Some Debulking Pictures

Hey all! Here are some debulking pictures from a few weeks back. I had my ankle debulked by the amazing Dr. Spencer at Boston Children's Hospital. The first 2 pictures were taken by her during the procedure itself.

Where Have I Been, Anyway?

Well, I will (attempt to) summarize:

About 26 days or so ago, I was rushed to Children's Hospital Boston with a surmised Cellulitis infection on my foot. I stayed inpatient until my surgery five days later while receiving Vancomycin through the IV. The initial surgery I had was a debulking of my ankle done by the (in my eyes) infalliable Dr. Spencer on the Vascular Anomalies Team at Children's Hospital Boston. She's an absolute rockstar, let me just begin by saying that much (my version of one, anyway). Then, a week later, I underwent Bleomycin injections in my private region with Dr. Alomari. I do not quite think I  need to say much about him in this post, as I think readers already know how superb I think he is as both an intellect and human-being alike (based upon previous posts). It's time for me to gush about Dr. Spencer, now. ( = A week after that operation, I endured a 3rd surgery within 3 weeks, this time under the scalpel of Dr. Spencer and her incredible team. There was a slight issue with 1 of the 2 drains getting stuck, and we needed to go back in and get it the heck out as it posed a very ominous threat to my health.

So, yes, I just underwent 3 surgeries within 3 weeks time along with a cellulitis infection (and some more standard medical complications in a mere matter of 3 weeks). It's been a journey, a ride, and I am absolutely inundated with copious amounts of EXHAUSTION. I arrived home not even two nights ago by ambulance.

But, how is that damn foot of mine we debulked, anyway? Well, it's phenomenal. Truly, it is. And I attribute that mainly to Dr. Spencer and her kick-ass self. You know what I love about her? The way in which she not only works wonders with her scalpel, but the way in which she was so incredibly dedicated to her craft even after the surgery. So we are about to get four feet of snow in a couple of hours and she has to be in work in Weymouth... & She STILL wakes up at 4am to come and look at the wound and just chat in general with me at my bedside. And this, may I add, was not an infrequent experience... she was consistent in showing up, being there, and nourishing my mind with positive thoughts and seeds of knowledge and inspiration. She would phone in if she couldn't be there in person. Her life perspective, her work ethic, her work skills, all an A+, undoubtedly. 

Below is a picture of me with undoubtedly one of the most inspirational woman I have met thus far on my journey's while inhabiting this Earth: Dr. Spencer! She was so incredibly kind when I asked for a picture. This was taken just prior to the debulking (1st surgery together). 

I have so much more in which I will update you all with soon, including loads of pictures from my 23 day inpatient stay at BCH and stories/opinions galore. I apologize if the writing of this particular article was sub-par, truly I am. At this point in time, I am just incredibly fatigued but the foot itself looks and feels ten times better than I ever could have imagined at this point in time. 

Lots of love and may you all be staying warm! - Arianna Helena

She's Alright Now

I have a great deal in which I yearn to share, but am not quite sure where to begin. Therefore, I will just follow the waterfall of emotions in my mind and see where this particular post takes me...

It was very much so like any other day of surgery, with mom and dad and a bag of essentials in tow as I entered the hospital. For the second time since it had been instated at the opening of summer, I was placed into the IR waiting room prior to my procedure with my interventional radiologist. I was somewhat accustomed to these “peanut procedures” now with this particular doctor, and was greatly anticipating this one because of the bout of pain I had been experiencing the entirety of summer. October 1^st, in my mind, could not get here fast enough. Pain, as many of you know, is a vile force to be reckoned with, and I was tired of not being able to sit comfortably. The only comfortable position in which I could muster up on any given day was that of lying on my stomach. Not to mention, if I ever wanted to have a sex life of any sort, this surgery would be undoubtedly be instrumental in helping me to do so.

With that said, the morning of the surgery arrived and I kissed mom and dad goodbye with a mere peck on the cheek as the staff wheeled me into the operating room. I was not scared in the slightest, I had done this “process” (so to speak) too many times before. Not to mention, my trust was placed in the attending performing the operation. He had operated on me in much more dire circumstances prior for several years. For me, this surgery was almost symbolic of a new awakening; one in which I was addressing a problem that had been bothering me for quite some time now...not just on a physical level, however, but an emotional one, too.

