What My Mom Wrote About Me....

My daughter Megan, has had 20 years of fighting to live.. So many doctors have made so many mistakes, but she has survived. (1993) Born weighing 765 grams, (1996) at age 3 diagnosed with Leukemia with which her father left the family three months later. (2005) At age 12 had a mild concussion resulting in psychiatric treatment, which brought out the (2002-2003)sexual abuse of a "trusted neighbor" that had lasted almost 1 1/2 years at age 10 thru 11. However looking back, the heart was enlarged in imaging at the time of the concussion.. At that time no one disclosed that info.Was administered many behavioral medications that "can" affect the heart. (2007) In November, was diagnosed with Cardiomyopathy "Chemo therapy induced" which she needed a heart transplant. December (2007) Two days after the news, she witnessed a murder at a restaurant sitting about 10 feet from this tragedy. September 2, 2008 Megan received her Heart. In September 2010 she began getting very sick..every month at the Dr.s and ER, but all the diagnosis was "its all in her head" "she's wanting attention" or "I was wanting the attention" in May of 2011, luckily, a Dr. did one ultrasound on her abdomen. Resulting in two Fibromytosis Desmoid Tumors. y then they had grown threw her pancreas. stomach, colon , and small intestine. She had surgeries from then until February of 2012. In October of 2012 she was ill again, took her to the local hospital in St. George , Utah and the Dr. was a partner of her Dr. admitted her for hydration. She had headaches from this and he decided to treat her for migraines. I insisted she did not have them, and also insisted he check with the Heart Transplant Team and the pharmacist before he give her any medication for anything. He gave her migraine medication over a 5 day period then he had an injection of DHE 45 on October 26, 2012 she went directly into Cardiac Arrest. This medication is contra indicated for Cardiac pts. Two days later she was in need of a second Heart Transplant. In December they assessed her and denied her in January 2013 to list her for reasons I feel invalid, and I have proof of that. They forgot to inform us they could re assess her at a later time. She gave up and decided to do what they had told her would happen, and that was to die. She quit eating and her weight was down to 74 lbs. So until April 2013 we did not know they could re asses her until then. We had given up. Then they her that she needed to be treated for an Eating Disorder and be diagnosed Mentally stable. I took her to UCLA and she completed there list at the end of July 2013. From the October Cardiac Arrest she has had 6 stents placed in her heart. She went back to the transplant team and told them she had completed what they requested of her to re asses her again on August 15, 2013. They informed her at that time they would be waiting until January to decide if they would re asses her. She felt so bad. Two days later, on August 17, 2013, Megan suffered a massive sub dermal hemorrhage. The Dr.in St. George Utah told me it was over, they flew her to Las Vegas and one week later back to Utah because of her heart. She has some physical limitations she is working on, but has been back to the Transplant Team and again asked them to re asses her.. She told me ' I want a new heart, I want to live and go back to college and someday get married" They now want to transition her to the adult team in Utah. The Utah Adult Team will not assess her in reference to a note from the Cardiology Dr at Primary Childrens. This was unfair, they told us they agreed not to send anything but Meg's medical records and let any Team have their own opinion. 

We need help.. The insurance we have will not go outside of Utah and the premiums are $1019.00 a month it is COBRA She is on Utah Medicaid, but that has not went to UCLA nor to Las Vegas. We need to help this young woman to live.. I have told the Dr.s " It is not for me, she is the one that these things have changed her life. I have just tried to change my life to help her. Please get this story out. If you would ask your employees, friends, family, and all your business acquaintances to donate to Megan $2.00 it would be a tax write off and then she might have a chance.Please make any donations to Megansheartforlife Supplementary Trust Fund @ Village Bank in Saint George, UT 294 East Tabernacle St. St. George, UT 84770 Telephone #435-674-5200 Thank you so very much Paula and Megan. Check out a story on Megan in "The Salt Lake Tribune" December 24, 2011! There are several stories about her in the ST. George Spectrum. Another way you can donate is throw pay pal just search Paula Birk.

My Weekend, So Far.

Well Today Me an My Mom Woke Up Really Early, And Ate Breakfast And Then We Came Back To Our Room And Got Ready For The Day, Then We Decided To Go To The Santa Monica Beach, But Then It Got To Cold So We Decided To Shop, So My Mom Bought Herself Something In Victoria Secret's To Get Herself Something, Then I Went To Forever 21 And Got Some Ting's Then we Decided To Eat Dinner At The California Pizza Factory, And it Was Really Good. We Then Got Back To The Tiverton House And Got Ready For Bed And went To bed, Hoping tomorrow Well Be A Good Day, Too.

