I'm sorry if I have offended anyone. If I could delete this topic I would. I have just been feeling overwhelmed and need information.

Wanda

Hi Wanda, Excellent question! I think it is important to deal with the truth. My doctor just told me my lungs "look good" at this point and come back to see him in January. Doctors will never give out information on lifespan, they will only encourage you.

My dad died of aspiration pneumonia last September. Dad had some swallowing problems and he occasionally would throw up after he ate. He had no idea that he had food in his lungs. My mom had to call 911 when he did not come out of a low blood sugar. When he got to the hospital, the paramedics just happened to do a chest x-ray and they found the food in his lungs. My dad died after two weeks in the hospital. The entire time, one doctor said," He might die." The other doctors just said he would get better. The hospital pumped lots of antibiotics into him non-stop and practically tortured him to death. This experience was when I knew that doctors do not know what the h--- they are doing when it comes to treating lungs!

Treatments for PH are experimental to help with symptoms, but there is no cure. I have read several scholarly papers on the internet about my Secondary Pulmonary Hypertension. I know that my PH is due to a disease caused by my Dermatomyositis. In the papers that I have read, I think I am looking at 6 months to 29 month lifespan. Primary Pulmonary Hypertension has a longer lifespan where some people live for 5 to 10 years. I do not know about the quality of those years.

Wanda, it is absolutely pointless to become upset about lifespan. God himself determines the time, manner, and place of our death. The important thing is to accept Jesus and gain the wonderful confidence of knowing your eternal future is secure! To believe in Jesus you can simply say,"Father, I believe that Jesus died on the cross and paid for my sins. I accept Him as my savior." In that moment, you will have eternal life. Acts 16:31 Believe on The Lord Jesus Christ and you shall be saved. At the moment of salvation, you will not feel any different, but God the Holy Spirit will give you 40 things instantly. One of those 40 things is guarantee of eternal life forever in the presence of God. You can never lose that eternal life. The scripture says, "I give unto them eternal life, they shall never perish, neither shall anyone pluck them out of my hand." John 10:28.

If you would like to feel hope and peace about accepting Jesus, then google the Billy Graham Evangelistic Association. On this site you can listen to some of Dr. Graham's sermons. I promise that you will feel much better and have some hope. We are all in the same boat. I will put in a prayer for you. Your question is a valid one that we must all face.

I relied on the internet to the extent that I imagined my doctor had said I had about two years. I spent the first year, needlessly, thinking my life was going to be just one big to do list: make a will, etc., and I felt like it would be better if I died so my son would have my life insurance. My estimate of my lifespan was also colored by my reading "Dispensing With the Truth." I got my PAH from diet pills like the girl in the book who died within the year she took the same pills. Compared to now, I was much, much worse at my diagnosis, however, I take two Adcirca each morning and six to nine Ventavis treatments every day and I am much better. I was diagnosed in August 2009.

When I went back to my specialist I asked her, not how long I was going to live, but, rather,if it was going to hurt when I died from heart failure and I mentioned my idea that I had two years and she said, "No, no, there are people living longer and longer." There are people in the UCLA support group who have 10 years. So, take the medicine if they prescribe it, contact me if you need someone to talk to, and you'll be fine, at least that is my sincere hope for you. If you're taking Ventavis I have a system that saves time, and if you're having trouble paying for meds or need to go on disability, I went through it with books on the subject and would be more than glad to help you skip those steps.
The other commentor was right, the doctors won't tell you how long, but I have gotten the same answer from my specialist and my other lung doctor -- people are living 10 or more years. All the best, try not to worry.

trpt1.. Thank you for the encouragement. I accepted Jesus a long time ago and without Him I wouldn't have any hope. Sad to hear about your Dad. I can't imagine what you and your Mother had to go through! I know that, ultimately, God is in control.

susurus.. Thank you for the information. I'm not on medication yet but I will see the pulmonologist Tuesday to see what he wants me to do. I had a stress echo (that's how they found out what I had) and a PE test to rule out embolisms. I'm not sure what other tests (if any) they will need to do before I can go on medication.

I have been telling every doctor I see that it feels as though I'm not getting enough oxygen and each doctor said I have Asthma. I already knew that I had Asthma but I also instinctively knew that there was something else. I went to the emergency room due to chest pain and breathing difficulties. They kept me the night in order to do a stress echo in the morning. The ER doctor said my heart was fine and I could go home. I told him that I overheard the doctor that did my stress echo say that I had Pulmonary Hypertension. And to that he replied "just follow up with your primary physician, your heart is fine".

