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.  

 

 

 

 

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa

Lisa Cover

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa Cowan Wells

I always thought of myself as a Mom, Wife, Friend who wore many capes…I was always on the go, shuffling oldest to high school and job.  Then taking both kids everywhere with me while doing errands for myself, house, school, our brewery and night school for me at the end of the day.  I always lived in fast mode…you would think under those circumstances I could be at least a spokesperson for being able to take on anything!

At the end of last year, 2012, I noticed I started having more health issues than my usual, occasional bronchitis, sinusitis, and asthma episodes.  These continued into this New Year, 2013.  I went to the ER countless times so sick and all they did was say it’s your asthma…here is some prednisone, Z-Pak and pain pills for chest pain.  D-dimer was always coming up negative, so they never pushed further to check for clots since my leg was not giving any signs or signals for a DVT and chest just seem to be asthma related issues.  I noticed that every time they were giving me those meds, the usual ones that always worked when it was bronchitis, asthma related issues weren’t working anymore and the pain in my chest, dizziness, palpitations were getting worse…at this point when I would show up at the ER…I just had to be in search of pain meds, I must be addicted.  The last ER visit I had before the BIG ER visit…he sent me home with the same meds again and said I had pleurisy.  They did a D-dimer each time and again, always negative…this ER visit they even did a CT scan without contrast and said there was nothing.  I began to think I was crazy or something…got really scared.

I was in my kitchen this past April and my daughter gave me something to cut open…instead of using the scissors, I used a small, very sharp knife…dumb, dumb, dumb BUT so glad I did because it was from that cut that got the ball rolling on finding this DVT, multiple bilateral pulmonary embolisms I had.  The knife went in deep on the side of my finger…told some friends on Facebook about and they urged me to go to the ER just to be on the safe side to make sure it didn’t get infected…..so, embarrassingly I did.  When I got there they took my BP and it was 179/145…they were freaking out and the thumb became last priority…my pulse was racing at 137.  They walked me back and did and EKG, D-dimer and some tests while they cleaned and bandaged my finger.  They I was informed to get a doctor right away about this blood pressure issue because it was serious.

The next day I did.  Blood pressure still was high, not feeling well in my chest.  He thought go ahead with another round of steroids and be rechecked on the blood pressure after two weeks.  I went in again, this time with tingling sensations (described like a hyperventilation feeling) on my left side from neck, chest, arm, leg and foot. He seemed puzzled. I went home, a few days later could not get off the couch, had a raging headache and still had the same symptoms but this time it was worse and could barely move.  I called the doctor and he suggested I go the ER. The ER checked all those things again.  Asked me if I would like to just go home and see what tomorrow brings or be observed overnight.  I chose to be observed overnight because I knew something was not right.  They kept saying I was just having muscle spasms causing the pain on my left side and was going to release me the next day.  A new doctor came to see me before they made final decision to let me go…we talked, she seemed very concerned and ordered a CT with contrast to check for clots even though the d-dimer was still negative.  Low and behold…nurses started rushing in, hooking me up to things just as I was about to tell my mom I was going home.  I put the phone down and asked him what was going on…he said you have clots in your lungs….WHAT! Me?  Not me…Super Mom.  What is going on…I was so confused and this was so foreign to me.  All kinds of emotions flooded through my brain…I cried, was terrified, confused…everything.

The next day the nurse asked if I would like to take a shower…I said yes.  When I was in there I got this Charley horse sensation and pull in my left leg.  It was very odd.  I debated whether or not to say anything.  Good thing I did.  She ordered a scan of my leg and there it was…a monster of a clot…18 inches!!!!!  There was the culprit that caused the embolisms.

Next day, I had labs…..and about 20 vials of blood were drawn.  All came back negative.

I finally went to a hematologist that did testing that was done and found what it was….I had the MTHFR C677T and the Prothrombin G20210A mutations (heterozygous and homozygous).  What all this means to me right now is that I am a lifer on blood thinners (Warfarin).  I see a genetic counselor on September 5th so this will help me understand…I do know I have to get my daughters tested for sure.

Well there you have the whole story.  I am still Super Mom but in a different and more special way now.  I see the world and my own life differently after coming so close to death.  Thank you all who were by my side from the beginning…my husband, children, family, friend and the friends I have made here that gave me my voice back to make a difference and spread awareness.  Here I am and here is where I want to be!

To connect with Lisa:

Or, you can comment below.

Click Here to Share