Background

Monday April 14, 2008
background
I guess I'll start at the beginning and give some background information. I'll try to make it short, but its still going to be long!

I've been riding horses since I was little. I still have my first horse High Chief. I got him when I was 3yo and he was 2yo. I played soccer, did ballet and tap dancing, rode horses and competed in rodeos and barrel races. Also do fishing, canoing, 4 wheelers, biking, going to movies, out to eat, and love to shop for new horse stuff, lol.

I graduated high school in May 2002. The following Monday I started college, majoring in nursing and working towards my BSN. I also had a part time job at a doctor's office. And in summers I worked in the hay fields and hay barns to store hay for the winter for my horses.

I've always been in tip top shape and able to do anything I wanted. Then in Feb. 2006 I started having problems breathing. At first it wasn't that bad. I thought I just had a respiratory cold that was going around. Took some antibiotics and went on with life. A few weeks later it wasn't getting better. So I decided that I was just getting out of shape. Being a college student and not playing soccer anymore, I thought this was the problem. So at graining time, instead of walking from pasture to pasture, barn to barn, and what not, I started jogging. This didn't help.

Then slowly things that use to be very easy I noticed were getting harder. Walking from the hay barn to horse barn left me breathing hard. In May 2006 I went to a barrel race in Buna. I made my run on Ginger, had a 16.7 second run, but hit the 2nd barrel. When I came out of the arena I couldn't catch my breath and was so depleted of air that I had to be lead on my mare back to my horse trailer. I had to have my Dad un-saddle and cool out my horse while I sat on the ground gasping for breath.

That Monday I was taken to the doctor. He thought it was asthma, put me on a medrol dose pack and reffered me to an asthma/allergy specialist. I went to the asthma doctor 2 weeks later for my appointment. He immediately put me in the hospital for 3 days on steroids and around the clock breathing treatments.

During the summer I was placed on all types of inhalers and high doses of prednisone to try to help my breathing and stop the wheezing. Nothing helped. I did allergy skin and blood testing, that came up empty handed. I was then sent to a pulmonologist that wouldn't even order a chest xray or CT scan. This whole time I just knew it wasn't asthma and breathing was getting worse.

I went back to my local doctor and he sent me to see a pulmonologist in Houston. This doctor told me that he didn't know what was wrong but that he would find out what was wrong. That same day I had a chest xray, blood work, and chest CT done. I got a call the next day saying that they found something on the CT scan and for me to pack a bag that I would be admitted to the hospital. It was a blood clot in my lung and they noticed something not right with my heart. I was placed on blood thinners and had EKGs and a echocardiogram done. This was in July 2006. The doctor said he thought all the breathing problems were related to the blood clot in my lung and that I needed to see a cardiologist about my heart asap and would be moved from Herman Memorial SouthWest to St. Luke's to see a cardiologist that had experience with my type of heart defect. With further testing before I was transferred they found that I had a blood clot behind my right knee and one in my left ankle. I was moved to St. Lukes. Since I had to change hospitals, I had to get a new pulmonologist as well. I had lots more tests done. And it was determined that I had a congenital heart defect known as partial anomalous pulmonary venous return to the superior vena cava. Which is rare and made even rarer by the fact that I didn't have any holes. I had 2 anomalous veins that were as big as the vena cava and they needed to clamp one off and re-route the other to my left atruim. I was re-circulating 90% of my blood instead of it getting pumped out to the body. And was told that if I didn't have surgery to correct it, it would cause more problems and would eventually leave me in a wheel chair as I wouldn't be able to breathe to walk across the room to turn on a light switch. So heart surgery was scheduled for Dec. 21 after I was done with the college semester.

My breathing kept going down hill. Around Thanksgiving I could no longer keep up with the nurses during my clinical rotations and couldn't concentrate during lectures to write notes. My heart rate was really fast as well. Mom picked me up and took me to St. Luke's. I was admitted and put in ICU. They put me on an IV drip to control my heart rate. I had a toilet next to the bed and every time I got out of bed to use it my heart rate would go up to 180 beats a minute and at rest if was 125 beats a minute. I only had 2 weeks left of the college semester, but I couldn't finish. Finally December came and I was admitted a couple days before the day of my heart surgery was to take place. My breathing was so bad that they were afraid to put me under anesthesia that once they put me on a breathing machine they wouldn't be able to wean me off of it. My cardiologist and heart surgeon got together and decided that I did not have asthma. So the cardiologist had another pulmonologist see me, Dr. Seethamraju, but he really didn't get to do much as the surgeon moved me to Texas Children's so that a pulmonologist that he worked with and trusted could see me. Dr. Moore confirmed that I didn't have asthma and did more testing on me. He also put me on oxygen 24/7. He didn't want to diagnose me until he talked my case over with his co-worker so sent me home for the holiday.

