The Florida Keys: Nice place for a blood clot, but I wouldn’t want to live there

So, a quick report on our vacation in the Florida Keys last week.  We stayed at three Airbnb places.  First, three days on a small houseboat anchored in a shallow bay near Key West, a 20-minute kayak paddle from shore.  Very small, no privacy, lots of climbing and clambering to use all levels inside and outside.  Very fun!

Then after an afternoon at a beach park in Key West, we moved halfway up the Keys to Marathon, staying at a house in a working-class neighborhood near a fishing dock.  That night, Wednesday, I noticed when getting ready for bed that my left arm was quite swollen.  It didn’t hurt and I hadn’t noticed any swelling earlier, but maybe there was the beginnings of it earlier in the day.  In any case it didn’t seem like a good development at all, so Eric and I went right off to the emergency room, which was only about a mile away: Fishermen’s Hospital.  On the way in to the ER was a big display case of fishhooks that they had removed from patients.  Will & Jesse stayed “home.”  Good thing they are teens now.

At the ER it took forever but eventually I got assessed & got an ultrasound to look for obstructions in my veins.  There was something there but it is in a vein under the clavicle so it was not possible to tell for sure what was wrong with ultrasound.  The suspicion was a DVT (deep vein thrombosis, aka blood clot), which is dangerous primarily because if the clot breaks loose it can lodge in the vessels of the lungs and interfere with oxygenation (this is a pulmonary embolism).  So I had to go to a bigger hospital where I could have a “venogram,” which as far as I can tell is an angiogram for veins rather than heart vessels.

By the time this was all decided, it was about 5 AM and Eric and I had been up since 7:30 AM.  It was more than two hours to the transfer hospital at the south end of Miami, and longer with traffic.  So even though the ER would have let us drive ourselves, the ER doctor also said an ambulance could be justified given the urgency and the situation.  So we chose that; I went in the ambulance at 6:30 and Eric went home to the house to sleep and be with the kids until we knew what was next.

I dozed in the ambulance and it took almost three hours to get there.  At Kendall Regional Medical Center the ER doc pretty quickly set me up to have the venogram as soon as the vascular surgeon & interventive-radiology suite were ready to squeeze me in.  That finally happened around noon, and so by 1:30 I was in the recovery area for an hour’s (somewhat neglected) recovery, while everyone who you’d think might be taking a bit of care of me was instead trying to figure out whether I was going to be admitted or discharged or sent back to the ER or what.  Apparently they never send people back to the ER from recovery.  But in this case that was what the ER had planned so that was what happened.  Until then I thought I’d be admitted for a night of de-clotting and observation.

So, back to the ER.  When the ER doc came along around 3:00 he said I was getting discharged after getting started with a blood thinner (Lovenox, which is low-molecular weight heparin aka LMWH).  He went off to call my oncologist to confirm that it was ok with chemo and give him the scoop.  I called Eric and said “come get me.”  My main concerns were: 1) can I eat now, finally? and 2) can I put on my own clothes instead of this ridiculously large gown?  Somehow I didn’t get to ask these questions because there were so many other things to find out, decide, and do whenever there was a health-care provider in my room.  Eventually my nice nurse José came with the drugs.  He gave me one half-dose of Lovenox to show me how to do it, then I did the other half dose.  It is a liquid that is injected subcutaneously (twice a day, in the belly fat).  Oh joy. Luckily I have learned how to give injections before…just not on myself.

By then I head read my discharge paperwork and noted that I was officially discharged at 3:30 pm.  Since it was now 4:30 or so, I figured that yes, I could eat.  So I ate two oranges.  Then José brought me some iced tea and an ice-cream bar.  I lounged around Skyping with my mom for a while, then decided the food was ok but the service wasn’t so great and went out to the ER waiting room to wait for Eric.

At 6 Eric and I found each other and went to the pharmacy and then got some food and then drove back to Marathon (about two hours).  Whew.

The next day, Friday, we spent most of the afternoon at Bahia Honda State Park near Marathon, which was pretty nice.  Good beach.  Portuguese Man o’ War jellyfish washing up onto the beach, which is dangerous because their tentacles sting very painfully, but they float and bob around on the waves, and are purple and blue with a big inflated part, so they were easy to spot even when only a few inches long.  Eric and I ended up reading on an uncrowded part of the beach and swimming a bit while the kids sat in the car in the parking lot on their devices.  Ah! Vacation!

From there we drove north again, off the Keys, to Homestead (SW of Miami), where we stayed in an agricultural neighborhood at a guest apartment attached to a house in the middle of an avocado grove.  Tranquil.  In the morning we eventually packed up and took off for a driving tour of one part of the Everglades, which we entered only 20 minutes from where we stayed the night.  We drove and stopped and went on nature walks on boardwalks and saw some cool stuff.  Finally picnicked and drove out and away to Fort Lauderdale to the airport, and eventually flew home.

I am feeling rather tired and beat-up.  I’m pretty sure I’ll be on this blood thinner for many months if not longer, but other than that, am not sure what else is going to change as a result of the DVT.  My left leg has been really bothering me for weeks (months?) in a sciatica-like way that is not apparently sciatica, and that was pretty bad on vacation.  There are good days and bad days but overall it is getting worse.  I have been trying to get it better with acupuncture, massage, chiropractic, etc..  Now I can’t take ibuprofen to help with the pain because of the blood thinner.  And my left armpit and shoulder have been mysteriously hurting me since Thanksgiving when I walk, so I hope that turns out to be clot-related and will eventually get better.

The Tylenol I took for a few days stressed my liver (as Tylenol does…) so when I went in for chemo yesterday, my liver enzymes were high and my oncologist said to come back Friday to see if they have gone down enough for chemo. I hate disrupting the chemo schedule.  When I do, everything goes wonky in the rest of my life’s schedule!  Plus it makes me very nervous to skip weeks of chemo.

Instead of chemo we had a long discussion of the DVT, the shoulder pain, the leg pain, and pain relief options.  I went off for a leg ultrasound (to rule out more DVTs) and a femur X-ray (to rule out lesions in the bone) and I will get a full-body bone scan as well because, well, it’s been 16 months since my last one.  And Friday I have an appointment with a vascular surgeon to talk about the DVT and follow-up, precautions, etc etc. Yeesh!

2 thoughts on “The Florida Keys: Nice place for a blood clot, but I wouldn’t want to live there

  1. Shelly

    You are sounding tired, and who could blame you? The good parts of the vacation sound great, but the illness parts sound disheartening, which I’m sure took away from the pleasures of the trip. I hope the scans will not reveal any undesired surprises, and that the effects of the clot will fade away quickly. Thinking of you, as always.

  2. Tania Thomas

    I think of you often but lost your address for your blog until today! You sound amazingly strong- and what others may express as a traumatic interuption to a lovely vacation you appear to take in stride.
    Your courage is inspiring. Thank you for sharing.
    BIG HUG! tania

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