Arianna Faro - One Limp At A Time Klippel-Trenaunay Syndrome

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Arianna Faro - One Limp At A Time Klippel-Trenaunay Syndrome

A 30-year-old who lives with one of the rarest conditions, Klippel-Trenaunay Syndrome email at ariannahfaro@gmail.com Hey everyone!

I'm a 23-year-old college student who was born with KTS (Klippel Trenaunay Syndrome). At 18, I was hit really hard with anxiety and depression. I am fortunate to have had support from amazing professionals and family during that time.I want those who are also struggling with chronic/mental illness to know there is indeed hope for them, which is why I am majoring in psychology at Merrimack College. ( : In terms of this page, I hope to garner awareness as to what Klippel is and the emotional toll it can have on its patients/family members. I am treated by the outstanding Vascular Anomalies team at Children's Hospital Boston. View my complete profile

18/11/2025

Hi guys ♡

I sent over a picture of how much I bled this past Friday night to my IR doctor/NP a couple of nights ago.. My Mom had wisely taken a picture of the scene once the situation was under control. In the image, there were literally pools of blood on my bedroom rug, one extremely large in size. When they saw how much I had bled out, my Dr. wanted to see me in person himself (originally I was coming in to see my NP for a deep cleanse of the wounds). After he finished up with his 2 cases of the day, he came and helped work on the wounds for over 2 hours to try and halt the bleeding. As usual, he shoots, he scores. I have barely had any bleeding since last night, a bit of oozing but nothing anywhere near as voluminous as the past week and a half. I am in a great deal of pain today, but it's so beyond worth it to have piece of mind that everything is going to be ok. I've been so scared for the past couple of weeks and have barely been able to sleep. Last night, however, I slept with extreme ease. ♡
However, that is not to say the problem is eradicated; the large wounds still have some healing to do, and there is still a chance a bleed out could happen at anytime. Because of this, I have to lay low. If I go out somewhere, I need to have someone with me at all times.
Before my Dr. worked on me last night, I had bloodwork done to test my hemoglobin. It is currently an 8.6, which means I have dropped a full 2 points in just 2 weeks (it was last tested on the day I was discharged from the hospital). I feel so incredibly week and like the life has been sucked out of me when I stand, but I am stubborn and am trying to push myself to be as active as my body will alow. My IR team wants me to reach out to my P*P to see if she can set up an iron or blood transfusion (which I am literally doing as soon as I finish writing this).
Between the low hemoglobin, the residual pain from the operation itself, and the discomfort stemming from yesterday's work, I feel like I have been hit by a bus. In times like these, I practice gratitude and think of all of the immense blessings in my life. There is so much good, and that in itself counts for so much more than my temporal struggles. To be alive to feel pain is a blessing in itself, so I am grateful for that.
I am also grateful to have the most amazing doctor (along with his NP) that truly care; my doctor was kind enough to do this for me after already having done 2 long procedures thay day. I admire his work ethic greatly.
Also, I had Mom and Dad with me every step of the way yesterday, as per usual. I don't even want to imagine what going through any of this without them would be like. They are my since day 1 crew. ♡ Anyway, for now, I am going to make the best out of life and enjoy each day I am fortunate enough to inhabit this earth.

Below are some pictures from yesterday. I am trying to document as much of my journey on here as possible. I think it is important to show both the highs and lows of having a chronic illness.

Thank you so much for all of your well wishes and for the perpetual support. ♡

All my love,
Ari

17/11/2025

Hey guys,
Hours after my last post 2 days ago, I experienced my worst bleed yet. I ran an errand about 7 minutes away from home, and when I got home I started bleeding out profusely through my pants; there were literally big puddles of blood all over my rug/floor. Luckily my Mom and Dad were one room over and they immediately sprung into action. Dad grabbed supplies while Mom held tight compression on the surgical wound for about half an hour. I've had many scary moments in my life thus far, and this without a doubt ranks as one of the top ones.
Mom and Dad wanted me to consider an ambulance, but I said no as my town's fire chief and medical director are refusing to transport me to Children's or Brigham and Women's Hospital. They are blaming it on "port of entry", but Massachusetts says there are supposed to be exceptions for medically complex patients who need specialized care. I have provided four different provider letters stating that it is imperative that I be taken to one of those hospitals in case of a Klippel emergency, but apparently they think they know better than all of my doctors as to where I should be taken. Honestly, the whole situation disgusts me, and I've had a source close to the situation tell me it's about money.

Anyway, that was my worst bleed yet thus far after one of these operations, and it has really shaken me to my core. My hemoglobin was already low when I left the hospital, and now I am certain that it has gone down even more; since the bleed the other night, I've had the typical oozing and a couple of more stronger bleeds, but thankfully not on the same level as Friday's.

I am supposed to be going to Children's in the morning to meet with my NP (who I adore and completely trust, and I know I am always in the best of hands with her) to have her help do a deep clean of the surgical wounds. However, I am petrified that it may provoke even more bleedoits.
I can't go anywhere other than the doctors rigjt now because if one of these bleeds happens in person I will undoubtedly have an ambulance called on me, and God knows what hospital I will end up at.. because KTS is so rare, a hospital without KT specialists in it will have no idea what to do with me.

