GREAT STRIDES 2010 on MAY 15, at the CLEVELAND METROPARKS ZOO. Registration is at 8:00AM that morning.

Thanks for checking out my Great Strides page. My name is Tara, I'm 29 years old and I have Cystic Fibrosis (CF). Due to complications of CF I had to have a double lung transplant when I was 11 years old. Because I have new lungs, which is the biggest problem with CF, most people think that means I am cured. But I still have CF just not in my lungs. CF affects your entire respiratory system along with your digestive system. I have bad sinuses because of my CF and have had 5 sinus surgeries since 2000, with my most recent on March 24, 2010. I also have to take enzymes every time I eat to make sure I digest my food properly. And I have developed diabetes due to CF. On top of that I take many medications every day. Some are so I do not reject my lungs. Others are for the side affects that happen because of my rejection medications. Below you can read my story. What I went through with my CF and a little about my transplant.

Please join me this year to help find a cure for the many people I know with CF and to honor the many people, including my sister, that have died of CF.

Thanks Tara :-)

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When I was first born all seemed well but very soon I began wheezing. My mom knew something was wrong with me but the doctor kept telling her she was just a new mother and I was ok. Because every time she would take me into the doctor I would stop wheezing. Even at that age I was difficult! Well, finally one day when I was around 6 months old I was at a check up and I began wheezing. My doctor panicked and told my parents to take me straight to the ER at the local hospital. He thought I had water on my lungs. After it came back that there was no water on my lungs they weren’t sure what was wrong with me. Finally one of the respiratory doctors had an idea. Test her for Cystic Fibrosis. My parents had never heard of CF and had no clue what it was or what it meant.

After I was tested and it came back positive I was sent to Rainbow’s Babies and Children’s Hospital in Cleveland. I was admitted into the hospital so my parents could begin learning all the new treatments they were going to have to start giving me. I was also given another sweat test just to make sure and it too confirmed my CF. After a few days in the hospital I got to go home. My parents had been taught about all the treatments I would need because of my CF and they were also told it was very likely I would never live long enough to be a teenager. After coming home my health seemed pretty stable. I started school just like every other kid. In between first and second grade I started coughing more then I used to and about 2 weeks into second grade my doctor decided it was time for my first hospital stay for a clean out. This consisted of a 2 week hospital stay where I would get IV antibiotics to help clear up the infections that had settled in my lungs. I also received extra aerosols and PD’s or Postural Drainage, which means the respiratory therapist pounded on me for 45 minutes, 4 times a day, to try and break lose the mucus in my lungs.

About a year after that stay at the beginning of third grade I was admitted into the hospital again. This time I had pneumonia. I ended up being in the hospital for 3 weeks. The summer I was going into fifth grade I had been in and out of the hospital a lot. And it was decided that I should have a port placed so that I could receive IV antibiotics at home. Along with a nutrition supplement to help me gain weight. At that time the nutrition supplement I was being put on was a trial study. It went well. Although I was still pretty sick I didn’t have as many hospital stays because I could do all the IV meds at home.

The summer of 1991 was a bad one. I was very sick and I was having a lot of trouble breathing. But every summer since 1988 I had went to a camp for kids with CF. I was afraid if I told my parents that I was having trouble breathing I wouldn’t be allowed to go to camp. So I just suffered through and made it to camp in the middle of August 1991. I had fun at camp even though I couldn’t breathe. My birthday was just a few days after camp was over so the day after my 11th birthday I finally told my parents how sick I actually felt. They called the doctor and I was admitted into the hospital. It turned out I had walking pneumonia and my pulse ox was only 54%. Your pulse ox is the percentage of your lungs you are using to breath, a normal person would be around 96-100% which is where mine runs now. So basically I needed oxygen really, really bad!

I ended up being in the hospital for 8 ½ weeks. During this 8 ½ week stay my doctor came in and talked with my parents. He told my parents that I was dying. And if I was lucky I might live another year. But a new procedure was being done for people with CF at the hospital down the street. And that procedure was a double lung transplant (tx). After much prayer my parents decided that was my only chance and told the doctor yes. Then it was time to tell me.

When they first told me I said no! When I was really little I had always said that if finding a cure for CF meant having surgery or getting a shot I didn’t want it. And for some reason all that came flooding back when they told me. But I had already had numerous shots and had a surgery so I finally said yes. They told me I would have to go through a lot of tests and then I would be put on a list. I also had to wait for someone else to die so that I could live. After they told me all this I looked at them and said, “If I die before I get new lungs, please promise me you will donate my organs so that someone else can live.” My parents promised me they would.

