I often contemplate how much to share on this totally public website. Partially, to preserve some level of privacy, and partially, in order to avoid obnoxious over-sharing. I know I’m guilty of the latter, and short of sharing copies of my medical records – I’ve been pretty open about my medical condition. After all, awareness of Vascular Ehlers-Danlos Syndrome (vEDS) is critical for people who have the condition, and public knowledge is key to motivating research for treatments.
Social media and blogging have a way of giving us a front row seat to the lives of people with serious medical issues. I’ve had an intimate look at the lives and deaths of distant acquaintances and casual friends. Ignoring it is like driving past a car crash and resisting the urge to look. I’ve never hesitated to explore the experiences of other vEDS patients on social media – but there’s something kind of weird knowing that I’m on the other end of people’s morbid curiosity. I’m keenly aware that people develop perceptions of me from what I share – and the fact that I don’t necessarily get to write my own conclusion.
As I began to write this, I was sitting in a Cleveland Starbucks, not far from the Cleveland Clinic, where the course of my medical care is managed by a team of some of the best vascular and cardiac doctors in the world. The upside of a rare and serious medical condition (and good insurance) is access to great doctors. I’ve taken my last few trips to Cleveland alone, although Monica prefers to be there if she can. She’s better at asking the right questions, and by the time I tell her what I’ve discussed with my doctors, it’s been filtered through the mind of a simple 45 year old brain.
In Cleveland I stay with a couple who have become dear friends over the past three years. I arrived hungry on a Sunday afternoon and took myself out to TV Chef Michael Symon’s fancy burger chain. Knowing that I was forbidden from eating or drinking anything for 12 hours prior to my tests, I attempted to destroy my cholesterol in one day with a burger, duck fat French fries, and a “vanilla, apple pie and bacon milk shake” (it was gross, I didn’t drink it). Then I helped my friend, who our kids call “Dr. Robert,” install a new street lamp at the end of his driveway. Always fun to practice with electrical wiring and cement on someone else’s project.
On Monday I had 7 – 8 hours of tests and doctor’s visits, starting at 6:45. Blood-work, tests of the circulation in my legs, echocardiogram (ultrasound of my heart), ultrasounds of my carotids and subclavian arteries, CT scan with contrast from the top of my head to my waist, followed by separate visits with my vascular MD and my surgeon. There’s no time to stop as I criss-cross the Cleveland Clinic.
The CT scan produces the most anxiety. I hate getting an IV, not because it hurts – I’m way beyond complaining about that – but because I’ve had the contrast blow out in my arm a few times. That does hurt, but it also means they have to redo the IV, and leaves me with a lump of contrast in my arm for days. But worse than that, laying alone on a table in that sterile environment is a scary reminder of the disease I try not to obsess about. I also get nervous as I over-analyze how the ultrasound technicians react to the images they are finding. Why is she spending so much time looking at the left carotid?
Once my tests are done, I dig in to my backpack full of snacks. I used to wait in line for coffee at Au Bon Pain (which is a hilarious name for a coffee shop in a hospital), but I know where the FREE coffee is in the vascular waiting area. Then I eagerly wait for good news.
All my regular tests, checking for changes to my arteries and organ functions came out clear. No changes to the aneurysms and dissections that doctors have been watching carefully for three years. I was particularly nervous on this visit because I was meeting a new vascular MD. My other vascular doctor had left for another hospital. I had really liked her, and felt like she was a bit of a “good luck charm” as I enjoyed stability since following her guidance. I had visions of receiving grave news from a doctor I’d just met. The good news was that I really liked the new doctor too. She spent a long time with me and I could tell she’d spoken with my former doctor and reviewed my history thoroughly.
But there was some bad news – perhaps not as grave as my fears – but bad nonetheless. It seems that my aortic valve is leaking. (One of those areas that the ultrasound technician spent a lot of extra time.) This means it’s not shutting tightly between beats, and some of the blood flow is regurgitating back into the ventricle. It’s a new development. Let me rephrase that: This is the first new development since my last surgery in July 2016. She assured me that this wasn’t an immediate problem, but was something that would have to be monitored, and would need future intervention (that means heart surgery).
