It took a village to get this amazing young man home from the ICU to honor his final wish - to be in his own home, in his own bed, with his family. He has touched countless lives around the world, surmounting unbelievable odds. Traveling great distances, his brothers Steve and David stood at his side to the very end - best brothers ever. His beloved Granny Ann Marie and Uncle also trekked from cross country. Our deep gratitude to the entire HMC team for its compassion. Our hearts are broken, but at last Michael is free to fly.
I'm a graduate! P
Amiee Ickes has Parkes Weber Syndrome, a vascular disease similar to mine. For more information about Parkes Weber, see the pink entry on the sidebar.
I was on National Geographic on Monday, March 22, 2010 @ 9 PM. Here's an overview of my appearance!
My name is Michael Politzer. I was born on June 27, 1993 with Klippel-Trenaunay (KT) syndrome, a rare vascular disease that, in my case, affected virtually every part of my body. Rare even for KTers, I have massive vascular malformations throughout my body, as well as in my internal organs and bones. Much of my vascular system formed on the surface of my skin, resulting in constant bleeding and infections. I have gross (meaning huge) hypertrophy --overgrowth of bone and muscle tissue from about the ribcage down, most prominent on the left side of my body. Man, does it hurt!
I was not expected to survive my birth night, yet here I am, 16 years old and very happy ! I sure disproved those doctors!
Mom still cries when she tells this story: After my second heart failure, when I was six days old, the breathing tube fell out. I kept breathing on my own, “and the rest, as they say, is history!”
I was born unconscious and covered in blood. My legs were purple and very deformed. My internal organs weren't working on their own. The doctors in Harrisburg Hospital, where I was born, rushed me to Hershey Medical Center, where they hooked me up to dozens of life support machines. After my second heart failure, my mom demanded that the doctors let her hold me before I died, which they finally allowed her to do, carefully working her way around dozens of machines, tubes, IVs, you name it.
When I was one, doctors at Boston Children’s Hospital decided I’d be better off without my gigantic, malformed, and problematic left foot that my mom had to wrap in bandages every day. I couldn’t stand or weight-bear on it, and constant infections kept me hospitalized and in indescribable pain. So the surgeries began. By age two, the front half of my right foot was also amputated, and the fight was on to get me fitted with a prosthesis (an artificial leg) so I could learn to walk.
Age 3, with prosthesis
I did walk, with difficulty, intermittently for several years. But problems with skin breakdown, bleeding, swelling, and infection forced me into a wheelchair. I desperately want to walk again, but I’ve been in a wheelchair so long now that I’m starting to look like a pretzel and I can’t straighten my right leg, which is riddled with large thromboses (blood clots, and those things hurt!). Looks like I either got into one heck of a fight, or one heck of a fire, as people used to ask if I was a burn victim.
A lot of children stare, but I don’t mind. I just tell them calmly about my disease and what happened to my legs.
In June 2005, after years of struggling with my massive left leg, my wonderful Boston team, including my heroes, Dr. Fishman, my general surgeon, and Dr. Kasser, my orthopedic surgeon, agreed to amputate the leg at the knee. Until that point, my leg was so big, I literally needed both hands to lift it at all. Even today, though much lighter, my left leg is still as big as an adult's in circumference. The hope was that even if I could not be fitted for a prosthesis eventually, getting rid of that massive ball and chain would make it easier for me to transfer. Just moving my body through space consumes more energy than my body can muster, so eliminating that enormity would help my healthy tissue to grow.
The surgery went miraculously
well, as I only stayed for six of the expected seven days, but, sadly, walking
is still a distant dream. Doctors have not yet been able to even begin
repairing the surface of my skin, which is covered with vascular malformations
that ooze and bleed. They look like hundreds of really nasty scabs! I can’t be
fitted with a prosthesis as long as my skin is covered with open lesions. But
I’m determined to get upright one way or another. And like I’ve always said,
and proven time and time again, time and time again, I won’t take "no" for an answer!
