Update on Mental Health Petition for BCH

Hi lovelies! I have so much in which I want to share with you guys... unfortunately I will not be able to do it within this one post. However, this post is certainly a start, anyway!

Perhaps you remember the petition I initiated a few months back, the one where I wrote about the need for the VAC Clinic at Children's Hospital Boston to have an informed psychologist as part of their staff. As a well seasoned doctor once told me, 

“what good is it to have a patient who is physically healthy if they are so emotionally wrecked inside that they are unable to get out of bed in the morning?” 

Chronic illness and depression practically go hand in hand, but with proper treatment from trained professionals (as research demonstrates) one can indeed live a life engulfed in prosperity and jubilation.

The reality is, though, that the mental health portion of this condition is largely ignored. In result, a great deal of patients struggle with hefty amounts of depression, anxiety, and other disorders that can be utterly crippling. No one should have to live life that way, yet so many people with Klippel do as they are unable to find the proper help in regards to dealing with this condition (and, unfortunately, there is not much available). That is why I asked Boston Children's Hospital to step in and, well, step up.

I sent my petition to Dr. Fishman recently and was so touched by how responsive he was in regards to this matter. He agreed with my reasoning wholeheartedly, and was willing to help me fight for this cause, as he too believes it in very deeply. For those of you who have not met Dr. Fishman, I will tell you this much: he is a phenomenal human-being. Aside from being incredibly skilled as his work, he is a fabulous humanitarian that genuinely cares about the needs of other people.

I am not quite sure he would want you to tell me this, but he can get pretty emotional when it comes to his patients. At the last meeting, he cried when he saw images and what not of how much Sirolimus has helped various patients of his; I know this to be true because he told me when I ran into him the other day.

Back to the petition, though. Dr. Fishman sent out an email to an array hospital leaders. He also had a 45 minute meeting with the Chief of Psychiatry, David Demaso. Dr. Demaso now wants to have a meeting with me in regards to this matter, and is very receptive in helping to find a tangible solution to this problem.

Had Dr. Fishman not been so active in spreading the word about my petition (along with being incredibly supportive and giving me the courage to believe in myself), I would not have this astounding opportunity to meet with such a high-ranking Dr. within the psych. Department. Dr. Fishman and Dr. Demaso are incredibly willing to implement the change in which is so desperately needed in order to give VAC patients the best all-around care possible.

So, basically, change is immenent people! ( : This is fantastic news for patients/family members of patients of Vascular Anomalies patients at Children's Hospital Boston. I will keep you guys updated as to how my meeting with the highly-esteemed Dr. Demaso goes! I do not yet have an appointment set up with him but plan to make one tomorrow.

To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did

Below is a picture of Me and the lovely Dr. Fishman at the KT Conference approximately three years ago. Unfortunately my eyes are shut in it! : (

More soon, 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

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!

15 days inpatient

I am currently still inpatient at Children's Hospital Boston because of the ferocity of the cellulitis infection I endured several days ago. I believe today marks my fifteenth day here thus far - just from this one admission. Basically, I am dealing with a massive clot in my foot and a widespread cellulitis infection in my left buttock. Never before has an infection caused me this much pain for this amount of time. The longevity of this infection is what makes it unique from all the others ones I have had thus far. Dr. Fishman, who I saw today, said this is the worst infection I've had yet and it will take a long time to return to baseline.

However, I have made heaps of progress and should be going home any day now (with picc line in tow, of course). My blood pressure is stable as is my temperature, and we have gotten the pain under control. I am even starting to walk with ease all by myself, something in which I was not sure I'd be able to do for a long time again!

With that said, I still feel crummy overall; fatigue and pain are rampant throughout my body. I must say though, I a very proud of myself for coming out victorious despite the events that have occurred in the past couple of weeks. I know I will continue to progress and I look forward to catching a glimpse of summer once I am released from here.

Hope you all are well - XOXO
-A

Let's talk about how much I utterly adore Dr. Fishman from Children's Hospital Boston. He just left my room a few minutes ago and I cannot help but feel incredibly beholden by him. He knows his material, and his display of confidence but lack of cockiness is quite appealing when it comes to discussing elaborate medical procedures. As the team of doctor's were leaving my room, I was sure to thank all of them profusely. Then, however, came my farewell to Dr. Fishman. "Dr. Fishman," I said, "never a pleasure." We all laughed. He knows I am absolutely kidding, and that I am very grateful for all of the work and care in which he has provided for me throughout the years. I love that I can banter back and forth with each and everyone of my doctors! When you have known them for so long, they become friendly familiar faces in a strange way, Ultimately, though, he knows I am grateful for his expertise and the time and work he has dedicated to me as a patient.
 By the way, in case you were wondering, he does not have a house in the Hamptons to kick back at during the summer season; I would know because I already asked to swim in the pool. ; ) Overstepping boundaries much? Yeah, well, I'm notorious for that. Not that a man of his magnitude would even have the time for that. During my last hospital stay, he showed me the quantity of emails he had received via phone since the ten minutes he had been in my room. There had to have been at least 40, no lie. I don't know how he does it, but he does it and he does it well. Not only does he manage work, but he has a wife and two children.

I should get to go home tomorrow. This does not surprise me in the least bit as this infection was quite tame from the start. Systemic symptoms were minimal, as was the pain. The cardinal symptom was indeed the redness in the lower left limb. However, I came to the emergency room shortly after noticing the redness so there was little time for the infection to progress into a more developed stage. With potential infections, you NEVER want to wait around. Supposedly, as recited at a presentation at the conference in Mayo Clinic this past summer, somebody died because he waited too long to get help for the infection.

I'll write more later because I am so fatigued right now as I got no sleep last night. -A

Room view from the kitchen