I awoke in the ICU with my oxygen level in ruins; apparently, I had a horrific allergic reaction to morphine while under and some fancy word (relating to my breathing level) had dropped incredibly low. What was supposed to be perhaps a 1 night stay in the hospital turned into an 11 day one. I was dissatisfied, but I do not remember the vast majority of what I went through (thankfully). Nor do I blame any of the staff nor anesthesiologists, as their skilled handiwork is what got me through that operation.

I am still, however, having a hard time coming to grips with the fact that that operation could have been my last day on Earth due to the unfathomable allergic reaction I endured while under general anesthesia.

I will write more before long, however for now I am off to retire to bed. Since returning home in mid-October, I have been dealing with a great deal of other life matters (some pertaining to my Klippel, others not). This, I find, is a rather confusing time within my life but I am trying to embrace it with both arms (with the assistance of my family and friends).

I'm Back

Hey, everyone. I hope you are are genuinely well. I apologize for not updating for quite some time; I've been on a bit of a roller-coaster lately in terms of my mental and physical health. My last surgery did indeed take place, but went horribly awry in some aspects. It was nobodies fault by any means, but it turned into an 11 day inpatient stay at Boston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days...

Writing is something I have been incredibly passionate about for several years now; the entirety of my life I have felt misjudged by the vast majority of my colleagues in a slew of ways. With writing, however I get to reflect and present myself in a way that I am too awkward to do so in a verbal manner...that, in itself, is incredibly soothing and cathartic to me. I also write about issues

I am exceedingly passionate about, like having Klippel-Trenaunay Syndrome and the ways in which it has impacted my life thus far. Mental health is another topic readers will see me discuss frequently; why does it take Robin Williams (May God rest his soul) killing himself for depression to make headlines? While many were aghast that such a loved man could not find strength to hold on, the truth is this disease impacts mere mortals everywhere. 

I look forward to sharing some of my experiences with you as my far as my Klippel, mental illness, experiences at CHB, and other personal matters are concerned. You will never see me holding a scalpel or be behind the laser of a machine that has helped save my life numerous times, but I hope to save lives in a different way. That is what envokes a burning flame within my soul. I have found my passion throughout the past several years, and despite my obstacles I hope to achieve them. 

In the meantime, though, I do believe in the kindness of strangers as the Klippel family has kept me afloat on many of my off days. They are no longer strangers, though, but treasured friends despite where they end up on this sometimes rather unpredictable, jagged journey.

When I started this post, it was my first time writing since my last one. I was not even quite sure I would be able to construct a simple sentence let alone write in paragraph form...here is to hoping this was somewhat edible in content. 

I greatly anticipate writing more incredibly soon,
Ari

Imminent Surgery

Hi everyone! I have not updated in a bit as I have been rather busy maintaining my health (both emotionally and physically speaking). The picture in which you are viewing is not exactly the most pleasing to the eye, however it is a picture of the growths in which I am going to have operated on soon by Dr. Alomari from Children's Hospital Boston. These growths, despite how minuscule they may look, are prominent in a rather unpleasant place (further explained in my previous post "Underneath Your Clothes") Due to their location, I have an extremely hard time wearing underwear. Not to mention, they are located in an area that is incredibly sensitive in terms of nerves and sitting is rather uncomfortable... I am in a constant amount of steady pain. No matter what location I position my body in, they tend to hurt a great deal. I am not on any pain medicine to alleviate the ache as this is a chronic issue. On a daily basis, I take an NSAID called Meloxicam which has helped momentously in terms of being able to walk on my leg. Prior to discovering that medication, walking in general was an arduous task so difficult I thought I would be wheel-chair bound for the remainder of my life. However, this medication does nothing to alleviate the vast discomfort of these growths. Located beneath the surface of these particular growths is a lymphatic malformation (which, of course, stems from the Klippel Trenaunay Syndrome), so we are not quite sure how they will respond to the injections in which I will receive during the imminent surgery (I do not yet have a specific date, but it should be happening prior to this month's end). I have been informed that this surgery will likely be the first in a series to help alleviate the discomfort in this area. 