I went away thinking I was okay. When we got home my husband thought he would look it up online just to see what it was. He came to me almost in tears and explained what he had learned. So here I am trying to educate myself from patients who have already been through it.

Thank you both for helping and for listening to me.

I too have this same question. How long do I have? I was just diagnosed with PPH recently by my pulmonologist. He's sending me to University of Michigan to see a specialist there next week. Im so scared. I'm 32 and a single mom of 4 young boys and a full time nursing student. My life is changing so fast lately. I don't feel good. I'm dizzy alot, weak, and feel like I'm breathing through a pillow when I just do the laundry. I have good days where I feel good and then I have bad days. My primary doctor thought PPH was from my last pregnancy and when it showed up again in last years echocardiogram she thought it was my asthma (which I use to have as a kid). She treated me for asthma and did her best to eliminate the other possibilities, but when I still struggled despite all the inhalors she sent me to a pulmonologist. My xray is clear and my lung capacity is huge which is good. But my recent echo came back with a pressure of 60 which I'm not sure what that means, but the pulmonologist didnt like it and sent me to Ann Arbor.
I'm scared. My whole life is changing, I can't keep up with all I'm used to doing. I'm so frustrated. When I researched this disease to find out what changes I can make I found other information and the life expectancy statistics. I was shocked. I don't know the cause of my PPH, but I'm hoping they find out. Hoping they fix me soon so I can get back to my life. I read all these posts and find a little of me in each one. Thank you for sharing your experiences, it helps me feel not so alone in this. ~Sara

Sara, I understand your fear and anxiety and why you would feel alone. Even though I have a loving husband I still feel somewhat alone and isolated. The unknown is always the hardest to deal with. I wish I had answers for you but I'm still learning about this myself. It has to be doubly hard that you have young children and are so young yourself.

My pulmonary function test was also great. However, I think they need to document what it does to the patient. I was able to perform the test but it left me exhausted and weak. I wasn't able to talk until he gave me the oxygen. So I think it would be more accurate if they observed what happens to the patient while doing this test.

Please keep the faith. There is a lot of help for us now.

Blessings to you and your family,

Wanda

The medications help.

The support groups (i.e. http://www.phassociation.org/)

There is a book they have there that is worth every penny, "Pulmonary Hypertension: A Patients Survival Guide" a resource book written by a PH patient and published by the Pulmonary Hypertension Association. (http://www.phassociation.org/SurvivalGuide)

There are foundations like Caring Voices that can help.

Make sure you see a specialist who is an expert in PPH or PAH at least at the beginning because regular lung doctors and primary care physicians don't deal with it on a regular basis.

susurus... Thank you so much for your help! I will look into the book - I love to read anyway.

I am seeing a Pulmonologist. Is that what you're talking about? If not, please let me know. He is the only specialist in our area. I can hardly wait to (hopefully) get medication. I have been having episodes every day for some time now. I can't even relax in the bath tub because it's too much pressure on my chest and makes me feel as though I'm smothering.

Thanks again,

Wanda

Oh, Wanda, I'm so sorry. If your pulmonologist deals with PH and is up on all the latest treatments, then that's okay. I have a lung doctor who is not a specialist in PH but can monitor me and was the one to send me to UCLA in the first place. So I have a specialist that I rarely see and a lung doctor for in between.

If you are prescribed the medicine it is very expensive, but there are foundations that can help you pay for them. All of that information is in the book, also getting insurance, or disability, or support in your area, etc.

Have you had a right heart cath yet? Do you have someone to help you? I wish you all good days and no bad -- Get the book it is comprehensive and very, very helpful.

Leigh

Leigh,

Thanks for getting back with me. I looked up my co-payment for Tracleer and it appears to be only $25.00. I sure hope this is accurate.

I have not had a right heart cath as of yet. I go to the Pulmonologist tomorrow and will find out where we take it from here. Thank you for the hope of good days!

Wanda

Leigh,

I forgot to answer one of your questions. Yes, I do have someone to help me. My husband does a lot of the things I am not able to do right now; don't know what I would do without him! He tries to make my life easier.

Wanda

Hi Peaceandjoy, You are asking the same question all of us want to know. I feel the same way, not sure I should ask but have to know the truth. I dont have answers unfortunately. All I have are question too. But I guess I'll be here till the end, when ever it is. We will probably really need each other before this is over. Good luck Wanda and please keep us up to date on your journey.

Hi Fonzy09,

Thank you for your reply. I hope someone else might be helped by these posts also. I agree we all need each other.. those that can identify with this struggle. I will, indeed, keep you updated on my journey... please keep us updated as well. We need more people on this board. I think everyone has a lot to offer and we all need help and reassurance.

Peace and Joy for today,
Wanda