: March 25

I was wondering if pain in the left shoulder and watery diarrhea were also symptoms of pulmonary hypertension.

Comment from: CALIFORNIA, 45-54 Female (Patient) Published: February 12

I am a patient with pulmonary hypertension. I also had the shortness of breath when doing daily chores. My doctor has me on a medicine called Remodulin, it's a new drug but with that and Adcirca, another drug I take, I'm able to do my daily chores with no problems. The Remodulin is a treprostinil injection.

Comment from: leigh, 25-34 Female (Patient) Published: June 24

I'm concerned about new symptoms I have been having. I was diagnosed at 33 years old with COPD and bullous emphysema and had MRSA in lungs which was why the early diagnosis. I went to my primary doctor but he doesn't show any concern. I have swelling, tingling, and cramping in both legs along with my hands. I also have dizzy spells and am very fatigued all time. I'm wondering if this is associated with COPD at all, I don't know what to do!

Comment from: weifle, 75 or over Female (Patient) Published: January 23

I have been diagnosed with bronchiectasis and one year ago with pulmonary hypertension. I am not short of breath, but almost every day starting after breakfast I feel like a zombie, kind of weak with not much energy, yet my oxygen level is tracked at 97 to 100%. I can walk ok but feel like I'm not there.

Comment from: 45-54 Male (Patient) Published: November 09

When I am doing anything that requires increased blood flow, it is hard to breathe deeply and catch my breath. Anxiety follows the restricted breathing. This happens in cold and warm spots. I get it playing hockey where you skate quick, stop and start. Also can get it playing road hockey with the kids.

Comment from: 25-34 Female (Patient) Published: October 23

I was diagnosed with pulmonary hypertension in February of 2009. I didn't realize the shortness of breath I was having was due to the disease. I thought that it was a result of being overweight. I found out after a freak occurrence of coughing and spitting up blood (large amounts). Hospitalization and a trip to a pulmonologist outside of my hometown led to the diagnosis where a right heart cath was done to show extremely high pressures in my heart. I have a large family and they depend on me very much. I recently decided that I need to get involved more with support groups and raising awareness about the disease. I currently take Letairis daily along with Coumadin and have functioned well, as far as I can tell. I am able to walk farther distances without sweating and getting out of breath. I am currently awaiting results from my second right heart cath and am hopeful that there is some decrease in pressures. I have six kids ranging from 13-3 and not knowing what my prognosis is hurts me every day, wondering if I will get to see them grow. I pray for at least another 10 years so I can see my son grow at least to a teenager. God loves us all. I will pray for all of you!

Comment from: medicine net, 13-18 Female (Caregiver) Published: October 07

my daughter was diagnosed with pulmanary hypertension aug 6 2009 and is 17 years old. it is alot of sleepless nights for a parent, for she feels and looks good on the outside but is damaged in the inside. with the proper medicine and hope, i put my prayers in god. best of luck to all that is going through this same ordeal.

Comment from: helpmeplease, 25-34 Female (Caregiver) Published: October 07

My niece has pulmonary hypertension for last 5 years and her condition is getting worse. She is on 2nd type of drugs but doctors are suggesting that she is in her last episode and the last option is the lungs transplant. Can anybody help us or advise / sharing their experience how I can save my niece. she is 26 and a final year medical student.

Comment from: Bexton, 55-64 Female (Caregiver) Published: August 17

My mum was diagnosed with Secondary Pulmonary hypertension just over a year ago this is secondary to Scleroderma which she has had for 11 years. We went to Spain on a family holiday my mum had been feeling tired and light headed for a few months before we went, whilst we were in Spain she passed out and was taken to a private hospital where within 48 hours they had pretty much done every test available and they had diagnosed Pulmonary hypertension, yet the doctors back home who she had been seeing for months just kept saying she had a virus. After returning from Spain last year she is now under the pulmonary hypertension department, but unfortunately even after a year of being on medication for PH, the pressure on the heart has gotten worse and they are now trying to adjust her meds to suit her. I really feel for both patients and family who are dealing with this illness as I find it so hard to see my mum slowly becoming less and less active and the emotional strain is just as hard for her when all she wants is to have a day where she feels well enough to go out shopping or look after the grandchildren for a day without having to worry about how far she can manage.

Understanding COPD
Comment from: Anna, 35-44 Female (Patient) Published: August 04

I was diagnosed in August 2007 with primary pulmonary hypertension. I have been doing very good. I do have my good days, my breathing is normal, and I can function with my daily activities. I like to go to concerts and hang out with my friends. But then I have my bad days, where I am exceptionally tired and have to sleep for a day or so just to keep up with my work or kids. I do work full-time and for the most part, I am at work about 90% of the time. I am on FMLA so that keeps my job secure for when I am out sick. I am living with PPH and surviving. I will say try to go to support groups, they do help out a lot. They keep you sane. Good luck to everyone out there and God bless.

Comment from: jonboy, 55-64 Male (Patient) Published: July 06

I was checked for sleep apnea 11 years ago. Two years ago, I had my first two episodes of atrial fibrillation. My chief complaints after the atrial fibrillation were shortness of breath, tiredness, and fatigue. My primary physician ordered an echocardiogram that showed pulmonary hypertension. I had a right and left side heart catheter done earlier this week. The heart showed no abnormalities, no blockage, etc. I am on Coumadin, metoprolol, lisinopril, Crestor, Tylenol, Bayer, and Prilosec. My older sister has COPD, and my mother died of pulmonary hypertension complications. My identical twin died of cardiac arrest when we were 6 during a tonsillectomy. My younger sister died of bilateral pulmonary saddle embolism when she was 48, and my older brother is on Coumadin for his deep vein thrombosis (DVT) that was discovered in the past month.