Well I began going through all the tests. I was placed on the transplant waiting list at the beginning of October 1991. After being placed on the list we found out that the Cleveland Clinic had only done 2 other lung tx’s on patients with CF. One was still alive and the other died on the operating table. While I was in the hospital they did number 3 and 4. Number 3 was only 18 and he was so excited he could breathe after being released from the hospital he decided to go out with friends and got an infection which turned into pneumonia. He died just 3 weeks after his surgery. And number 4 did really good.

When I was finally sent home from the hospital I had to come home on oxygen and IV meds. But at least I was home. I didn’t go back to school. I was too sick. So I had a home tutor so that I could keep up with my class. Now it was a waiting game. We could get the call anytime of any day. But the whole time I thought one day I would just wake up and be better. I never though I would need the lungs. Until about a week before Thanksgiving. While I had been in the hospital my friend Becky with CF also was put on the tx list. She was listed 1 week before me. And 1 week before Thanksgiving the phone rang and it was the hospital. They called and told my parents that Becky had died. That was the first time I lost a friend with CF and that is when it hit me that I could die. And that my only hope was those new lungs. And I had to fight and not give up until we got that call. And that’s what I did.

On the morning of December 23, 1991, I woke up and I was really sick again. Even on the oxygen I was having trouble breathing. My parents were really worried about me and didn’t know how much longer I could hang on. My mom was debating on whether she should call my doctor or let me stay home to die in peace. Around noon we got a call from the lung tx coordinator at the Cleveland Clinic. She said hi my name is Mary Pearl and I just wanted to let you know I am the new tx coordinator and if a set of lungs comes in I will be the one calling you. My mom was like ok that was odd. Well around 4 we got another call. Once again it was Mary Pearl. She said we have a possible donor, stay home and don’t go anywhere. We will call back around 8pm to let you know if the surgery is a go. See we had already had one false call and I made it all the way to the operating room before they decided the lungs were no good. So they were not going to make us wait at the hospital this time. And since it only took 45 minutes to drive to the hospital they let us wait at home this time. My parents began making calls to family and friends. My grandparents came over and so did Santa and Mrs. Claus. They were planning on coming over on Christmas Eve to bring me and my sisters gifts. So they decided to make the trip from the North Pole a day early. We sat around waiting for the phone call. At least opening gifts from Santa helped the time pass. We had such a good community that donated gifts to me and my sisters so that we could have a good Christmas that year.

Well right around 8 the phone rang. Everyone froze. We knew this was it. We would soon find out if I was going to get lungs for Christmas. My dad answered the phone and after a short conversation he hung up the phone and looked at all of us and said it’s a go.

So we hurried off to the hospital. We got there just after 9pm and I was taken right up to the ICU. They began drawing blood and putting in an IV along with an artery line. And before we knew it I was being wheeled to the OR. I told my parents bye and I didn’t know if I would ever see them on this earth again. I was put on the operating table and they began hooking up lines to me. They talked to me a little and told me they were getting ready to put the medicine in my IV that would make me go to sleep. So I looked up at the clock on the OR wall. And I will never forget what it said. In big red letters was 11:55PM which meant by the time they started my surgery it would be after midnight. So as I drifted off to sleep I knew I was getting my lungs on Christmas Eve. The best Christmas gift I could ever ask for.

I came out of surgery around 6:30am. All seemed well. About a half hour after surgery all my monitors started going crazy and nurses and doctors came running into my room. My mom said they began giving me blood. I needed it so fast the nurses were squeezing the bags to get it in me. I was rushed back to surgery. They are not sure which happened. But either they missed a spot when they were stitching me up or one of my internal stitches came lose. And because of that I started bleeding very fast. Once they re-stitched me I was fine.

I don’t remember any of Christmas Eve that year. And I only have a couple memories of Christmas Day. When I finally woke up I was hooked up to a ventilator to help me breath. I also had 4 chest tubes, and several IV lines hooked up to me. I can’t remember exact times but I think I was on the ventilator for about 3 days. I remember it being horrible. I couldn’t talk because I had a tube down my throat. I also couldn’t eat or drink. I had to communicate by pointing to letters on a board and spell out what I was trying to say. I kept asking for orange juice and to take it out! But it didn’t take long for my requests to come true. I was on oxygen for a little while after I was off the ventilator. I was so used to being on oxygen when the doctors wanted to take me off of it I freaked out! So they didn’t want to cause more problems so they left me on it. But they didn’t tell me that every time a nurse would come in my room they were turning it down. Until they had no oxygen going into me at all and it was just air. So the next time they tried to take me off of it and I said no, they told me I hadn’t been using oxygen all day. I couldn’t believe it. So I let them take it off me and I COULD BREATH!!!!! It was the best feeling in the whole world.