Jan. 3, 2007 I went back to see Dr. Moore. He told me I had a very rare lung disease called Bronchiolitis Obliterans. Its common for someone to have this post lung transplant, and is also known as chronic rejection in lung transplant patients. It is very rare to have in your own lungs, and especially so at my age of 22yo, at this time I was 23yo. I was told that I would need a lung transplant and that there was no cure for this lung disease. I was then sent back to Dr. Seethamraju. He said that my lung function was currently 28%. He wanted to get me evaluated for transplant and placed on the waiting list asap and then try other things to help my breathing. So a week later I did all the evaluation test and then was started on experimental treatment of IVIG. I had to get IVIG 4 days in a row once a month. Feb. 15, 2007 I was officially listed on the transplant waiting list for double lung. My lung function then was 14%. With the help of IVIG the progression of the BO was slowed down. By this time I was bed ridden. I also used a Bi-Pap machine to help me breathe.

The end of May I was admitted to The Methodist Hospital with kidney stones. Dr. Harish (Seethamraju), said that I would be discharged home the next day. Then on June 4, 2007 at 3:15am the on-call lung coordinator called me and said they had a set of lungs for me! I went into surgery at 1:45pm and was out of surgery at 7pm. The lungs looked wonderful and I'm told were a perfect match for me! The donor is a male, around my age, a little taller than me, and weighed more than I did. I also had my heart surgery and they also removed the 3rd lung that I had. It was about the size of a grape fruit.

Recovery was hard as I developed Gastroparesis from the transplant surgery. Which means my stomach nerve was damaged during surgery and left me unable to digest things correctly. So I had a Nissen Fundoplication and Plyoroplasty done to help with this. Later I had a feeding tube placed to help me get nutrition as I couldn't eat much without getting sick and had lost a lot of weight and got down to 89 lbs. Then I had gall bladder problems and had to have it removed. I had 2 drains from this surgery and when the 2nd one was removed it tore a hole in my common duct bile and leaked bile into my abdomen and caused peritonitis. So I had to have 2 biliary stents placed. Later in Dec. 2007 I had them removed. Also about August 2007 the anastomosis site where the donor lung attached to my bronchial tube on the left side, totally collapsed and left me breathing with just my right lung. I went into surgery where the doctor couldn't help me. So I was woke up and moved to another OR with my lung transplant doctor and surgeon where they found a small opening with a wire and inflated the lung and placed a stent in it. I then had to get a bronchoscopy every couple of weeks to get the stent and lungs cleaned out. I've also had a fungal infection, called Rhizopus, which was taken care of with fungal medication. And have also dealt with double pneumonia.

In Feb. 2008 I had to have my feeding tube changed out as it was causing a lot of pain. Then in March 2008 I finally was able to have the pulmonary stent removed from my left bronchial tube. Currently I have 97% lung function and my new lungs are doing very well! I take about 40 pills a day, luckily I can crush them and put them down my J-tube (feeding tube) so I don't have to swallow them all. And my gastroparesis is getting better. I had a gastric empty study done a few months ago and it showed that my stomach is working normally now. But I will most likely always have some digesting problems and need to eat foods that are easily digested. I still see doctors frequently and have blood work and pulmonary function test done to monitor my lungs and other things.

I bought a yearling appaloosa gelding around September 2007 while I was still in the hospital. And my dog Tinkerbell died a few months after my surgery. I have since got a new dog, Harley, a rat terrier/chihuahua mix. And Ginger, my finished barrel horse got hurt in Feb. running in the mud in the pasture.

I've been riding Alleyway and Cherokee quite a bit lately. And was so happy when I was finally cleared in middle Jan. this year to ride faster than a walk and he also said that I can run barrels again! Now I just have to get a horse going on barrels and get them and myself in shape!

I can ride the horses. But my parents feed and hay them and clean their stalls so that I don't get the dust or pick up a fungus in my lungs.

I have named my lungs Thomas and Mack from the famous NFR arena in Las Vegas. I've also got myself and my donor's family a butterfly necklace to honor him and his wonderful gift to me. A butterfly sorta looks like a set of lungs and also represents a beautiful change.

Right now things are going well and I can't wait to get back to running at barrel races! I feel good and am getting more and more check ups as outpatients rather than inpatients.