How to Prepare for Your First Follow-Up Appointment

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:
  1. Take someone with you, if you can. It can be hard to remember of retain what is being discussed.
  2. Take a notepad with you for the same reasons. Do not be afraid to write things down!
  3. Carry records with you from other doctors/hospitalizations that you want your current doctor to know about or have copies of.
  4. Take your list of questions printed ahead of time (or print this list out for reference).
  5. 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,

0-BLOG SIGNATURE SARA

*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.  

 

 

 

 

How long will I have to take blood thinners?

how long will i have to take blood thinners

It can be very overwhelming in the days, weeks and even months following initial diagnosis of a blood clot in the leg, thigh or pelvis (DVT) or lung (PE). Initial treatment generally involves extensive hospitalization; a battery of tests including blood draws, scans and X-rays; perhaps thrombolytic therapy or clot-busting drugs to break up clots inside your blood vessels; or even surgery to place a filter in the groin area or to address an underlying and more critical issue at hand. Most, if not all, patients are put on anticoagulants – or blood thinners – for some amount of time ranging from a few weeks to a lifetime. Blood thinners decrease your blood’s ability to clot. They’re used to stop blood clots from getting larger and prevent clots from forming. Blood thinners do not break up blood clots that have already formed (the body dissolves most clots with time). As time goes by, the question soon becomes just how long will I have to take blood thinners?

It was one of the first questions on my mind once I could think clearly and for me, it did not come until after I was discharged from the hospital and was sitting in my hematologist’s office for my first follow-up appointment. I was more than hesitant when I asked then and just yesterday at my 16 month follow-up appointment, how long will I have to take blood thinners?

The answer was the same then as it was yesterday – I will have to take blood thinners for the rest of my life, due Antiphospholipid Syndrome. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them, particularly in the blood, which causes clotting. I had slim hope that something would have changed in the last year, but it did not; while APS antibodies do come and go, the risk of them developing and producing another PE are too great to ever stop taking blood thinners.

Still, others will be on blood thinners for much less time or may go on and off blood thinners at different times in their lives. In fact, there are as many variables affecting how long a patient will have to take blood thinners as there are patients with blood clots. It all depends on the individual and most importantly, the reason for the blood clots to begin with. If you don’t know why you developed a blood clot, request a panel of tests to determine if there are any genetic or autoimmune factors that may have contributed to the clot as this can be critical in determining how long you need to take blood thinners.

In patients with an easily identified and reversible cause of a deep vein thrombosis (such as a recent surgery, strictly birth control pills, etc.) 4 to 6 weeks of therapy may be sufficient. Many patients who experience a DVT or PE with no identifiable cause (unprovoked) or strictly as a result of birth control may only be on blood thinners until initial concerns with the clot are resolved or birth control is stopped. This may be a few weeks at most.

For cases in which the risk of developing new blood clots remains high (such as in patients with certain cancers or even genetic factors, pregnancy, etc.), anticoagulant therapy may need to be continued for months to years.

In the case of someone with recurring clots (genetic or autoimmune disorders or additional medical complications that may contribute to clotting), he or she may need to take blood thinners lifelong (//preventdvt.org).

Doctors may recheck the leg and/or lungs with a Doppler imaging scan (or ultrasound) between 3 and 6 months after the initial clot. There would not be enough change to require a scan any sooner than that and keep in mind; your clots may never completely dissolve, resulting in residual scar tissue that may always be visible through medical scanning.

Most patients who have suffered from a PE and/or DVT are placed on blood thinning medications for 3-6 months as a general guideline. Again, it is of vital importance to discuss reasons for clotting with your doctor as well as your individual risk for a recurrence. Both will help to determine what your appropriate length of treatment should be.

Share your story. How long do you have to take blood thinners and for what reason? Did you expect to take blood thinners for as long as you are/did? What have you heard about length of treatment pertaining to blood thinners?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA