The harsh reality of medication side effects in PH and transplant
Multiple medications are crucial to treatment strategies, but they have a cost
In the world of chronic illness, medications can be many things. At best, they’re a blessing, but more often than not, I’ve found them to be a necessary evil.
While living with pulmonary hypertension (PH) for 19 years, I remained on a fairly consistent medication regimen. My doctors occasionally adjusted my dosages and added a new treatment every once in a while. But for the most part, the group of drugs I was prescribed didn’t change.
The side effects weren’t the greatest, but dealing with them was a part of my routine. Plus, even if they became intolerable, I had few alternatives, considering the limited range of treatments available for PH.
A different world of treatment
Entering the world of heart-lung transplant at the age of 23 was a completely different story. The list of medications I’ve started and stopped since 2018 is extensive. While the treatments for transplant are relatively limited within the world of medicine, there’s more than one combination of meds when it comes to achieving an effective immunosuppression regimen.
With that said, each option has its benefits and pitfalls. Some of the most effective treatments are the hardest ones on the kidneys, but the other options tend to have their own unique and nasty side effects, too.
This has been a challenge for me in the past year. I recently wrote about needing to come off one of my immunosuppressants due to a rare and significant side effect. The change has been a positive one, but it also left a hole in my overall treatment strategy.
Working with my medical team, I’ve been introducing and increasing the dosage of a different medication to fill this gap. Unfortunately, that treatment is known for causing significant gastrointestinal (GI) issues, such as nausea, vomiting, and diarrhea. These are things I already struggle with due to chronic kidney disease, so the increase in frequency is pretty impactful.
The trade-off would be to switch to the next option in line, but with this third medication, my doctor has seen side effects that are less common but more damaging, such as pancreatitis. Ultimately, it would be his last resort based on his experience with patients.
It’s a frustrating dilemma. As I struggle through the day-to-day harm of my current side effects, I’m eager to stop taking this medication. The gastrointestinal side effects have led to weight loss and low energy and have negatively affected my ability to exercise and build muscle. That affects my overall wellness and health. With that said, I understand that GI side effects are a day-to-day inconvenience, as opposed to a long-term and irreversible consequence.
Similar to my life with PH, the frustrating part of this situation is that stopping these meds altogether isn’t an option. That means I can’t escape the harm they cause. They are essential to my health and survival in a way that no one can dispute. No matter what, I have to find a way to manage the side effects.
I do my best to communicate all of this with my care team. In turn, they do their best to find solutions for my issues. But I also have appointments where the conversation hits a dead end and the unspoken sentiment is always, “You’ll just have to live with it.”
This is the reality of living with complex illnesses and their complex treatments. I try to give myself space for the grief that comes with it.
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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Comments
Colleen McGarrity
Dear Anna, thank you for sharing your experiences! I have to tell you, I think you are heroic, resilient and incredibly brave! For everything you have gone through, you are a rare diamond of a person that can write with such honesty, truly capturing and evoking my heart in line with yours. I'm 1 and a half
years into my PAH journey and I haven't gone through anything like you have. But side effects of medication have left me 50 pounds lighter with limited capabilities to do every day things I used to take for granted. Even though we have different experiences, I want you to know I have incredible respect for you. I truly wish you relief in any and every aspect, and the recognition that you are never alone.