"When Death comes knocking at my door, I just slam it in his face!"--Me
In November of 2006, I had to have my mediport removed, because of an infection. I was very disappointed about that, but, while in the hospital, something miraculous happened. An orthotics person came into my room, and traced my foot. From that, he made a shoe especially for my foot size & shape. (My foot's kind of triangular) The shoe had velcro straps, and fit wonderfully!
In late August 2007, I went to a wonderful camp called Camp Horizon. During my week-long stay Camp Horizon, I met a new friend named Chris. For more information on Chris and Camp Horizon, visit my summer camp page.
In late January 08, I went to Hershey to get yet another stoma revision, and another port, which took some convincing of my doctor on my part, who wanted to avoid another surgery as long as he could. You can't blame him for that.
Through the first week of June, I went up to New York for the second round of microfoam schlerotherapy by Dr. Burrows. It's helped a lot so far!
At right, with Dr. Pat Burrows, at Roosevelt Hospital in New York City. She sclerosed my bladder and legs in April and June 2008, to help stop all the bleeding. She's so nice, and a great doctor, too! She attempted to work on my spleen with sclerotherapy in December 2008, but it grew a lot from the last time she saw me, so I had to get it removed in Boston.
In October 08, I spent another 11 days in the hospital with a stubborn leg infection that wouldn't go away! That was my 62nd admission. It wasn't all bad, though. Layla Walton was there, and I met her and her mom, Eve Furnish. I went back to New York in December 08 to have endovascular surgery on my spleen, which was in very bad shape.
On December 1, I flew to NY again for another round of microfoam treatment, and an endoscopic spleen removal, but they couldn't do either because my spleen had grown too big to remove endoscopically. Therefore, a splenectomy became necessary because the doctors in New York thought it would rupture. They had to airlift me to Boston, where I expected the operation to be done immediately, but they needed to have a safe surgical plan. I desperately wanted to avoid another surgery, and was begging to just wait until after Christmas to remove it, but they convinced me that it couldn't wait.
Dr. Hamilton performed the surgery. The surgery went much better than everyone thought. The spleen weighed 5 lbs! My mom told everyone that the doctors "delivered a 5 lb bouncing baby spleen, but sadly it didn't survive." She then got countless e-mails asking whether it was a boy or a girl, so we decided to call it a girl.
I was back in the hospital in January 2009, then two more weeks in February and March for an infection of VRE in my port. I developed a resistance to Vancomycin, the antibiotic I was taking. Now whenever I go back, I have to be on Contact Isolation, which means I can't leave my room without following strict protocol, and everyone has to gown up to go in.
No sooner did I get home in March than I got sick again and had to go right back in. This time I had pseudomones, another one of those nasty hospital infections like MRSA. Also, my legs and pretty much everything below the waist kept blowing up and hurting like crazy. Plus I have pressure sores all over my backside, which I can't get off of because I can't lie on either side without mind-numbing pain in my pelvic area. I could barely move! I was in the hospital for a whole month. They did a new venogram, and found out that I have big clots in my pelvis and a large vascular malformation in my left hip, pressing against my sciatic nerve. THAT explained the horrendous pain!!!! It had doubled in size since the last scan. My foot looked like a balloon.
As of early July, I got off TPN, an IV nutrient supplement, because it made me swell a lot! My port would no longer work, so I will have to get a new one eventually. Although, I saw Dr. Fishman in Boston on July 24 for a follow-up appointment and part of the National Geographic filming. He said I looked great since he last saw me for the splenectomy, my color was good, and the clots currently in my pelvis were not getting worse.
