Monthly Archives: February 2018

New Milestones

“Excuse me, is there is history of blood clotting disorder in your family?”

Yes……

“Did the doctor say what he was looking for when he requested this Angiogram/cat scan of your daughter’s lungs?”

I whisper to her “The diagnosis is on the script. He wants to rule out the possibility of pulmonary embolism.”

“Why would the doctor think she might have them?”

At this point my antennas are going crazy with worry: why are they asking so many questions? Did they see something on the scan? And why are they asking these questions in front of my daughter?

I struggle to keep my voice calm and steady so as to not alarm my daughter who is no longer Snapchatting her friends about how lucky she is to be missing school. Again. She doesn’t bother explaining to her friends that she is not lucky. With every absence, she is learning more about the human anatomy and modern medicine than what she will ever learn in school. All at her expense. She is listening intently to the exchange between the technician and I.

I explain to the technician that my daughter has venous malformations mixed with lymphatic malformations with thrombosis. I affirm that the condition affects only her right leg; it affects smaller, ancillary veins and probably capillaries. So you see, it’s nearly impossible that the clots in her leg could travel to her lungs and cause pulmonary embolisms. But the doctor needs to cover every angle and make sure he isn’t leaving any stones unturned. I smile and wink to my daughter (hoping that my smile doesn’t look weak or fake).

Once again the technician asks, “What is the name of her condition?”

I spell it out for her, letter by letter, Klippel-Trenaunay Syndrome.

Ten minutes later we are walking to the car. “Mom, I don’t like those questions that lady was asking.”

I admit to my daughter “Yeah, I didn’t like those questions either.”

“Do you think they found clots in my lungs?”

I cannot lie to her. She is 15 years old. She gets it.

“Honey, I hope they did not find anything wrong with your lungs. Maybe they didn’t see anything at all and just want to make sure. Maybe they are looking at a healthy set of lungs and scratching their heads wondering why we were getting this test done.”

I said it more to convince myself and make myself feel better.

Our conversation falls away from the implications of the test and we focus on some milestones.

It was a day of FIRSTS.

Having undergone at least 15 MRI’s in her lifetime, she has become something of a professional at MRI’s. We have a solid routine that we follow whenever she undergoes an MRI. She suffers from claustrophobia, but we do what we can to ensure a good experience for both her and the MRI technician.

This was the first cat scan she has ever had. It was a new experience…not exactly one we would like to repeat any time soon.

We learned that the contrast they use for an MRI is very different from the contrast used for a cat scan.

For starters, MRI contrast is the consistency of water. Contrast for a cat scan is gel-like, hence it is thicker and slower to administer. But the good news is that a smaller quantity is used.

The not-so-good news is that since the liquid is a heavier/thicker consistency, it requires a larger gauge needle when they set up the IV. That was painful for her and painful for me to watch.

Another big difference is that the MRI contrast feels ice cold when it’s starts flowing through the veins. Cat scan contrast give a hot, burning sensation and gives you the sensation that you are urinating yourself. She was warned about that…twice. And they were not wrong.

Another milestone was despite her claustrophobia, she managed to sit through the scan without being pre-medicated. We were told the scan would take about 5-7 minutes and she was cool with that. And we were told that the cat scan machine was smaller than an MRI machine. She was cool with that too. But what we didn’t know is that due to her petite size, even though it was a cat scan of her thorax, she was in the machine literally up to her eyeballs. She started to feel claustrophobic because she was literally face to face with the machine.

BUT SHE MANAGED!!

An even bigger accomplishment is that I was not in the room with her!

Apparently cat scan machines emit larger quantities of radiation than MRI machines.

I have held her hand through every one of those 15 vomit inducing, tear soaked, anxiety filled MRI’s since she was 2 years old.

Just as they were ready to begin they asked me to step outside. I saw panic in my daughter’s eyes. I assured her that the worst was over and that she could get through the next several minutes. She didn’t want me to leave the room, but she knew that I had no choice.

In the end she did great!

The very next day the pulmonologist called and relived my anxiety…the results were completely normal!

No PE; no abnormalities. It’s good to know that her lungs are clear.

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