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,

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*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.  

 

 

 

 

What is Antiphospholipid Antibody Syndrome?

What is APS Cover

June is Antiphospholipd Antibody Awareness Month. But, what is Antiphospholipid Antibody Syndrome, anyway?

If you’ve never heard of Antiphospholipd Antibody Syndrome (or APS), you are not alone although, the disease is not as uncommon as you may think – as people are tested for different blood clotting disorders after a clotting incident, more and more people are being found to have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women and while APS is believed to be responsible as the cause of multiple miscarriages, thrombosis, young strokes (up to one third of people under 50) and heart attacks, it is rarely discussed as a relevant health issue, particularly for women. Still, just about 1% of the U.S. population is believed to have APS making it a rare and sometimes ignored condition.

So, what is it exactly? Antiphospholipid Antibody Syndrome 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. Antibodies are proteins in the blood and body fluids that bind to foreign invaders like bacteria and viruses and help the immune system destroy and remove them. Sometimes the immune system doesn’t function properly and makes antibodies against normal organs and tissues in the body or, in the case of APS, proteins in the blood. There are two known forms of APS. APS may occur in people with systemic lupus or other autoimmune disease, or in otherwise healthy individuals (Source: //apsfa.org)

In people with APS, blood basically clots when it shouldn’t creating the potential for serious side effects such as DVT, PE, heart attack, stroke, aneurysm, etc. Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia (high blood pressure). In APS, pregnancies are often lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, premature birth, or pregnancy loss. Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS or high-risk OBGYN (Source: //apsfa.org).

APS is a lifelong disease, of which there is currently no cure. In general patients who have had a blood clot (i.e., stroke, heart attack, DVT, PE) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants (such as Warfarin) indefinitely. Discontinuing treatment after a fixed period of time, such as six months, is common after a clotting incident, but may be quite dangerous in APS patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time, making them hard to detect during routine lab tests. It is not known whether it is safe to stop anticoagulation in this situation of transient antibodies. Consultation with a doctor experienced in treating APS, often a hematologist, is recommended for the treatment of APS (Source: //apsfa.org).

APS is not only a difficult disease to understand, but difficult to explain to others as well. A person with APS may look exactly like they did before – on the outside. But, he or she is struggling internally with a disease that always has the potential to cause serious and life-threatening complications. That is not to say people with APS have to stop living normal lives, it just means they must be aware of what is going on in their body including paying attention to symptoms of potential blood clots, taking medication regularly as prescribed, following up with a doctor or specialist as recommended and taking care of oneself.

In terms of autoimmune diseases, APS is actually one of the more common ones, but is often not tested for or misdiagnosed by physicians. If you have suffered a clotting incident, please make sure the hospital (or your doctor) checks for things like autoimmune and hereditary clotting factors.

I was diagnosed with APS after my PE, thanks to the persistence of one hematologist who would not settle for birth control being the only contributor to my blood clots. After my diagnosis, I remember being very confused and unable to comprehend what the doctor was telling me. As time has gone on, I have found connecting with others has been the most valuable form of healing for me. I have also sought out as much information about APS as I can and while resources are limited at the present time, there are some organizations out there dedicated to raising awareness and spreading information about APS and other blood disorders. You can find my list of helpful resources below-

Resources for People Diagnosed with APS

  • APS Foundation of America, Inc. – Founded in 2005, The APS Foundation of America, Inc. (APSFA) is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS).
  • Antiphospholipid Syndrome Facebook Support Group – Antiphospholipid syndrome (or antiphospholipid antibody syndrome) (APS) is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antiphospholipid antibodies (aPL). The name Antiphospholipid Syndrome is a misnomer because the target antigen of aPL is not phospholipids but actually plasma proteins that bind to phopholipids (eg: [[β2-glycoprotein 1]] or prothrombin). This is an open support group where we come together to talk about it.

Share your story. Have you been diagnosed with APS? Have you ever heard of APS? What is most troubling or interesting to you about the disease? Has APS changed the way you live your life?

There is hope for healing and you are not alone,

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