Taking Turns While Sharing Responsibility for Our Son’s PH Care

Taking Turns While Sharing Responsibility for Our Son’s PH Care

When my husband and I said our vows, “To have and to hold … in sickness and in health,” we had no idea to what extent that promise would be tested. Our child’s diagnosis with pulmonary hypertension (PH) was like an earthquake shaking the foundation of our marriage and family. We were terrified and desperate to rescue our sick son, protect his brother from the emotional chaos, and keep our family intact.

A right-heart catheterization confirmed the diagnosis and then came the aftershock; there would be no rescue because there was no cure for PH. Treatments were offered to provide quality of life, but statistically we didn’t receive much hope for survival except for the possibility of a heart and lung transplant.

Traumatized, we faced the unknown with no greater plan than to utilize each other’s strengths and to lean on the other when overwhelmed. In other words, to this day, we are caregivers to each other as well as to our children.

I’ve heard it said that you learn everything you need to know in kindergarten. I can attest to this because childhood lessons helped us transition into our new normal. Credit goes to the simple practice of taking turns and sharing responsibility. When one of us needed an emotional break, the other would step forward to see to our family’s needs.

Our son had a central line placed and for five years carried a backpack containing a pump that intravenously provided a medication called Flolan (epoprostenol) 24 hours a day, seven days a week. This medication had to be kept cold, so ice packs were replaced several times a day. We were trained on how to mix the Flolan, adjust the dosages as needed, attach the cartridge to the Cadd Legacy pump — and to know how to stop, start, prime, and troubleshoot it if it alarmed. We learned how to get air bubbles out of tubing and what to do until medics arrived if the central line was compromised, preventing the medication from reaching him. It was a lot of responsibility, and our son’s life depended on it. How did we manage? We took turns every day doing all of the above and more.

The central line required dressing changes that were often painful because of skin breakdown from the cleansing products and dressings. My husband took on this job entirely, and, in turn, I managed the prescription and supply orders and maintained the weekly pill case.

We had big boxes of medical supplies delivered once a month, which we organized and placed into gallon zip-lock bags — one for each day of the month. I took our son to medical appointments and stayed with him when he was in the hospital. His dad worked from home and took care of our youngest son. We performed a delicate balancing act every day, seeing to the needs of both boys and making sure that they felt loved and safe no matter what was happening.

In addition to the dramatic change that PH caused in our lives, there was no avoiding the day-to-day challenges. Because both of us were working full-time, we shared the responsibility of balancing our jobs, seeing to the unique needs of our critically ill son, attending the sporting events of our other son, and helping both with homework. I did the grocery shopping and my husband cooked the meals. I made sure the bills were paid and he worked hard at his job, especially after transplant when his salary became our sole source of income and the primary health insurance provider.

Our son battled PH for five years until his health declined and he eventually received a heart and double lung transplant, out of state. For four months, our family was split in half. I was in one state helping our son recover from transplant, and my husband was in another, working and taking care of our other son, who was still in grade school.

When united once again, a new balancing act took form. Our son no longer has PH, but keeping him well post-transplant has also required a lot of care.

Together, my husband and I, along with the support of countless friends and family, built a happy life for our family while managing the challenges of PH.

I’m sharing our experience to encourage others, especially those who have been recently diagnosed. Pulmonary hypertension is overwhelming, but despite its challenges, you can enjoy life. The treatments require a lot of attention but they are manageable. It becomes routine, and you will eventually find time again for the important things in life, such as family and friends.

I’m sure that you can manage alone, but my advice is to find someone who can assist in your medical care. If you are a caregiver, do the same for yourself. Educate and train another person, bring them to a medical appointment or support group. Practice those old lessons of sharing and taking turns. You’ve got this!

***

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.

4 comments

  1. Carol says:

    Colleen
    Bless you and your husband ,I can’t imagine the stress this must have put on you and your husband. Your children are bless to have such wonderful parents.
    Glad to hear your son is doing well hopefully your struggles are behind you.
    Thank you for all the kind words you sent my way.
    Have a wonderful holiday

    • Colleen Steele says:

      Thank you Carol! It has been a long journey but my son is doing very well now. I also appreciate your kind words and wish you better days ahead!

  2. betty l davis says:

    when my daughter was diagnosed with pulmonary Hypertension there was no help just a lung and heart transplant, but they had only done 1.they discovered it in sept she died in the end of oct.Thats 37 years ago as as I try to keep up on PH .I don’t believe they have made much progress.

    • Colleen Steele says:

      Betty, I am so sorry to hear that you lost your precious daughter to PH! There is still no cure but there are treatments now that provide patients with a better quality of life for a longer period of time. My son did well for 5 years before needing a transplant, and many have remained stable for much longer than he did. I believe there has been progress but the sad reality is that it is still a life threatening disease. Thank you for continuing to follow the research and I hope that the both of us someday get to witness developments in PH that provide much more promise for those living with the disease.

Leave a Comment

Your email address will not be published. Required fields are marked *