In addition to these growths, I also have a slew of others that are larger in nature that are scattered on my right butt-cheek and a couple of other various sensitive places. These particular growths will be removed using c02 laser, which I have found to be an extremely successful method in eliminating growths of these sorts in the past. Recovering from c02 laser can be a bit of a hassle, but I have found that it is worth the end result. My biggest concern, in terms of the c02 laser, is acquiring a cellulitis infection. Sometimes, my body skips the cellulitic route and heads straight to sepsis despite me seeking immediate attention upon symptoms of an infection first occurring. To be rather honest, I am haunted by the memory of the multitude of times I have awoken from a night of slumber with a 105 temperature and massive infection. Despite rushing to the hospital immediately, I would find out I had a massive cellulitis infection or was septic. It is not uncommon for me to have dreams in which I relive past experiences concerning serious infections and what not; in fact, these memories slip into my dreams more often than not. I will update again shortly, and appreciate all of the positive feedback I receive in terms of these posts immensely. To have the support system I have is indeed a blessing, and one in which I do not ever want to take for granted. Below is a picture I took last week summarizing some of my feelings in regards to conditions of this sort. I will have more of these to come featuring a dear friend of mine (who also has a vascular anomaly) in an upcoming post.

May you be well,

Arianna

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

It Happened That Night

Hey guys! So once again, I am writing this while inpatient at Children's Hospital Boston. I am currently here due to another cellulitis infection which initially began Wednesday evening. It was around 9pm that I awoke to a tremendous headache, scorching pain in the left buttock of my KTS area, a fever and a slew of other worrisome symptoms. As many of you who deal with these infections know, the onset of one is hardly pleasant. Since my pain was not yet out of control, I talked to my mom and dad and we decided to check in about how I was doing in about half an hour or so. I think we all knew that it was only a matter of minutes before I would be on my way to the ER, though. Still, I fought to remain optimistic in my mind while all of this was going on. I tried to convince myself that the pain may not get worse, and that I could perhaps hang on until tomorrow when my primary doctors were in and I would not have to go through the whole ER ordeal. However, the pain got substantially worse over the next half hour or so and suddenly it felt as though various steak knives were being jammed into my left buttock – it's a pain so intense, so deep, that I shudder when merely thinking about it. At that point, the hurting was unbearable and my mom and I were out the door to the ER in no time.

Emotionally, this was a rather hard experience as well because I had been taking Keflex twice daily at 2000 mg (a preventive dose Infectious Diseases put me on after the severity of my last infection). Once again, my body was breaking through yet another medicine and it was not only disheartening, but scary , too.

Perhaps this is the real kicker, though: For the past three weeks leading up to that infection, I had not been able to walk on my left leg due to severe pain that started at my frontal thigh area and stretched down past my knee cap. Throughout this time period I was in contact with Dr. Trenor and Dr. Fishman, but Dr. Alomari was out of town and I knew he would be a key component in getting to the root cause of what was causing me not to walk. So, just earlier that day (Wednesday), I had been at Children's and had a somewhat lengthy doctor's appointment with Dr. Alomari (who had just returned from his time abroad that day) in regards to this new and very problematic area. He ultrasounded my leg, and within minutes was able to diagnose me with “acute thrombophlebitis.” To treat it, I would have surgery on Monday, February 24^th in interventional radiology with Dr. Alomari. I came home from the appointment incredibly fatigued, so off to sleep I went. Little did I know my body had a bit of a surprise in store for me just a couple of hours later...

So, as I rode to the ER the night of the infection, I was not only dealing with the sensation of stake knives going into my butt but the pain from the widespread thrombophlebitis as well. Between not being able to walk nor sit, making it downstairs to my car proved to be quite an obstacle in itself.

Anyway, I am now here being treated with three IV antibiotics and go for surgery tomorrow with Dr. Alomari. The teams are doing a fantastic job of providing me with great pain relief, and everyone is so incredibly friendly! While the redness in my buttock has certainly gone down, it is still rather uncomfortable which tells me this infection will not be a quick one to treat.

I will update more soon! If you have any questions, please feel free to leave a comment below and I will be glad to answer it.

Below are recently taken pictures of the area with Thrombophlebitis.

I got to spend some time with my younger sister tonight too which was so incredibly awesome! I love her to pieces. Here is a picture of us from a mere few hours ago.

I will be in touch very shortly! Wishing you all well. - A

Picture from before Surgery

Hi my loves! I apologize as I have not been writing on here as often as I am accustomed to - I keep trying to write, and then seem to lose direction in my scripts; it seems as though I am going through somewhat of a massive writing blockage at the moment. I attribute this to how much I currently have going on medically and emotionally. Although I have been out of the hospital for almost a month now, I am still dealing with a great deal in regards to my KTS and the emotional residue that accompanies it. Because I am in the midst of dealing with the chaos, I do not quite know what to make of it just yet. Basically, for me to analyze the situation in words is extremely tough to do at present; I am still adjusting myself and do not know what to make of it.

