Post-Op Day Two, Several Pictures Included

Yesterday, I had my miniscule procedure with Dr. Alomari from interventional radiology done at Boston Children's Hospital. The focal point of the procedure was the ankle and foot, both of which are still in a extraordinary magnitude of pain despite the medicine in which I am on (10 mg, Oxy). In sum, he injected three different areas with medicinal needles, including the ankle, foot, and thigh. Just prior to the procedure, I inquired to him about potentially working on the thigh area as well (it has been leaking a substantial amount of lymph fluid in recent times). So (despite his grueling schedule that day), he graciously agreed to inject that area as well (as opposed to c02 lasering it, which we have done on that particular area in the past).

Prior to the operation, I was required to have a series of pulmonary functioning tests done. The was my first time ever undergoing this specific series of tests; the reasoning behind the testing was due to one of the chemo medications in which Dr. Alomari was going to be injecting within me. Even though the amount in which he injected was incredibly bijou, the testing was still a hospital requirement as a mere matter of precaution. Below are three pictures mom took while I was undergoing the testing; I had no idea she was even taking them until she texted them to me later!

Pf Test

Me and Katelynn after surgery yesterday

Now, onto some of the more personal details regarding the day... I awoke feeling a great deal of anticipation, keen to have the procedure done with as I could hardly tolerate the pain any longer. The throbbing and burning sensation throughout my foot and ankle was momentous in nature, and I had no abatement from the lidoderm patches the night prior...much to my disappointment. Just before the procedure, I was greeted by one of my favorite hospital staffers to date, Jenn from hematology. I first met her several months back prior to starting the Sirolimus. She is so incredibly kind in nature, and such a truly thoughtful person. Even though I am no longer one of her patients, she still took time out of her busy day to come by and (literally) hold my before I was taken into the procedure room. Tomorrow, I will be meeting with her and Dr. Trenor at 9 a.m. To devise a plan about safely resuming the Sirolimus sometime in the near future (more about that in a future post). I am quite fond of Dr. Trenor as well, and feel incredibly lucky to have such a world renown hematologist as part of my staff. The way in which I see it (based upon several testimonials I have heard from chronic illness colleagues throughout the past several years), a Dr. who is good at his craft is a dime a dozen. However, to have a Dr. who is both empathetic and skilled in his/her specialty is, well, incredibly rare. I can truly say that all my Dr.'s ooze both empathy and knowledge, which is why I continue to trust them with my life and will always speak highly of them.

Me and Dr. A right after surgery

Dr. A and the amazing Cindy K. from interventional radiology. Love these two!

Picture of thigh area right after surgery!

Me in recovery room following surgery

Before I get too off topic, though, there are some shout-outs in which I would like to give! One is to Jose, the interventional imaging specialist who has worked on me within the past when I was vehemently ill. He so good-kindheartedly stopped by the waiting room just prior to my procedure to say hello, something in which he has done in the past as well. He is such an incredibly kind man; if you are reading this, Jose, thank you for the visit and all of the graciousness in which you have shown me in the past! Also, I would like to say hello to Pradeep, who is training under the skilled hands of Dr. Alomari. Everytime I see him he is so refined in nature and genuinely seems to care about his patients' well-being... I have no doubt that he will be a patient favorite one day and that he will continue to excel at his occupation as learns from Dr. Alomari. Also, a major thank you to Cindy for all in which she has done for me over these past several years. Whether or not she realizes it, she has truly been such a calming presence throughout all of my anxiety driven episodes and a pillar of strength. Aside from this, she is so enlightening as a nurse practitioner and overall person in general.

Upon awaking from surgery yesterday, I noticed that my post-operation nurse was actually a familiar face...it was Katelyn from 10 North West (the surgerical floor in which I am nearly always hospitalized on when inpatient). Turns out, she made the transition from floor nurse to post-op nurse a few months back. Although my memories from after the operation yesterday are rather hazy, I recall how lovely it was to have her as my caretaker again. She is so sweet! If you are reading this, Katelynn, thank you for all of your good care in the past, it was a pleasure to see you again yesterday (at least given the circumstances!). Also, a dear friend of my family (Jodie) and her sister-in-law surprised me with a visit just prior to my operation yesterday. Her son, Ben (a friend and fellow Klippel patient), just had a major operation done and is currently hospitalized across the street from Children's Hospital. Despite all of the post-op stress in which their family has surely been enduring, they so generously came to greet my mom and I. It is people as endearing as them who truly who inspire me to be a better person... they are always thinking of others despite their own plights. Please say some prayers for my friend Ben as he continues to recuperate from his operation and regain some of his strength back. Wishing you nothing but the best, Ben!

Adorable stuffed animal the beautiful Jodie and her lovely sister-in-law brought to me just prior to my procedure!

And, as always, thank you to my other friends and family for being there for me through thick and thin. As I have said in the past, having a chronic illness is truly a blessing in disguise... It has aided me in helping to realize who my true friends are throughout the years! It is easy to be there for people throughout the good, but to continuously be there for them throughout their trials and tribulations is another... well, that is what being a genuine friend is all about!

