Listing date

Yesterday was a stressful day, but it's all been resolved now.

I never heard anything from TGH in the morning, after doing my blood work last Tuesday, so I thought I would try them again after the long weekend. Yesterday. When I contacted the tx coordinator she said that the earliest appointment she had for me to be listed (means I have to have an appointment with one of the surgeons to sign the release forms) was August 20th. I was upset at this, and confused. I had waited all this time, and now another 16 days....Anyhow, I did not argue with her, there was no point. I had to contact my clinic and my doctors that understood how sick I was and how bad things were getting. I was told however by that coordinator that if I was an inpatient at St.Mike's I would be listed ASAP. This made me angry. My doctors and I work hard at keeping me home, since they know that I have enough care at home, and that we are so close to the hospital, that it's a better place for me now. I am on IV's, and have been for months now, so I am certainly in the same position as if I was in the hospital.

I spent the day yesterday calling and trying to get someone to listen to me. I finally got a hold of our social worker at the CF clinic. She passed on the information to my doctors. They emailed me right away and agreed that waiting another 16 days was not the right thing for me to do. They would call TGH and try to work things out. They agreed that I am certainly sick enough to be at the hospital right now, but they realize my family can manage having me home on IV's. I really get the same care, but I get my own bed. That's always a plus.

So, to make this story short(er) the same coordinator called me this morning, and said that she made me an appointment for tomorrow afternoon to meet one of the surgeons and get listed. Tomorrow! Thank God. I am ready, and I am so happy that I have people behind me that can help get things moving. I did not want another 2 weeks wait....

Tomorrow is going to be a very exciting day. I cannot wait to get that pager and be that much closer to getting those lungs. I will be listed status 2, that being the highest status. Fantastic.