Vanessa Hickey

First post: May 8, 2011 Latest post: May 9, 2016
After several weeks of not feeling well and several more weeks in ICU, Vanessa was diagnosed with Giant Cell Myocarditis. She went from running 8 miles one day to barely being able to walk around the block 2 weeks later.

There are many more details under the Background Story and our journey is documented in the Journal section. She is at home now without a transplant thanks to a great medical team and lots of meds. We're hopeful her energy level and muscle tone will continue to improve as some of the doses are decreased.


Vanessa got a rash April 1st 2011.  After.a week or 2 she went to the doctor.   the doctor thought it was hives and gave her a pack of steroids.  She had also been tired so they did blood work and it showed she was anemic so she started taking iron.  The rash continued to get worse so she went back to the dr and got a stronger dose of steroids.  After a few days it was still getting g worse so she went to ttys dermatologist.  He thought it was eczema. And gave her a steroid shot.  Aside from the rash she was feeling ok aside from an occasional upset stomach.  She was noticing a little fatigue with exercise though. The end of March she had run A 7 mile race.  A few weeks later she had a hard time making it a mile.  She played tennis in Friday April 29th and noticed being a little bit winded but otherwise fine. She went out to dinner with friends that night for her 40th birthday and woke up at 2am the next morning throwing up with what she thought was a stomach bug.   She was also very light headed and having a little chest pain which concerned her so later that day she went to a clinic.  They kept her for a whole and did a chest X-ray, an EKG and 2 bags if fluid but didn't really anything other than a stomach bug.  The next day wasn't any better so on Monday morning she went to her regular doctor.  She was very light headed, winded, nauseated, having cold sweats. The doctor couldn't get a good pulse from her so he sent her down to the ER.   They thought she had an infected gall bladder and were preparing her for surgery when her blood pressure rapidly dropped and she was crashing In the ER .   They thought she was septic and started major antibiotics and put a pause in the surgery until they figured out what was going on.  They told her she had had A heart attack and then did an angioplasty to look for blockage.  They found none but realized the heart was not doing well.  She was not allowed to eat or drink anything for 2 days while they tried to figure out what was going on with the gall bladder.  They didn't want to do surgery with the condition of her heart and after 2 days of antibiotics the gall bladder calmed down. Now they were trying to figure out what was going on with the heart.  It was only functioning at 12% and her organs weren't functioning properly so she was starting to retain all the fluids she was getting.  The cardiologist suspected viral myocarditis and decided she needed to be transferred to UTSW which took a couple of days.  She got there on Friday and they immediately started to work.  They also discovered blood clots all over her body (both legs, an arm, neck, and both major veins in abdomen).   The team of 5 heart failure doctors started to suspect something more.  They did a risky heart biopsy and that is when we found out  the devastating news that she had a very rare disease called giant cell myocarditis. Basically it's an auto immune disease where the body attacks the heart.  They immediately started working her up for a heart transplant.   There is a very small pool of people with this disease so unfortunately there is not a lot of research for a cure.  There are only 60 cases and most are found in autopsy.  It usually hits 35-45 yr  old healthy females with no previous heart conditions.  Up until 5 years ago there were no patients without a transplant. There have only been 6 since then without a transplant and we have no idea how those people are doing or if they ended up with a transplant.    After 3 weeks in the hospital (2 inCVICU)  We are happy to say Vanessa is at ho e with the family.  She is still very week but doing good.  Needless to say we have a long road ahead of us.  All my prayer warriors have gotten her where She is so please keep them coming. The doctors are even in awe of the miracles happening!!!!

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