It can be very overwhelming and scary in the hospital, much less after you are discharged and on your own. After four days in intensive care battling for my life and nearly a week total in the hospital, I was in no frame of mind to ask questions about what happened to me when the time came – much less understand what was needed in terms of follow-up care. I was on some pretty intensive pain relievers and remember everything being very cloudy. One day, I fell asleep while talking with my father with half a peanut butter and jelly sandwich in my mouth. I couldn’t carry on a conversation or keep my eyes open for more than a few moments at a time. I remember my first follow-up appointment vividly. My husband went with me and thought of a few questions I did not. I was overwhelmed, scared and very grateful to have a hematologist who had answers to most of my questions before I even knew to ask them. I know not everyone is that fortunate so I have put together a list of questions to ask your doctor on your first follow-up appointment.
Tips for your first follow-up appointment:
- Take someone with you, if you can. It can be hard to remember of retain what is being discussed.
- Take a notepad with you for the same reasons. Do not be afraid to write things down!
- Carry records with you from other doctors/hospitalizations that you want your current doctor to know about or have copies of.
- Take your list of questions printed ahead of time (or print this list out for reference).
- Schedule your next visit prior to leaving. Even if you are given the option, don’t wait so you don’t forget.
Once you are ready for your follow-up appointment, here are some questions you may consider asking, especially early-on in your treatment and diagnosis.
Follow-Up Appointment Questions*
How serious is the extent of the damage from my clotting incident (PE/DVT)?
- Were any of my organs damaged (heart, lung, etc.) and if so, do I need to take any additional steps to treat?
- What is the extent of the damage to my veins?
- Do I (or when do I) need to get a follow-up scan to check the status of the (above) issues?
How will my clot affect my home and work life?
- When can I return to work?
- Will I need any special accommodations at work like a chair, stool or the ability to move around?
- When can I return to exercise? How often and how intense?
- Do I have any lifting restrictions?
- Do I have any dietary restrictions?
- Do I have any travel restrictions?
- Can I get pregnant and/or breastfeed?
- What types of over-the-counter medications can I take?
- Do I need to make any lifestyle changes? (i.e. smoking, diet, exercise, etc.)
What caused my clot?
- Request testing for genetic and autoimmune clotting conditions? (i.e. Factor V, MTHFR, Antiphospholipid Antibody Syndrome, etc.)
- Based on the cause, what are my chances of a reoccurrence of a clot? What do I need to be aware of if a reoccurrence should occur?
- Do I need to see a(nother) specialist? (i.e. Hematologist, Rheumatologist, Pulmonologist, Neurologist, etc. [Please note: Based on my personal experience, I recommend seeing a Hematologist, especially if you are facing any genetic or autoimmune clotting conditions]
- Do I need to be concerned for any family members, including children, who may be at risk for this condition?
Who is the primary contact for my ongoing care?
- Do I need regular blood draws (INR checks) and where should I go to get those done?
- What is the procedure for INR checks? (i.e. Are they scheduled or walk-ins? Do you call for results or does the doctor contact you? Etc.)
What is the short-term and long-term prognosis for my condition/future clotting?
- What can I expect to feel physically in the next month, three months, six months, etc.?
- What can I expect to feel emotionally in the next month, three months, six months, etc.?
- How will I know I am improving? How will I know I am not improving?
- How long can you expect my leg to recover? My lung to recover?
- What long-term complications do I need to be aware of?
What is the course of treatment for my diagnosis?
- Do I need to schedule any follow-up scans or tests at this time?
- What options do I have for treatment? (i.e. different medications)
What medications will I need to take?
- Who manages my medication?
- What are the benefits and risks of taking this medication?
What is your preferred method of contact? (i.e. phone, email, fax, etc.)
What types of incidents/concerns do I need to alert you of? (i.e. If I fall and hit my head; If I cut myself; If I take an over-the-counter medication, etc.)
Can you provide any resources for further reading?
Share your story. Do you have any questions to add? Did you ask your doctor any of these questions? What was the hardest question for you to ask? Did your physician take the time to talk to you about your concerns or did you feel dismissed?
There is hope for healing and you are not alone,
*Please note, these questions are meant to serve as a guideline based on questions I either asked at my follow-up appointment(s) or wished I had asked. What you ultimately discuss is between you and your medical team.