I was in the ICU for about 3 weeks. First off I had a staph infection that attached itself to my sternum. You see my old lungs were so full of crap that when they put the first new lung in my old lung that was still inside me spilled all its crap out into my new lung and my chest cavity. Which caused me to stop breathing and I had to be hooked up to the heart lung machine. Basically that means I died. But once they got my other new lung in me they started working and moving the junk around and I began breathing on my own again. The healing process for that was very long. My chest had to heal open in the center and the dressing had to be changed for months even after I came home. I think it took a total of 6 months to heal if I remember right.

The second reason I was in ICU so long is because the day before I was supposed to leave ICU I was going down for a CAT scan to see how my new lungs were doing. Before I left my room that morning a lot of bad things happened. First off I was having trouble breathing but I didn’t want to tell my nurse. (Yes I now know that was very stupid). Then my nurse’s aid came in to help me get up to use the bathroom and she picked up something off the bed and said “Do you need this?” I looked over and she was holding my central line. I said yes that is my central line! A central line is like an IV but it is placed into an artery in the neck or chest. This one was in my chest and had just been place the day before. And it turned out that the doctor that put it in used an adult sized catheter and didn’t stitch it in. The central line falling out meant that I couldn’t have morphine for the first time since I had the transplant. So not only could I not breathe, I was in pain too. And because I didn’t feel good I asked my respiratory therapist not to suction me that day and like an idiot she listened! I was 11, she never should have listened to me on something like that. So I went down to radiology to get my CAT scan. They laid me down on the bed and I had 1 pillow. I asked if I could have another because I was having a little trouble breathing laying flat. So they gave me another. I kept asking for another pillow until I was basically sitting up and I still could not breathe. What happened next is truly what I think was an out of body experience. I remember hearing over the hospital loud speaker. Code blue to radiology STAT! Then I remember my nurse jumping up on my bed and doing CPR on me, but I remember looking down on this. She was pressing on my chest and I was being bagged while I was being wheeled up to my ICU room. Next thing I know I am in my ICU room and waking up to being suctioned. Supposedly I was unconscious the entire time and not breathing. But I remember looking down on it. It was really weird. The problem ended up being that I just had too much mucus in my air way and I needed suctioned. Meaning if my respiratory therapist would have done what she was supposed to that morning and not listened to me I might have not quit breathing. But I also should have told my nurse that I was having trouble breathing.

When I was finally moved out of ICU I was put on the adult transplant floor. My transplant center did not have a pediatric transplant unit because they had never done a kid before. I was still having problems with my staph infection on my sternum so I was finally taken back into surgery. They basically went in and cleaned me out. They first discovered the infection just days after my transplant, and at that time they just pulled my staples out and opened up my chest. Yes they did that part with me awake. But if they would have tried to clean me out while I was awake it would have hurt really bad. My doctor tried to clean it out once with me awake and after crying in pain the decision was made to take me into the OR.

Then about 6 weeks after surgery they were going to finally send me home. But about 4 days before my release day I started having trouble breathing again. This time I told my nurse right away. I had learned my lesson. My pulse ox had dropped from 100% down to 90%. So I was put back on oxygen and a bronchoscopy was scheduled for the next day. When you have a bronchosopy the doctor takes a bronchoscope and goes down through either your month or nose and checks your lungs. What they discovered during my bronch was that I had scar tissue growing over my bronchiole tubes cutting off my air way. It was a simple fix. They just had to laser the scar tissue off. And after an 8 week stay in the hospital I was finally sent home on February 19, 1992. I was good for about 3 weeks, because the scar tissue began happening every 4 weeks for 9 months. It became a routine. It’s been 4 weeks. I would have trouble breathing. Then I would be admitted for outpatient surgery and have the scar tissue lasered off.

I was on home IV meds for almost 6 months from the time the staph infection was found until I was finally able to get rid of it. I did have a few bouts of acute rejection. Nothing serious though. I would have to go into the hospital for 3 days and receive high doses of steroids. I was very fortunate that I never really had anything serious happen to me. I went back to school in the fall of 1992. Because of my home tutor I was able to keep up with all my school work and I was able to be promoted to the 7th grade when I went back to school. I would have a hospital stay here and there. Every once and a while I would get a cold and have to be hospitalized for a few days so I could get strong IV meds to make me feel better.

I have accomplished so much in my life because of my organ donor Christina. I graduated high school, I got married, and I got to meet my nephew and niece. There have been challenges along the way but nothing too hard for me to handle. I have battled CMV, MRSA and even End Stage Renal Disease and have won. Although I still have Cystic Fibrosis in the rest of my respiratory system and in all of my digestive system, my new lungs have taken care of my biggest problem. Everyday I battle with my health, but every day that I just get out of bed I have won the battle.