Everything is just a mess right now, I feel like I am going to implode. I feel so weak and just mentally exhausted from worrying, but I am going to continue to trust the process.

Below is a picture of me, my mom, and nephew during a video chat earlier tonight. No matter what I am going through, Billy always manages to bring huge smiles to my face.

Sending everyone lots of love and light,
Ari

14/11/2025

I'm feeling quite frustrated today, as it has been another day of bleeds; everytime one area seems to calm down, another area errupts = X I keep having to remind myself that I just need to be patient.

The wounds are also not supposed to have the dark matter around them. I am cleansing them as I have been instructed to, but I still can't seem to get rid of the darkness.

A couple of days after I got discharged, a visiting nurse came by (who I absolutely adore, I have had her prior). I told her I was cleansing the wounds by myself, so I got discharged. I am now going to see if I can get a visiting nurse to come back out and care for them, as I am at a loss and am not quite sure what else I can do.. clearly whatever I am doing is not working. I'm feeling so discouraged today.

The wounds pictured are not the one that has been bleeding out today, that part of my leg is currently wrapped.

13/11/2025

Hi guys ♡

I got home from the hospital 8 days ago. I am still having a lot of pain and bleeding from the surgical wounds.
On Monday, I was in the kitchen talking with my parents. I was about to try and go run an errand by myself. The first time I got out of the house (other than the hospita)l was this past Sunday, when I was 14 days post op. I was weaned off of all of my acute pain medication and was yearning to drive around for a bit while listening to music and do a return I had.
Anyway, as I went to say goodbye to my Mom and Dad, I felt my pant leg getting wet; I looked down and there was blood everywhere. I tell my Mom to look, and she actually screamed upon seeing it. I pulled my pant leg down to see what was happening, and one of the surgical wounds on my birthmark had blood gushing out. I was petrified and was not sure if I needed emergency services, but I told my parents that I wanted to try compression first. I sat down on the kitchen floor while my parents scurried around the house, grabbing supplies for me to hold compression and wrap the wound. After holding tight compression for 10 minutes, the bleeding slowed way down, and Mom wrapped the area for me.

About an hour later, I was in my parent's room talking to my Mom, and blood started gushing out through the compression bandage that we had put on. We did the same exact thing as the first time, which was basically just to hold tight compression for several minutes and then bandage the area again.

I called my IR NP after it happened the first time, and she assured me it is a normal part of the healing process.
The wounds have been leaking out blood since I had the operation, which I know is normal from when I had the operation prior. However, I have never had such intense bleeding with such a heavy flow from any of the wounds I had before.
My house literally looked like a crime scene that day. I was really shaken up both during and after, as was Mom and Dad. My poor Mom actually had a panic attack directly after.
I felt really weak and dehydrated and ended up sleeping for about 6 hours afterward. Needless to say, I did not make it out of the house that day.
Since then, I have left the house a bit, but I bring my walker, towel, and compression pads with me just in case of an emergency. Mentally and emotionally, I have needed to get out so badly.. I've been struggling with heightened depression since being from the hospital after those 9 agonizing days.
I want to return to normalcy and have my independence back so badly, yet I am still so limited in terms of what I can do/handle. I feel very deconditioned in terms of my stamina, so I am trying to move around as much as possible. I got out for a bit with my Mom earlier today, and even with my walker, I felt so systemically weak, and it was hard to focus due to my pain level. I'm extremely stubborn and always try to push myself as much as possible, but I have to accept that I do need to have some limitations right now. Mentally, I yearn to be traveling around the world right now, but realistically, running a nearby errand is proving to be a challenge at the moment.

I wanted to share some pictures of the surgical sites with you guys, as I don't believe I have done so yet on here, which is a gross oversight on my part. I have shared some over on Instagram, but somehow forgot to share them here, and I sincerely apologize. These are pictures of the areas that were taken 2 days ago. I could not include pictures of the peri-anal region that was worked on due to obvious reasons. That is where the most extensive work was done, and it is still there most extremely painful even 17 days post-op.

Despite current challenges, I remain grateful for the amazing people in my life; my family, my friends, my medical care team, and of course you guys as well, my supportive followers who I am beyond thankful for. A lot of you have been keeping up with my journey for many years now, and I can't even begin to tell you how much I appreciate you taking time out of your own day to see how I am doing. To me, time is the most precious thing we have, and the fact that you have chosen to devote some of your time to keep up with me means the world.. thank you from the bottom of my heart. ♡

I really needed the past 8 days of being home to rest and regroup, but I am going to try and do a lot more daily updates from this point on.

All my love,
Ari

05/11/2025

As of late yesterday afternoon, I am HOME ♡

Thank you to everyone who supported me throughout a really difficult time, there are no words to express my gratitude.

I woke up today feeling like I was hit by a bus, the visiting nurse just left a bit ago and she made a comment in awe of how much work my Dr. did.