Thigh area today, no flash

Thigh area today, flash

Love you all so much, and will update soon!

Lots of love,

Ari

Today is Surgery Day

Today is the day of my surgery with Dr. Alomari; fortuitously it will merely be a day procedure and I should be able to return home after several hours. As I wrote in my last post, something had gone awry in terms of my ankle and foot within the past week or so. Despite his frenzied schedule, Dr. Alomari managed to squeeze me in for an appointment today following one of his procedures. I must say, this man has one of the best work ethics in which I have ever seen...although I can truly say the same for the entirety of the vascular anomalies staff at Children's that I have dealt with. Anyway, my ankle did not have

thrombophlebitis as I surmised it would prior to my appointment today. Instead, there are a bundle of cysts that are pushing up against the vein in my ankle, and the whole flare-up is superficial. Upon leaving, I asked about pain medication to get me through the night as the throbbing sensations have literally been intolerable... Cindy (the interventional radiologist nurse who I utterly adore) prescribed me Lidoderm patches. However, despite using three of them at once in the most painful area (as the directions stated I could safely do) I received absolutely no alleviation, which currently has me in a state of utter distress.

 Aside from my foot issue, I have a massive ear infection and despite having been on ear drops for a multitude of days now, I have yet to have a reprieve from the pain in which it has been relentlessly causing me. Between my throbbing foot,ankle, and ear, I feel as though I am about to implode. However, I trust that even though I will be in a great deal of pain following tomorrow's surgery, things will undoubtedly get better from here. Not to mention, my Klippel family has been nothing but loving and supportive as always and for that I am so incredibly grateful. I find it rather hard to connect with most other young adults my age, but my vascular anomalies friends are truly my soul-mates. I have fallen out of touch with a lot of other young adults my age from my hometown; it is nobody's fault, really, just merely a matter of them working a great deal and attending classes while I continuously grapple with my medical and emotional issues. However, I am lucky enough to have a core group of friends (aside from my vascular anomalies family) that are there for me through thick and thin, along with an amazingly supportive family.

On a heavier note (non-KT related), I awoke two days ago to a horrid tragedy; my dog had been vehemently ill in the morning time and my parents had to take her to the vet. It turns out that within the last 60 days, (at least that's what the Dr.'s surmise), she has gone deaf. Of course, I was able to tell for some time now that her hearing was not what it used to be, but I was hoping against all odds that it was some kind of exaggeration on my behalf...hearing the concrete news from the vet was absolutely tragic. I recall the days in which I would call her name from my room and she would come running in; she would lay in bed with me when I was sick due to my KTS...those days are now nothing but a distant memory. Aside from her being deaf, she has an enlarged heart along with a leaky valve. Not only that, but one of her leg joints is dislocated and the other one keeps popping in and out. To see her in pain is probably one of the most arduous things I have had to endure within my lifetime...I would take all her pain away from her in an instant if I could, but unfortunately I do not have that capability.

On a lighter note, it is my eldest sister's birthday today! She and I have had our disagreements throughout the years (like all sisters), but overall I am very proud of her and have an abundance of admiration for the person in which she has become. I hope that when I am able to work again, I have even half the work ethic in which she does. Below are some pictures; some are from today, while a couple of others are from months prior.

Dad wheeling me out of Children's today after my appointment with Dr. Alomari.

A picture of my swollen foot and ankle taken a few hours back.

Me in one of the interventional radiology rooms today awaiting to see Dr. Alomari for my appointment. I was rather nervous!

My sister Danielle and I when we were younger!

My beautiful and most loyal friend, Fe June. Please send well wishes her way!

May you all be well!

Ari

Current KT Problem: Foot and Ankle

If I am guilty of anything (in terms of this blog,) it is posting too much material within too short a period of time. However, there has been a lot going on as of recent and a great deal of happenings to post about. While I have been writing about the Sirolimus (and my decision to halt it, at least temporarily), tonight I will be focusing on a different matter related to my KTS.

At current, my ankle and foot are terribly swollen and in a great deal of pain. Based upon the feel of the skin and where the redness in (in a vertical manner that can practically be mapped out), my mom and I surmise that the current issue may be a case of thrombophlebitis. The Ketorolac I have at home has not been working, and I currently have no pain relief available... As far as heating pads and ice are concerned, any pressure that touches the area is terribly painful. I soaked it in hot water earlier, and that was fine. All in all, though, the pain, redness and tenderness remained the same.

Today, I spoke to Cindy, one of the most incredible nurse practitioners I have worked with in the past and present. She works in the IR department, and is often described as Dr. Alomari's right hand person. I asked her if he was in town (as I know a multitude of Dr.'s had been away at a Vascular Anomalies conference in Australia) and was delighted to find out he was back from his trip. With that said, my dad will be taking me to see him tomorrow and we will figure out how to proceed from there as walking on my foot is currently incredibly painful (along with the ankle).  

Below is a picture of the problematic portion of my KTS limb at present (it was taken in micro mode, with the flash on).

I will update on how my appointment went at some point tomorrow.

Arianna