The truth is, only a minority of patients with autoimmune disease will ever really need to put this information in action. When you are hospitalized with an autoimmune condition you feel scared and helpless. Knowing what to expect and how best to take care of yourself during and after your hospital stay BEFORE it ever happens is self-care every autoimmune patient needs.
Regardless of the incredible advancements we’ve made in rheumatology, sometimes the safest place for an autoimmune patient is the hospital. This could be to receive IV (intravenous) treatments, to undergo certain tests quickly or to stabilize and monitor worrisome vital signs. Autoimmune patients, in particular, can find themselves needing the hospital as there is a wide variety of symptoms possible.
Who you meet in the hospital
The hospital is a city. I often forget how confusing the hospital is for those not used to the complex hallways, poor signage and weird elevators. Since I have worked within a large hospital system many years, I can maneuver through most hospitals. But even I get turned around sometimes. The people you meet in a hospital include:
- the custodian
- therapists (speech, physical & occupational)
- social workers
- medical mid-levels (nurse practitioners, physician assistants)
- trainees (residents, fellows)
Nurses run the hospital, in my humble opinion. They are the first to notice when something is off and the last to check on you each night. Be nice to your nurses! Doctors, obviously, are also key to any hospital stay. Keep in mind that your primary rheumatologist will most likely NOT be caring for your in the hospital. Hospitals are complex environments that have developed into their own medical specialty. The doctors working within hospitals are known as “hospitalists” and specialize in the care of hospitalized patients. I recommend everyone write down and keep tract of the doctors and specialists you see in the hospital. This is especially important when hospitalized with autoimmune disease and can assist your doctor when getting your hospital medical records.
Flare v. Infection
Like anyone else, those with autoimmune conditions may need the hospital for surgeries or other medical emergencies such as heart attacks, appendicitis or strokes. But, when caring for an autoimmune patient, doctors must always consider, is this a flare or is this an infection? (SPOILER ALERT! Sometimes it can be both!) The symptoms of flares and infections can be similar, making the distinction difficult. In fact, doctors may treat for both, as they await test results. Having a basic understanding of your treatments while hospitalized greatly helps your rheumatologist keep you on the road to recovery.
Know your final diagnosis
The goal of any hospitalization is to get someone feeling better. Many times, especially when hospitalized with autoimmune disease, you leave the hospital better, but not 100%. Results and discoveries made while hospitalized are important to continue your improvement. Despite advancements in medical record keeping, there can still be a disconnect between the hospital and your regular doctors, leading to misunderstandings, miscommunications and misdiagnosis. For this reason, it is imperative that everyone who leaves the hospital know what their final diagnosis is. I specify “final” diagnosis as diagnoses change throughout someone’s stay.
For example: a woman with lupus may be hospitalized with a cough and initially thought to have pneumonia. They may even be given treatment for pneumonia, antibiotics. But based on test results, it may become clear that the person actually had lupus pneumonitis. There is a big difference between pneumonia and lupus pneumonitis and how a rheumatologist treats these in clinic will make a huge impact.
Be your own advocate
When hospitalized with autoimmune disease, and feeling lousy, it can be difficult to keep up with the tests, the medications and the doctors. In fact, many people don’t even remember the majority of their hospital stay. But when you leave, it is up to you to make sure your doctor has the information they need to keep you on tract. How in the world are you supposed to do that?
Enter the Hospital Day Summary & Hospital Stay Summary (sorry for lame titles!). These are two, one-page, fillable forms that can be downloaded and printed as many times as needed and help you keep tract of the information your doctor will needs. The Hospital Day Summary helps you keep tract of your symptoms, the plan for that day, and any notes or questions you have for your healthcare team. If completed every day, it can serve as a hospital diary. It also is wonderful at keeping your friends and family abreast of what is happening! The Hospital Stay Summary is another one-page, fillable form that can be completed with the help of your nurse or doctor and summarizes all the key elements of your stay.
These forms are especially helpful as they were made from the doctor’s point of view. This is the information needed by your doctor to keep you on the right treatment. This will not only help you feel better but will can keep you from having to go back to the hospital!
You can download these free forms here. Download and print them as much as you need. Make copies and place in your medical records folder just “in case” and hopefully you never have to use them!