"Shady's Back, Tell A Friend"

A hate-love relationship; we all have them, whether it's with a person, food, place, etc. Mine just happens to be with Children's Hospital Boston. Here is where I have grown tremendously in a spiritual sense and been saved in a physical one, yet suffered the most gruesome pain imaginable to me. As weird as it sounds, I have fond memories here, mostly stemming from my childhood. Lately, though, I just want to leave and never come back. Which leads me to approximately 46 hours ago...

I woke up feeling really sick (in a cellulitic manner). I prayed that it was all just anxiety, and that none of it was actually happening, that I had entered some state of utter delusion that was a paradoxical world created by my rational fears. However, as the physical symptoms continued to progress, I could no longer deny the cellulitic force that had taken residency in my body.

Flash forward about 20-something hours, and I am being rushed to the hospital in the back of an ambulance. Long-story short, I am here being given great medical treatment. Aside from pain control (the intense pain stemmed from my back thigh), I am being treated intravenously with fluids and clyndamycin. Dr. Fishman came to the ER today shortly after I arrived to examine my situation. Upon looking at the area, he said to one of the vascular nurses “that looks cellulitic to me”. Contrary to what one may presume, this is not a man that is quick to throw you on antibiotics if he does not think you are in dire need of them, especially in cases like mine where I have so many outstanding drug allergies.

My mom said he looked utterly disgusted to see me back. I can imagine it must be hard on him in these situations, as he exerts so much effort into preventing such situations from reoccuring. When I think of Dr. Fishman, I do not just think of a KT expert or surgeon, but that of a human being. He had kids of his own at home, not to mention a wife...and the time in which he has dedicated to his patients should not be forgotten, if even momentarily. I know I am not alone when I say I am genuinely grateful for the time and dedication in which he has put forth into the KT realm, which is why I will forever stay loyal.

- I will shamelessly attribute any absurdity in this post to the fact that I am writing it at 4:10 AM, and have not slept in two days. However, considering, I don't think it's quite as atrocious as some of the things I write when I am fully rested ; )

Love to you all,

-A 

Relentless Recovery

Hey everyone,

So the above picture is one in which I took today to showcase part of the area that was worked on during my most recent surgery with Dr. Fishman. If you look at the back of my thigh and the area that is closest to my underwear, then you will see some of the more prominent areas in which he co2 lasered. The one's from Dr. Alomari's surgery in June are fully recovered and you can see some of those scars accentuated on my longer birthmark.

I am still in so much pain from Dr. Fishman's surgery. It hurts so incredibly bad; the skin keeps getting really dry so I have to keep rubbing bacetracin all over it. The other day, it was so dry that I had to use an entire tube in order to generously cover all of the areas! If you don't keep the areas moist, they crack and bleed which just prolongs healing. Not to mention you are opening yourself up for the risk of infection all the more so. The pain radiating from the areas is still so intense even though it is almost two weeks after surgery, and that's with the pain medicine! I would honestly have to think about whether or not I would want co2 laser surgery again in the future... The amount of torture in which the recoveries from Dr. Alomari's and Dr. Fishman's surgeries have inflicted upon me has been rather brutal. I'm ready to return to my old life now, although I am not quite sure what that entails as I never really have a concept of “normal” due to my tumultuous medical life...

Wishing you all well,

-A

By the way, I may need to stop signing these with “A” at the end...one of my nurses at Children's Hospital Boston (Kristen, if you're reading this, hi!!!) got me into Pretty Little Liars (a television show) ...if you know anything about the show then you know why I may be reluctant to sign these with an A from now on lol

Home

Hey everyone! I am, at last, home! I have been for a couple of days now, and in spite of the constant pain stemming from the surgeries in which I had done, am enjoying being back in a familial atmosphere. If you keep up with this blog, then you are aware of the c02 laser Dr. Alomari did on my leg back in June. Those legions have scarred over and looks utterly fantastic now, (pics are on here in one of my more recent posts) but the pain in which I endured in order to recover was momentous! Dr. Fishman performed a very similar surgery, albeit in a more taboo area; we'll just say the thigh and regions of the buttock. He also did some schlerotherapy to help stop some rectal bleeding I have been experiencing for several years now. This is not the first surgery I have had done in relation to rectal bleeding; a lot of KTS patients, so I've noticed, are more hesitant to talk about this facet of this condition. I completely understand, as I was too for the vast majority of my teen-aged years. However, what many do not realize is that rectal bleeding is anything but ucommon in KTS patients. Some I have talked to have been rather surprised/delighted to find out that they are not the only ones who have been impacted by KTS in this way!

I am currently in so much pain from the laser in which Dr. Fishman did on my thigh and buttocks. The areas are still healing (they were done just over a week ago), but I know ultimately the surgery needed to be done. Lasering these areas was not done in an effort for the areas to look better cosmetically, but rather as a way of preventing infection. Some of these areas ooze out continuously (blood, lymph. Fluid) and allow bacteria to sneak in. Since cellulitis infections have been a tremendous burden on me throughout my lifetime, it is essential to have surgeries of these kind done every now and then to lower my risk factor.

It is currently not even 7am as I write this but since I could not sleep due to pain, I wanted to update you all on the surgery I had done with Dr. Steve Fishman. As many of you may be aware, Dr. Fishman and Dr. Alomari are both members of the vascular anomalies team at Children's Hospital Boston. I trust both of them immensely and am grateful for the incredible work in which they have both done on me, improving my quality of life drastically over the years. - A

Below is a picture of me and my sister right before I was discharged!