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.  

 

 

 

 

Comments

  1. Hi, Sara,

    I wanted to share with you and others on this site one of the reasons I feel I have recovered so quickly from my PE. I had too many clots for the doctor to count, bilaterally. I also had one large one in my right lung. Right from the beginning, I wanted to help the dissolving process, so I practiced deep breathing, daily. I also sang, which is a fun way to increase your lung capacity. Yes, I still get tired, from time to time, and often pant more than I did prior to the PE, but I really feel almost normal. My PE was on 2/10/14. I also take vitamin K, K2, CoQ10 , krill oil, vitamin E and eat lots of leafy greens. I am on Coumadin. It’s nasty long term, so I am looking for alternatives where I can naturally wean myself from the Coumadin. I also take daily infrared saunas and use a grounding mat which help with blood circulation and thinning. My oxygen level 2 days ago was 98. I also feel my brain is not quite at capacity. That’s understandable because I am 70 years old. At the same time, I challenge my daily, and my scores keep improving. ( I am in the 99th percentile for my age. ) I hope this will help some of you out there.

    • Thank you, Betsy! I always enjoy what you share with me and learn something too. I will pass this on to the Facebook Community as well so they can read about it! I hope to look into some of these natural remedies myself as I am concerned about being on Coumadin for the rest of my life and the negative effects it might have on my body. Thank you, Betsy!

  2. Florence says:

    I just got out of the hospital after my first DVT. I stopped my CoQ10 (while in the hospital ) and some of my other supplements until I see my NMD. Though, I’m sure it will be back on my list. I also have the mthfr gene mutation. Didn’t know it would do this. I also didn’t know you could recover from clots in the lungs so well. I battle my asthma. I’ve taken cod liver oil. I’ll try krill. I need more energy. I still have a bit of a fever. Happy I found this website.

  3. Carol Gayden says:

    Thank you for creating this site. It’s only been about two weeks since diagnosis, I don’t even have the words right now. Just thank you .

  4. Twice in my life time I have survived a PE 1st time was December of 2006 it hurt to breath I thought I had gas trapped in my back but it was a blood clot in my left lung. I was hospitalized for three days doctors thought I was a miracle of science they asked if I did heavy drugs or on birth control and I did none of the above six months after I was cleared with a hemotologist and set free from cumadan I thought I was in the clear and ten years later what I thought to be pneumonia turned out to be a PE not only in my heart but also in my lungs and let’s not forget about it’s traveling friends this time the doctors were in disbelief that I survived the night this isn’t easy three weeks later I’m home from the hospital I feel confused about regular ordinary things and I wonder if I will ever be the same will my life ever get back to normal I was 28 the first time now I’m 38 how long will this recovery be
    Ibbrophen is my cramps medication and now my doctors are saying I cant take that I guess I am just frustrated upset and wondering if any cure to this will ever surface

  5. I had an extravasion invifiltration at the bend in my right elbow last week whole being hospitalized for a 2nd severe but of c-diffucule. It caused a DVT in my arm. Severe swelling & extreme pain from my elbow to arm pit. I was put on xarelto twice a day to thin my blood, and sent home. The swelling has reduced by 1/2, but there is a hard angular ridge across the bend in my elbow which might be my vein? And still unable to straighten my arm. Needless to say elevating my arm is very very difficult. The extreme fatigue was not something I had anticipated. Really struggling to imagine how I will be able to work in 2 weeks. Has anyone else suffered from an arm DVT? Is the fatigue and struggle about the same as a leg DVT? I am watching closely for chest pain, but with a birth defect in my aortic valve, chest pain is normal. Good to know the real signs of PE from other people’s stories I have read.

  6. Can anyone please let me know how much walking or driving is allowed after leaving hospital? My dad has always been very healthy and at 85 he has been diagnosed with two PE. He is now on warfarin but is walking about town gently getting buses and now he has started driving short distances. He says he feels well enough but this doesn’t sound right to me. Can anyone please tell me what their thoughts are about this? I feel I am always telling my dad off for wanting to do too much, it has only been two months since his diagnosis, many thanks xx

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