In the meantime, though, I have a picture to share with you guys. This is a picture of me getting wheeled into surgery approximately three weeks ago while I was inpatient for a cellulitis infection. Dr. Alomari spearheaded the procedure - perhaps that is why I look so incredibly content and, well, unfazed by what is about to happen. Aside from the fact that it was a rather simplistic procedure, I trust this particular professional with my life immensely. The four leaf clover in which I am holding was a gift from my dear friend Jeni who had visited the night before. I appreciate her more than she even could know! - A

To Sit Comfortably, Once Again

Hey everyone! Since I last posted, I have been discharged from the hospital, come home, been re-admitted, operated on and discharged once again. And this is all within a week's time period!

It's true, the life of a KTS patient can be absolutely insane and anything but ordinary. But, as I continue to shovel my way through this difficult passage in life, I am coming to terms with the fact that almost everyone has been dealt an unlucky hand of cards in some way or other. This is just mine, and it is prepping me for the future in which I hope to help others and possibly inspire them. I guess it is not so much the problems in which we are handed, but the way in which we deal with them.

For now, I will give you guys a somewhat brief update on what has been happening with me medically.

I got discharged from the hospital this past Friday in a great deal of discomfort. The MRI showed some cyst areas that correlated with the places in which I was having pain. So, since every medication I was taking was done orally and my vitals were under control, the teams decided it was viable for me to go home for the weekend. Then, I would come back on Tuesday and have the areas operated on by my beloved Dr. Alomari. When I had the MRI and I was in a large amount of pain inpatient, he was out of town for a couple of days to attend a medical conference. I was freaking out, absolutely petrified that I was at a dead end and that if this issue couldn't be fixed , I may never again sit comfortably on my butt and/or thigh again. I already have a great deal of problems standing for more than a few minutes of time, and sitting was often the only relief I got from that pain. Now, it seemed possible that sitting may no longer be an option. Inside, I felt so incredibly lost and it seemed as though all my hope had vanished.

On Tuesday, prior to the operation, Dr. Alomari came into the room and we talked things over. Aside from the pain, I also had some deeply embedded vesicles that had been leaking lymph fluid and blood for several weeks. I had not mentioned them much before as I was just hoping they would merely close off and become a distant memory. Unfortunately, they persisted with great vengeance, constantly leaking through all of my pants throughout the day and evening with little to no breaks in between. So, at the last minute, we decided to do C02 laser to eradicate the stubborn vessicles which could act as a portal for infection.

I woke up from the operation in great shape - I was walking, talking, and even laughing! Of course, some of that powerful pain medication eventually wore off later that night and I felt some pain. Nothing too overwhelming, though. In fact, the only area that is sore is the thigh area in which I had the C02 laser done. The rest of the areas have improved dramatically! I am sitting solidly on both butt-cheeks while writing this, barely on any pain medication whatsoever. I have not been able to sit like this in months. I feel so blessed to have the amazingly talented Dr. Alomari and his fabulous staff (shout-out to Cindy, Dr. Alomari's "right hand" as I call her, for always having been there for me through all of my various moods) working on my behalf, as I have now regained some sense of normalcy!

I will leave you guys with some pictures below from the past few days. Love to you all and thanks so much for all the kind wishes that have been coming my way; I could not have asked for better friends.

Right before the surgery Tuesday morning. Inside, I was freaking out but I tried my hardest to maintain my composure.

A picture of the C02 laser from a day ago. This is part of the area on my thigh that had the deep vesicles bleeding out. 

This is from yesterday, on my way home from the hospital, sitting comfortably in the car!

Finally, it seems as though I may be home to stay for a little bit (barring any complications). Here, I was snuggled up under a large blanket on my living-room couch. I fell asleep for a few hours right after I took this. Sleeping in the hospital is often hard for me to achieve, so I was utterly exhausted!

- 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!

