A question for the Pulmonary Arterial Hypertension Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

A doctor who knows what they’re talking about and will research your particular case to get to the bottom of why you are having the symptoms that you are having. If the doctor does not cooperate or offer any solutions, find a doctor who will, which is what we did. However, it took almost two years of me being bedridden and 14 different doctors before someone finally took the time to pay attention to me and my husband.

Well, I’m recently diagnosed, so I wouldn’t have to travel very far back in time. But basically, I guess, I would just say, I’m working closely with the doctors and that things will be okay. There are treatments available. “Don’t panic.” That was the first thing that I did when I found out what I had. I researched and I ended up very concerned over the lack of treatment that I found on the internet. So I guess the big thing would be don’t panic, just try and research everything and that it will be okay.

Always, always, always be your own advocate. No two people are the exact same with this diagnosis and nobody, not even a doctor, can understand how you feel or are going to feel. So analyze yourself and share those feelings with your doctor, but always advocate for yourself.

Oh, goodness. I guess if I was to go back and talk to me or somebody else about first being diagnosed, don’t Google anything. It’s scares the crap out of you. It definitely does because it tells you you’ve got one to two years to live, in a severe case, which is mine. And just listen to your doctor, discuss everything with your doctor; options, treatments. Don’t Google. That’s probably the number one advice I would give them. Calm down. Don’t Google. It’s going to be okay.

I would tell them that it’s going to be okay. When I was first diagnosed, I was told that five years is not an uncommon timeframe and getting lung transplant is not uncommon. My doctor’s been able to manage it with medication for the most part. And five years does not look like it’s going to be the death sentence that it was initially hinted at. It looks like it can be much longer. I’ve met people that have had the disease for 20 plus years that haven’t had a lung transplant and they’re doing fine. So I would tell myself, take a deep breath. It’s going to be okay. And you’ll get back to life that’s mostly normal and everything’s going to be fine.

I would tell that person that first of all, it’s all going to be okay even though things may seem like they are totally out of control at the moment. Advice I would give them is that to take things one day at a time, but at the same time, stay vigilant and try to get back to doing your normal daily activities as fast as you can. And I would describe to that person that I feel … You’re going, I feel anxious and tired and sometimes just sad. But it’s not forever. It does get better.

The advice I would give to myself would be to not be afraid, that doctors are wonderful. I had the faith then, and I still have faith in God now, that he will take care of me. I feel grateful. I feel so grateful that I’m living in a time where we have the technology that I can go from barely being able to do anything to going to amusement parks with my children. I am just so grateful that I’m able to do these things seven years later.

If I had to tell anyone anything, it takes a while for you. There’s a grieving period that you have when you first get this and you kind of want to isolate yourself from everybody. But as the time progresses, you’ll realize that support groups and everything are very supportive for you and your family, and that support groups are probably one of the things that I would tell somebody to go to at their first diagnosis. Because if I went earlier, it would have helped me a lot, because you get to meet all kinds of different people and you get to hear about different types of therapy you use, and you get to meet people that actually have the same disease as you do.

First and foremost, I would tell that person do not Google your disease. Because it’s just all death, death, death. Secondly, I would tell that person just to breathe. It’s going to take time, but you will make it through this.

I would tell myself in the beginning, not to stress and worry so much because that can send you into a depression, but to stay on top of it. To treat your body well, to take your medications at the same time every day and give yourself the rest you need.

If I could give myself one piece of advice, it would be to slow down. I have to say that being diagnosed is a big part of who I’ve become over the last four years. I don’t know that I would want to change anything.

That’s a very difficult question to answer. I would have to probably go back many years. I was a smoker, and I did smoke up until 2006, but I gave up then and was recovering very, very well. I do have an underlying condition called alpha one antitrypsin deficiency, which basically leaves me very susceptible to major organ failure, whether it be lungs, liver, kidney, heart, etc. With me, it manifested in my lungs, and fortunately I was able to combat that. And I was very, very healthy apart from my lungs, which helped me get through the surgery, get through everything else. I’m a firm believer that meditation and positive thinking, positive energy was a major help in how I dealt with the situation. And I didn’t want to let my condition stop me from doing anything, albeit slowly, or get me down at all.

If I could travel back in time or let me know when I was first diagnosed, I would tell myself to stick to losing weight, to not get discouraged. And I would describe to myself that because I’m not losing enough weight that I could feel better. I’m not bad, but I’m not where I would like to be. If that makes any sense.

I would tell myself to enjoy life to the fullest, as long as I had that energy that I had back then, and to really understand that it’s all going to come to a progression. And so, to basically just enjoy what you can each day because it’s a blessing, and accept the days that you can’t do as much. It’s just part of the disease progression. I also tell myself to take better care of yourself because it’s serious.

I would tell the person that I am, that I was then, just take it in stride. Allow yourself to have good days, allow yourself to have bad days. Follow your regimen to the best of your abilities. Ask for help. Find support groups. Find a good doctor that listens to you and cares with nursing staff that also does the same.