By Cassi Friday
Does anyone else find it overwhelming to keep the appointments, medical offices, and treatments all straight? To remember the entire medical history, to have to explain HHT for the thousandth time, or to spend forever waiting on a hospital line to speak to someone? When you don’t have an actual medical case manager, you often take on that role yourself. I have been juggling four hospitals and several medical providers for our 1 year old daughter and it is exhausting!
To recap, Eleanor has HHT and she also has a congenital heart defect.
Here is the list of medical providers we have for our life with HHT:
- The OB/GYN staff at our military hospital who see and monitor me and baby during pregnancy (we are having another baby, hooray!!)
- The Maternal Fetal Medicine staff in Topeka who also see me and monitor baby during pregnancy to watch for HHT complications in utero.
- The cardiologist at University of Kansas (where Eleanor was delivered) who treats El’s heart defect.
- The genetic counselor at Children’s Mercy in Kansas City that coordinates genetic testing and is now working with us for this second pregnancy.
- The HHT Center team at St. Louis Children’s Hospital that screened Eleanor for AVMs and still helps with her care.
- The Pediatrician at our military hospital who does routine care for Eleanor and well-baby checks.
Wow! This list blows my mind when I write it all out – our kids are pretty special to get all this attention, huh? Not to mention the fact that we are a military family and the turnover rate of providers at our hospital is wild! I have seen a different OB/GYN or midwife at every appointment and Eleanor’s pediatrician just moved away! We also just found out a couple weeks ago that we will be moving across the country to the east coast in three months! Now, I have to find all new providers for me, Eleanor, and baby #2 and start this whole process again!
The goal of this blog post isn’t to complain about how hard it is to keep it all straight (Although, I have to complain a little – you all are the ones who get it!), but to share some of the tricks I have learned that help keep me sane…. Or kind of sane.
- When dealing with multiple providers and locations, the best thing I have found to do is keep a copy of all the medical records for myself. I bring these to every appointment and I have them organized in a folder. The genetic test results, MRI results, growth charts, echocardiogram results, etc. are all available should the next provider need any of the information. This is so much easier than trying to call hospital X’s medical records department and have them fax or e-mail everything to hospital Y. As the staff checks us into the appointment, I hand over the folder (or pick out some relevant information, like the most recently added records), and ask them to copy it for Eleanor’s file and pass it along to her provider.
- I also keep a couple copies of relevant HHT literature. As you have likely encountered, most providers are vaguely familiar with HHT, but don’t remember much about it. It saves them from having to dig through their textbooks and they get good, succinct information. Here are some examples of what I use (all of which can be found on the Cure HHT website under the Resources/Hot Topic Breakdown:
- Children Need Screening Too – this article was actually written by the nurses who staff the HHT center at St. Louis Children’s and is a great summary of HHT, complications, and who needs what screening. I am blessed to have formed a relationship with Lynne and Lori, as they are my first call when I have a question about Eleanor’s care.
- International Guidelines for the diagnosis and management of hereditary hemorrhagic telangiectasia – published in the Journal of Medical Genetics, this is the most comprehensive document concerning standardized care for HHT patients.
- I get direct phone numbers to all the medical homes, clinics, and medical records offices! This is SO much easier than calling the hotline and pressing a million buttons only to be rerouted somewhere else. You may have to do this the first time, but once you get the clinic on the line, ask them for their direct number and put it in your phone. This has saved me so much time. For example, I had to give the cardiologist the number to the HHT clinic just yesterday so they could call for a consult. It is also useful to jot down fax numbers or addresses!
- Don’t be afraid to ask for help!!! If there is something you need to relay to another provider, but you aren’t sure you understand it, ask the nurse to call and explain it for you! This will save everyone time and confusion in the end. When dealing with multiple providers, you definitely don’t want miscommunication.
- Try to be patient. This one is hard. After all, you, your babies, or your loved ones have an uncommon genetic disease. You may be tired, you may be sick, you may be about to lose it! You don’t have time to explain HHT for the 100th time – you just need those darn antibiotics so you can get your teeth cleaned! It is important to remember that while your healthcare provider is very smart and skilled, they can’t and don’t know everything. They also have many other patients who are just as sick, just as tired, and just as important. Give them a little time to reorient themselves to your case, or look up the information necessary to give you the best care you deserve.
- Currently, I am trying to coordinate with the cardiologist (who is trying to chat with the interventional cardiologist) and the HHT center providers (who are trying to chat with other cardiologists and surgeons) to decide when the best time will be to fix Eleanor’s heart. After her last cardiology appointment, we had to wait a week before the Dr. could speak with the interventional cardiologist to consult. Additionally, I called Lori at the HHT Center and she needed to talk with the Dr. who then needed to consult with surgeons there. This all takes time and it is so hard to wait when you just want a solution for your baby. But I promise, it is worth the wait to get the best medical opinions, for everyone to be informed, and for you or your loved one to get the best care.
- On the flip side, don’t let yourself slip through the cracks. As stated, medical providers are busy! The burden placed on the healthcare system these days is pretty massive, so it is your job as a patient or parent to stay on the doctors so they don’t forget to put in that referral, call your other doctor, or fax a copy of your last MRI scan. Personally, I try to wait at least a week before following up unless they have told me it will take longer.
What are your tips and strategies to keep your lives in order? I definitely don’t have the perfect system, but these things help to organize us.