In April 2007 just before my 28th birthday I had to go into the hospital for what I thought was a routine "clean out". . .however, it turned out to be a hospital stay that changed my life.
I was already wearing O2 at night when I slept for quite some time but during the day I was my active, happy self. I was teaching acting/theater to youth in my community at my sister and I's performing arts studio, I rode my horse almost every day, I stayed active w/a gym membership and I could be seen riding all over town on my Yamaha 50cc Scooter. To the outside world I looked like my normal self. . .however no one including myself expected what happened next.
I had finished teaching 13 kids how to express themselves through creativity at the CBTA (Conservatory of Ballet and Theatrical Arts) and decided to ride my scooter down to visit my sister in law who worked at a medical supply store. I had been having more headaches than usual and while I was in visiting with her I mentioned it and we discussed ordering me an pulse oxymeter. She actually had one there and I had her check my O2 not expecting it to be all that low. . . . .
I immediately called my doctors clinic and I was transferred directly to my doctor. When I explained that my oxygen reading had just came up at 63 his response was short and urgent.
"So you are on your way up here to the hospital right?". ....
"No, actually I'm out riding my scooter. . ."
"You need to get up here as soon as possible."
This would be the beginning of the end. I was admitted and despite being on high levels of O2 my oxygen saturation was still low in the 80's. My pulmonary functions were very low (under 20%) and I should have already been approached about the option of a double lung transplant. . .but I had not. There is a reason, a reason I had to stay in isolation during every hospital stay, a reason I was not scheduled for clinic on the same day other CF patients were. . . .I was harboring a bacteria that struck fear in the CF community. I had been culturing CEPACIA since I was 14 years old. I felt like I had a scarlet letter stamped on me ever since. But life goes on & Cepacia never really effected the progression of CF and so I learned to live with it.
I pushed the idea of a lung transplant with my doctors. . .and I believe they were trying to do what they felt was best for me. . .to not encourage me and get my hopes up because they knew Cepacia would disqualify me as a candidate for the life saving procedure. They instead tried to prepare us to for the months ahead of me which could become my last. They didn't give us much hope. . . .6 months maybe more. My doctor had been open and honest with me and although I know in his heart he felt like I would not find a center willing to accept me he didn't take that hope away completely.
I was hospitalized over my Birthday and Bryan did a lot of planning and threw me a HUGE birthday party. All of my family came up to the 6th floor and celebrated with me. This was the first time most of them had seem me on oxygen and I am sure it was difficult. It was probably going to be the last birthday I celebrated and Bryan knew that so he made sure it was a good one. We didn't have a lot of money but Bryan took what we had and he asked me a simple question.
"If you could go anywhere (in the US) where do you want to go?. . .I know you have always wanted to go to NYC, NY. so if you want to go there I'll take you, I'll take you anywhere." then he added "Or if you would rather, I'll take you back to Hawaii"
I chose Hawaii :) While we were there Bryan made sure I got to do fun things that cost a little more money but would create memories that would be treasured forever. We went on the farm where LOST was filmed and even saw most of the cast and they waved at us~ I got to sit in the beach and watch Bryan snorkel. I love the water and beaches. Hawaii is my idea of Heaven on Earth. I had to drag my oxygen with me most of the time but that didn't even matter. . .This was quite possibly the last really happy moment in my life before my body was ravished by Cystic Fibrosis.
When we returned I decided to pursue the option of a lung transplant. My doctor in Idaho gave me a referral to see the CF specialist and lung transplant team at the University of Utah. We made the 3 hour drive with little hope knowing my Cepacia was going to be an issue. We met with Dr. Liou and he was less than personable. He explained in MUCH detail why the statistics (which he had collected and was VERY proud of) showed that due to my Cepacia I would not live long after transplant and possibly even live through the surgery. He left us in the room while he attended to another patient. .. .but with how long we sat waiting I began to wonder if he had gone out golfing. lol. In the meantime the social worker came in to speak with us. It was her words that stuck the most with me. . .it was what she said and HOW she said it that made me determined to prove the statistics wrong. She didn't tell me anything uplifting or incredibly insightful, she didn't encourage me or give me hope. She simply stated something that translated to me as "you have to accept that you're dying" but she didn't say those exact words.
"Hey Jamie, how are you doing?"
"I'm good" and that was an honest answer. Then there was a bit of an awkward pause and then she said it.
"Jamie, Do you feel like you've lived a good life?". . . . . WHAT?! What is that supposed to mean?
"Ummm, yeah but I don't feel like it's over, I still have more life I want to live" and honestly after she spoke those words I don't remember much else of the conversation because I was SHOCKED at the defeated tone in her voice and her patronizing words.
