“Success is the sum of small efforts, repeated day in and day out.” My son Cullen could have been the poster child for this famous quote by Robert Collier.
The 20th century American author of self-help books believed that “when it comes to finding true success, one needs to be willing to commit to their plan every single day, put in the necessary work at a consistent rate, and form healthy, helpful habits that aid in personal development.” The way my son has lived his life gives testament to Collier’s words.
An important part of self-advocacy are the small efforts repeated day in and day out. It’s been crucial to Cullen’s lifesaving development.
When living with pulmonary hypertension (PH), he rested as needed and avoided activities that would leave him breathless. He faithfully took his medications on time and protected his Flolan and milrinone central lines. He carried their intravenous medication pumps 24/7 in a backpack and kept the cartridges cold by replacing reusable ice packs multiple times a day.
He carefully balanced his water intake with his diuretics — too much would risk edema, and too little could cause dehydration. When right-heart failure made eating full meals difficult, Cullen nourished himself with small snacks and shakes throughout the day.
These small efforts were not in vain. Cullen survived PH for almost six years longer than he would have if he didn’t commit to them daily. This was something Cullen’s doctor pointed out when breaking the news that it was time to list him for a heart and double-lung transplant.
Cullen deserved the credit for remaining stable for as long as he did, but the decline was not his fault. His PH reached a critical point in which treatments were no longer effective.
While hospitalized and waiting for the transplant call, Cullen kept his body strong for surgery by getting out of bed and taking walks around the nurse’s station. This seemingly small effort was hard for him to do. His overworked heart and lungs made his body feel weak, but he kept trying to put one foot in front of the other. Staying nourished became increasingly difficult, but with encouragement from the nurses, he would set his watch to eat and drink a little throughout the day and night.
Last August, Cullen celebrated six years post-transplant, thanks to his donor, doctors, and his own self-advocacy. He takes a lot more transplant medications than he did for PH, but remains committed to taking them on time, every day. Cullen practices healthy habits and has been doing so long before the pandemic pressured others to make the effort. Since receiving his new heart and lungs, Cullen has faithfully worn a protective mask when out in public. He avoids large crowds and frequently washes his hands.
Years ago, Cullen started to reject his new lungs. He received daily high doses of steroids and underwent photopheresis to slow the decline. A side effect from the prednisone was extreme weight gain, but stopping the rejection was well worth the pounds. Eventually, the steroid dosage was lowered, and Cullen lost the weight by counting calories every day and avoiding unhealthy snacks.
For five years, he has maintained a healthy weight, but now is facing another nutrition challenge. Immunosuppressants caused kidney injury that slowly turned into stage 3 kidney disease. Since then, Cullen has struggled with high blood pressure.
Finally, after several years of medication and dosage changes, the best blood pressure treatments for Cullen have been found. But Cullen discovered through self-evaluation that it requires consistent effort from him to help the new medications remain effective.
He made the decision to go cold turkey and give up all caffeinated drinks. In fact, he only drinks water. This helped, but not enough. Several times a week, his blood pressure would suddenly jump from healthy to high, making him feel extremely ill.
More research and self-evaluation brought him to the conclusion that it was time to put himself on a restricted sodium diet. This has been very effective, but I noticed he was only eating one meal a day. We discussed this concern with his nephrologist.
The doctor commended Cullen’s efforts and pointed out that usually patients find it difficult to restrict themselves the way he has. But he had taken his daily regimen a little too far. Cullen must once again adjust his efforts, this time to include more nutrition. He will be trying the Mediterranean Diet that his doctor suggested.
Don’t get discouraged if the outcome of your efforts doesn’t achieve the results you were hoping for. “Success is the sum of small efforts,” but realize that as your goals change your efforts should as well.
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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