Welcome Sher99. I have secondary pulmonary hypertension. I am in good shape at this point. My doctor told me that my pressure was not high enough to do a right heart catherization. I am not on oxygen yet. I do get tierd and have concentration problems. I also have dermatomyositis and RTL epilepsy. I get short of breath with dizziness. I can still walk across the room with stamina at this point.

Be sure to see a pulmonologist for a pulmonary function test. Your doctor will determine if your carbon dioxide is too high. If the carbon dioxide is high then you will go on oxygen. The oxygen will help you to not be tierd so much. There are differences between Primary PH and Secondary PH. Your doctor will let you know when to go on meds if it is Primary PH.

PH effects everyone. The Pulmonary Hypertension Association website is a good place to get more information.

Good luck & Keep us posted.

Thanks for writing, trpt1. I believe my PH is secondary as well. This I've gathered myself from studying on the web. I had congestive heart failure in 2003, I have sleep apnea and also left-sided heart valve problems. I am going to my regular doctor on Tuesday, where he will have a copy of the echo to go over with me. I expect him to move forward with recommendations/referrals because my pulmonologist admitted to me that he knew nothing about PH. There is not one specialist in my state, but there is a group of them where my son lives. Maybe I'll end up staying with him for a while and seeing the doctors there. I'll know a lot more after Tuesday.

Thanks for being there. I'll let you know what I find out.

Hi Sher99,

I'm sure you will feel welcome here. I can't believe the doctor's let you go all this time without some sort of help.

As for being so tired all the time, that seems to be "normal" for those of us that have PH. I, too, am 60 years old and I agree it is too young. But when I see the ages of some of the others that it affects, my heart drops; especially the children and young mothers.

How ironic that you said you had a difficult time after surgery. After my last 3 surgeries they have a hard time waking me up. I just can't seem to come out of the sedation and my breathing is very shallow. My daughter was quite upset the last time; she said I looked like I was dead.

As far as the stage (Class) you're in, here is a copy of the classes.

A. New York Heart Association functional classification

Class 1:
No symptoms with ordinary physical activity.

Class 2:
Symptoms with ordinary activity. Slight limitation of activity.

Class 3:
Symptoms with less than ordinary activity. Marked limitation of activity.

Class 4:
Symptoms with any activity or even at rest.


B. World Health Organization functional assessment classification

Class I:
Patients with PH but without resulting limitation of physical activity. Ordinary physical activity does not cause undue dyspnea or fatigue, chest pain, or near syncope.

Class II:
Patients with PH resulting in slight limitation of physical activity. They are comfortable at rest. Ordinary physical activity causes undue dyspnea or fatigue, chest pain, or near syncope.

Class III:
Patients with PH resulting in marked limitation of physical activity. They are comfortable at rest. Less than ordinary activity causes undue dyspnea or fatigue, chest pain, or near syncope.

Class IV:
Patients with PH with inability to carry out any physical activity without symptoms. These patients manifest signs of right-heart failure. Dyspnea and/or fatigue may even be present at rest. Discomfort is increased by any physical activity.

I hope this helps. We will be here to support you and listen. Try to hang in there and know that you can come here anytime to talk or vent.

Peace

Hi Sher, Welcome to our group. We have all been where you are now. At the beginning. Now some of us are advanced into as Peace posted I-4 stages. I am in stage 4. I am on oxygen 24/7. I have sleep apnea very bad & I have RA. These make my Diagnoses secondary. That just means they treat the SA and RA instead of PH. I am to wear the c-pap even when I nap or any time during the day I feel tired or my chest hurts. Some days I use it mostly all day. I get dizzy when I lay down in bed at night. The bed spins with me. But then it calms down. I get dizzy and feel faint all during the day. Since I am also a diabetic I have mixed symptoms. One from one illness and one from another. Sometimes I dont know which one is doing what. lol But here not there, the symptoms are still there. Some days I can think like I did in my 20's. Most days I stay home because I'm scared I want remember where I am. Besides, my dog dont care if I forget her name...or mine. lol Well, there is more. But the main thing is just that...the main thing. I function on what ever level I can that day. And am learning to take each day at what it is and dealing with my needs for that day alone has been hard for me, but I am getting there and because I am. I am feeling better.
I hope your appointment with the DR gives you a good report. But please keep us up to date. And make sure you come to spend time with us. It really really really does help.

