A mom of a fellow CHD patient messaged me late last week about my experience transitioning some of my care to adult doctors. Her child still has some time before she turns 18, but she wanted to start doing some research and preparing her family for the transition. I realized though that I could share my story with this mom or I could share it with tons of other families and patients who are transitioning or will eventually transition into adult care.
There are plenty of hospitals and centers that will claim that they have ACHD doctors and a center to take care of aging CHD patients. But the truth is, having an ACHD doctor is just a small part of the equation. In Pennsylvania the echo-tech told me she had only two years experience with CHD patients. Her training and experience had been on adults with acquired heart disease exclusively up until then. Even now the vast majority of her daily echoes were on acquired patients so for every adult CHD patient whom she does an echo on has to have the ACHA doctor come and check the results to make sure it is what a CHD patient needs. If the doctor isn't available to check before the test is done, you just have to hope that it was done properly. Also despite being told by the ACHA doctor that CHD patients should not be stopped during a six minute walk if their oxygen sats go below 85 (because that is normal for us and that is how the test for CHD patients have always been done), they still stop us - making for inaccurate test results that don't properly display our condition. When my sister, who also has CHD was seen by a doctor to check her heart and lungs before vocal cord surgery at the Mayo Clinic in Phoenix he commented that he "hadn't heard a repaired Tet in 24 years!" On top of that, there are concerns about the training/understanding of CHD of the ER staff and the training of the CVICU staff in an adult facility. Maybe these are not concerning for those would not be considered complex but for me it is frightening. When looking for a program or involved in a program adults should know what to look for and what to ask about. Appropriate care involves so much more than a doctor. All of these things need to be addressed, or they'll never change and patients will not be getting the adequate care they deserve.
I want to remind everyone that for my CHD, Pulmonary Hypertension and arrhythmia issues – I still see pediatric cardiologist. However my allergist, pulmonologist and transplant doctors and surgeons up in Pennsylvania are all adult.
The more simple issues with me, such as allergies, I have had no problems with. But I think it’s because she also does pediatrics. I’ve noticed that pediatric doctors have a tendency to be more compassionate and understanding. My mom is always allowed in the room for any test or shot I have to get. When I cry from the pain, they don’t get annoyed. They rub my back, give me tissues and even offer to let me sit in an exam room for some privacy.
Sad to say, that is not the same up in Pennsylvania. While they are allowed in for the doctor appointment, they are very insistent that my parents are not allowed to be in the room for tests. (I have insisted though despite their eye rolls and sighs that my parents will be present for all tests). They don’t seem to understand that my mom has been with me for every test since I was a baby. They don’t seem to get that as a patient, tests are terrifying and sometimes even painful. Yes I’m 22, but that doesn’t mean I don’t need my mom. Heck even when I’m 50 I’m still going to want my mom there to comfort me. And what’s wrong with that? Instead of asking the tech if my mom could be in the room for a stress test I told her, “My mom is going to come with us.” She started to tell me that she’d have to wait outside the room since the room was so small and she’d get in the way. What kind of excuse is that? I shook my head and explained to her that my mom has been with me for every test and that stress tests in particular feel terrible, so she was going to be in the room or I would have to decline the test.
Stress tests are by far one of the worst things I have ever had to do when it comes to medical procedures. Yes needles hurt and I cry. Yes blown veins are painful for weeks on end. But stress tests make me feel like I am going to keel over and die. I’m fully conscious while doing this. I can feel my heart pound against my chest. My mouth goes dry and I start gasping for air. I always worry that I’m going to pass out one of these days – and if I do, I want my mom there. At the pediatric center where I have gotten these done before, my parents have always been allowed in the room. No problem with the “room being too small to fit everyone in it.” Or any of the other ridiculous excuses they give. The tech who does the tests in the pediatric location has known me since I was 12 years old. We have good communication. He can tell just by the way that my eyes droop or my face turns pale that he needs to slow down the test or strop it completely. He listens to me, he trusts my judgment and he trusts my parents’ judgment as well. This new center though doesn’t. (And that’s not to say we won’t get there). But for the time being, I insist that someone who knows my body and my signs of distress will be in the room.
I’ve also noticed that adult practices are terrible at returning phone calls. When I call any of the pediatric practices that I am a patient at – I hear back from them within two days if not in a few hours. Sadly, the same cannot be said for the adult clinics. Do they not care? Do they not realize the stress and anticipation that comes with waiting for answers? The surgeon who agreed to do my transplant said he’d call within the week… I waited a whole month. He finally called when my mom sent his office the link to a blog post I did about how stressful and agonizing it is to wait for a phone call. Just call us back. Even if the tests haven’t come in yet or you haven’t figure out what to do yet – call and let us know you’re still working on it. These are life and death situations… can’t you understand how stressful that already is and that waiting for just a simple phone call makes it even worse?
If you look at statistics, children typically heal faster. Which, yes, can be attributed to the fact that bodies are younger and stronger. But I strongly believe that if adults were treated with the same compassion and understanding that pediatrics were (and the staff were properly trained to take care of ACHD patients), they’d heal faster to some degree and with possibly less complications. Comfort us. Hold our hands. We get scared, just like kids. Just because we’re adults, please don’t expect us to suck it up and deal with it. Most of us having been “dealing with it” our whole lives and the way we deal with it is by holding our mom’s or dad’s hands. It’s gotten us this far and if you’d let us, it’ll get us even further.
Hope and Love,