Post Number: 10519
|Posted on Sunday, October 11, 2009 - 08:59 am: ||
My name is Kim. A little over 11.5 years ago I received a heart/double lung transplant. Yup, a new pumper and a set of new blowers. Why did I need my chest cavity cut open?
I was born 28 years ago (1/3/80). I was born a lot earlier then planned. Because of this, I ended up with a lot of health complications but mainly in my heart and lungs region. While it was obvious that my lungs were underdeveloped it didn't even occur to my doctors for a couple of years that there might be something wrong with my heart. Remember: this is early 1980s thinking.
When I was 2.5 years old my doctors thought I'd be doing somewhat better being on oxygen. After doing a cardiac catheterization on me it was discovered that I had holes in my heart--holes that were unrepairable. I was diagnosed with Eisenmenger's Syndrome and PPH (Primary Pulmonary Hypertension). Once that was discovered my doctors "tip-toed" around this new kind of surgery, an operation that might be able to fix or even "replace" the organs of mine that were in bad shape. An operation called a transplant.
When I was almost 5 years old my parents decided to move the 4 of us (I now had a baby sister who was born HEALTHY) from Boston, MA to Tampa, FL to see if the warmer climate might help me. It worked. I ended up having a normal childhood. Some of you might be reading this thinking "yeah right" but it's true.
I grew up in a great neighborhood with lots of kids my age. I could go down the street, across the street or even a block or two and my parents didn't have to worry about me. All my mom would say was "call me when they're [my friends parents] getting sick and tired of you so I can come and pick you up" LOL! I was an average/above average student in school. I was active in Girl Scout and in my church. I remember family road-trip vacations up to Boston during the summer. A lot of the kids I became friends with I'm still friends with and it's been over 20 years!
In June of 1994, I went to my cardiologist for my yearly check-up. It was the first day of summer vacation and I was antsy just to go in, get checked and go on with my summer. Fate had other plans. My usual doctor wasn't available so we had a fill-in. This doctor took one look at the results of my echo cardiogram and said the words that would shake me to my very core: I've just gone the results of Kim's echo we need to get moving with the transplant. TRANS-WHAT?!
Growing up my parents didn't know how to tell me the truth (who could?) but they NEVER expected me to find out in such a blunt way. My dad was in the room with me so I was hoping he'd tell me that this was a joke or something. Unfortunately, the look on his said it all: "I'm sorry, Kim, but I didn't want you to find out this way." To add insult to injury, the doctor MUST'VE caught the expression on my face and instead of "backtracking" and taking a more sensitive route in telling us about transplant centers he just kept right on going.
In December of 1994 my family and I (which now consisted of a second sister who was also a preemie but was spared of health complications) went up to St. Louis, MO for an evaluation at their transplant center: St. Louis Children's Hospital. At first, the doctors thought that they could do some repair on my heart and just give me lungs. After a week's worth of tests (including a whole day with a psychologist) it was deemed that I would need a heart and a new lung (only listed for 1 because of my scoliosis). Since I was the first patient they'd ever had with this type of illness I became their "guinea pig". After that first visit they said, "come back in 6 months"...June of 1995 "come back in 6 months"....December of 1995 "we need to speed things up a bit."
The five of us moved to St. Louis in April of 1996 to wait for the call to arrive. Almost exactly two months later, on June 14th, it happened. Luckily, the first call was the real thing and not a false alarm. Since my donor was so much younger than me, I was able to get her heart and both lungs. Amazingly enough, the operation and recovery went very smoothly. So smooth that it scared my doctors!
From March of 2006-February of 2007 I experienced my first EVER bout of rejection--in my lungs. An experience I hope (and pray) that I NEVER have to go through again.
Has my transplant experience been perfect? Nope. But is my life better because of it? HELL YEAH! I wouldn't have lived to graduate high school and college (albeit, an AS degree but still). I wouldn't have lived to see my baby sister graduate high school. My now 10 and 9 year old cousins would've heard stories about their 'late cousin Kim.' Instead, I get to hang out with them. I've been able to compete in the U.S. Transplant Games. At the 2006 Games (yes, when I was still in rejection) I somehow won a bronze medal--GO ME! I look forward to competing in the 2008 U.S. Transplant Games in Pittsburgh.
I am so thankful that my still un-known donor family said YES in their moment of tragedy and I'm proud that I've been able to give these heart and lungs such a good home. :-)
Post Number: 83
|Posted on Friday, October 16, 2009 - 11:41 am: ||
I'm now 13 years post transplant and at the 2008 U.S. Transplant Games in Pittsburgh I won a Silver medal in the 1500m racewalk. I beat my previous record by 4 minutes and 11 seconds and the girl who won Gold only beat me by 18 seconds.
|Dx~Eisenmengers Syndrome and Primary Pulmonary Hypertension @ 2 yrs old |
Tallahassee, FL, US of A
I am a living, breathing, butt-kicking transplant recipient......any questions?
Post Number: 4
|Posted on Sunday, February 28, 2010 - 11:05 am: ||
Hello! My name is Jelena and I am 25 years old. I live in Croatia (Europe). I want to share my story with you,in short ways... I was born with heart disease, but doctors sent me to surgery when was already too late, because this kind of operations carried out up to 6 months of age. After that I lived normal like other girls of my age ... just it was not allowed to do sports. One night 4 years ago caught me weak, my blood oxygen dropped to 39% and the healthy people have about 100%. Over the years my heart damaged lungs. 4 years I lived with oxygen at maximum. And so one day doctors told me that I should make transplantation because I have no other choice. I waited on the organs 14 months and now has already passed the years since my transplant heart/double lung. My transplant was in january 30 in Vienna General Hospital (Austria, Europe). Although not all gone as expected (8 days after transplantation lost my left hand because came to thrombosis). I now enjoy life to the fullest, and happy with. I am so grateful for my new life and new experiences...!!! :-)
¤ My dReAm Is tO fLy OvEr tHe RaInBoW So hIgH ¤
Post Number: 12792
|Posted on Thursday, April 01, 2010 - 03:49 pm: ||
Thank you Jelena for sharing your story.
I know I have thanked you on our other threads here.
|Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH |
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