I can't tell you how much I appreciate your replies!!! This is the first time I have ever 'talked' to anyone who has this, too. I am near happy tears to have heard from you!

I did see my doctor on Tuesday. First of all, the echo cardiogram showed that I have severe mitral valve regurgitation. This will most likely mean I need a heart valve replacement. I am seeing a cardiologist on Tuesday, and will go from there.

My PH pressure is moderate at 54, but I'm sure you all know that greater than 55 is considered severe.

I was very interested to read the classifications. Thank you for posting them! I would put myself in Class 3. It's hard to know for sure though with other problems going on at the same time.

I went to the hospital by ambulance yesterday morning. I thought I was having congestive heart failure, which apparently I was to some extent. My BP was 220/120, and I had a horrendous migraine. They did a lot of tests, and my BP kept coming down so I was able to go home.

I did talk to my kids last night. It was such a relief to tell them. They are supporting me, and have been so sweet and caring.

As you get to know me, you'll find out anyway that I have PTSD, so I may as well get it out now, LOL. My therapist puts me in the severe category along with Holocaust victims. I say that only because I am proud that I made it!! I had a career as a software engineer for 25 years and I use my life experiences to help others.

But now, it's obvious how my experiences have affected my body. This I will deal with too, and I am so grateful that we have each other for support along the way.

Hurry and post back!

You miss us when we,are gone? That is good for the ego. I am so glad you talked your kids. Told you how welcoming this group was the list was helpful to a few,people I have talked to. As always great info from Peace. Take care Tj

How likely is it a new heart valve will stop some of the Ph. Or did the Ph blow out the mitral valve. Lets hope that u can get something positive from something like this. Take care Tj

I didn't consider that a new heart valve could help PH, and I think you are right, TJ. I have been focused on fear of the actual surgery. Thank you for the positive input!

I had the heart valve problems before I was diagnosed with PH, so I think it's more likely that my left sided heart disease caused the PH. That's my guess, anyway. I also have mild aortic valve regurgitation.

Time for another cup of coffee...I'll be back.

Sher, I am trying to look at the positive side to all this. Believe me they are few and far between. I have found that what I didnt think I could do..I do. I also , turn the fear and worry over to my Creator, God. I find when I have no strength, when I'm at my weakest, Christ becomes strong in me. The verse says...I can do all things through Christ who strengthens me. I pray you have found this source of where you can find strength and not be afraid of what lies ahead.
I see you said you had to go to the hospital thinking you had congestive heart failure. What made you think this? What were your symptoms? I have fluid build up so bad in my feet and legs. It use to just be the left foot and leg and now it's both and it also goes into my stomach. Do you have this problem?
I pretty sure you have read other post and topics. The one I like the best and is fairly new is the one on the husbands not accepting our illness. So are you married? I know you said you have kids but are they near or far? Fonzy

I am raising my hand there with you all! My legs and feet swell every day and my belly goes up a pants size when my fluid is high. Diuretics don't seem to help a lot, but a no salt diet does make a difference for me. I cook my veggies and rice, etc. in low sodium chicken broth for flavoring.

I'm still not on auxiliary oxygen but I tire so much. Today I took a 6 hour nap! I mean, I slept hard. Tonight I am still tired but I have been doing more all week.
I really have to limit my extra activities. I have tried to increase what I do because my depression was really affecting my quality of life. So, now I need to learn how to balance.

