young survivors

Overall Hospital Information:

ICU- you don’t get to choose where you end up in the ICU. this is chosen by your ambulance team, your helicopter team, or whoever else took you to get emergency care. The ambulance & helicopter are required to take you to the closest hospital that provides the proper level of care. This is not necessarily the BEST hospital, but it will provide the right level of care to get you stable.

Inpatient rehab- after you get moved out of the ICU, if your hospital has an inpatient rehab program, they will automatically start you at inpatient rehab in their hospital. But suppose you are unhappy with your hospital, or just questioning whether it is the best hospital for your area. In that case, you can elect to be transferred to a different hospital that has inpatient rehab. Your family may want to tour the inpatient rehab programs in your area hospitals. Pay attention to the quality of the room, those vary greatly depending on the hospital and you may be there for months. The most important thing really is the therapy team and getting quality therapy. However, if you are unable to switch to a preferred hospital system for your inpatient rehab, you can still try to get in with doctors in your preferred hospital system after you are discharged from inpatient. When you discharge, you will be asked to get set up with a primary care doctor. This is your opportunity to be choosey about the hospital system if you haven’t already. Look to our Choosing A Hospital System Guide to help choose your primary care. You will be discharged from inpatient rehab when you are considered a stable patient who can safely get from home to an outpatient clinic without risking further injury, not necessarily when you are fully recovered.

Outpatient rehab- depending on the severity of your injury and the options in your area, you may have choices of:

1. full-day neuro rehab programs where you get occupational, physical, and speech therapy all at one location. These are great because you spend all day with other people who have the same injury so you might not feel as isolated as you could if you end up just going home (not in a full-day program). When choosing which full-day program to attend, the most important thing to look at is the amount of time you spend in therapy. You aren’t there for the building and amenities, focus on therapy time. It is great if your rehab is occurring in the same hospital system as your doctors so everyone can read the same doctors’ notes but if you’re going to a full-day program, that’s probably not within the hospital system, don’t worry, when you are finished with your full day program, you will be able to do your remaining therapy outpatient in your doctors' hospital system. You might get discharged from your full-day program before you are completely done recovering. If you finish speech and physical therapy before occupational therapy, you might be discharged from the full-day program and still need to go into a hospital for only occupational therapy.

2. Singular outpatient therapies- If your injury was not as severe, you may not get offered full-day rehab programs, in that case, you might be going up to a hospital or clinic for just one hour of physical, speech, or occupational therapy at a time. When you’re choosing which hospital to attend for therapy look only at how much time and focus you get from the therapist regarding rehab. If they are asking you to share your therapy time with another patient, that’s not the right rehab program for you. It’s a good idea to do your outpatient therapies at the same hospital system where your doctors are. Insurance isn't going to want you to keep going to therapy forever. Way before you are fully recovered, you will be told to just do your therapy at home. That’s ok! You can get so much more therapy done at home when you don’t have to travel and wait for appointments. Try cutting down to once a week for a while then when you feel good about your home program, only schedule appointments and go into the clinic when you have a question or want to try something new like a brace or rehab device that will be covered by insurance.

Doctors you are going to see:

Try to get all of these doctors in the same hospital system, you want them to work together efficiently. Start with getting a primary care doctor. Even if you don’t love the primary care doctor, they will refer you to specialists within the hospital system who will do the detailed work of your care. Follow our Choosing A Hospital System guide to help you choose your primary care.

Neurologist- this brain doctor surprisingly isn’t going to see you often after you are stable. However, if you have an ongoing brain disease like moyamoya or brain cancer, you’ll see this doctor more often.

Hematologist- this is a blood doctor, they will determine whether your stroke was caused by a blood disorder and if it was, manage your meds for that disorder. You won’t need to follow up with them often unless your blood turns out to be difficult to keep stable. Hematologists are often oncologists too, do not panic when you see the sign for oncology.

Rheumatologist- tthis is a connective tissue doctor, you may not have one depending on your diagnosis, if you are diagnosed with lupus, you will have one to manage your lupus. If you’re stable, you won’t have to see them too often.

Physical Medicine Rehab (PMR) - this doctor, even though they don’t have a one-word fancy name is your most important doctor. They manage your rehab program. They’ll give you your Botox shots in your tight muscles and they’ll submit notes to support insurance covering whatever braces and devices you need. Even though they are following your rehab, after you are discharged from the inpatient hospital, they won’t be in the outpatient rehab gym watching you recover even if it’s in the same hospital. Instead, they will read the notes that your therapist will put in the hospital system computer. It’s going to be up to your occupational therapist and you to inform your PMR doctor of things you need the PMR to submit to insurance. Do not hesitate to send your PMR a message saying you would like to try a specific therapy or device and ask for their feedback. This doctor is your first contact when you have stroke recovery questions, not your “primary” care.

Primary Care- Once again a misnomer, this doctor isn’t a specialist so they probably won't do much for your care. Whenever you need to get in with a new specialist, ask your primary care for a referral, that is your primary’s main job as far as you are concerned. When you leave the inpatient hospital, the doctors there will offer to help you get set up with a primary care doctor, it’s up to you to advocate for yourself and pick one. Follow our Choosing a Hospital System Guide to help you choose a primary care doctor.

Ophthalmologist- this is a doctor who is an expert on the neurological connection between your brain and eyes, if you are diagnosed with visual neglect, visual tracking issues, double vision, or other post-stroke vision issues, you will see an ophthalmologist who will send instructions to your occupational therapist to work on your vision issues.

Gynecology/women’s health- if you are female, you probably have new regulations when it comes to birth control. Estrogen increases your risk of blood clots so your doctors may have instructed you to stop estrogen methods of birth control. This doctor will direct you to a safe option for your body.

Timeline of recovery

You are probably desperately wondering when you will be "better." Unfortunately, there is no way to give a measured time for recovery or even a general expectation of how long each phase will last but we can share with you the phases of recovery you will go through:

1. ICU- ends when your doctors discharge you to an icu step down room where you might receive inpatient rehab

2. Inpatient rehab (if offered for the severity of your injury) - ends when you are considered medically stable enough to go sleep at home.

3. Outpatient rehab full-day program (if offered for the severity of your injury) - ends when insurance determines you no longer require a full day rehab program.

4. Outpatient rehab individual appointments - ends when insurance determines you no longer benefit from appointments (you’re not making progress or have all the tools to handle your own rehab at home).

5. Self-motivated home therapy program- ends when you decide you are happy with your recovery.