Hiw My Life Has Been And With PHP.

Well I Have Been To PHP Since Last Tuesday, And It Has Been Good, Last Week I Was Struggling Really Bed, But Starting Monday I'm Going To Be Stronger Cause I Know I Can Do It And I Have To So I Get My New Heart Transplant. Some Time Ether, Monday Or Tuesday I Well see the transplant Doctor So She can Check Me Out Before I Go Back Home To Utah. And I Might Get To Discharge Wednesday If I Do really Good, And I Well, I just Know it.

Getting Dischareged Today.... And Starting PHP Tomorrow

Well I Was Going To Be Discharged This Morning Around 9:00 A.M., But It Didn't Happen, So Know I'm Waiting  To Be Discharged, And For My Mom to Get Here So I Can Leave This Joint At The Hospital, I Want To Be Free Again. I Well Start PHP Tomorrow, Instead Of Today Because This Morning Didn't Work Out Very Well, So That Is The Plan, When My Mom Get's Here We are Going To Our Hotel And then we Are Going To Eat Dinner, Hopefully Some Were Good.

My Donor Letter....

Dear Donor Family,

 

On September 2, 2008 I received a heart from your loved one. You, he or she and it saved my life. I promise I am taking care of this wonderful gift.  Each day before I get up, I take a moment to feel this marvelous gift steadily thumping in my chest. It is alive and healthy and has created in me a new appreciation for life. More than that, though, I am always aware that this heart is not mine. It belongs to the kind of person all of us should aspire to be. Moreover, he or she came from the kind of people all of us should aspire to be.

 

Maybe it is my imagination, but since receiving my new heart in 2008, I feel a serenity I have never before felt. I feel a concern for others far greater than I thought possible, and I love cheese so much, I never liked cheese before I got I heart transplant, and I fell in love with music. I feel responsibility to all organ donors and their families to do what I can to honor their loved ones by committing the rest of my life to promoting organ donation. I was very sick prior to my transplant. I could no longer get around very well because my heart just could not pump efficiently enough, and I slept all day. I knew I was dying, and as a fifteen year old girl, I was so strong to go through with the transplant. I did not think I was that sick, but I was and as a young child that young I knew it and I was. As result, I believe that God saved me for a reason and that reason was to promote organ donation to honor you and your loved one and I know I can live my life to the fullest. I appreciate the simple things now.

 

 I’m 20 years old, I have graduated high school and I’m studying to become a pediatric cardiovascular surgeon, I would have written sooner, but I wanted to make sure everything was working out so that I could show you what has been accomplished by your family’s decision to donate. I would also like to say how sorry I am for your loss. I would give it all up to put your family all back together again. It is nice to know that there are such special people in the world who care about other people so much. Saying thank you just doesn’t seem like enough when what somebody does is basically save your life. I sincerely hope that life treats your family to nothing but happiness and prosperity. If there is anything you would like to know about or from me, please don’t hesitate to ask. I just want to say thank you again. I don’t know if we will ever meet and although I am likely to be at loss for words, I would like to thank you personally. You gave me life, you gave me peace and you gave me a profound sense of gratitude and understanding. I am a new person and I hope that in your grief it helps to know that a part of your loved one is alive and that with his or her help I am living my life in a way that would make you proud.

 

God Bless

Megan

What's Going With Me.....

Well I'm Going To Be Discharged Monday And Go To Partial, I Went  And Visited It, It Seemed Very Good. I'm Really Excited But Really Scared To Move to My Next Type, But I Know Can Do It, Cause It's For Me To Get a New Heart Transplant. I'm Excited.

The New Plan For As Of Today....

The New Plan For Know Is I'm Probally Going To Start Partial Monday, Hoping, Then i well Complete Partial And The Outpaitent, And then Head Back to Salt lake City, Utah At Primary Children's Medical Center, And Give My transplant Doc's And Update On Me, And See If They Well Reacess Me Right There And then If Not then I Well Come Back to UCLA In Los Angeles, CA, And The Transplant Team Well Reacess Me Here, and see If They Well Accept For A Secound Heart transplant

The Plan For Know....

The Plan For Know Is I'm Not Getting Discharged To Go To Partial Till Monday, Because I'm A Little Bit Of Issue's But It Well Get Better, Well Update Soon.

