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

Appointment at Children's Hospital Boston with Quick Video

Here is a brief video I shot the other day while making my way up to the IR clinic at Children's the other day with Dr. Alomari. Being at the hospital (for the first time since my month long June admission) ignited a lot of vile emotions for me; despite knowing I was safe and my condition stable, I could not stop shaking throughout the several hours I was there. I will be updating more soon about the appointment and what is to come for me in the near future! Hope you all are 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

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

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

Carry On

Hospital flashbacks are nothing new to me; in fact, I have consistently had them since the tender age of 7 (I am now on the verge of turning 23). These horrific glances of the past are a part of my PSTD in which I have had for years now due to medical trauma I've endured since the beginning of my life. Sometimes, it's a mere smell that takes me back to that certain time in the emergency room. Other times, it may simply be a shirt's colored hue that reminds me of the one in which I was wearing when I had become ill yet again. Moving on from the past can be so incredibly hard, especially when what has happened in the past is likely to occur again within the future.

However, I think with chronic conditions like these it is important to shovel on through each day despite an impending sense of doom or you'll never experience the sweeter, more blissful side of life. There is indeed one, that much I continue to believe. With depression and PSTD, it is so much easier to remember the bad as it never seems to be far from one's stream of consciousness. However, you have to fight hard to remember the good. It doesn't really seem quite fair, does it? Why do the bad thoughts and flashbacks come so frequently without any merit, as opposed to the good ones that need to be dug up from the bottom of your brain to even be remembered at all? All I know is that pushing to remember the good times is worth it .

Right now, I sit in a chilly room with half a foot of snow outside my door. Today, we're supposed to get another foot of snow and I likely will not be leaving this room anytime soon. Today was also the date in which I had my appointment in regards to me possibly debulking my ankle with Dr. Fishman, Alomari and Spencer. Now that one doctor has had to understandably so cancel (Spencer, due to the storm), it would be rather pointless to attend as each play a vital role in this potential procedure. Without input from one, I am unable to move forward in making this decision. So, for now, I am back to waiting in regards to what my future holds in regards to the debulking surgery. In the meantime, I have not felt that well in spite of me taking oral antibiotics daily. Yesterday, I came home from my Nana's to find a new angry red spot on my leg, although it has lessened greatly in pigmentation today. However, I still feel so week and down-trodden from my last hospitalization. I know that despite the new calendar year, my anatomy is the same and I will experience frequent hospitalizations at some point in the future. Whenever I remember the numbing pain that accompanies me during infections or following a surgery, I cannot help but shudder due to fear.

 But you know what else I remember? I remember the turquoise colored water and sense of tranquility that fell upon me that day as I lay peacefully upon my raft in that Caribbean water. I remember feeling like one with the ocean, and feeling as though the world was my friend as the sun beamed down upon my 18-year-old sun-kissed skin. It was the ultimate feeling of bliss. Had I not pushed through all of the medical trauma and depression, I would have never gotten to experience that feeling of euphoria. I guess my point is this: push through the hard times in order to get to the good. I am sure that many medical obstacles are to come my way in 2014, but I am determined to fight through them in order to experience the gentler side of life. It's like the old saying: If you want the sunshine, you have to put up with the rain.

 Happy New Year everyone, and may this year provide you with the strength and courage you need in order to battle your own obstacles, whatever they may be. Believe in yourself, and never forget that you are indeed a warrior who is capable of more than you may even know.

 Lots of love, Arianna

Continued Antibiotics, etc.

Hey everyone! I know I have not written in a bit, much to my deepest regret. Access to a fully functioning computer still proves to be challenging at this point, but I will have a new one by Christmas!

I have been out of the hospital since the end of September now and it has been such a delightful treat. Just earlier today, I spoke with one of the VAC nurses Erin in regards to my antibiotic situation. Initially, upon coming home, I was taking 2000 mg of cephalexin daily (twice a day). We then lowered it to 1000 mg of cephalexin daily and I was due to finish it today. However, due to my unchallenged success on these oral dosages, my doctors have made the decision to keep me on it for another two months as a prophylactic. I was quite pleased with this decision as I have my sister's wedding towards the end of December. The medicine does make me feel slightly sick, but probiotics can help counter this.

As far as debulking my ankle is concerned, I am planning to move forward with this procedure. However, nothing will be finalized until I meet with Dr. Spencer, Dr. Alomari, and Dr. Fishman on January 3^rd. 

I am still dealing with a great deal of anxiety and depression, however am working very hard to make it through each day and to be at least somewhat productive. The hardest part of being out of the hospital is readjusting to at home life while trying to maintain my health and reestablish normal daily habits.

Hope to update soon!

