Confessions

I was hospitalized this past week for a Cellulitis infection. Although, I do not feel as though I can call it that accurately without adding there was some controversy as to what it actually was from the Klippel expert himself, Dr. Fishman.

He will tell you he “simply doesn't know” in terms of whether or not it was a Klippel valve bleeding into another nor an infection. All I know is that I was on the phone with the VAC Clinic Friday with a dear VAC nurse I have known for quite some time now. She told me if it started to spread (the legion) or (got worse) than I could page the surgeon on call or come in. Unfortunately, things progressed in an unfavorable manner and the red, aching legions spread rampantly Friday night. I asked every person I met in the emergency room that night whether or not they were associated with Dr. Fishman and if they were, whether or not they deemed this an infection worthy of antibiotics. None of them hesitated in saying yes, we need you admitted and to treat this “infection.”

I escaped the hospital scene Christmas Eve and was elated to leave the downtrodden venue. There was one goodbye I did not say upon leaving though, it was too hard and I could not submit myself to it right then at an emotional level.

While there, I met a girl who was a Klippel Patient struggling for her life. We had contact prior, but this was our first time having physical contact. She still is inpatient, actually, and tells me she will never be released... One of my least favorite nurses I've ever had would not allow me to go visit my ailing friend a mere three floors beneath mine. Generally, I respect nurses and their word and would not forbid it. I explained to her the urgency of the situation and still, she resisted understanding my plight in a seemingly spiteful manner. She kept saying there was a person above her in the system she had to ask, as though she were referring to some vague deity... Nurses prior to her and nurses after her would instantaneously respond yes when I would ask to visit the ICU to see my sickly friend, but this one was different... Perhaps she lacked emotional decorum so vital to someone in her profession that I should feel bad for her... I hope to never have her again, she was uncouth in her actions and lacked sympathy.

I kept asking her, and finally she told me that the answer was no, I was to forget about it. I phoned my friend and spoke with her sister and told her what my nurse had said. Still, that would not be enough to contain me. Well, this nurse had 3 or 4 patients to deal with simultaneously and not enough time nor resources to keep me on lock-down. So, I snuck down to ICU to see my friend where I was greeted by my friend's ICU nurse that day. She was so kind that I had to disclose to her what me being there in that moment really entailed; lies, sneaking off my floor, and a seemingly spiteful nurse who would probably kill me if she found out where I was. 

I prepared to get a good verbal lashing in return, but the opposite happened, much to my surprise. “Thank you,” her nurse said. “Thank you for being here. She got so excited when she found out you were coming.” We shared a smile and she helped me conjecture a plan in case I were to be caught by my nurse; I could not believe the lengths she would go to in order to help me see my friend! Her heart was certainly in the right place, and she knew that treating my friend did not just need to happen in a medicinal manner... That's what separates a nurse from a good nurse, though, and I am proud that I did not let my vile nurse that day hinder my efforts. I never got caught, by the way. ( = Normally I would not brag about rule breaking but this is indeed an exception to the rule!

She slipped me into the plastic yellow protective gear one must wear while visiting a friend who is on precautions with outsiders. I was well-acquainted with this gear as usually I was the one on contact precautions. I gladly slipped into the yellow suit, mask, and gloves for a chance to see my friend yet again. She was unable to move, and her breathing was as unsteady as could be. In between breathes, she managed to speak her depression to me. She told me that “she was planning her own funeral” and burst into an explosion of tears. Where words failed, my hand didn't. I immediately reached out my hand for hers, and latched on tight. I don't know if there is much else in which I am willing to share of that moment...but damn, at that point you realize there is more at play here in life; there is more than that dress you want but can't afford, than the number of tiles on the ceiling, than how many pounds you lost in the weeks prior... I have had that realization prior, but sometimes the feeling wears off and one is reminded again...

Not many people will understand it, and seeing someone so close to their end demise (for me) is much different than coming back from those times where I almost died. Perhaps because I am at a more alert level...

For any reading who question the validity of this story, I can easily tell you the patient's name and where to find her/her family online but I won't. The Doctor's at Children's would know that at the very least I am speaking of a real patient for I spoke/wrote to them about her while inpatient and they are the ones treating her. I was, however, met with blank stares and non-relies as they are under confidentiality when I tried to ask what more they could do for her. She is a very difficult case for them right now. And, of course, the nurses reading it would know what happened. I am not worried about the validity of my story, though, as much as I am for the patient's well-being. Notice how I emit details regarding people's appearance...for my goal is not to cast trouble or assign blame upon anyone. Her fate looks bleak and if there is a higher power, I call on him, her, it to heal her.

These are my confessions, for now. And I'm not sorry. I would do it all over again, for sometimes breaking the rules means being a better human-being and those dictating them simply cannot empathize with that.

I'm home, albeit in a ton of pain physically and emotionally. I feel so trapped, which is why I write. When I write, I have a chance to tell my truth, and perhaps it can help people to understand me better. I still believe that some of the best stories, though, are the ones untold...or the ones that are happening between the lines.

In case you have not yet come to figure this out, this blog is greatly uneven in content... I write very little about Klippel itself and more about the emotional journey it has led me on. KissesforKTS is more than just about garnering awareness of Klippel itself, but all of the components that come attached with it....

I will post some pictures of the hospitalization in my next post.

LOVE to you all,

Ari