This Is What Happened With My Internal Medicine Doctor, It's Crazy And Not Fair

 Well On Thursday, My Internal Medicine Doctor Came In And Asked Me How Was My Stomach Was Doing Because I Have Been NPO For 3 Days And Yesterday I Was On A Full Liquid Diet, And Told Her My Stomach Is About The Same 6 Out Of 10 At That Point, And She Said Well Megan We Think You Are Faking It And It's In Your Head, And I Looked At Her And It Is Not In My Head And I Have Real Pain And She Got Really Upset. So I Don't Know What To Do. Oh, And Yesterday I Asked To Speak To Her And She Gave Me A Dirty Look And Walked Away And Ignored Me All Day. That Is So Fucked Up, Excuse For My Bad Language, Sorry I'm Just Very Upset.

New Update....Good News Finally.

Well Last Night I Got Rid Of Ivan The IV Pole. :D And My Stomach Still Hurt's Very Much, But Hope Fully I Can Get To Soft Solid Food's, Today. That's About It, Well Update Soon Again.

Vancomycin- Resistant Enterococce (VRE)

What is vancomycin-resistant enterococci (VRE)?
Vancomycin-resistant enterococci (VRE) are a type of bacteria called enterococci that have developed resistance to many antibiotics, especially vancomycin. Enterococci bacteria live in our intestines and on our skin, usually without causing problems.
Enterococci bacteria become a problem when they cause infection. These infections can occur anywhere in the body. Some common sites include the intestines, the urinary tract, and wounds. For some people, especially those who are weak or ill, these infections can become serious.
Vancomycin-resistant enterococci infections are treated with antibiotics, which are the types of medicines normally used to kill bacteria. VRE infections are more difficult to treat than other infections with enterococci, because fewer antibiotics are effective against the bacteria.
What causes a VRE infection?
VRE, like many bacteria, can be spread from one person to another through casual contact or through contaminated objects. Most often, VRE is spread from the hands of a doctor to a patient in a hospital or other health care setting. VRE is not usually spread through the air like the common cold or flu virus unless you have VRE pneumonia and are coughing, which is rare.
If you are healthy, your chances of getting VRE are very low. Even if you have been exposed to VRE, or have VRE in your body, you are not likely to get an infection. VRE infections typically only occur among people who have weakened immune systems, such as people with long-term illnesses or people who have had major surgery or other medical procedures and have been treated with multiple antibiotics.
Experts do not know exactly why some people become infected with VRE and others do not. But they do know that VRE infections are more likely to develop when antibiotics such as vancomycin are used often. Given enough time, bacteria can change so that these antibiotics no longer work well. This is why VRE and other antibiotic-resistant bacteria are sometimes called "super bugs."
What are the symptoms?
The symptoms of a VRE infection depend on where the infection is. If VRE is causing a wound infection, that area of your skin may be red or tender. If you have a urinary tract infection, you may have back pain, a burning sensation when you urinate, or a need to urinate more often than usual. Some people with VRE infections have diarrhea, feel weak and sick, or have fever and chills.
How is VRE diagnosed?
If your doctor suspects that you are infected with VRE, he or she will send a sample of your infected wound, blood, urine, or stool to a lab. The lab will grow the bacteria and then test to see which kinds of antibiotics kill the bacteria. This test may take several days
How are infections treated?
If you get a serious infection with VRE, you may be isolated in a private hospital room to reduce the chances of spreading the bacteria to others. When your doctors and nurses are caring for you, they may use extra precautions such as wearing gloves and gowns.
VRE infections may be difficult to cure because the bacteria do not respond to many antibiotics. If you have an infection, your doctor will order antibiotics that may be given by mouth or into a vein through an IV (intravenously). Sometimes more than one antibiotic is prescribed to help stop the infection. Part of your treatment may include sending samples of your blood, urine, or stool to a lab to see if you still have VRE in your body.
Some people get rid of VRE on their own as their bodies get stronger. This can take a few months or even longer. Other times, an infection will go away and then come back. Sometimes the infection will go away but the bacteria will remain without causing infection. This is called colonization.
How can you prevent VRE?
As more antibiotic-resistant bacteria develop and more cases of VRE are documented, hospitals and other health care facilities are taking extra care to practice infection control, which includes frequent hand-washing and isolation of patients infected with VRE.
Even though most healthy people are not at risk for becoming infected or colonized with VRE, you can take steps to prevent getting VRE.

