What Daily Disease Management Looks Like With PH

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by Anna Jeter |

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I was diagnosed with pulmonary hypertension (PH) at the young age of 4, so I don’t really remember life without it. The tasks and routines associated with PH were a part of my day before I’d even begun elementary school. Because I was so young, I was able to give myself over to disease management pretty easily.

With that said, I know that many people are diagnosed later in life. I spent some time thinking about what that experience must be like. It would certainly be more difficult to instantly adjust your life due to illness, rather than growing up with it and adapting over time. As someone who is always seeking specific guides and details regarding what to expect medically, I know that if I were diagnosed today, I would appreciate some insight into daily life with PH.

To be clear, everyone’s PH treatments and regimens are different. But over the years, I found my experience to be similar to that of many of my PH peers, and hopefully sharing it can be helpful to those walking a similar journey.

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A common PH treatment is intravenous medication. Some people may be started on this right away, and some may never need it. This treatment has been updated over the years, and other options are becoming more accessible, but ultimately, many PH patients may still require IV Remodulin (treprostinil) or Flolan (epoprostenol GM) at some point. This results in two major daily considerations: central line care and intravenous medication mixing.

I only did central line care after showering, which I limited to once or twice per week to avoid the hassle. The bandage must be changed after it gets wet to prevent infection. I am proud to have only one line infection during my 19 years with PH, and I attribute this to diligent, sterile care and a whole lot of luck.

For me, the medication running through my central line was a much more frequent concern. With the IV pump I used, I had to mix my Remodulin medication every other day during college. This was an improvement from the daily mixing my mother undertook when I was on Flolan as a child.

Depending on the medication, you may also need to carry ice packs with your pump to keep it cool. There are many medication and pump combinations available, and you can work with your PH doctor to find the right option for you.

Along with IV medications, oral medications are also a crucial aspect of daily PH management. For most of my illness, I took a handful of medications in the morning and at night before bed. This routine became a habit, which I’m grateful for as I now manage my critical post-transplant medications. For anyone who struggles to implement a good routine, I recommend phone alarms or a similar reminder system. Pill trays are also vital for weekly medication organization.

The final part of my PH care regimen that came further in my illness was sleeping with oxygen. I began this during high school and continued to use it throughout college, up until my transplant. I was resistant to this change, but quickly found it wasn’t worth skipping out on, as it did improve how I felt.

Many who live with PH may also require continuous oxygen throughout the day. Again, there are several machines and modes of delivery for oxygen, so make sure to talk to your provider about your options.

These were my main points of concern regarding disease management while I was living with PH. During times of increased illness, I perhaps had to put more care into my daily task list, but ultimately, medications and central line care were my primary concerns.

Complying with my day-to-day cares was crucial for my long-term success in fighting PH, and it also helped to prepare me for my life post-transplant. Adhering to medication schedules is one of the best ways to stay on top of your illness. Many aspects of PH are out of one’s control, but complying with the cares that this illness requires is one way to take back some power over your own physical success.

PH can be a complicated, intimidating, and isolating illness. But within the community itself, there are many commonalities among patients. For anyone newly diagnosed, I recommend building your PH network and connecting with others who are familiar with the unique circumstances of this illness. Health literacy is also a huge benefit. Ask questions, seek research, and learn as much as you can so that you can become your own best advocate and caretaker in this fight.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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