Age 26

I was diagnosed with lymphangiomatosis in Feb 2009. It all started with the detection of a right vein thrombosis, and then the discovery and removal of 2 liters of chylus ascites from my abdominal area (2007). Unfortunately, after many tests and procedures (blood work, x-ray, CT Scan, Bone Marrow Biopsy, etc.) my case was considered idiopathic and I was sent home.

For two years I continued to work and completed my Masters degree in with minimal health problems; however, in October ’09 problems began to occur all over again. Doctors discovered a right plural effusion and, after several lung taps, a chest tube was placed. At first I was draining a liter and a half once a week, but it eventually became routine to drain my lung after dinner each night for over a month.

Because doctors couldn’t figure out how the fluid was accumulating, I met a specialist in Philadelphia, Pennsylvania who determined that fluid was leaking from my lymphatic system in the abdominal area and then percolating into the right lung. Following a lymphangiogram doctors discovered multiple cystic tumors surrounding my colon, bowel region, spleen and other organs. As a result, I was diagnosed with lymohangiomatosis and sent home with the hope that the oil like substance from the test would seal off any leaks in my lymphatic system. Sadly, the fluid kept accumulating. I returned to Philadelphia for another procedure in which doctors tried to burn out a large mass where it was thought the leak was coming from. Following yet another unsuccessful procedure, a laparotomy was ordered to potentially find the source of the lymphatic leak.

During surgery doctors attempted to tie off as many tumors as they could before closing me up; however it was nearly impossible to get them all. After surgery, a tube was placed in my abdomen to drain the ascites (chylous fluid). I was NPO for over a week to see if that would slow the fluid production, but it didn’t and I was sent home, tube and all. Three days later I was back in the hospital. The fluid output had again reached more than 2 liters a day. At Strong hospital in Rochester, NY, I was put on a TPN diet and daily injections of albumen. Fluid seemed to be seeping out of everywhere. While in the hospital I developed 2 more blood clots. I stayed at Strong for 3 days shy of a month. I was extremely malnourished and experimenting with different medications including Octreotide to try and help slow the leak down, but nothing seemed to work. After much debate and research, doctors decided to place a Denver shut in my stomach to help pump the fluid back into my vascular system.

Once I recovered from surgery doctors removed my abdominal drain and the shunt took over. I left the hospital underweight and exhausted. The chest tube was removed about a year later from when it was placed. The shunt worked well from August until December, but as time went on the shunt worked less and less. Fluid was yet again accumulating in my stomach and abdominal region. A nuclear medicine test showed the Denver Shunt had in fact stopped working.

Currently, I maintain a low fat diet and receive weekly injections of fat lipids through my power port. I have my stomach drained every two weeks averaging about 5.5 liters each time. Doctors have tried to unclog my shunt with clot busting agents but were unsuccessful. I will be having my shunt replaced on March 16th 2011; I am hoping that will help maintain the fluid production until a more permanent solution is recommended. In the mean time, I am seeking others who are faced with a similar situation as my own in order to learn and grow into my new changed life.

Dreams on a Hot Day

The dreams I once had are gone,

they’ve disappeared from my grasp

as quickly as ice cream melting in it’s cone

on a sticky, humid day.

You get to enjoy the taste as you lick the drips sliding

off the cone and down through your hands,

between your fingers, but before you know it

the tops on the ground and all you can do is

watch it melt into the pavement and enjoy

what’s left of the cone.

In a similar manner, my hopes,

my dreams have slowly melted in the sun beyond my grasp

and a new life has begun, one that will

take more than a lick to get use to.

Tick Tock

Waiting, Waiting, Waiting

For the doctors to come

A cure to be found

Or solution to be had


Waiting, Waiting, Waiting

For the pain to end

The sadness to cease

Or the leak to stop


Waiting, Waiting, Waiting

For a friend to call

A letter to come

Or my family to visit


Waiting, Waiting, Waiting

For an answer to my prayers

A simple sign from god

Or a miracle to happen