I am working 2 days a week at my church, Mon and Fri from 9-3 with a lunch break. I am going to the gym for respiratory therapy for 24 minutes now 2 days a week. I am writing freelance articles on the internet for pennies, but it helps keep my mind sharp.

Two Sundays a month I preach, this week I am on rotation as emergency chaplain at the hospital. I teach a quilting group on Thurs for 4 hours, 2 in the afternoons and 2 in the evening.

Every day I take a nap, usually I get up at 6 and go to bed at midnight on the weekends, but at 9 on the week nights.

Keep on moving, even when you are exhausted as it does help your stamina. Take a nap every day, if you have a cpap, use it.

Give up the exhausting things. Assess every activity for its value to you, not anyone else.

I do charity quilting also, which is my way of giving back to God. I always take about 5 hours a week for that activity.

Do the things that matter.

Besides IPF I have three mildly leaky valves found in my early thirties along with an aneurysm an aaa and 5 stents first heart attack at 37 so I know all things can be related and definitely make something like Ph worse. Help one you may help all.

Hi everyone. I hope I can answer all of your questions! I have been feeling better these past few days. This afternoon I will see a cardiologist, which I am looking forward to. I will let you know what I find out.

I had four children. My oldest son, Jason, took his own life in 2004. My first husband and father to three of my children took his own life in 1990. He was very abusive and has caused me and his three kids to have PTSD. I have severe PTSD from things going back to my childhood as well.

Then I remarried several years later, and he died of lymphoma in 1996. I married again, the third time, and it didn't work at all. I divorced him in about a year. I've been living with Patrick now since 2000. We get along well and he takes good care of me and loves me.

I believe in Jesus as my Savior. He has taken me through many dark hours, and blessed me so much at the same time! I can trust him to help me through this illness, but we all need each other.

The symptoms I was having before I went to the hospital were shortness of breath, very high blood pressure, inability to pee and extreme fatigue. I also had a horrendous migraine that was making me throw up. I was feeling very similar to the last time I had congestive heart failure. My BP was 220/120 when the ambulance arrived. There was some fluid in my lungs, and they were able to get my BP down at the hospital once they got control of the pain from the migraine. My doctor is going to run more blood work, so I am stopping in his office this morning for that.

I am on page 2 of replies, so I can't go back to check your other questions without losing this message. That's what happened yesterday after I had written a LONG message!

I don't remember if I already said this, but I believe after my studies that I have PVH, or Pulmonary Venous Hypertension, which is caused by heart failure and left sided heart disease. It's possible it can be reversed, so I hope I'm not too late on getting my heart valves fixed!

I went into town yesterday, and even though I was not trusting my driving skills, I did real well. It's the first I've been out on my own since Jan 11th. I'm hoping today will go well, too!

I will go for now since I'm anxious to hear from you guys. I'll check back over your posts to see if I forgot to mention anything.

Later, friends!

Hello, again.

My kids live 1,000 miles away in different directions. One is in MT, another in OK and the third in KS. My son who lives in KS is the youngest and most likely to drive to visit me. The other two have kids and are stay-at-home moms, making it harder for them to get away.

I chose to not get married again. I like my independence, but we may get married...we'll see.

purplemem, you like to make quilts too! I am working on a paper-pieced quilt now for my son. The squares are a Carol Doak 9-patch design. I am half way done with the 12" squares. Yay!

I am not able to take regular diuretics because of a low potassium problem. My legs and ankles swell some, but not too bad. I don't have much of an appetite and I'm slim enough. I drink Boost every day.

I use oxygen at night. I am still waiting for my new CPAP mask. The company had a flood of some sort, but I've been giving them some slack since they gave me my equipment for no charge when I was down and out. But then it has been two weeks since the order was faxed to them... Maybe it will be in the mail today, hope hope. I see my pulmonologist again on Thursday.

I have appreciated those of you who have shared your stories with me. I will continue to pray for you. Please tell me more about yourselves.

