Trip Home From Cleveland

This is Joan's account of the trip home from Cleveland:

Cleveland Clinic gave us a tank of oxygen that when set at 3 litres would have taken Patti 6 hours. Good enough for the trip home. NOT!!!!!!!

We made a gas and potty stop in Ohio and Patti said, "I am getting plenty of oxygen let's turn it down to 1.5 litres so we are sure to have enough." So we did!

Just inside the PA border my Mom's SUV pulled me into the passing lane. I had all I could do to keep it going to a shadey rest area (No gas staion) just a rest area and weigh station. Patti called her husband Nate and thank god his parents were there at that time. We can use their AAA to get a tow and then get a rental car and come home. NOT!!! AAA says no way cause neither Dale nor Gina are with us and it isn't their vehicle. I can't get ahold of my mom she is in Canada and she is not answering her cell phone.

Patti has a great idea call 911. It works they are sending a squad with oxygen. Patti hangs up phone and her oxygen runs out. It was supposed to last 6 hours on 3 liters. Look back in this letter. To see what we did to make sure it would last. We left Cleveland at 3 or so and it is now 5:30.

These Voluteers of East Springfield PA are wonderful they get us a tow truck that will wait for payment and get us to Brown Memorial Hospital in Conneaut, OH where there is plenty of oxygen for Patti til we can get a rental car and then they are trading the empty tank for a brand new one so we are sure to have enough to get home. So did this work? NOT!!!! No car rental places in little town.

Nurse says call Enterprise they bring you a car no matter where you are. None close open. Dr. Namey (wonderful man) won't let me use money to make long distant calls at pay phone he makes them from hospital phone. Dr. Namey gets ahold of Enterprise at Erie Airport and hands me the phone. Yeah we are getting somewhere. (Step Dad says charge rental to Patti's credit card and he will reimburse her). Okay get car for 2 days cause they won't rent it one way and I have to get back to PA to get SUV when fixed. Good gonna get a car. WHAT? But Enterprise is suppose to bring the car to us that is what they advertise. They won't bring it to us cause we are in Ohio and they are in PA. We are in a different state. They were only 30 miles away for cryin' out loud and I had to go by there anyway so I could give them a ride back.

To make a long story a little bit longer how are we getting home? Yeah Daughter Barb and her husband Corey are on their way to get us. It is now 10:45 P.M. they get to Brown Memorial to get us at 2:15 A.M. Patti safe at home at about 9 A.M. and I got home around 11. Tired has heck but so much to do.

Not sure when we will be headed back to Cleveland. If Lungs and Liver don't come in in 4 weeks Patti has a follow up appointment then and we will be staying there until she gets the transplants. According to Docs she will most likely be back in having transplants before her follow up appointment.

So why was this Dr. Namey so addiment on making sure Patti got exactly what she needed. Even food when cafeteria was closed? He met a young girl with CF a couple of years ago and that youg girl passed away. When he heard Patti has CF that did it for him. Love that man forever! So did I mention that I got stuck in an elevator at the Holiday Inn for 20 minutes? That my friends is another story!

Joan