Hi, We are back from my daughter's evaluation. I have to say we had a nice trip. Everyone was really super nice. All the tests went smoothly and quickly. Except for the lab, it seems there's always a wait there even if you are second in line when they open the door. All other appointments seemed like they were there just waiting for us to come. I don't think we waited more than 5 minutes at any appt. and even at those that didn't require an appt. like the x-ray.
Our final day was with the doctor in clinic. Here's where the question arises, was it good or was it bad? He said he did not think Anna was ready for transplant. Everything looked too good. He did say that eventually she would need one just not now. Yea, I know. You don't want to do it too early, you want them to be healthy enough to survive but sick enough to need it. Your second life starts from that point on. Anna kind of expected it she said. Her pft's were at 40 the day they did them, her six minute walk was good. Her o2sat was at 98 and even after the walk it was 99. HIGHER than it ever is or has been in a long while, years. We told them that it was highly unusual. Reminded them that she had just gotten off IV antibiotics 4 days earlier. I mentioned her constant hospitalizations since August 2005. I think if we count up the days in hospital alone, it would probably be more than her being out of hospital, not to mention the number of days on IV antibiotics vs the number not on antibiotics. He mentioned that was a concern. So... they will continue to watch her, follow her, and will see her again in three months.
Too many emotions on my part I guess. We haven't really discussed it too much. Her feelings, other than she kind of expected it after her pft's and 6 minute walk. I want to think, like I do after every hospitalization and round of antibiotics that this is the one. The one that will rid her of what ever bug it is that keeps bringing her down. The one that will keep her well for a while. Each time a goal set, 3 months... just let her be well for 3 months, a semester, a semester would be good. She could at least get through one semester of school. A school year, a school year would be wonderful. My husband says we have to just take one day at a time. That this is good. We don't want her to have a transplant too early. I know that too. Hell if she didn't have to have one at all that would be ideal. As it is with everyone here. But it's not reality and there are those that need it. There are those out there that need it more right now, so it is good that she doesn't.
I guess that we have to just take it one day at a time and hope that she is still feeling well tomorrow.
I just want to say thanks for all the info you guys have given me. It really helped me to be prepared.
Liza
(mom of 2teen girls w/CF)
Our final day was with the doctor in clinic. Here's where the question arises, was it good or was it bad? He said he did not think Anna was ready for transplant. Everything looked too good. He did say that eventually she would need one just not now. Yea, I know. You don't want to do it too early, you want them to be healthy enough to survive but sick enough to need it. Your second life starts from that point on. Anna kind of expected it she said. Her pft's were at 40 the day they did them, her six minute walk was good. Her o2sat was at 98 and even after the walk it was 99. HIGHER than it ever is or has been in a long while, years. We told them that it was highly unusual. Reminded them that she had just gotten off IV antibiotics 4 days earlier. I mentioned her constant hospitalizations since August 2005. I think if we count up the days in hospital alone, it would probably be more than her being out of hospital, not to mention the number of days on IV antibiotics vs the number not on antibiotics. He mentioned that was a concern. So... they will continue to watch her, follow her, and will see her again in three months.
Too many emotions on my part I guess. We haven't really discussed it too much. Her feelings, other than she kind of expected it after her pft's and 6 minute walk. I want to think, like I do after every hospitalization and round of antibiotics that this is the one. The one that will rid her of what ever bug it is that keeps bringing her down. The one that will keep her well for a while. Each time a goal set, 3 months... just let her be well for 3 months, a semester, a semester would be good. She could at least get through one semester of school. A school year, a school year would be wonderful. My husband says we have to just take one day at a time. That this is good. We don't want her to have a transplant too early. I know that too. Hell if she didn't have to have one at all that would be ideal. As it is with everyone here. But it's not reality and there are those that need it. There are those out there that need it more right now, so it is good that she doesn't.
I guess that we have to just take it one day at a time and hope that she is still feeling well tomorrow.
I just want to say thanks for all the info you guys have given me. It really helped me to be prepared.
Liza
(mom of 2teen girls w/CF)