We commonly think of change as a new experience. It can be unfamiliar and require effort to come to terms with, but it also can be a repeat of old challenges, forcing you to relive the past. Whether it comes in an old form or new, is welcome or not, the adage is true: “Change is hard!”
This is especially evident when change presents fresh challenges to familiar situations. Part of you wants to revert to old coping mechanisms, but the differences can elicit feelings of anxiety, fear, sadness, and stress. This internal conflict can really mess with you emotionally and physically.
In August, my son Cullen will celebrate six years since his heart and double-lung transplant. For the most part, he looks and feels healthy, but some of his medications have side effects that negatively affect his kidneys. This is reminiscent of the five years he lived with pulmonary hypertension (PH), when he looked healthy but was struggling with a life-threatening disease.
At the end of last year, Cullen’s kidney disease progressed to stage 3. In this stage, many patients experience physical challenges that can be worrying. Cullen’s challenges have manifested primarily as high blood pressure and its related symptoms.
When his blood pressure is stable, it is easy to forget the hidden dangers of kidney disease, but just like with PH, test results do not lie. They are indicators of impending problems and change lurking in the shadows. Every month, Cullen’s lab work wags a finger at him, reminding him to drink at least 2.5 liters of water every day, or his blood pressure and creatinine climb to concerning levels.
It is possible to remain stable in stage 3 kidney disease for several years, but when it progresses, the patient will probably need dialysis and a kidney transplant. In the meantime, Cullen’s heart and lungs are showing signs of wear commonly seen in patients five years or more after transplant. We hope these minor changes do not progress and his organs remain stable long into the future, but the need for careful monitoring is a reminder that his health has and always will be fragile.
On the day Cullen was diagnosed with PH, we were told the worst-case scenarios. That experience has taught us to focus on the here and now, or else risk losing hope for the future. We have found peace in the positive that Cullen hasn’t had an emergency in years — until last week. In the middle of the night, Cullen began feeling sick, and a quick test revealed his blood pressure had skyrocketed. Once again, we were making the familiar late-night trip to the emergency room.
Thankfully, test results made the doctors confident that it was not heart-related, but rather a symptom of Cullen’s kidney disease. An emergency dose of a calcium channel blocker and intravenous fluids stabilized his pressure, and he felt much better when discharged.
Returning to the ER after so many years was unnervingly familiar, but something also felt different. While talking to the doctors, I figured out what it was. Cullen’s PH years had left us with knowledge and experience that provided some comfort even when his health was at its worst. With PH, we were never happy about his deteriorating health, but at least we weren’t operating in the dark. We kind of knew what to expect.
Kidney disease has reset us back to square one. We know very little about kidney disease, so although hopeful, we’re also fearful of the unknown. His ER visit was a wake-up call that we need to educate ourselves about his new condition.
Cullen’s brother, Aidan, drove us to the hospital for this recent emergency. Because of the policy of one adult per patient, Aidan waited in the car for six hours. He could have gone home but insisted on staying in case we needed him.
As a child, Aidan remained home with his dad or another grown-up during his brother’s emergencies, but as an adult, he wants to play an active role in helping when he can. This is an example that even in the worst of situations, not all change is bad. I wish Aidan didn’t have reason to worry about his brother, but I find it heartwarming that he does.
As for me, I am trying to keep myself from panicking about change that has not happened yet. Instead, I’m attempting to change my focus to learning about kidney disease so I can better advocate for Cullen and maintain our foundation of hope.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?