For some reason, sometime around July, my average temperature considerably dropped, causing me to get hot very quickly. This is peculiar, since up until then, I was always colder than most people. Nowadays, as opposed to the average 98.2˚F, my temperature is normally somewhere around 96-97˚F! Because of this, I got hot very easily, and if I got too hot, I would tend to vomit. This posed quite a dilemma, because I needed air conditioning most of the time, so my mom has to go around in a sweater all the time, and everyone else was cold while I was hot. I desperately needed this to change, for obvious reasons. Luckily, around October, I started getting colder, so hopefully it wouldn't be as big a problem.
In September '09 my occluded port was removed and replaced with a Broviac, also known as a central line. The plastic surgeon removed a Pyogenic Granuloma from my right thigh.
Thanksgiving 2oo9, I spiked a fever of 102˚F. The doctors wanted me to come to the hospital for another round of IV antibiotics, but because my girlfriend Amiee was coming, I wouldn't have gone into the hospital for the world. So my mom talked the doctors into letting me take the antibiotics at home so I could see Amiee!
On December 15, 2009, I got a cool new electric wheelchair! The back and feet can go back so far, I can literally lie down in it, and it also tilts in space. That means the entire wheelchair goes back or forward, instead of just the feet and back, relieving some of the pressure off of my rear. It even has a cup holder for my water bottle! A few days after we got it home, I got out of it, and it got stuck so that it tilted back, but not forward. It was on its back like a turtle! Thankfully, I wasn't in it when that happened, and it eventually got fixed. Although, they had to take the footrests off when we got it, because my legs didn't even reach them!
On March 22, 2010, I was featured on National Geographic's Science of Extraordinary Humans. During the last week of July, I was filmed for their show, and it was my first appearance on a national television program!! I have been on the news before in my life, a long time ago, but this was my first international appearance! After the show, I got hundreds of e-mails from people who saw the show, some with KT or other vascular diseases, some without. I subsequently created, with the help of my mother, a map to log anyone who saw the show and got in touch with me. Click here to access this map. If anyone who reads this saw the show, and is not on the map they should feel free to e-mail me at the above e-mail address, and I will gladly put them on the map.
On May 25, 2010, while I was at school, my mom was in an unfortunate accident that eventually ended up in us getting a new wheelchair van. The van has a built-in ramp in the back, as shown, as well as a floor that was specifically lowered for a wheelchair. The van originally had hand controls so that someone like me could drive it, but we had those taken out, as my mom would be the only one driving it. Since I got the van, I am now able to go places everyday that I wasn't able to before we got the accessible van!
The week before Thanksgiving, I went back into the hospital with an infection and major swelling. Luckily I got out in time for Thanksgiving! While there, the doctor suggested compression therapy to help bring it down. I went for a few weeks, where they used a compression garment that used alternating pressure to help move the blood through my body and break up some clots. When it ended, I got a compression garment to use at home.
On May 25, 2011 shortly before my High School graduation, I went to an awards ceremony and was awarded the Jennifer Chestnut Award in Honor of The Spirit of Life, named for a woman who recently died after a long battle with cancer. I received the award for managing to excel through twelve years of school despite all my hospitalizations, surgeries, and everything else I have been through. I would like to publicly thank her father, Mr. Williams, as well as her parents, for such a prestigious award. I will attach a picture of the award as soon as I can!
On Memorial Day 2011, shortly before my High School graduation, I went back to the hospital because my broviac was infected with a couple of bugs, and they couldn't figure out what they all were. It took a few days, but I was put on antibiotics that cleared up the infections and released the day of Graduation! Six hours beforehand, to be exact. But I made it to the ceremony in one piece, and before I knew it, I was shaking the principal's hand as I received my diploma! Twelve years of school were finally over!
*Don't forget to check out my Family Photo Album!*
Fellow KT-ers! Visit k-t.org and become a member!
Click here for a map of people who saw my National Geographic show. If you saw the show, and you want to be put on the map, email me @ email@example.com! Please include your CITY and country.
I no longer use my old address!! I apologize to those whom I have not answered, and if you email me at this address I will respond ASAP!!