Why I Have the Best Interventional Radiologist EVER

Hello everybody! Earlier this week, I had an unplanned (unless you count the day before as having planned...) surgery in which Dr. Alomari once again performed his unrivaled magic. For those of you unfamiliar with his name, he is an extremely talented interventional radiologist at Children's Hospital, Boston. For the past couple of months or so, my Klippel-impacted foot had become almost impossible to walk on. I was on blood thinners for it -Lovenox- but to no avail as the extreme swelling and pain ultimately remained. Dr. Alomari had ultrasounded the area not too long ago, and determined that a slew of clots were stuck within a veiny region that spread throughout my foot. Sometimes, he said, these cause no problems for patients pain wise; when this is the case, operation is not usually necessary. However, in my case where they were causing me a momentous amount of pain, there was nothing left to do but operate. The alternative would be living in great discomfort for the next several months while the situation resolved itself – no thanks!

A couple of days prior to the surgery

So, Dr. Alomari performed the surgery flawlessly. Essentially, what he did was made a tiny incision in my foot (I didn't even need any stitches, that's how small it is) and squeezed as many clots as he could out from there. Look below to see what he was able to get out! Pretty incredible, right?

My foot has already returned near back to its normal size previous to all of this clotting hoopla that erupted several months ago. I could not be more pleased by the results and this is just yet another testament to how grateful I am to have Dr. Alomari as one of my doctors. He is, without a doubt, the best of the best. - A

P.S. I will update soon with a picture of how my foot looks now!

Catching Up

So much to catch you guys up on! I have been inpatient since Tuesday, and since then have had two surgeries as well as a cellulitis flare-up occur within that time period. At the moment I am well, just in a great deal of pain due to my surgeries despite all of the pain medications I am on.

I don't want to write everything in one long post, so I will be spreading out the next few posts summarizing about all that has gone on throughout my time here the past several days. At this point in time, the surgical resident is saying I should be able to leave Monday – at the earliest, anyways. So naturally, I am going to try my hardest for Monday. I come from a close-knit family and not being able to go home with them at the end of the day is really tough on my heart. One of the hardest emotions to deal with while I'm here is that of homesickness/loneliness. 

Anyways, before I get too carried away on this post alone, I will leave you guys with a picture of me and my sister from when she visited the other night. I miss her a great deal and she always helps to cheer me up whenever I am in here. The picture below was taken in the recovery room just after my first operation.

Stay tuned, lots more to come! ; )

XOXO - A

I'm Back

Since I last updated, I was admitted to the hospital again because I was having a hard time recovering from the last infection. It was not the infected area that was hesitant in recuperating, but rather my body as a whole. I felt so incredibly weak and nauseous among other things. I was severely dehydrated and not eating. However, I am doing much better now and I figured I would kick off this post with a new picture of how my C02 lasered area healed (as some of you may recall I had this work done by Dr. Alomari in June).

Below are before pictures (just a couple of days after surgery) and now. I'll update more soon.

- A

Picture Update: Current Cellulitis/Healing from Surgery

Hey guys, so just a quick post showing some pictures of my leg at present.

To begin with, here is the infected area. The redness is not very prominent; rather, it is more of a muted pink rather than a fiery red. However, the pain is so incredibly rampant and relentless. There is also a great deal of swelling.

As far as the healing from my last surgery in which I had co2 laser done along with schlerotherapy and some other injections, here are some pictures:

There is still a fair amount of bleeding associated with these. - A

Lasered Area

During the last couple of admissions to the hospital, there has been a lot that has gone on in which will ultimately be for the better. Right now, I can barely walk to the bathroom without being in a momentous amount of pain from the co2 laser I had done with Dr. Alomari. I am really frustrated as it has been about two months since I've been able to really just live life as my version of "normal."

This is what the lasered area currently looks like. I'll write more soon! - A

Update, @ Children's

Hey everyone! I apologize as I have not posted in a bit. Since I last posted, I have been hospitalized at Children's Hospital for another cellulitis infection. I also had surgery yesterday with the incredibly talented Dr. Alomari. I have wanted to post while here, but was too fatigued to do so. Currently, I am writing this from my hospital bed at Children's. Because of yesterday's surgery, I am on pain medication which is making it feel as though the room is swaying back and forth. I promise to write more within the next couple of days. Below is a picture from when my sister visited me in the hospital the other night. I always miss her so badly whenever I am hospitalized. - A

Flashback pictures from one of my debulking surgeries. How far I have come! : ) Much love to every nurse, doctor, friend, patient and family who have gotten me through the years. - A