My 5 Years Of Hell...

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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My 5 Years Of Hell...

Postby cjhurt92 » Tue Sep 22, 2009 1:03 am

HI, My Names Carlos Hurtado, I'm 17 Years Old.
I've had Severe Lymphedema in My Left Leg Since March 10 2004.
I wasn't Diagnosed Until late 2004 by a Doctor At children's Hospital Los Angeles California. By The Time i was diagnosed my condition was out of control i went to over 6 hospitals in California No one New what To Do, Until I Met Dr. Emily Iker in Santa Monica California. She was a psychical medicine Doctor Who Happened To Have Lymphedema (Which Was Under control) She Helped me, She gave my a garment and wraps and Performed Lymphatic Drainage on me for 8months Until my insurance stopped paying. Within Those 8 months We saw no Improvements at all, in fact my condition got worse my 35 pound leg turned into 75 pound leg. I stopped seeing her in 2005 She said she really couldn't help me I was The only person Shes ever had that didn't see improvements. So i stopped seeing her and moved 70 miles away To Victorville California.
My Condition Just got Worse and worse. from 2004 to late 2007 I had about 15-20 Infections, I almost died 3 times,I was leaking a couple times a month,i was in Horrible Pain,None of the Pain Meds Were Working i had taken Vicodin,oxy,percocet,Morphine,Tylenol,Ibuprofen,aspirin everything there is. (Thank god I never got addicted to anything).
I was Just Miserable ,Hopeless and Depressed I wanted To Kill my self..
Until August 2007 when a Doctor at Children's hospital L.A Recommended Getting The Leg Amputated. First I said "Heck, No." but After awhile Of giving me pros's and con's and Making me really belive theres a big chance I would Live a Normal-er Life Again. He Referred me to A Very Good Doctor at UCLA Medical Center, This doctor Performed Hundreds Of Amputations. So I agreed to see this doctor...So We Went To Him, He Was Very Nice, He Told Me Upfront He Wasn't Promising Anything, But he Said Theres A Big Chance That my Life Would Be Much Easier. He made Me Feel Better about it, so i decided to go threw with the Operation I Wanted To Take The Chance, I wanted To Get Away From The 90 Pound leg...So On October 5 2007 I made my biggest mistake and had the Operation, They Removed My Left Leg, I Of Course Woke Up To Horrible Pain I was on The Highest Dose Of pain Medication. I had allot of phantom pain. I was so Scared i felt So weird when i woke i couldn't move my body except for my arm i went to touch my left leg but it was gone..It was an unreal feeling i immediately Burst into tears and started Screaming i was scared and in horrible horrible pain.. Days went by and The Doctor Told Me The Surgery Was A Successes and That I should Be Out Within 5 weeks. I was happy but was in unreal physical and phantom pain... I did Painful physical therapy for 5 and a half weeks and was released Nov. 10 2007.
I went Home I was happy i was slowly learning to use my walker....But My Phantom Pain and Physical pain was Getting Worse and worse and i started getting Swelling In My Genital Area and I Had My First Infection after My Amputation. So We Went Back To UCLA and They treated my infection, But My pain Was Out Of Control they Didn't know What To Do I would Scream,Scream,scream So much that i had my own room and they would even close the door cause they got tired of hearing me cry... A week Later a Doctor Came Up With the Idea To Install A pain Pump Surgically. ( I was never Really Told Until I was being taken To have The Surgery cause i was medicated so much i was sleeping so much,) So The Installed The Pump On Nov. 23rd 2007.... Two days after that i started getting Better My Pain was and Still Is Controlled With The pain Pump (once or twice a day i still need Morphine Pills.)
Everything was Going Great From Nov. 2007-august 2008
My Life Was Great It Was Normal I was happy, I Stopped taking Prozac,stopped taking pain meds the pain pump was working, I was using My Walker,scooter. Everything Was great, But I noticed within The Nine Months I was gaining allot Weight i went from a Medium Mens size Shirt To a XXL. I Thought Nothing Of It I thought I was Just Getting chubby From Eating To Much. So Stupidly I never said Anything to my mom...Boy Was I stupid..Mid August 2008 I woke up One day feeling Fine...but around 2pm i felt Nauseated. so I told My mom (who was getting ready to run Eran's). She Gave Me Some Zofran (Nausea Pill) and Told Me To Rest. So I did, I took The Pill and relaxed In My recliner, 5Min's After She Left I started Vomiting and had diarrhea. After I finished Vomiting I slowly went back to my chair i tried calling mom but her phone was dead. i didn't know where she was, My grandma was on vacation. So i couldn't do anything but wait for her... I didn't Think anything Of It i thought i just