If you put yourself on the map, PLEASE E-mail me and let me know. If you do, please make your marker LIGHT GREEN UNLESS YOU HAVE KT, in which case, make the marker RED.
Read any medical articles on my Important Resources Page
Me before my stoma revision in August '07. See how my foot is really round?
capillary vascular malformations (port wine
tissue/bony hypertrophy (abnormal growth of bone and soft tissue resulting in
thickening or lengthening of the limbs/organs) and varicose veins.
The patients of this syndrome live with debilitating vascular
malformations (abnormal collection of blood vessels ; arteries: which carry oxygenated blood and veins: which carry deoxygenated or dirty blood) at
different anatomical locations i.e., soft tissue, bone, systemic organs etc.
resulting in loss of function in the affected tissue or organ. This tissue
defect (vascular malformations ),
especially of the bone and tissues in the limbs run the risk
Parkes Weber Syndrome is characterized by a capillary malformation
(PWS) that has an underlying high flow vascular malformation (AVM). This
syndrome causes hypertrophy (overgrowth) of the affected area. Basically, blood flows between the veins and the arteries instead of just back & forth through them!
blah blah blah...I can't understand a WORD of this! English please! Here's what it means:
Abnormal blood vessels grow where they don't belong or are missing where they should be. Usually the body part near the "bad veins" grows way too large (hypertrophy). Most of us KTers have overgrown feet, often with fused or oddly formed toes. We have vascular malformations, like tumors, and port wine stains (pws)--purple patches of skin filled with lots of capillaries. Most of us bleed a lot. Our lymphatic (lymph) system (like clear blood) also overgrows, making us swell. That's called lymphadema ("lim-fah-DEE-mah").
To have something removed endoscopically means they put a sort of tube through a small hole, and suck out the bad organ with a tube, like a vacuum.
A broviac is a type of long-term central venous catheter with an external port for administration of medication.
A Pyogenic Granuloma (also called a skin tag) is a small rounded mass of inflamed, highly vascular granulation (rough) tissue on the skin, frequently having an ulcerated surface.
I’ve bucked the most daunting odds imaginable. From small bleeders to gaping, life-threatening wounds. But it’s an uphill battle.
I’ve been in the hospital more than 50 times and had 30 surgeries.
That’s a lot of slicing! I had my left leg amputated at the knee, my right foot
partially amputated and reconstructed; my
internal organs reconstructed twice; part of my bladder and intestines removed
and bypassed. My massive left hip, thigh, and rear were debulked
(cutting the bad stuff out) in 2002—a surgery I barely survived. I still have
skin breakdown and oozing from the surgical site. That sucker just won’t heal!
I’m half the size of other kids my age. I'll have to keep having surgeries all my life. I have a broviac in my chest -- that's like a permanent IV, so they can do transfusions without sticking my arms all the time. I need blood transfusions about every 2-3 months. Every day something new sprouts up to challenge me.
Summer 2005, Age 12, Always on the mark!
My Kool KT Friend Gordon and his dog, Doogan
Check out some more of my KT Friends:
Joette, Gordon, & Me at a KT Conference
Want your link here? Write me at firstname.lastname@example.org with your name, site, & a brief description of the site! I'll add your site as soon as I can!
KT Fabulous is the blog of Arianna Faro, a fellow KT-er. Check it out today!
Our Great Adventure With KT is another site which details a book by Sittidet Chaiyahat, a KT-er in Portland, OR.
"We stand in the midst of nourishment and we starve...Let everything bless you. Even your limping can bless you. The table of daily life becomes a banquet to which we are always invited."
Layla Walton (at 2 months) & her Birthmark Bear www.joinevesjourney.com
"The more people know about Vascular Diseases, the more people will hopefully be motivated to become doctors, and the closer we will be to finding a cure!"--Me
Here's the link to another survival site. Her name is Shelby Cooper, and she has Post-Transplant Coronary Artery Disease: