Confessions

I was hospitalized this past week for a Cellulitis infection. Although, I do not feel as though I can call it that accurately without adding there was some controversy as to what it actually was from the Klippel expert himself, Dr. Fishman.

He will tell you he “simply doesn't know” in terms of whether or not it was a Klippel valve bleeding into another nor an infection. All I know is that I was on the phone with the VAC Clinic Friday with a dear VAC nurse I have known for quite some time now. She told me if it started to spread (the legion) or (got worse) than I could page the surgeon on call or come in. Unfortunately, things progressed in an unfavorable manner and the red, aching legions spread rampantly Friday night. I asked every person I met in the emergency room that night whether or not they were associated with Dr. Fishman and if they were, whether or not they deemed this an infection worthy of antibiotics. None of them hesitated in saying yes, we need you admitted and to treat this “infection.”

I escaped the hospital scene Christmas Eve and was elated to leave the downtrodden venue. There was one goodbye I did not say upon leaving though, it was too hard and I could not submit myself to it right then at an emotional level.

While there, I met a girl who was a Klippel Patient struggling for her life. We had contact prior, but this was our first time having physical contact. She still is inpatient, actually, and tells me she will never be released... One of my least favorite nurses I've ever had would not allow me to go visit my ailing friend a mere three floors beneath mine. Generally, I respect nurses and their word and would not forbid it. I explained to her the urgency of the situation and still, she resisted understanding my plight in a seemingly spiteful manner. She kept saying there was a person above her in the system she had to ask, as though she were referring to some vague deity... Nurses prior to her and nurses after her would instantaneously respond yes when I would ask to visit the ICU to see my sickly friend, but this one was different... Perhaps she lacked emotional decorum so vital to someone in her profession that I should feel bad for her... I hope to never have her again, she was uncouth in her actions and lacked sympathy.

I kept asking her, and finally she told me that the answer was no, I was to forget about it. I phoned my friend and spoke with her sister and told her what my nurse had said. Still, that would not be enough to contain me. Well, this nurse had 3 or 4 patients to deal with simultaneously and not enough time nor resources to keep me on lock-down. So, I snuck down to ICU to see my friend where I was greeted by my friend's ICU nurse that day. She was so kind that I had to disclose to her what me being there in that moment really entailed; lies, sneaking off my floor, and a seemingly spiteful nurse who would probably kill me if she found out where I was. 

I prepared to get a good verbal lashing in return, but the opposite happened, much to my surprise. “Thank you,” her nurse said. “Thank you for being here. She got so excited when she found out you were coming.” We shared a smile and she helped me conjecture a plan in case I were to be caught by my nurse; I could not believe the lengths she would go to in order to help me see my friend! Her heart was certainly in the right place, and she knew that treating my friend did not just need to happen in a medicinal manner... That's what separates a nurse from a good nurse, though, and I am proud that I did not let my vile nurse that day hinder my efforts. I never got caught, by the way. ( = Normally I would not brag about rule breaking but this is indeed an exception to the rule!

She slipped me into the plastic yellow protective gear one must wear while visiting a friend who is on precautions with outsiders. I was well-acquainted with this gear as usually I was the one on contact precautions. I gladly slipped into the yellow suit, mask, and gloves for a chance to see my friend yet again. She was unable to move, and her breathing was as unsteady as could be. In between breathes, she managed to speak her depression to me. She told me that “she was planning her own funeral” and burst into an explosion of tears. Where words failed, my hand didn't. I immediately reached out my hand for hers, and latched on tight. I don't know if there is much else in which I am willing to share of that moment...but damn, at that point you realize there is more at play here in life; there is more than that dress you want but can't afford, than the number of tiles on the ceiling, than how many pounds you lost in the weeks prior... I have had that realization prior, but sometimes the feeling wears off and one is reminded again...

Not many people will understand it, and seeing someone so close to their end demise (for me) is much different than coming back from those times where I almost died. Perhaps because I am at a more alert level...

For any reading who question the validity of this story, I can easily tell you the patient's name and where to find her/her family online but I won't. The Doctor's at Children's would know that at the very least I am speaking of a real patient for I spoke/wrote to them about her while inpatient and they are the ones treating her. I was, however, met with blank stares and non-relies as they are under confidentiality when I tried to ask what more they could do for her. She is a very difficult case for them right now. And, of course, the nurses reading it would know what happened. I am not worried about the validity of my story, though, as much as I am for the patient's well-being. Notice how I emit details regarding people's appearance...for my goal is not to cast trouble or assign blame upon anyone. Her fate looks bleak and if there is a higher power, I call on him, her, it to heal her.

