|Ouch! Its a kidney stone and not another dissection!|
We left Palm Coast early Sunday morning, drove through Jacksonville and arrived in Tallahassee mid-day, making the requisite bathroom stops along the way. Ironically as kids we'd need to stop all along the way during summer vacation trips. As our bladders grew to adult sizes those wee-wee pullovers seemed to vanish. However to our dismay they'd return with a fury once we hit the 'big Five O'. We began to think of interstate rest stops as oasis on the asphalt ribbon's horizon, shimmering mirage vapors calling to us to pull over. Thoughts of the previously unimaginable began to appear, frightening hallucinations of adult wee-wee pullovers morphing into adult wee-wee pullups.
Delightfully though, our hotel suite was comfortable and they proprietors even served shelled walnuts and raisins as part of each morning's breakfast.
Fatigue had been my constant nemesis the past several weeks and so the evening of our arrival I gave the blame for my exhaustion and desire to curl up in a fetal position to my dissected descending aorta and weak heart. I quickly remembered my latest bout with chronic fatigue in South Florida where my headed started spinning and I laid down on the concrete, thinking a new chapter in the whole scheme of things was about to occur.
Every thing seemed OK for a moment as I laid on the bed and I pulled the additional, extra small hotel pillow into my abdomen area. A good night's rest and the fatigue will go away, I told myself.
Monday morning arrived and the fatigue remained and now accompanied by sharp, constant pain in my lower left gut. Metamucil was back at home and the characteristically delicious travel food like, pizza, chips and snackaroos had been my weakened resolve's choice along the way to Tallahassee.
Judy always packs water, nuts, dried fruit and those really good for you foods before we leave on a trip. Funny though how scrumptious colorfully packaged food looks stacked neatly on the gasoline station shelves.
The pain seemed to resolve with the morning's activities and the family spent a wonderful day on the grounds of Walkulla Springs, a Florida State Park. The once crystal clear waters now stained brown with fingerprints of adjacent housing developments and shopping centers are still a great place for an afternoon swim.
Our two teens, Jincy and Ruairi, love to swim. Their already dilated aortas probably aren't up to jumping off the high-dive platform into the mysterious waters below but what can you tell a teen, (especially a 'Marf Teen')? In spite of their limitations, their passion for life is as unquenchable as the river basin's thirst for cool cold spring waters.
|Ruairi, 15 after a jump off the high dive into the deep spring|
|Jincy, 17 and her cousin Suzie going off the top platform into alligator infested waters below|
Later, back in the hotel room, we were all beat, dog-tired and ready for a shower and bed. Judy reached over to kiss me goodnight. Uncharacteristically I pulled the sheet up over my head and told her to leave me alone. The chronic fatigue beast had returned. Lethargy was swallowing me up and all I wanted to do was tighten up into the fetal curl, hidden from the world under hotel sheets.
Sharp pain cut through my lower stomach as morning light streamed between the heavy dark curtains.
'Absolutely no more junk food for me on this trip', I told myself as I had a zillion times before, 'especially those yummy jalapenos'.
'Ohhhh!' I grabbed by stomach and practically ran out of the room, down the hall to the bathroom downstairs by the hotel's fitness center.
Hotel bathrooms are usually always too small. They are especially too small when they don't have a vent fan. I always scope out a nearby hallway bathroom when staying at a motel. The ones near the lobby always have an exhaust vent fan and are usually much more spacious and with insulated walls where those in the adjacent rooms won't raise their eyebrows in surprise.
Ten minutes later and back on the hotel bed the searing pain I was back in the fetal curl. Pain was not going away. This was not a throbbing pain but a deep, continued hurt. I wondered if my left iliac artery was now dissecting.
Herein lies the horrible curse of living with a connective tissue disorder. You never know what is happening deep in your body. The sharp pains can be a strained muscle or they may be your aorta unraveling, death moments away. Flip a coin.
The constant fear of imminent death gives way to a level of acceptance for some, but the adrenalin is always flowing despite beta-blockers and other medications flowing in the bloodstream. Comparing notes in a support group is one of the only reliably available tickets to sanity.
I headed back to the bathroom.
