The personal side of VEDS

What It Means for Me – The “Short” Version

When I received my diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS) in 2011, we were dealing with the after-effects of a traumatic c-section, bowel issues, and aneurysms, so we had little time to process the long-term effects of the disease.  In very simple terms, I’m at risk for intestinal, organ, or arterial ruptures.  Any time.  Any where.  Without warning.  So caution and hyper-awareness of my body are a top priority.

Because it’s vital for emergency personnel and surgeons to know my diagnosis when coming up with a treatment plan, I carry around a four-page health history (from birth until present) with me everywhere.  I also take it to every doctor’s appointment or hospital visit, especially new-to-me physicians.  Additionally, I carry a VEDS brochure listing possible emergency complications that can arise.  I need to get a medical ID bracelet and wear it daily… it’s been on my to-do list for the last, oh, six years!  I don’t necessarily “look sick” – VEDS is considered an invisible illness (tell that to the 12-inch vertical scar on my abdomen!).

Thankfully, I do not experience daily chronic pain, but odd and concerning symptoms can – and do – pop up.  We have to decide if those symptoms warrant an ER visit, scans ordered from my vascular surgeon five hours away, or if I just need to take it easy for a few days.  At times, I’m tempted to hold back in fear of the “what ifs.”  Traveling brings special concerns, such as, “Is there a good hospital nearby?”  or “Will new symptoms interrupt our vacation?”  But because life is short (oh, how well do I know this!), I don’t let those fears keep me from making memories.

Here is a “quick” overview of how life with VEDS has affected me physically:

• Easy bruising and visible veins on my chest and arms throughout my life
• Age 20: Spontaneous ruptured colon that nearly took my life; multiple surgeries and removal of about 2 feet of intestines; temporary colostomy and jejunostomy bags; exclusive TPN (Total Parenteral Nutrition), also known as IV feeding;  six months to recover
• Age 29-33: Difficulty conceiving because of scar tissue
• Age 33: Emergency c-section of my son
  • My labor was initially induced due to high blood pressure, but they had to rush me into a c-section because his heart rate dropped. We were praying against a c-section because of all of my scar tissue, but a c-section most likely saved our son’s life and mine.  God knew.
  • Ruptured uterus
  • Needed 25+ units of blood due to bleeding out (meaning they had to replenish my body’s entire blood supply about three times over within a 24-hour period)
  • Emergency bowel resection due to necrotic (dying) tissue – removal of 4-5 feet of my small and large intestines
  • In the days following our son’s birth and the new discovery of aneurysms, geneticists at the hospital connected the dots, suspecting a connective tissue disorder. Bloodwork confirmed Vascular Ehlers-Danlos Syndrome at the age of 33.
  • Stayed in the hospital five weeks to stabilize enough to return home, under the care of my husband, home-health nurses, friends and family.
  • From November 2011- August 2012, I had numerous ER visits and hospitalizations; I was under the care of home-health nurses and continued on IV feeding for 9 months until my intestines fully healed
• Following my son’s birth and the loss of so much blood, my body was fighting to stabilize. We had noticed a lump on my neck a couple of weeks before birth – it was still there while I was in the ICU.  Scans revealed five aneurysms in my body, including a large one on my right carotid artery (my neck), which carries blood to the brain.
  • Within weeks of our son’s birth, the carotid artery aneurysm had grown at an alarming rate – it was a physically visible golf-ball sized lump on my neck – and it was at risk of “imminent rupture” according to my vascular surgeon.  Just three month’s after Reed’s delivery, I was still very sick from my bowel problems, but had to undergo emergency surgery to stop the aneurysm’s growth and potential rupture.  Specialists at Johns Hopkins Hospital fed 46 platinum coils and two stents up my femoral artery to keep blood flow to my brain and clot off the aneurysm.  The surgery was successful.  The CT scans from before and after are amazing!
  • I had minor strokes (TIAs) following this surgery, but it was caught very quickly and addressed by Neuro-ICU staff. They were able to save the use of my left side, which was suffering effects of the stroke.
• From 2013-present, I’ve had several ER visits to investigate sudden pain or new symptoms to rule out any major vascular issues.
• In 2017, I had two surgeries on aneurysms in my right wrist and internal mammary artery.
• In total, I’ve had about 15 surgeries to address bowel issues, aneurysms, and other EDS-related issues.
• I get scans every year to monitor existing aneurysms and check for new ones. My vascular surgeon, who is a national expert on VEDS, then determines if the aneurysms need addressed or monitored more frequently.  I’m probably glowing from all of the radiation I’ve had!
• The emotional, spiritual, and psychological implications are too lengthy to get into here, but depression and anxiety were present during much of this journey. I hope to write more later, but I will tell you that help was available and welcomed.

I’ll write the “Long Version” in time.  Evidences of God’s sovereign hand, His miracles, and His great mercies are woven throughout.  The timing and God’s provision of people (loved ones and medical professionals alike) is astounding.  God’s goodness was ever present – even if I couldn’t see it at the time, it is glaring to me in hindsight.