When Dr. Liou returned to my room I knew where this appointment was headed. . .nowhere. I had just wasted 3-4 hours of my day which according to the social worker I didn't have much time let alone to be wasting it. So I left. I felt defeated but that feeling quickly grew into determination. Determination to prove DR.L's statistics wrong.
I told Bryan that I wanted to pursue other transplant centers in the Country. I had seen online a list of Hospitals that allegedly do evaluate and accept Cepacia patients. We printed out the list and began contacting them. My Doctor in Idaho had my medical records prepared and ready to fax to any other hospital who requested them. The work began.
During this time I was in and out of the hospital every couple of months. My health was slipping away but my spirit could not be broken. My CO2 levels had been rising and when they tested them I was twice the normal range. Which the doctors were shocked that I was so alert and aware. High CO2 levels are dangerous and cause the body to become toxic and can induce confusion and coma. I barely noticed it and they remedied it by putting me on a bipap machine at night to help release the CO2 that was being trapped in my airways. That seemed to keep them controlled. . . still high, but stable. The search for a transplant hospital raged on.
I still taught my weekly acting classes. I had my Oxygen in a backpack and I went on as if life was the same. Even though I knew it was far from that. I directed the spring/summer production of BIG BAD a play about the big bad wolf who is put on trial for all the bad things he did to characters like red riding hood, the 3 little pigs and the boy who cried wolf. Bryan even stepped in at the last minute and played the wolf for us since my student who was cast was unable to perform.
My stamina was weakening daily. I became exhausted easily and I could not walk long distances without becoming extremely tired and frustrated. This broke Bryan's heart. I HATED being put in a wheelchair but I had no other option. It was the only way. While we were in Hawaii Bryan booked us Segway tours around the island. I LOVED it. The idea of a segway was perfect for someone like me. It gave me freedom to keep up while still keeping my independence. I didn't have to have someone push me around and I wasn't sitting so I didn't have to stare at other peoples butt's. I was eye level to everyone. . .this was my kind of way of getting around. When Bryan saw how much I loved them and when I succumbed to being put in a wheelchair He knew what I needed. He kept it a secret for quite some time. . .one night I couldn't bare all the pain, the fear and the rejection that I had received from many hospitals we had contacted. As he held me in his arms in whispered in my ear.
"I ordered you a segway. . .it should be here any day" It was hope and joy in a time where I was felt like I was losing my battle. It was the second wind of encouragement that I needed. It gave me my determination and mobility back. . .I was back and more fierce than before.
My segway was also a great way to talk to people about Cystic Fibrosis. Instead of being the "sick girl" although I was, I was also the only girl in the entire area that had a segway and that made people curious and they approached me with questions and I was able to educate people about Cystic Fibrosis and my journey to a lung transplant. It was just what I needed.
After many months of rejections from hospitals I started to wonder if Utah was right all along and that I would not be a candadate for lungs anywhere. Until I heard back from ONE. The University of North Carolina at Chapel Hill. They set an appointment up for me and required that I get my strain of Cepacia tested to see what "type" I culture. Preparations began for fundraising and plans started being made. My appoinment was set for October 2007. I needed to go into the hospital in Aug/Sept for another "clean out" I was so excited that a hospital was willing to evaluate me. Bryan was working construction with my Dad and my Uncle so his schedule was flexible enough to be up at the hospital with me much of the time. He was out on the job when I received a call to my cell phone.
"Am I speaking with Jamie Warren?" the voice on the phone asked. I replied yes. "We are calling to let you know that unfortunately we are not able to evaluate you for a transplant. In fact we cannot have you in our clinic at all. We fear your that your type of Cepacia could possibly create an outbreak and we cannot put our other patients at risk. We are sorry." the voice was then gone. I immediately called Bryan and I could barely speak at all. I think I got out only a few words that were even understandable through my sobbing.
"Bryan. . . .Carolina called (sobbing) they said . . . .no. . ... ." Bryan only response was
"I'm on my way". That night he stayed with me and held me tight and allowed me to cry. the terrible feeling of defeat and rejection was too much. I was strong, but not that strong, and I knew I didn't have to be.
Now what? That was honestly where I was at. I had called every center on the list. . .or had I? I looked over the list and realized there was one that I had missed. Pittsburgh. The University of Pittsburgh was on the list of hospitals that possibly do cepacia. It was my only hope. One small dim light in my dark tunnel of rejection after rejection. No matter how small it was. . .it was still hope.
CLICK ON MY TRANSPLANT STORY PART 2 PAGE
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