The Mighty Logo

4 Things I'd Tell Anyone Just Diagnosed With Pulmonary Hypertension

The most helpful emails in health
Browse our free newsletters

When I was first diagnosed with pulmonary hypertension I looked everywhere for breads crumbs of hope. I was so desperate to find a bit of light in all of the dark that surrounded me. All the information I found online was scary, and just confirmed the horrible diagnosis I had received. It was also difficult to navigate treatment options, and where to look for support. Because pulmonary hypertension is a rare disease, it can be hard to find the information that you are looking.

Here are four things I wish I knew when I was diagnosed with pulmonary hypertension:

1. It is OK to get a second opinion…

…or a third or fourth.

I am currently in the process of finding my third pulmonary hypertension specialist. It took me over a year after my diagnosis to realize that I could get a second opinion. Because pulmonary hypertension is a rare disease, there are a limited number of specialists compared to doctors who treat other diseases. I thought that I had to stay with the first one who was assigned to me, but realized it was OK to ask for a second opinion.

I was a little worried about asking for another opinion at first, but realized that people do this for other diseases (such as cancer) all the time. Make sure you find a specialist who is up to date with current medical trials, treatments, and studies.

Finding a specialist to treat pulmonary hypertension is also a bit of a unique situation. You literally have to trust your life in the hands of these specialists. This is why it is important that you find a specialist who you are able to have a good relationship with. I found that most of the specialists I have met so far have been very dismissive of my questions and concerns. I want to be active in my treatment. It is important that my doctor not only treat me as a patient, but treat me as an equal and a human.

I need a doctor who will be honest with me, but also someone who is optimistic and rooting for me. I’ve found that some of the older specialists I have met with are a bit jaded, and see me as a dead woman walking (even when I improved my walk test by 100 meters without starting a new medication!)

Remember, your pulmonary hypertension specialist is working for you. Find the perfect team for you. Let your doctors know what you need from them, and don’t be afraid to get another opinion. Find someone who will let you be as active as you want to be in your own treatment.

2. Resist the urge to Google!

The day I was diagnosed, a doctor touched a vein in my neck and made a visibly devastated face. This is when I knew I was not going to get the doctor’s visit I had anticipated.  He mentioned that he thought I had pulmonary hypertension and that I should be sent off for some tests. (Spoiler alert: “Some tests” turned into an overnight stay and two days of vigorous testing.)

While waiting for my tests, I Googled what the heck pulmonary hypertension is because my doctor did not explain it to me, and I had never heard of it before. As I read about it on my cell phone I begged my dad not to look it up when he got home. (He also, of course, Googled it as soon as he could.)

A lot of the information that shows up online is out of date. A lot has happened within the last decade in terms of treatments. Since I was diagnosed, I’ve seen several new medications get approved for the treatment for pulmonary hypertension (hoping they become available to Canadians soon!)

As new medications become available, the future for newly diagnosed patients becomes unwritten. Simply put, we don’t have the data yet for what kind of stability and survival these new medications can offer to pulmonary hypertension patients long-term. This leaves a lot of room for hope and potential. This also means that an old article you found online might be out of date, or simply doesn’t apply to you.

3. Find support.

Dealing with a diagnosis like pulmonary hypertension is very challenging. Children, young adults (especially women), adults, and the elderly will all face different concerns and obstacles after diagnosis. For example, finding out that pregnancy carries a high mortality rate for woman with pulmonary hypertension weighs very heavily on me. This may be less of a concern for someone who is diagnosed later on in life, but they may have different concerns, like who can help take care of them, or who can help take care of their family.

It can be difficult to try and adjust to your life after diagnosis. I know I had many questions and concerns about my future. I also found that I had a lot of questions about my spirituality. (What did I believe in? Do I believe in anything?) I was in a heavy depression after my diagnosis, and truthfully, the fog still rolls in some days.

If you are struggling with your diagnosis (or the diagnosis of a loved one), please don’t hesitate to find help in whatever form works best for you. There are lots of options available, from speaking to a therapist or a counselor to talking to a good friend over coffee, to enlisting the help of a life coach!

4. Try not to focus on statistics.

If you broke cardinal rule No. 2 and Googled pulmonary hypertension, you probably saw some pretty scary looking statistics. It is possible that your doctor also told you about the statistics in terms of survival for people with pulmonary hypertension. As mentioned earlier, there is less long-term data available about the survival rates for people with pulmonary hypertension as new medications are introduced to the market. The future is unwritten, and so is yours.

It is also important to remember that pulmonary hypertension, like any disease, affects everyone differently. Statistics are based on numbers, not individuals. As a whole, pulmonary hypertension is a devastating disease that deserves more awareness. However, through my blog The PHight or Flight Project, I have had the opportunity to share the exceptional stories of other people who have pulmonary hypertension for the segment called PHighter Friday.

I have had the chance to share some very exceptional stories, ranging from people who have been on supplementary oxygen for more than 20 years and have found ways to garden every spring and summer. Others have had pulmonary hypertension for a few years, but have managed to return to work and adapt. I have also spoken to several people who have had pulmonary hypertension for 30 to 40-plus years and still golf!

I understand these cases do not happen enough, or I wouldn’t be here blogging about pulmonary hypertension. I am not certain what will happen to me, but the optimist in me always tries to hope that I can be the exception, and I hope that you can be the exception, too.

Even if I can’t be the exception, I have managed to make some cherished memories in the past year — something I didn’t think could be possible the first year after my diagnosis.

This blog was originally published on Pulmonary Hypertension News.

Originally published: September 1, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home