Comment from: pinkie, 55-64 Female (Patient) Published: July 06

I have pulmonary hypertension. Mine is the result from taking diet pills. For the past week, my feet and legs have been swelling, and my big toe hurts. Yesterday, when I took my shoes off, I had this clear fluid run out from under my toenail.

Comment from: shayla, 35-44 Female (Patient) Published: June 12

I have one concern. I was diagnosed to have ASD when I was 28 years old. Now I'm 37 years old. I still did not have surgery which my doctor advised me to have. My question is what will happen if I will not have any surgery at all, right now. I'm taking metropolol 50mg daily, still I have shortness of breath and I feel itchy inside my chest. I know its important to have treatment, but I cant afford it, is there any possible treatment for this?

Comment from: goingoutamymind, Male (Patient) Published: December 10

I am 30 and I was just told a few days ago I have PH (pulmonary hypertension). Now I am going crazy thinking about life expectancy and transplants.

Comment from: Bo, 65-74 Male (Patient) Published: October 23

70 year old white male, smoking for 40 years, diagnosed with mild COPD. Biggest problem is trapping of air (can't get exhaled). I have to sleep part of the time in a recliner, because of extreme coughing (have passed out). Difficulty walking because of angina and shortness of breath. Scheduled for echocardiograph and chemical stress test, and have had CT scan of lung with no tumors present. Will have a repeat pulmonary function in 3 months. Doctor stated the reason for test is to rule out pulmonary hypertension. I wonder if this seems familiar to anyone.

Comment from: Confused, 45-54 Female (Caregiver) Published: October 07

My sister is 50 years old and suffered many complications from having gastric by-pass surgery. Pulmonary hypertension is her latest diagnosis after complaining to the physicians for more than a year that she was having chest pains and shortness of breathe. She is still being passed from the lung doctor to the heart doctor and she is very afraid. The gastric surgeon is totally out of the picture. My sister has been reading and researching this disease and is afraid that she is not getting the help that she needs.

Comment from: Anonymous , 25-34 Male (Patient) Published: August 18

My pulmonary hypertension symptoms are: unable to urinate, sweating profusely with any type of exertion, cramping of muscles, swelling of hands and legs, headaches, nausea, dehydration, chest pain, wheezing, and shortness of breath.

Comment from: mema in nc, 45-54 Female (Patient) Published: August 04

Four years ago, I started having severe shortness of breath, fatigue, and a huge weight gain. Tests showed pulmonary hypertension. My symptoms were not as severe for two years and now it seems to be back aggressively. I've had more tests, more fatigue, and I am breathless after very little exertion. I just turned 50, and I feel so old.

Comment from: need2listen, 45-54 Female (Caregiver) Published: January 05

Having been the caregiver to someone who suffered from pulmonary hypertension the best advice that I can offer someone who thinks they may be suffering from this is please seek care. If your doctor is not moving along with ruling this out, seek a second opinion. My mother started to have symptoms at the age of 52, the doctor was unaware of pulmonary hypertension. She lost time while he ran several other tests to the point of testing for mental health issues before she left him and went to a different clinic. Sadly by that time she had progressed so quickly downhill that there was not much they could do. She went from having moderate symptoms to seeking care at a local clinic for some stomach pain, and within 3 days she had passed away. My point is not to scare anyone, but to say trust your body, if it is telling you something is wrong, don't give up just because you doctor isn't sure that you have this illness.

Understanding COPD
Comment from: shauny, 19-24 Male (Patient) Published: July 16

I have been suffering with shortness of breath for a while and it's getting really bad especially when I eat, all I eat is a small meal then I can't breath. I have put on a lot of weight around my lung and chest area. I have been to doctors so many times and they keep saying its anxiety, but I know it's not. I know my body what I'm going through is not anxiety.

Comment from: jules11, 55-64 Female (Patient) Published: June 12

Very swollen and painful ankles numb and tingling feeling from forearms down and knees down, face and hands swollen (even with furosemide 40 mg bid) shortness of breath upon just a little movement. Feeling of anxiety, headache, tightness of chest, as in a large wrap is around chest and it has been tightened.

Comment from: CaptStu, 65-74 Male (Patient) Published: May 29

I have just started the process of narrowing down my COPD symptoms. It was initially diagnosed by my Internality based on a spirometry test, an overnight Oxygen test and Spiriva and O2 (2ml) were prescribed. Albuterol had been determined to be ineffective in the spirometry test. In a periodic cardio exam the echo cardiogram indicated pressures of 88 in my pulmonary blood vessels. A subsequent right heart catherization measured a pressure of 66; but that is still on the border of serious with 20 to 25 as normal. My pulmonologist has diagnosed pulmonary hypertension - Secondary. I am going through some blood tests, a CAT scan, overnight sleep test and another spirometry (this last to determine if the Spiriva is doing anything worthwhile which I really doubt after 120 days of use). This exercise has been helpful.

Understanding COPD
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