Every Lung Transplant Caregiver should know: “This is a life altering event. The caregiver’s life changes, emotionally, physically, and financially. The caregiver’s life is no longer their own. Your tolerance of the unexpected will be tested. Be prepared to learn a lot of medical information and terminology. Take lots of notes. Buy some type of case to carry all the paperwork and medications with you at all times. I recommend a rolling suitcase or tote, a small one.”
The most difficult aspect of being a caregiver: “The feeling of helplessness; the constant feel of doubt in the care that you are providing to your loved one; waking up to the fear of the unknown on a daily basis.”
As a caregiver I wish I would have known: “Trust the experts, the entire continuum of care that is provided by the medical team. This team of professionals have had the opportunity to review every scenario and possible outcome of the prognosis to determine to the best of their ability and give you the honest truth about what is to be expected.”
The most rewarding aspect of being a caregiver was: “Having the opportunity to see all the work provided to allow your loved one another chance at life is priceless. Looking back over all the hard work put in by caregivers, family, and the medical team. A caregiver’s job is hard work. I personally worked harder as a caregiver than I have at any job in my life. To see the fruits of our labor is simply a blessing.”
I was most surprised as a caregiver by: “The love and care provided by the pulmonary department medical team at the Mayo Clinic, Jacksonville, FL. As a team of professionals, they know that for most caregivers the knowledge for medical assistance is limited. The kindness shown by this group of professionals made life as a caregiver a little more tolerable. It did not matter, no matter what time of the day or night, someone was available to help, even with the simplest of questions, to answer with patience and understanding. I always believed that the ability for one to pay for anything in life mattered in which the way you would be treated, even by the medical field. Yet my son’s medical team treated us with dignity and respect. Always attentive to his every need, and mine. I have never received the medical care that this medical team has and continues to provide for us.”
How I would recommend other caregivers prepare and take care of themselves for this experience and take care of themselves: “Faith and spirituality. For me it was my prayer team. Every day I would get a text that said, “Trust God Always, no matter what…” Having a belief in your higher power, whatever it may be, provides a level of peace to know that all things are possible, including miracles. My belief in God was the power that helped me to prepare for all that was coming at me, even though I had no idea what it was, through my faith I was ready. You see in my faith he promises that “He would never leave me, nor forsake me,” and I believe that; you see God had been preparing me for this life changing event long before it happened. I had recently started a new job with a military schedule, which allowed me to be able to take my son to the doctor, transporting him on my days off, and even arranging for the rehabilitation department to make the schedule to coincide with my work schedule. I was so blessed to have the ability to travel 5-6 times a month for his rehab services, traveling over 230 miles each way. I never had an issue with my car, or safety traveling to and from. My car’s truck was filled with 8-10 oxygen tanks inside. His need for oxygen was very high, it was 2 1/2 hour drive each way. You see my faith helped to prepare me for what was to come, a life changing experience. This is only one example of the many events during this experience; I believe that God was there with me.”
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