These are my confessions, for now. And I'm not sorry. I would do it all over again, for sometimes breaking the rules means being a better human-being and those dictating them simply cannot empathize with that.

I'm home, albeit in a ton of pain physically and emotionally. I feel so trapped, which is why I write. When I write, I have a chance to tell my truth, and perhaps it can help people to understand me better. I still believe that some of the best stories, though, are the ones untold...or the ones that are happening between the lines.

In case you have not yet come to figure this out, this blog is greatly uneven in content... I write very little about Klippel itself and more about the emotional journey it has led me on. KissesforKTS is more than just about garnering awareness of Klippel itself, but all of the components that come attached with it....

I will post some pictures of the hospitalization in my next post.

LOVE to you all,

Ari

Inpatient for Cellulitis

Hi everyone - unfortunately I am writing this post from my hospital bed on 10 NW at CHB as I was admitted for a cellulitis infection. Last night, I took a spontaneous nap. Upon awakening, I had this familiar, horrible pain radiating from deep in my left buttock. I knew this pain well, and therefore had mom take me to the emergency room immediately. I was still taking Keflex 1000 mg daily - but apparently that was not good enough for my body. This morning I had a 101 fever, chills. severe pain in both my left buttock and thigh (It spread down there throughout the course of the night), and redness. At present, I am on 4mg of Morphine every two hours which I have been told is a hefty dosage. Below is a picture I took earlier today of the area. Please pardon the fact that it's of my butt haha. From what I have been told, it has gotten redder since this picture had been taken, and of course I had to take it with my lousy blackberry camera... - 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

We'll be Alright

At that point, I was feeling as though everything was so utterly hopeless. “I swear to God if you guys don't pull the picc line out I'll just pull it myself...,” I told the emergency room nurse. At that time, there was talk of the picc line possibly being infected. We (as in me, my mom and the team) really didn't know yet, but were grappling with a few different ideas as to what was wrong with me. However, having just come out of the hospital three days ago as an inpatient for my biggest infection thus far, it wasn't too hard to presume I was still healing.

Ultimately, that's all it was. My body was still incredibly dehydrated, and my blood pressure low. Eating was almost nonexistent as the nausea was too intense. The infected area still held a great deal of hurt. I was also still grappling with a clot that extended from the back of my ankle to my toes (and still am, unfortunately).

At that point in time, I would be lying if I said I wasn't suicidal because I absolutely was. “Do you struggle with depression, by any chance,” the ER nurse asked me. My holding room sheets and pillow were soaked from my relentless crying, and it seemed as though the tears massaging my face were limitless. Everything felt so incredibly deranged and hopeless, and the future seemed bleak at best.

It's not the first time I have felt like that; far from it, in fact. However, being sick just exasperates those feelings for me, so I have found. I'd be lying if I told you that each and every day wasn't some kind of an emotional struggle at present, although I do my best to hide it around many. It is, though, but I am still here and ultimately that's what counts. And I am still receiving help, even though that means continuously letting my guard down simultaneously to people, from those in which I know very well to those who are complete strangers. I know I am far from the only one who has gone through such a struggle; the reality is that it sucks, plain and simple. But if I had to give anyone advice, (who is in a similar situation) it would be to open up to the right people around you about how miserable you are feeling. Depression wants to isolate you from people, to have you keep your feelings internalized which only gives the illness more ammunition to hurt you. Speak up and seek help if needed and gain back the upper hand! Sometimes, I look up at the sky and clouds and realize that there is something out there much bigger than I, and that there are things happening to me for reasons in which I do not yet know, for reasons in which I am not yet meant to know. Keep up the fight, and in the end I think you'll see we will all, indeed, be alright. - 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

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

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

Physical Therapy

Hey everyone. So there has been no improvement in my foot yet; therefore, it has been determined the clyndamycin antibiotic is not working. In the meantime, I am being kept comfortable with a heavy dosage of pain medicine. Today, I started physical therapy. Even with the pain medicine in effect, I am having a hard time walking on my foot and therefore I need to be taught effective methods for maneuvering my way around until the foot starts to heal. The physical therapist came in and basically just taught me how to use the walker from my bed to the bathroom. It is extremely simple; just move the walker, take a step with your left foot, and then your right one follows. Below is a picture of me in progress with the physical therapist. - 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

Back in Hospital

Hey guys - I am back at Children's Hospital Boston due to another cellulitis infection. This one is primarily in my foot region. Pain wise, it has been one of the worst ones I've had in a while. As far as systemic symptoms are concerned, I have been experiencing nausea, tiredness, overall fatigue and low-grade temperatures but nothing striking. For me, each infection has something that stands out about it. For example, with some infections it is the incredibly fierce crayola redness that imparts upon the infected area. For others, it is how sick I got systemically. For this one, it is the relentless pain that is rampant throughout the foot and ankle area. I've been here a day now, and I still cannot bear any weight on it.  It is swollen and red, although the redness is not especially vibrant by any means.