Sher

Hey, everyone. Sorry I haven't been here lately.

I went to the ER about two weeks ago, thinking I was having congestive heart failure. My BP was 220/120, I was retaining fluid etc. Anyway, they did a bunch of tests, including a chest xray and ct scan. The ct scan caught just the top of my adrenal glands, and the radiologist reported a large cyst on the top of my right gland.

I had an appointment with a urologist about my adrenal gland today, and he thinks it's fine. To be on the safe side though, he has ordered a CT scan for Tuesday and a 24 hour pee test.

It's a relief that the gland doesn't seem to be a problem, and he did say that he believes my problems are from my heart. I've been in denial about that. I'm supposed to have another echo cardiogram done around the 19th to determine if I need to have my mitral valve replaced.

I think that if a valve replacement was successful, that my PVH* would go away or become minor. That's my own idea, but it gives me hope.

I'll let you know what the verdict is after I see the cardiologist.

Hugs to all, Sher

*PVH is caused by left-sided heart problems such as congestive heart failure or heart valve disease.

Hi, I haven't spoken yet, just read other peoples experiences. I had an asd repair when I was 20and told by cardiologist I was cured. The hole was the size of 50cent piece. I was, it seemed and went on to get married and have 2 children who did not inherit my congenital heart defect even tho there was a high chance of it. Yea! Anyway, I had surgery on my ankle at age 45 and I just tookc forever to recover and surgeon said ...hey, some people take longer than others. Wow, so helpful. But I was so tired and had a funny cough when I would laugh or exert any effort. I made it thru the fall, knew something was not right and closed my shop and moved business home. I finished out my December clients barely and then after Christmas seemed to get the flu...fever 104 for a week, finally I let him take me and ultimately I was admitted to hospital, many many tests were performed to try to figure out what was wrong: migraine that never ended, fever, 45lb weight gain in 2.5 months, sweats, phenomenal body pain, difficulty breathing. After 2 weeks in hospital a couple diagnosis one being the suspecting of ph, but I had to get tests from pulmonologist after I got out. The attending physician told me at one point to "stop acting like an invalid and get up". Wow. Yup inside I was flipping out, but was too sick to let him have it. I willed the fever away along with the major antibiotics they were using and got released. Pulmonologist was wonderful and ultimately referred me to a pulmonologist who knows much about pah/ph. After that, life has been so much better. I got a neurologist, a GI dr, a rheumatologist all also at the same hospital. Here's something exciting: they actually all talk together about me! What a difference from how it all started. I was so bad off I couldn't feed myself or go to the bathroom by myself. It was so bad for about 4 months. All I did was lay in bed. No tv, no reading, I was not interested and no energy. Finally at the end of may I was able to go to a physical therapist. He has been phenomenal. I have built stamina and the quality of my life has improved a100fold due to his approach. The neat thing: all the docs work together and what do u know, I've improved. I know it won't go away, but I religiously do my pt and my pt homework and my pulmonologist is happy I'm being active and I can do more without completely losing my breath. I had to close my business that I had worked for for 20 years so that was tough, but I've come to terms with it as I've taken some control of my health and do what I can do when I can do it. When I can't, I rest. It's a change for a workaholic perfectionist, but I've learned that the only person I'm hurting is myself when I fight it.

The right drs make ALL the difference. Not all pulmonologists are familiar with this disease so I wear my bracelet, yes, I cried when I ordered fit, even tho I got a cute one. It was what it meant. But my dr will not put any expiration date on me and that has helped me very much.

Gee, in conclusion, it's related to my earlier heart problem, my right side is enlarged, and a valve is leaking, and if I get bad, it will be a heart lung transplant rather than just one. Not really into that. But my friend told me too bad. If it comes to that, well do it. Ha. My poor husband he has been an angel, so supportive and wonderful, he worries a lot, but I don't find it helpful to worry. I just concentrate on each day and the small victories that I have.

I hope this helps somebody.