had Stomach flu. So i fell asleep In My Recliner and was awakened at 3hrs later i started Vomiting again, But This Time The pain from Throwing Up was indescribable, I was crying, I got up and slowly walked to the couch (it was to longest painful walk of my life) I layed on the couch and threw up again... thank God Mom Returned as it started vomiting again..I Told Her What was happening. She Said "lets go to the hospital" i tried to sit up, But Couldn't then I couldn't Breath. Like Any other Person I freaked Out. So My mom Called 911. i was rushed to the nearest hospital ( which was a really bad one but we live in the middle of nowhere and it was the closest one)... At The Hospital i almost died my heart rate was sky high, I had a fever of 103 and i could barely breath...2 hours later they said they didn't know what to do, They never dealed with laughed before, So we Asked to be transferred to Loma Linda. That night i was transferred to My hospital "Loma Linda University Hospital" we saw many doctors. One Day Later They Told Me My Worse Nightmare!, "The Lymphedema has Spread To My mom and i cried for 2days straight. The doctors told me they could drain the fluid out of my stomache..So the next they they Drained My Stomach they Took Out 8 Liters of Chyle fluid!!!!!
I i got very sick i had to be fed threw a tube. I Lost 78 pounds i had weighed 205 pounds. After I got better and was released i think i weighed 125. i was very weak. it took me 2 weeks to gain strength again. I was put on a fat free and Gluten free diet..other than the diet Everything was going good again..
Until October when one night i Woke up with diarrhea. I went to restroom and did my business i felt very sick. i tried to get up to clean up but i couldn't sit up i felt horrible i wanted to lay on the floor. i yelled for my grandpa he helped me and took me to my bed. my mom called 911 and the same thing happened but this time they took me straight to loma linda hospital. i went threw the same thing they drained my Stomach. 4 weeks later i was released. Finally everything Was OK I was Fine all the way till Nov 22 when The worse thing that's happened Threw out the past 5 and a half years.....MY Left Lung Collapsed Due To The Build Up Of Chyles Fluid. I was devastated...I Just Thought Oh My Gosh..Whats Next?..Am i Gonna Die Because Of the Stupid Fluid?
I spent a month in the hospital. I asked "What are You guys Going To do?,,,I dont want to die." They said They need some time to thin of something, They returned a few days later they SAid the best option is to install a pump in my chest that would drain all the fluid out. I wasn't thrilled about having another operation, but it was my only choice so i agreed. A few days later
They Installed a Drain in my left Lung. The Pump Drains Fluid It drains into My stomach and I'm suppose to urinate it out. So I was released a week before Christmas. I went home had a great Christmas. Everything was OK all the way up to last week when i went into the E.R Complaining that i was short of breath and that my stomach is getting more and more swollen. since. December 2008 i went from a size medium to a size xl. They sent me back home cause they said its to dangerous to keep on draining the fluid from my stomache. They Could Only Drain It when My swelling is really bad.. Its Just very Scary I never know when I'm going to get an infection, i don't know when I'm going to start vomiting, I Don't Know when I'm going to have trouble Breathing. I've been okay lately but i Still Leak allot and my Genital Swelling is at its worst. It Scary Not knowing When I'll Get sick. My Main concern Is The Genital swelling..I Dream Of having Kids Some day But it seems That It could never happened.
i should Have Never went threw with the Amputation, But i can't Change The Past. I wanted To Share My Story With Other People Who Are Dealing With The Horrible Disease That Is Misunderstood By So Many People, I Hope That My Story Will Warn Other People NOT to Have their Limb(s) Amputated Unless Its a last resort.
My Dream Is To Become a Pediatric Nurse and To study Lymphedema On The Side I wanna Create a Cure, I don't Want Anyone Else To have to Got Threw What We Go Threw...I Hope To Pursue Those Dreams but things have been terribly Tuff, My Mom Is Having Huge Money Problems, I've been trying to study for my GED But its been hard i get sick so often..Plus its been 5 years since I've been to public school (I've been home taught off and on over the years) so i have to study extra hard, I hope Things Get Better. Please Tell Others about my story and if anyone has any tips,Questions, Advise or anything that could help me Just Let me know.

P.S: Sorry for any misspellings I'm sending this from Cell phone.
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Joined: Mon Sep 21, 2009 3:27 am

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