I am being treated on IV clyndamycin and am being given morphine for pain. One thing in which I have learned, however, is that IV pain medications do not last as long as the oral ones (or so I have been told). Therefore, given the intensity of the pain in which I am experiencing, they may switch me over to oral morphine.

Above is a picture from me in the ER last night. As usual, all of the nurses have been so incredibly friendly and helpful. One of my nurses, Christina from 10 NW, is so sweet and friendly to talk to! I had her last during my last hospital trip as well. A good nurse can undoubtedly make a huge impact - so never forget to smile and say thank you! : ) - A

The Quick Onset of My Infections

An example of how quickly my infections come on:

I am in my room putting on my makeup; I am not quite sure where I would head out to that night but the evening was young and so was I.

As I sit in front of the mirror primping myself and talking to my sister, I looked down at my foot and recognized a fiery red section of my skin. I felt a shot of adrenaline rush throughout the entirety of my body; here comes the anxiety. Most of us with KTS know the difference between the typical purple hues that are typical of normal KTS criteria as opposed to the crayola red ones. So, as I gazed at it, I am thinking this can go one of two ways: the skin will stay as is and no other symptoms will come along. Or, it would progress and I would be heading to the ER that night at Children's Hospital Boston.

Within the next hour or so, my current state of health declined exponentially. My foot was now in an incredible amount of pain, and I was deteriorating systemically. This was not atypical behavior of my cellulitis infections; most come on fast and strong. Mind you, this was all while being on oral Avelox for a prolonged period of time. I was taking it daily, and with that in mind no infection should have cropped up. Yet, it did, and next thing I know I was phoning my mom telling her that I needed to leave for the hospital as soon as possible.

And so we went. I was already depressed prior to going there, but once I was actually there and admitted I felt all the more horrid. I felt stuck in a repeating cycle that never seemed to end. It was as though I was spinning round and round on a merry-go-round and was powerless to get off. I know that I am not the only chronic illness patient that feels this way; I have talked to many others who feel similarly to I. Sometimes, you just have to be strong and push through despite whatever the odds may be, no matter how hopeless things may seem. I plan to write more tomorrow.

Are you a chronic illness patient? Do you ever feel stuck in "the cycle?" What advice would you offer to others going through the same thing?

Hope you are more than well, A

I'm writing this from the emergency room at CHB because of cellulitis. Systemically, I am nothing like my last infection (thankfully). I actually "discovered" this infection while in the shower...I look and all of a sudden I see a red area on the lower portion of my leg. 10 minutes later, still there. Shower stopped. & Well, that's basically how/why I am here.

The ER was so busy when we first got here!

 Supposedly a room is ready in 10NW so we should be leaving the emergency room soon. Everyone has been so nice and I love not having to explain what KTS is (like some of my other KTS colleagues). I feel for my colleagues who have to try to explain their condition while getting better simultaneously.... I don't know how they do it. I will not be here long because of how calm in nature this infection is. Hope you all are well. - A

P.S. They are expanding the emergency room area here to include more rooms (finally)!

Here is what I posted as my FB status earlier: - A

Pretty unhappy that today is the first day off my antibiotic since sepsis. Normally they would keep a Klippel patient prone to infections on a small dosage of antibiotics every day to keep them from forming but I can't be because I'm allergic to so many antibiotics already. I remember pleading with ID (a few weeks ago) and they kept saying its not even a possibility to keep me on a low daily dosage. But now I'm back to living with the anxiety of getting another infection each and every hour. For all I know I could be good for a year but it doesn't really matter because I won't be able to help but worry anyhow. 

Update 2 on Sepsis

This infection has taken so much out of me; when I stand, I feel like I need to sit down because I am so fatigued. I am incredibly thirsty all of the time so I am constantly drinking fluids. Aside from that, the area is still somewhat sore. I still have ways to go before reaching my baseline, but I am so much better than I initially was in the hospital, so I'm grateful for that.

I've come a long way since the hospital

I still have to monitor my temperature a lot despite being on Avelox 400 mg daily (for a grand total of three weeks). The reason for this is to make sure I am not breaking through the medicine. So far I have remained lucky and my temperature has remained at baseline.

I woke up today to find out about the horrific tragedy that happened approximately 30 minutes from my house, the Boston Marathon bombings. To all injured and impacted, my deepest condolences. Boston is a strong city with the best hospitals, so at least the injured were close to the best care possible. Still, I cannot even imagine having been impacted by such a horrible ordeal. May we all keep the victims in our thoughts and prayers.

