coltsfan715
New member
Been a rough few days but this did put a smile on my face. Thank you for sharing. I am glad that she is continuing to do well. Everyone deserves to have a fighting chance.
Lindsey
Lindsey
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Patiently Waiting for a Call
- Thread starter cnsky54RRT
- Start date
coltsfan715
New member
Been a rough few days but this did put a smile on my face. Thank you for sharing. I am glad that she is continuing to do well. Everyone deserves to have a fighting chance.
Lindsey
Lindsey
coltsfan715
New member
Been a rough few days but this did put a smile on my face. Thank you for sharing. I am glad that she is continuing to do well. Everyone deserves to have a fighting chance.
<br />
<br />Lindsey
<br />
<br />Lindsey
cnsky54RRT
New member
Just like the Tango, sometimes it is two steps forward and one back. Seven and a half weeks with the new lungs, and I have to report that Heather crashed and burned this morning at 0430 and is back in ICU on a ventilator. The whole story isn't quite clear because I am not there with her. This last week she has had some fluid building up in her chest, so she moved back into the hospital to get a pair of chest tubes placed again. Then yesterday they thought to give her some albumin to build up her body fluids, and things went wrong after that. Heart rate up, breathing unsteady, back on the breathing machine. No complaint with the lungs, but a chance that she has had a reaction to the albumin, which she has never received before. Doctors say it could also be rejection, but it seems just too much a coincidence. Right now they are treating it as an allergic reaction (she DOES have a lot of allergies, especially to the antibiotics and common meds that CFers use). Her family is with her and she has a great medical team, so I'm confident they will figure this out. She has come too far to throw in any towels now!
cnsky54RRT
New member
Just like the Tango, sometimes it is two steps forward and one back. Seven and a half weeks with the new lungs, and I have to report that Heather crashed and burned this morning at 0430 and is back in ICU on a ventilator. The whole story isn't quite clear because I am not there with her. This last week she has had some fluid building up in her chest, so she moved back into the hospital to get a pair of chest tubes placed again. Then yesterday they thought to give her some albumin to build up her body fluids, and things went wrong after that. Heart rate up, breathing unsteady, back on the breathing machine. No complaint with the lungs, but a chance that she has had a reaction to the albumin, which she has never received before. Doctors say it could also be rejection, but it seems just too much a coincidence. Right now they are treating it as an allergic reaction (she DOES have a lot of allergies, especially to the antibiotics and common meds that CFers use). Her family is with her and she has a great medical team, so I'm confident they will figure this out. She has come too far to throw in any towels now!
cnsky54RRT
New member
Just like the Tango, sometimes it is two steps forward and one back. Seven and a half weeks with the new lungs, and I have to report that Heather crashed and burned this morning at 0430 and is back in ICU on a ventilator. The whole story isn't quite clear because I am not there with her. This last week she has had some fluid building up in her chest, so she moved back into the hospital to get a pair of chest tubes placed again. Then yesterday they thought to give her some albumin to build up her body fluids, and things went wrong after that. Heart rate up, breathing unsteady, back on the breathing machine. No complaint with the lungs, but a chance that she has had a reaction to the albumin, which she has never received before. Doctors say it could also be rejection, but it seems just too much a coincidence. Right now they are treating it as an allergic reaction (she DOES have a lot of allergies, especially to the antibiotics and common meds that CFers use). Her family is with her and she has a great medical team, so I'm confident they will figure this out. She has come too far to throw in any towels now!
musclemania70
New member
Praying for her..
musclemania70
New member
Praying for her..
musclemania70
New member
Praying for her..
cnsky54RRT
New member
I think now they have agreed that it was an overwhelming anaphylactic reaction to the albumin. Her kidneys have stopped working again and she has retained 45# of extra water. Her mother says she has swollen up almost unrecognizably. Still can raise eyebrows and squeeze her daughters' hand, so is still in there fighting. White cell counts are climbing and the source of infection is still a mystery. The waiting it out is such a strain! I plan to head over to see her on Thursday when I finally have days off from my schedule. Just have to concentrate on positive thoughts and expectations of excellent outcomes....
