Monday, March 17, 2014

Living with a Dissected Aorta and Marfan Syndrome, March 2014 Update

Wow, time flies.  It is March 2014 already.  Here are a few updates on my dissection challenge:

One question for my PCP will be - why does my right foot continue to grow while my left foot is shrinking?
  • I have all my Medicare paperwork now and the coverage will kick in on May 1, 2014 - just a little over 7 weeks away.  First time I will have had any insurance since my dissection hospitalization!!!  The two year Medicare waiting period is almost over!  I survived (so far)!
  • With Medicare in hand I will be scheduling a visit to the cardiologist for my annual CT scan and echocardiograms to see if my aorta is either continuing to aneuryze or is staying the same diameter.  Of course, I am very anxious about these updates and will post the news as soon as I find out.
  • I have been having my INR checked once every month, paying for it out of pocket at our local lab.  I am taking 5mg warfarin daily and last time I checked the INR was 2.2.  Fresh garden greens make up a large part of my diet so I can lower or increase INR with the amount of Vitamin K rich greens I consume.  This is easier than adjusting tablet dosage - break one in half, skip a day, yada yada.  My PCP comes up with such complicated formulas.  I've yet to tell her that I am just doing 5mg daily.  This is enough of a challenge for me as it is with my additional memory struggles.
  • I do have a list of questions/comments for my PCP, who wants me to come in soon for my annual checkup, and they are:
    • My right ankle/foot feels like it is perpetually about to collapse.  It is hard to walk without my forearm crutch.  It hurts.  I am sure there is not a lot to be done about this and I think it is just part of living with a Connective Tissue Disorder (CTD), but I will tell her about it.
    • My right wrist is the same way.
    • My sternum is still unstable, even after two years since the surgery. I clicks open and closed when I move, much like cabinet doors opening and closing.  Quite painful.
    • My right foot continues to grow and my left foot shrinks. I would think this has something to do with a blood flow imbalance.  My right illiac artery is dissected (thoracic aorta is dissected down into my right leg), so it seems to me that the blood flow to the right leg would be impeded and the right foot would shrink, but ???.  
    • I will ask her what to do about the chronic pain.  I hurt daily, usually a 7 to 8 pain level while sometimes reaching a 10 for long stretches.  Do Tens units work?  How do I deal with daily chronic pain?
    • My left eye has ongoing bouts with a dark, sideways closing curtain.  Is my retina detaching?
    • AFIB and VTACH come and go.  Sometimes my pulse will jump, out of the blue - but especially when weather fronts come through - from 50 to 150.  That throws me to the floor, literally and scares me to death.
    • I will mention the LOUD clicking my aortic valve makes but I am totally cool with living with a valve that makes noise, so long as it keeps me alive.
    • I have chronic fatigue and find myself blacking out or falling asleep right in the middle of the day sometimes.  My diet is wholesome - I do not eat processed foods usually -just fresh meat, fish, garden veggies, some fruits, no grains, no sugar, low salt (sometimes - I love salt).  I exercise - ride bike and walk and do yoga for an hour each morning.  But I think with a 50ish pulse and a heart output capacity of 20-25% that fatigue is to be expected.
    • And other questions as they pop into my mind.
  • Our teens have genetic testing and their annual echocardiograms in April.  I constantly worry about the teens, especially when their chests hurt or they feel dizzy.
  • My Florida drivers license is medically revoked so I have had to learn to get around on my bike or through rides from family and friends.  I try to keep asking for a ride to a minimum because I do not want to be a burden.  Loosing my license after driving for years was a mental challenge.
  • Depression is still a looming specter and I deal with it through prayer and spending lots of time outdoors, especially at the ocean and on my bicycle.
  • I self-adjusted my Losartan dosage - doubling it from 50mg to 100mg daily because I could not keep my blood pressure down on 50mg.  After a month or two at 150+systolic I upped the daily dose to one 50mg tab in the am and another just before bed.  This has brought my systolic back down to 115.  I could not afford to go to the cardiologist to discuss, and will discuss with him in May - though we have discussed before.  Please do not do this yourself.  
And that's about it for my life with Marfan and other CTD issues.

Stay tuned for more as it happens!

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