I look forward to being closer to better days ahead ♡

04/11/2025

Hey guys,
Sorry I went MIA for a little bit!
Here are a couple of pictures of me having left the unit I've been on for 7 days (at that point).
Today marks my 9th day here. We only had a 30- minute curfew for the walk (Mom accompanied me), but it did wonders for my mental health at that point.
My depression has really kicked in these past couple of days; I am so beyond homesick, and I miss my dog Teddy more than anything. Having been separated from him for this long has me absolutely broken-hearted.. but if everything continues to go as planned, I will be coming home and reunited with him today!!
I am so beyond excited!! I think of how often I used to live from one hospital stay to the next, and I honestly do not know how I did it from a mental health standpoint.. I want to give my younger self a hug and have not been so hard on her over everything, as I was doing my best to stay afloat at all times.

I'll continue to keep you guys posted about going home today.
Oh, BTW, my favorite nurse I have had this admission is named Arianna, which happens to be spelled the exactw same way as my name. I actually have her right now as I type this, I am so incredibly happy I got her for my last night here! She is both amazing as a nurse and human, and I swear I am not being biased just because she has my name, haha. She is legit what I am now referring to my soul nurse ♡

Thank you guys so much for your continued support; your messages mean so much to me, and really help to invigorate my soul, and that in itself iinspires me to keep working hard to get better. I've always said the biggest pro to having this condition is the wonderful array of humans it has introduced me to, many of which I now am fortunate enough to call dear friends and aquantices.

Talk soon,
Ari

01/11/2025

Hey guys,
These are a couple of pictures of me taking a walk for the first time after my operation. After days of being holed up in bed in a hospital room, it felt so good to be up and to stretch my legs a bit.
Other than the hallway walk, I have yet to leave my hospital room, but I was told that I may be going home on Monday! The thought of being reunited with my dog Teddy in a couple of days has ne ecstatic; I've always said the absolute hardest part of being hospitalized has been being away from my dogs. I am definitely very home sick right now.

I also threw in a couple of pictures of my Nana visiting me yesterday; her visit alone would have been enough to leave me happy, but she happened to bring Modern Pastry Cannoli's and Umberto's pizza from the North End. 😋 it was definitely world's away from hospital food.

Sending love everyone's way,
Ari

31/10/2025

Good morning guys ♡

It is my 5th day of being hospitalized, and everything is going smoothly. My first night here was disastrous (I had the most dismissive and lazy doctor I think I've ever come across, and an unempathetic nurse who saw me crying my eyes out due to fresh post-op pain and did nothing), but after that everyone here has been amazing.. once I was linked up to the right doctors and appropriate care teams after that night, I can't say enough positive things about the care I have recieved; everyone from the nurses to the doctors to the CNAS have been amazing
Today, I have to begin to wean down on the ketamine (which I am on as a pain agent) that I am currently on. I am nervous about that as I am still in a great deal of post-op pain, but it is standard practice, and according to the pain team specialists, it is what is needs to be done. I trust them wholeheartedly as they have yet to lead me astray.

Despite any pain I am feeling now, I am so excited for the future, and that is all thanks to Dr. A and his continued phenomenal work. I know that once I am healed, day to day life will become a lot more enjoyable again, and I am so excited from that standpoint. It's all up from here 🙂 - Ari

29/10/2025

I asked the anesthesiologist if I could have my Mom film me while being wheeled off to surgery, and he said yes (I asked prior to the 2 shots of relaxation medication he gave me, lol). I now have very little memory of any of this happening or being filmed, but it is cool to look back upon the footage now.

Mom and Dad stayed with me at the hospital for over 12 hours on surgery day; I would be so lost without them.. I always say that God could not have blessed me anymore than he did in the parent department. ♡

Anyway, just thought I would share something a bit different/more personal as I seldom post videos on here anymore (which I am going to try and change and do more of) , and I wanted to give you guys a more intimate glimpse into what the pre-surgical process was like.

Thank you so much for all of your very kind words, each comment means so much to me. I don't know how I got blessed with this many amazing souls in my life, but I continue to be so grateful.

- Ari

28/10/2025

Hey guys♡
Surgery went well yesterday, no complications at all (not surprising in the slightest as Dr. A is the best of the best) and the anesthesia (the part I was most worried about) went flawlessly.
I am in a lot of pain right now, but I know it will be so worth it in the end to feel better on a day to day basis.. I continue to be beyond grateful to Dr. Alomari and his team for their excellent care. ♡

Thank you guys as always for your kind words, we'll wishes, and prayers. I am extremely sleep deprived and just not fully with it right now, but I will respond to each comment later. ♡

Love,
Ari

27/10/2025

Game time
Thank you for the well wishes ♡

27/10/2025

Hi guys!
Operation morning is here - and as nervous as I am, I'm also ready to just get it over with.

Me, Mom, and Dad are currently on the way to the hospital (it is 612am as I type this). The procedure is going to begin at 730am.

I will keep you guys posted on how everything goes!

Thank you so much as always for all of the support you have given me.. I could not be anynore grateful for you guys.

Love you,
Ari

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