We are in a new age of cystic fibrosis. There are more adult CF patients (older than age 18) than children with CF -- around 55-45 percent, according to the most recent Cystic Fibrosis Foundation Patient Registry. I am among the 55 percent, and I find myself inside the transplant world.
When I started seeking transplant beginning in 2018, I figured the transition would be just as easy as when I transitioned from pediatric to adult care. There were bumps in that process, but they soon were resolved, and I settled in like nothing had changed. Transplant was not so easy.
When we find ourselves in new places while traveling, we use a GPS or Google Maps to find our way. We have a back-up plan. The transition from the familiar to the new world of transplant is not so easy. With change in our lives comes anxiety about how to resolve the uncomfortable feelings from unfamiliar circumstances. We become so accustomed to the familiar faces of our care teams, the new faces of transplant doctors can be worrisome. Will we get the same standard of care that our CF care team provides? The anxiety that can come toward the end-stage of lung disease and this transition of care should be addressed in a professional, unified manner.
In my experience, there were gaps in the process. For example, I needed many vaccines, some of which were associated with pediatric patients. The transplant center did not have these vaccines readily available, which delayed my inclusion on the transplant list. I also live a good distance from the transplant clinic and hospital, which made it more difficult for me. Luckily, I have an amazing CF clinic team that helped solve the vaccine problem.
I am working to be listed at two transplant centers, which led to me receiving conflicting recommendations. The transplant center at the hospital where my CF care center is located recommended that I change my health insurance to Medicare Advantage. The second transplant center recommended the opposite. To further confuse the situation, the social worker from my CF care center also recommended against Medicare Advantage because of known coverage issues related to immunosuppressant medications that recipients need to take following transplants.
More disturbing is that the transplant center at the same hospital did not communicate with my CF clinic about their recommendation. This lack of communication and conflicting information put a tremendous amount of stress on me, which is unacceptable. Especially when lives are at stake. It is my hope that better coordination between CF clinics and transplant centers will resolve this.
Don't get me wrong. Many transplant centers have become amazingly successful and continue to improve. However, if my experience is common, we need more standardized care and communication across all transplant centers. The CF Foundation and many CF care and transplant programs agree. Lung transplant referral guidelines, published in March 2019, seek to make this process smoother. And I quote, “Communication between the CF Center and Transplant Center is essential for a smooth transition.” All potential transplant patients should be given a copy of the transplant guidelines in clinic or by a transplant provider, as well as partake in discussions over them. I may not benefit from these improvements, but -- hopefully -- others will. And hopefully, the CF Foundation will see my experience as a sign that more work needs to be done to put these guidelines into practice.
By creating closer working relationships and sharing more information, transplant centers and CF care clinics will certainly help to ease anxieties and worries on all levels. This will also improve care for patients and the whole process for health care providers. We all have a responsibility in this transition.
Transparency, integration, and preparation between you, your CF clinic, and the transplant center also will ease the burden and fill in potential gaps by busy health care providers. Delays are costly to clinicians and patients alike. It is especially hard on those who face an hourglass running low on sand. Can we prevent and avoid small hiccups? Certainly! Here are some things I would suggest:
- Provide your care team with a list of questions about the transition.
- Find out if your transplant is covered by insurance.
- Request time or conferences with both your CF care and the lung transplant teams once the transition begins if you feel your needs are not being met, or if you are receiving conflicting information.
- Make transplant more CF-specific and similar to how CF-related diabetes is treated differently -- with more detail -- than in the general population.
Nothing is worse from a patient's perspective than feeling like you are not getting the best care possible, being heard about your concerns, or facing problems from a lack of communication in the process.
If reading the book, “Salt in My Soul,” by Mallory Smith taught me one thing, it is that people with CF need to become more prepared for transplant and everyone -- patients, doctors, families, CF clinics, and transplant teams -- needs unification during these adverse times. Let us all be one in heart and health.