cnsky54RRT
New member
I think now they have agreed that it was an overwhelming anaphylactic reaction to the albumin. Her kidneys have stopped working again and she has retained 45# of extra water. Her mother says she has swollen up almost unrecognizably. Still can raise eyebrows and squeeze her daughters' hand, so is still in there fighting. White cell counts are climbing and the source of infection is still a mystery. The waiting it out is such a strain! I plan to head over to see her on Thursday when I finally have days off from my schedule. Just have to concentrate on positive thoughts and expectations of excellent outcomes....
cnsky54RRT
New member
I think now they have agreed that it was an overwhelming anaphylactic reaction to the albumin. Her kidneys have stopped working again and she has retained 45# of extra water. Her mother says she has swollen up almost unrecognizably. Still can raise eyebrows and squeeze her daughters' hand, so is still in there fighting. White cell counts are climbing and the source of infection is still a mystery. The waiting it out is such a strain! I plan to head over to see her on Thursday when I finally have days off from my schedule. Just have to concentrate on positive thoughts and expectations of excellent outcomes....
cnsky54RRT
New member
Back from the big city hospital today. Heather is off the vent, her kidneys are putting out fluid, but she is still pretty puffed up. At the rate she is passing water (12# worth today) she should be about back to normal in a few days. Feeling miserable, but we had a chance to laugh and I fed her some Jello, her big cuisine for the day.
The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
And she still has the pink cheeks and wonderful colour all over. Good signs...
The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
And she still has the pink cheeks and wonderful colour all over. Good signs...
cnsky54RRT
New member
Back from the big city hospital today. Heather is off the vent, her kidneys are putting out fluid, but she is still pretty puffed up. At the rate she is passing water (12# worth today) she should be about back to normal in a few days. Feeling miserable, but we had a chance to laugh and I fed her some Jello, her big cuisine for the day.
The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
And she still has the pink cheeks and wonderful colour all over. Good signs...
The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
And she still has the pink cheeks and wonderful colour all over. Good signs...
cnsky54RRT
New member
Back from the big city hospital today. Heather is off the vent, her kidneys are putting out fluid, but she is still pretty puffed up. At the rate she is passing water (12# worth today) she should be about back to normal in a few days. Feeling miserable, but we had a chance to laugh and I fed her some Jello, her big cuisine for the day.
<br />
<br />The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
<br />
<br />And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
<br />
<br />So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
<br />
<br />And she still has the pink cheeks and wonderful colour all over. Good signs...
<br />
<br />The doctors had never seen an anaphylactic reaction to albumin before, even in a big place like the University hospital. They went so far as to pull all the bottles of albumin from the same batch to test for anything out of the ordinary. She had the classic symptoms of hives, drop in BP, increase in HR and shortness of breath. So now she is getting slowly weaned off the fluids and the needed cardiac meds to get her heart pumping more efficiently. She asked me "why does it always have to be ME that is the one-in-a-million?". Don't know, but she is the toughest chick I have ever met...
<br />
<br />And on a happy note, she has connected with a nice guy from her high school days, and he is coming over to see her as often as possible. Of all the crazy times for a relationship to occur! The last one was a first class jerk, and needs seriously to be shown the bottom of a canal with a chain around his neck. Oops, did I say that? Sorry... Kinda amazing that a really good fella shows up right in the middle of all this transplant crisis!
<br />
<br />So on we go. The bad news I had to tell her is that since she had this episode, she goes right back to the beginning of her three-month post-op rehab period. Now she won't be home till Fall. No matter, get it right the first time and come home with it all working.
<br />
<br />And she still has the pink cheeks and wonderful colour all over. Good signs...
cnsky54RRT
New member
Forgot to mention - the waiting area in the ICU was full of CF families. They have done four double txs in the last ten days! The young man who got his yesterday morning was also a no dry run, first call recipient. Fantastic!
cnsky54RRT
New member
Forgot to mention - the waiting area in the ICU was full of CF families. They have done four double txs in the last ten days! The young man who got his yesterday morning was also a no dry run, first call recipient. Fantastic!
cnsky54RRT
New member
Forgot to mention - the waiting area in the ICU was full of CF families. They have done four double txs in the last ten days! The young man who got his yesterday morning was also a no dry run, first call recipient. Fantastic!