Five minutes later and with a toilet full of bright red blood and cramping pain I knew it was time to go head out to the emergency room. For a brief instant I thought of calling 911 but the hospital was only three miles away and if this was a big dissection or aneurysm I really wanted to be in control of my last few moments.
Judy didn't hesitate when I told her I wanted to go to the ER. The teens would finish packing for the return trip to Palm Coast and we'd have Grandaddy pick them up.
When Ruairi asked me on the way out if I was OK, time for me froze. If I told him I was scared that another major dissection was underway, his worry and stress levels would skyrocket. But neither could I lie and tell him everything was OK.
After considering all possible answers I blurted out, 'Going as a preventive measure, son'. Children with Marfan parents have it just as bad as parents with Marfan children when it comes to worry about the other.
Fortunately there were few in the emergency room waiting room and after I explained about my descending dissection, aortic valve and Dacron graft, the nurse quickly hooked me up to the ECG unit and found me a room.
Despite the best accommodations, going to the ER while on vacation is not my first choice of activities.
But I was totally impressed with the professionalism of Tallahassee Memorial Hospital staff, their courtesy and manner with which they conducted their emergency room operations. One of the first tests doctors want to run on me when I have an incident is a CT Scan with contrast dye. They usually don't even ask me about the potential for contrast dye damage to my kidneys. I was amazed when Dr. Draper asked me about my ability to withstand contrast dye.
Renal failure had hit me during previous surgeries, so I asked if he could administer a prophylactic medicine before the dye. Without skipping a beat he told me he understood and would try the CT scan without the IV contrast dye at first. The dye would be only used if the radiologist could not read the first non-dye scan. Instead of IV dye I drank several large cups of a bland tasting watery substance.
First he rolled me over and took a stool sample to rule out blood in my colon. You have graduated with flying colors with a degree in humility after having to raise your butt high in the air wearing nothing but a floppy hospital gown so the medical professionals can inspect goods along the various body ports of entry. Pride is a word no longer relevant. Anyway, when you are in that much pain you don't care what is being done to you as long as the hurt goes away.
As usual, when terrible pain hits, the words 'aneurysm' and 'dissection' roll around and around my mind. I can't tame this fear. Despair experience of the unknown hurt from my previous dissection always stays fresh on my heart.
I don't run to the ER every time a new hurt appears. If that were the case I'd be in the hospital every day.
But when a deep chronic pain sets in, one obviously not going away and one associated with lots of blood, I know it is OK to be proactive, cautious and seek out medical help. So what if someone else labels me as hypochondriac. Staying alive can be a tricky job sometimes.
Arriving in the CT scan room my bladder felt like an over filled water balloon. After the CT scan I ran to the toilet, my hospital gown flying high in the air behind me.
Relief can be an unappreciated word until one is in the position of finally finding an available loo when when carrying around more sprayable liquid than a fire truck.
But this time it was a mixture of blood clots and bright red blood. 'Oh oh', I thought. Could my renal arteries, already dissected be pumping blood directly into my kidneys?
I knew the aspirin and Coumadin in my body didn't help the situation any, and in fact had grabbed a handful of fresh spinach leaves before leaving the motel room fro the ER, hoping they'd help with clotting.
'Doc, I am bleeding badly', I said, pitifully upon return to the ER
'That may be a good sign' he said. 'Blood in the urine and the CT scan tells me your problem is not aortic in nature. You have a really big kidney stone!
'Beam me up, Scotty' was all I thought. No longer on the edge of death, I was instantly transported back into the realm of the living. Such is the life of someone with a connective tissue disorder like Marfan Syndrome.
I am so thankful to the staff at Tallahassee Memorial Hospital, the doctors and my family.
Not only is living a breath away hard on me, it is just as terrifying for my family, especially the teens and my wife and parents.
The stone must have cut its way out during my CT scan wee-wee episode, landing in the comode with all the blood clots.
Discharged and feeling so much more alive, I walked out of the hospital to the car. Judy drove me to my parent's house where the family who had been expecting an extended stay in the hospital were so surprised when we walked in.
Now I know what the symptoms of a kidney stone include. Next time I have lots of blood, excruciating pain, fatigue and lethargy I will think kidney stone. But I will also still probably think aneurysm, or another dissection, or ..........
Such is life with Marfan Syndrome.