It also meant that I couldn’t leave Cleveland without seeing a cardiologist, and hard as they tried to squeeze me in, I couldn’t do that for two days.
The nurse who took my blood was the same super-talkative guy as last year. We had the same exact 3 minute conversation about Florida, travel and writing, as last year. I wore simple clothing, thus succeeding in not being asked to wear a gown. The Cleveland Clinic is like the UN of hospitals. I’ve shared waiting rooms with women in burkas, orthodox Jews, and Amish people. Someone had left material in one of the waiting areas promoting their Amish romance novel.
I wasn’t particularly excited about staying in Cleveland two extra days, but it had an upside. First, I already had a ticket to see a band that I really like at the Agora Theater. My extended stay meant that I didn’t have to get up at 5am to catch a plane the morning after the show. Second, I’ve been wanting to check out the Cleveland Museum of Art.
I don’t want to get too sentimental here, but after getting a mixed bag of news at the hospital, I was feeling pretty raw. Lord Huron was exactly what I needed that night. It’s probably the first concert I’ve gone to alone, which offered a chance to just take it in without any distractions. For a couple hours, I forgot about the day. The 1913 venue is perfect. I think I’ll schedule future visits to the Cleveland Clinic with one eye on the Agora’s calendar.
Lord Huron at The Agora Theater
I love a good art museum. Hell, I love a lousy art museum. I don’t actually know much about art, but I like to look at it. The first thing I heard about the Cleveland Museum of Art was that it is free. Coming from Florida, where nothing is free, I assumed that meant that the Cleveland Museum of Art wasn’t worth paying admission. On the contrary. It’s so good it’s free like The Met is free in New York. It’s huge, and every room would justify it’s own museum in a smaller city. Frankly, I was tired after walking around for two or three hours.
Warhol… Monet… blah blah blah… show me the armor collection! The place is massive, and engrossing. I’m sad I didn’t visit it sooner.
On my last day in Cleveland, I met with the cardiologist. A hospital the size of Cleveland Clinic would be excused for feeling a bit impersonal. But every doctor I’ve seen has routinely spent 30 – 60 minutes with me. In this case, the cardiologist assumed that I knew nothing, and offered an in-depth explanation of my anatomy and how it all fit together in relation to my pesky aortic valve. The valve isn’t failing from the typical causes of age or heart disease. It’s because of the strain put on it from being connected to the artificial aortic root I received three years ago. Long story short: eventually I’ll need a new valve, which will involve a common, but risky, valve replacement surgery. He also suggested that during the same surgery, they could fix my still dissected descending aorta – so it’s a two-fer! I’m terrified about it. Recovering from open-heart surgery was the most difficult thing I’ve ever done. But I have a strange sense of resigned comfort. I’ve always known that another surgery on my aorta was a possibility, and now that it’s starting to have a plan, I can come to terms with the fact that it’s a near certainty.
I’m sharing this because I know there are people out there who get diagnosed with vEDS, and they turn to the internet for information and support. They will find a lot of scary Wikipedia and WebMD type sites, proclaiming life expectancy of 48 or 52 depending upon who you ask. I’ve learned not ask doctors for expectations or a prognosis. Every case is so different, and there just aren’t enough of us to establish trends. The other day a man with vEDS in a Facebook group turned 68. The data can’t possibly include all the people who grow old and die from something else, or never get diagnosed.
I’m sharing this so that there’s a small corner of the vEDS internet with something more than medical facts. Next week we’ll get back to road trip mishaps… seriously, we’re talking 6 inches of rain, leaking tent – and puking. It’ll be great.
Killing time before my flight home I roamed the Case Western Reserve campus where art was literally falling from the sky. Did you know that the part of Ohio was once owned by Connecticut? No, you didn’t.
“Don’t make me turn this van around” is written by Jonathan Kile, and approved by Monica Kile. Jon’s 2014 thriller, The Grandfather Clock, is available free for Kindle on Amazon.com and other eReaders at Smashwords. Reach him at firstname.lastname@example.org. Monica is a marathoner, baker, freelance grant writer, non-profit consultant, tour guide, and prolific bath taker.