Saturday, August 21, 2010

Released from Cleveland Clinic

While I was in Cleveland in the hospital, the doctors scheduled a date to talk about my case and how they were going to present it to the board. They were to all gather together on August 4, 2006 and decide if they could do a double lung and liver transplant. If they couldn't do both, in the very least, I would need a double lung transplant as soon as possible. After the meeting, it would be about 10 days before we would hear from the board.

At this point, the biggest concern, from the doctor's point of view, was infection control. The infectious disease doctor was concerned about all of the antibiotics that I had been on since February 2005. Since that date, I had pretty much been on IV antibiotics for 3 weeks and off for one. Another doctor said that if they could keep the infections at bay, he wasn't too worried about weening me off of them. But, if infections keep setting in, and I have to go on stronger antibiotics, it could be a really bad thing.

On a good note for that day, I talked to Ally (girl I saw on Deal or No Deal) for about 45 minutes. It was good, I needed that. She was sweet and she answered all of my questions.

On August 4, 2006, we were told that there were about 50 doctors, nurses, coordinators, case workers, etc. in the meeting. They decided unanimously that they would go ahead with the double lung and liver transplant. The next step was to go through the Ohio State Board, but the doctors didn't see a problem with getting through to them, because the hospital requirements were higher than the board requirements. So, we took this as an almost definite yes, that I would soon be listed.

I was released from Cleveland Clinic on August 8, 2006 to finish IV antibiotic treatment at home and was to return for follow-up appointments in September. My Mom and I left in Grandma and Grandpa Croop's vehicle and almost immediately, it started making a weird noise but Mom wasn't sure what the noise was. We had just gotten over the Ohio boarder, into Pennsylvania, when we had to pull off the road into a rest area because the noise was worse and the vehicle was pulling to the left with the steering wheel turned completely towards me (the passenger seat). When we got out of the truck, it was smoking and the driver's side front tire was about falling off. We also noticed that the oxygen tank, that was given to me from the clinic, and was supposed to last until we got home, was almost empty. The total drive was about 6 hours and we were only about an hour into the drive. The oxygen wasn't going to last.

We tried calling Grandma and Grandpa, but Grandpa wasn't around and Grandma was in Canada with Aunt Kate and Uncle Tommy. I called Nate to let him know what was going on and Dale and Gina gave us their AAA number to try to get help. AAA would not help us because Dale and Gina were not with us and it wasn't their vehilce. Then, I ran out of oxygen. It was the one thing I desperatley needed, and it was gone.

I dialed 911 and told them that we were broke down, I have Cystic Fibrosis and was being evaluated for lung transplant, and I was out of oxygen. They sent EMT's and an ambulance. The EMT's got me hooked up to some oxygen and took us to Brown Memorial Hospital in Conneaut, Ohio so I could stay on oxygen until we could get a rental car or until someone could come get us. Grandma and Grandpa's vehicle was towed to a repair shop, where someone would pick it up when it was fixed.

When we got to the hospital, my Mom tried getting a rental car, but most places were closed, and the one that was open was 30 miles away, in PA, and they wouldn't travel state-to-state to bring a car to us. The ER doctor (Dr. Namey) did everything he could think of to help us. He tried to help Mom get a rental car, he got me in the hospital and hooked up to oxygen quickly, and he found a way to get me some food even though the cafeteria was closed. He was really a wonderful man, and eventually, we learned why he was so willing to help. He told us that he had a CF patient a few years prior who eventually got really sick and passed. He wanted, more than ever, to see that I was okay and that I made it out of there safely. Mom eventually got Barb (my sister) and her husband to come get us. In the meantime, Mom slept in the waiting room and I was on a stretcher in the ER. Dr. Namey kept checking on me to make sure I was okay and I slept on and off.

My sister and Corey got to the hospital around 2 in the morning and I finally made it home safely at 9 in the morning. What was supposed to take only six hours or so to get home, ended up being an 18 hour trip! I was exhausted, but glad that things worked out. I dreaded another trip to Cleveland, but I knew that it would eventually happen.

We still hadn't gotten in contact with Grandpa by mid-morning, so I okayed the repair shop to fix the vehicle and I gave them my credit card number to pay for it. The vehicle needed new ball joints, the axle broke, and it needed an alignment. It came to just over $1,000 for the repairs. All of my and my Mom's stuff was in the truck and we didn't get it back until that Friday when Mom, Nate, and Alex (Nate's cousin) went to get the vehicle.

It was all quite an adventure, that I didn't care to take again. I was happy to be home and see Nate and Brady. I felt better after my admission to the hospital, but I knew that it would take the transplants for me to really feel better and get back to living my life. I continued on my antibiotics at home for another week and I scheduled my next appointments in Cleveland for September 8. The doctors were positive that I would be listed and have the transplants by that time...but it just wasn't to be.

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