[Editorial Note: I am writing this blog from my nursing perspective]
One of the biggest issues in CHD care that is often not discussed is the lack of an appropriate “medical home.” What is a medical home? It is a primary provider of care that will look at their patient in a holistic manner. Some patients feel more comfortable with their cardiologist acting as their primary care provider, but I’m here to advocate for a non-cardiologist primary provider.
I understand from a patient perspective that there are many reasons for wanting to have your cardiologist as your medical home:
- They know what is or is not safe for your unique heart.
- They understand the long-term issues caused by your congenital heart disease.
- Fewer appointments = less of your time and money.
- Why go see someone who doesn’t even understand your unique concerns?
- You have an established relationship with your cardiologist.
- You can just go to an urgent care or ER if you have a non-cardiology issue.
Here are the reasons I am advocating FOR a non-cardiology medical home:
- Holistic assessment at every visit.
- They tend to have more clinic days and times, making them more accessible.
- They can work in partnership with your cardiologist and consult when they’re unsure of any cardiac concerns.
- Many times, based upon your insurance, other referrals will need to come from a primary care provider—not from a specialist (such as your cardiologist).
- They help manage things with your cardiologist – INR management, frequent blood draws, or even urgently seeing you if your cardiologist is far away.
- We’re aging adults and we’re not immune to other acquired diseases; we all need a doctor performing standard preventive screenings.
- Urgent care looks at things they can quickly fix and ER’s triage patients based upon critical care needs – there is not usually a long term follow-up care plan established with either of these medical institutions.
- There can be long-term issues that are related to our CHD but not cardiology issues (psychological impairment, neurological impairment, lung disease, musculoskeletal issues, nerve damage, chronic pain, and other congenital anomalies, etc.) that your primary care provider can help with.
The transition from pediatric care to adult care can be a difficult time for young adolescents and adults with congenital heart disease. We often focus on the transition from the pediatric cardiologist to the adult congenital heart cardiologist – an important process for sure, but we must not forget about the transition from pediatrician to adult primary care provider. This will help to establish the medical home early on and prevent gaps in primary care.
Ultimately, a primary care provider is the conductor of your medical orchestra. Without your conductor you’d be all strings and no horns. Obviously, our cardiology care is a focus of our healthcare, but we can’t forget the other parts of our health, and a primary care provider is best suited to screen for and manage these issues.
If you don’t have a primary care provider, you can find a list of covered practitioners on your insurance website, talk to your local friends, or ask your ACHD team to see if there is someone they recommend or already work with. Do you have a primary care doctor? Do you find it helpful or have you experienced frustrations? I’d love to hear about your experiences with this model of healthcare delivery in the comments below.
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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.
The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.