• Practice good hygiene.
  • Keep your hands clean by washing them thoroughly with soap and clean, running water or using an alcohol-based hand sanitizer. Hand-washing is the best way to avoid infection of any kind.
  • Keep cuts and scrapes clean and covered with a bandage and avoid contact with other people’s wounds or bandages.
  • Do not share personal items such as towels or razors.
  • Keep your environment clean by wiping all frequently touched surfaces (such as countertops, doorknobs, and light switches) with a disinfectant, especially if someone in the house has VRE.
• Be smart about using antibiotics. Know that antibiotics can help treat bacterial infections but they cannot cure viral infections. Always ask your doctor if antibiotics are the best treatment. And avoid pressuring your doctor into prescribing antibiotics when he or she thinks they won't help you get better.
• Always take all your antibiotic medicine as prescribed by your doctor. If you use only part of the medicine, it may not cure your infection. Also, it may cause antibiotic-resistant bacteria to develop.
• Do not save any antibiotics, and do not use antibiotics that were prescribed for someone else or for a different problem.
• If you are in the hospital, remind doctors and nurses to wash their hands before they touch you.

Bad News... I Have VRE (Vancomycin Resistant Entoroccus)

Well Yesterday I Was Having A lot Of Diarrhea And Then Last Night I Was Eating My Snack And I Got  This Horrible Pain In My Stomach And Then Was Puking Non- Stop. So Last Night They Did An X-Ray And It Was Good, But Then This Morning The Internal Medicine Doctor Came In And Told My That I Needed To Be NPO Again And I Needed An IV, And That I Had VRE, So All Day To Day I Have Been In Bed And Tomorrow Hopefully I Can Start With Clear Liquid's. Hopefully Tomorrow Well Be A Better Day.

Another Update... But Good News.

Well The Doctor Came And Saw Me, And I'm Doing A lot Better, My X-Ray Was Clear, It Just Said My Bowel's were Really Slow, So I Got To Be Careful What I Eat, And They Took Out My IV So That's Also Good. They Are Just Going To Watch My Bowl's Closely. And I'm Not NPO Anymore So I Get To Eat And Drink. :)

New Update For Today.

Well Last Night I Had To Get An IV and They Had To Put It In My Foot. And They Had To Give Me A Shot Of Phenergan, And It Really Hurt. So Know I'm Still NPO. And I Feel Still Sick.

Quick Update For Today.

Well Last Night I Was Putting On My Pajama's And I Looked Down At My Leg's And There Were So Swollen So I Told My Nurse, And She Called The Doctor On Call And The Doctor Came And Saw Me And Decided To Put Me On Strict I And O's And Then To Day I Well See Internal Medicine And My Transplant Team Well Come See Me To. Well I've Been Shortness Of Breath, Like Six Doctors Had Come In Saw Me, They Did Blood Work, An X-Ray, Dopler, And An Echo, They Still Don't Know What's Wrong. When The Doctor Was Doing My Echo I Was Looking And My Heart Looked Slower. My Doctor's Said I Might Have Another Small Bowl Upstruction, Because I've Been Having Symptom's That I Probably Have One. So Tonight I Don't Know What's Going To Happen, So Hope Fully Something Not Terrible.

My Mommy Is Coming To Visit Me Today.

Well I Hope Everybody Had A Great 4th Of July, Well I Didn't See Any Firework's Of Course Because I Was In The Hospital And From The Hospital You Can't See Any Of The Firework's. So That Really Sucked, But I Just Watched Them Off Of The TV. But Today, My Mom Is  Coming To California To Visit Me For The Weekend And I'm So Excited. I Cant Wait To See Her, We Are Goanna Have A Blast. And There's A Staff Member Here And His Name Is Brandon, And He Is Very Funny, When My Mom Is Here He Talk's In A British Act Sent, And He Trick's Her It's So Hilarious And It's The Best. But I Can't Wait To See My Mom.

My Treatment Know.... And Happy 4th Of July.

Well First Of All I Have Been I Treatment Sense April 26th, 2013, I Have Bulimia Nervosa, But I'm In Recovery And I'm Recovering Day By Day. I Have Done Great. So Yesterday I Had Treatment Planning And My Whole team Said That I Well Be Inpatient For About 2 More Week's, Then I Can Go To Partial, Which Is Eating Disorder Day- Treatment, And I Well Have To Be In Partial For About A Month, Then After I Do That And Finish My Treatment Then, The Can Reassess Me For A Second Heart transplant. :D So Yes That's Been Going On In My Life, So Far. Well Update Soon Again.

Me In My Eating Disorder Treatment.

Today Is July 2, 2013, I Have Been In Treatment Since April 26th, 2013 And I'm Doing Great In Treatment, Well Post Tomorrow And Explain Everything.

My Life Know.....

Well, Right Know I'm In Treatment To Get Healthier, So I Can Get Relisted For A Second Heart Transplant, Because Utah Denied Me For A Second Heart. So I'm In Recover For An Eating Disorder. It Start's Know.....