Hello, my name is Luba this is my story.

When I was born in 1974, I went for a check-up at 6 weeks old. After listening to my heart for quite a while the pediatrician sent my mom straight to Children’s Hospital in Hollywood, California. I was diagnosed with a rare heart disorder & lung disease. They called it Tricuspid Atresia with Hypo plastic Right Ventricle and Pulmonary Hypertension. Today it’s now called Eisenmenger’s Syndrome and I had Pulmonary Hypertension secondary to Eisenmenger’s. My parents were advised not to get close to their little girl since babies with my disease usually died by the age of 5. Dr. Takahashi at Children’s Hospital wanted to put a shunt in my heart but it had to wait until I was 2 years old. By the time I was 2, my heart was too developed to even try a shunt. So my mother took me home and prayed to the Lord, “Okay God I will try to do all I can but you have to do the rest.” Each year I went in for my check-up they warned mom that I may not live to see the next year. By the time I reached the age of 12 the doctors threw their hands up and said, “We don’t know how she’s alive. We don’t know what to tell you anymore. She is not fitting the pattern in our textbooks!”

I grew up like any normal child did. I went to school, played with friends and went to church. I often thought that since God was on my side that I’d grow up to be 100 years old someday. I still look forward to that day. When I was 19 my mom and I went to Loma Linda University to see about a surgery that could be done to correct my problem. Dr. Leonard Bailey who is a world-known heart expert said “If it ain’t broke, don’t fix it.”  I was told, “We are sorry but there is no surgery that can correct your heart because your pulmonary hypertension would kill you the minute we tried. Your only option would be a heart & double lung transplant and you may need it in the future.” Talk about bad news! I pushed it out of my mind because for a 19 year old it was too much to bear at the time. I also didn’t believe they knew what they were talking about! I was too healthy, regardless and I felt too good!

In 1998 I began dating my husband, Nick Kobzeff and we were married in December of 1999. During that year I was very stressed with wedding plans and work. There were many times I was short of breath and I almost fainted once at work. Everything would go dark and I had to concentrate on breathing and getting it back to normal. I mistook it for anxiety, lack of sleep or the flu. Little did I know a big battle was being waged inside of my lungs. 6 weeks into our young marriage (I just turned 26) I came home from work one Friday and was feeling very tired. It went on into the following Monday and I called my mom to take me to the emergency room. I couldn’t breathe and I was so weak she had to push me by wheelchair into the E.R. The minute they checked my oxygen saturation they pushed me into a room and hooked me up to the oxygen in the wall. My saturation was down to 56%. The nurses thought I was having a heart attack. I was admitted into the hospital and a week later I was told my lungs were failing. It was time to consider a heart/lung transplant. I was in disbelief and it took a few days to sink in. I was released and sent home on liquid oxygen, which were 4 big trashcan sized tanks. I went in for a check-up 2 months later and was told my lungs would only keep deteriorating and my heart may start to go also. At that moment my whole world shattered. It was like all the windows of my heart just broke. There went my dreams, my marriage, and my life. It all went up in smoke at that visit. I decided to try the transplant even though I was terrified of it. I went through all the necessary testing and was listed on October 19^th, 2000 at UCSD Medical Center in San Diego, California.

I was told by Dr.Gordon Yung who is the transplant doctor at UCSD that my wait may be up to 4 years because of the scarcity of heart/lungs. Less than 40 are done in the whole United States each year. I was hopeful that maybe I would get lucky and the transplant would come sooner than that. It was hard to wait for the possibility that I may get a second chance at my still very young life. It was like waiting for the winning lottery numbers to be drawn in your favor. Every time the phone rang for the first year I hoped it was the “call” that would save my life.

My husband was a Godsend to me. What he went through emotionally and mentally I’ll never know. We both had our good & bad days. We went thru depression, anger, anxiety, numbness and every other possible emotion there probably is! We could be experts by now. There were nights I cried in my bed and just willed myself to die. I didn’t want to be a nothing-an unproductive member of society the rest of my short life. One night I asked God to just take me to end my suffering. Then a while later a tiny voice said to me in my mind, “Don’t cry Luba. Everything will be okay”. I took it to be the voice of God talking to me and I put my faith in that sentence. As it turned out, everything was okay in the end. Every time we went somewhere I had to bring portable oxygen tanks with me. The car was usually loaded down since I was on high-flow oxygen at what eventually topped out at about 16 liters. Eventually I ended-up staying home and rarely went out because I became tired within the first hour.

 I had a pet cockatiel named Cookie that was my constant friend. Cookie was such a baby though; she wanted you to do everything for her! She loved playing on the couch! She’d climb up and down for hours and then find little caves to crawl into. She was always interested in the oxygen tanks. She made them her private gym. Once she leaned over too far and fell between the tanks & the couch. That was the last time she tried that! I had her since she was a baby (about 8 or 9 years). My house was my world and the Internet was my window to the outside.  In August of 2000 I started a support group called Heart-Lung Transplant Support Group. It was mainly so I could meet others who need transplants or had received one. The group has grown fast and at the time of this story, we currently have 362 members. We have members with all kinds of diseases including Eisenmenger’s, Bronchiectasis, Alpha-1, COPD and Emphysema. We are a very caring group, friendly, and many members are just full of knowledge. We help each other and give support as much as we can. 

In January of 2001 I began going downhill very fast. They gave me about 2 months to live. There were new therapies coming out for pulmonary hypertension and I decided to try it! UCSD put me on a relatively new intravenous drug at that time called Flolan. It saved my life! I took the Flolan by catheter in my neck and a pump pushed the medicine in 24 hours a day, 7 days a week. The Flolan had to be kept cold so I had to keep icepacks in the pouch I wore. Flolan worked by allowing my lungs to absorb more oxygen when I was breathing. It was my only option and it turned out to work very well for me. It was considered the “bridge” that helped patients to live (hopefully) long enough until transplant came. My legs also started turning black since the blood flow was not getting to them. I would wake-up every night with leg pains and I’d have to manually put them over the side of the bed to help the blood flow back into them. My legs also had edema because of the fluid they were holding. I took Lasix for that and 120mgs of Morphine 3 times daily. I eventually went down to 60mgs of Morphine twice daily. If I forgot to take my medicine I was just no good for the day.

 

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