Hospital

Hey guys! Right now I am in the hospital for a cellulitis infection. Out of all the infections I've had, this has been one of the more serious ones. Systemically, I got sicker than usual. When the infection was initially coming on, it felt as though my body was being smothered in ice cubes. I was so cold I couldn't take it! My body was shaking uncontrollably and no amount of blankets/heat seemed to help.

I'll write more later, but just wanted to check in for now. My condition is stabilized and the infection is responding to two different IV medications. - A

Hi everyone,
I got so much positive feedback on my last post and wanted to express my sincere gratitude. It's such a priveledge to live in an age in which I have this kind of platform in order to raise awareness for Klippel-Trenaunay Syndrome. Social media is truly such a blessing, especially for us KT Patients since there are so few of us in the world. For those of you who don't know, we have literally been named one of the rarest diseases by some medical outlets (Yes, we are an extremely rare breed!).

I am taking this time to continue to recover from my cellulitis infection before I go back to college full-time. My infection is getting better as opposed to worse so I am very fortunate the 400 mg/daily of Avelox has worked wonders yet again! I hope you all are well! - A

So the redness of the initial infection spot (the thigh) has spread its way up to the left side (KTS inpacted) buttock. The redness is the same of all my typical cellulitis infections, but there is no tenderness there as of right now.

Systematically, I still have a low grade fever and just feel tired/weak. However, that is to be expected with these kind of ordeals.

For now, I just continue on oral antibiotics unless things take a sharp turn for the worst.

So, some of you may be wondering, why do some (of my) infections require hospitalization while others do not? I will try my best to make this as simplistic as possible.
- presence of acute systematic symptoms: I have had fevers as high as 105 when I have gotten these cellulitis infections; anything over 101 typically insinuates I need the emergency room. Some systematic symptoms (temperature aside) include vomiting, extreme dizziness, intolerable pain in infected area, inability to stand, sweating profusely, having the chills, massive headaches, being dehydrated, etc.. Those are some of the main ones that have come to my mind.

Fortunately, I have not been that kind of sick since June. With this one, I just have a little headache and, once again, a low grade fever. I am incredibly sore but it does not feel like I have knives being jabbed into my thigh (and thank god for that).

I am also in extremely close proximity to the hospital. If things do go sour, it is approximately a half hour from here to the emergency room.

I am lucky, and as always, will heal.
I start school in ten days, however, so hopefully it will be sooner rather than later! - A

Hey all,
I'm infected again; for those of you who aren't all too familiar with KTS, cellulitis infections can be a somewhat common occurrence for its patients.
Last night before bed, I started to feel a pain in my left (aka KTS impacted) thigh. It wasn't horrific enough to do anything about it at that moment in time, so I decided to sleep and see what the morning had to bring. When I woke up, the pain was extremely tender and I knew had to take some course of action. So, I called my mom at work and we went from there.

Systemically, I was not far advanced at all which has kept me out of the hospital for this evening at the very least. I am starting oral dosage Avelox 400 mg daily and seeing how that impacts the area overnight.
For now I am just incredibly sore and fatigued, so all I can do is just sit here and await for my body to repair itself in due time.

I feel too sore to take pictures right now, but I will update tomorrow with some.

Peace and love (always),
- A

I am healing so incredibly well - one thing in which I have always said about my body is that it is quick to get sick but always responds to treatment in a rapid manner; the sight of the infection looks substantially better. That's the thing with KTS  though - everything can look amazing on the outside while there is still a momentous amount of trouble lurking beneath the surface. This is why it is vital to always finish your medication down to the very last pill - you'd be surprised how quickly the seemingly gone infection can appear yet again (I have learned this the hard way).

A couple of pictures from the holidays:

Forget about all of the presents - this is the stuff that truly matters in life.

- A

I looked down at my leg and thought, is this really happening five days before Christmas?

It was, though, and now I had to decide what to do about it and fast. Cellulitis infections of this nature spread rapidly.

Christmas in the hospital didn't mean much to me, but I couldn't stomach the thought of my supportive family spending it there, they deserved to have a nice and relaxing holiday.

& so I went into my mom's medicine drawer and snuck out the emergency antibiotics she had on hand; I've been told in the past by numerous doctors to never take one without consent, but I couldn't be talked out of this one. This is by far one of the most rebellious things I've done thus far (utterly pathetic, I know).

So, by getting the pill in me at the onset of the infection, I was able to prevent systematic symptoms from furthering and an infection from spreading.

& now, I am writing this from home, as opposed to a stuffy hospital room with wires attached to me.

Sometimes, doing the wrong thing turns out to be alright.