- Arianna

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

In A Moment's Notice (Part 1)

When I last wrote, things were seemingly getting better; albeit slowly. Still, everything was being managed just fine and the infection appeared to be responding well to intravenous treatment of antibiotic. Then, I woke up (while still inpatient) with the chills; it was previously planned I would go home that day... prior to the events that were unfolding at a moment's notice. Suddenly, without even the slightest of warning, I was wandering the vast mountains of Antarctica in nothing but a tank top and shorts. There were not enough blankets in the world to contain the numbing cold that occupied every crevice of my body. My temperature shot up to just under 104. It seemed the infection had progressed, and there was certainly no question now that it had entered my bloodstream. The usual people were involved in treating me, including Dr. Fishman, Dr. Alomari, infectious diseases and the allergists.

The next few days were utter hell as we fought to control the infection. I couldn't get out of bed to use the bathroom; when I stood up, it felt as though I was in a wind-tunnel. Standing would simply not suffice, for I could not maintain balance of any sort. Bed pans were a staple throughout this time period. Even getting my shivering body up on the bed pan was a challenge in itself, especially given where the infection was located (my back thigh). My energy was tossed completely, and lifting my head was something that seemed to be a tremendous feat.

The only time I would start to feel any relief was when the oxicodone, morphine,and moltrin were administered and started to kick in. Eventually, though, my fever would progress back to its just under 104 state, and the unrelenting chills would return along with the dizziness, nausea, intense headache, all over achi-ness, etc. Not to mention the thigh infection itself... My body wasn't done surprising me yet, however. I woke up the following day with two huge clots, one in each arm. They as well were infected. I wish I was joking. No doctor had ever seen anything like it before and are still having difficulty grasping the concept of how this may have occurred.

When people see my leg, they think it is just my leg that is impacted by this lovely condition we call Klippel-Trenaunay Syndrome. Fair enough, but for those of us who know better, we know that is far from the truth. We know it can get into our bloodstream and cause sepsis, travel to other realms of the body and wreak utter havoc. We know better, unfortunately.

I returned home from the hospital yesterday afternoon and will be writing a lot more about my time during my ten day stay. My KTS family as always pulled through for me and were the most incredible support group I could have asked for. Never could I have imagined people with such endearing hearts and souls being there for me day and night, that which I am incredibly grateful for. Think of this as somewhat of an introductory post.

My KT loves, whether you are a family member of a patient or a patient yourself, may you be at peace right now. If you are not, may your pain soon subside. May you know you are not alone and have a bundle of people in your corner at all times, no matter how isolated you may feel from the outside world at any given moment.

Love always,

Arianna

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!

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

UPDATE!

Hey all. So very many things have happened since I last had the chance to write. I will do my best to summarize the details without making this post too lengthy.

1) We found out that the supposed infection was actually a blood clot. Dr. Alomari came up to my room with his ultrasound machine and we found that there is a large superficial clot that extends in a vein from the bottom of my toes all the way to the back ankle. I was so relieved - as was everyone else. Because this was a clot and not an infection, it made sense that I hadn't been responding to IV Cylndamycin. HOWEVER, the bad news is that I will not be walking anytime soon in the given area. I got pretty emotional about that, as it may take a month until I was able to put weight on it and walk again.

2)Then, yesterday morning, I woke up terribly ill. I was shaking out of control, felt freezing, was nauseous, had cramped legs, and a slew of other volatile symptoms. My buttocks area was so sore and throbbing, and I knew this feeling all too well. "Maybe it's because you have yet to go pee in a while," the nurse said. Inside, I knew that wasn't the case. However, I humored her and went anyways, and we then preceded to take my temperature. It was 104.  Next thing I know crowds of doctors were coming in and out repeatedly. I was so incredibly out of it that I could barely make out faces and my memory was absolutely horrid. Right away, the surgical team started me on Vanclomycin and Avelox intravenously. We continued my pain medicine regime and had decided to see how things go throughout the day. By midday, my temperature was under control at about 101 degrees. However, at night, a huge large red area formed on my thigh which was not surprising to me. Sometimes with my celllulitis infections, the redness does not reveal itself until much later on.

3) I woke up this morning feeling still incredibly sick, except this time my buttock area was way more sore than it had been yesterday or even last night! I asked the nurse to take my temperature, which read 103. I find this worrying because even though it has gone down a degree, it is still so incredibly painful. Not to mention I am on pain medicine and the two different IV antibiotics had been running for just about 24 hours steady.
So, the nurse just paged surgery again and gave me some Motrin to try and bring the fever down. For now, I need to wait to see how things play out as the doctors figure out a plan as this one may not be aggressive enough.

Below is a picture of my younger sister and I from when she came to visit me last night. Seeing her is always such  a mood booster! There are also a couple of pictures of my mom, dad, and nana. I don't know how I would be getting through any of this without their support. Never underestimate a good support group. Situations like these make me realize just how incredibly grateful I am for all o my magnificent family and friends. - 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