My wife is a CF patient and had a bilateral pulmonary transplant 10 years ago. Recently (about 7 weeks ago) she contracted the first serious infection since the transplant procedure. She was hospitalize 10 days ago (after consistent drop of her physical ability) had a bronchoscopy done and the histologic examination determined she has Gram-negative bacteria (most probably pseudomonas). She was discharged 5 days ago with a PICC line for IV piperacillin treatment. Her peak flow went from her normal 380mL to 200-240 mL and has not improved even after she started to receive the piperacillin (it actually dropped a bit yesterday to 180-200). Besides her 4 times a day albuterol dosage she inhales distilled water in between to loosen up her sputa (I hope that's the main reason for her poor peak flow performance). She is supposed to have a check up tomorrow but because of insurance complications the hospital administration says that they won't see her until the problem is resolved (which might take up to a week). Is it normal to take so long for patients like my wife before any lung volume improvement can be seen? How long does it usually take before the lung volume starts to increase again? I hope I am stressing out for no reason and that the doctors only refuse to see her right away because they know she's out of lethal danger. But since this is America, a country with one of the most terrible medical systems I am not so sure about that and I want to make sure that her symptoms are completely normal and there's nothing to be worried about. thank you so much for any input Urban
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Pseudomonas in CF lung transplant patients?
- Thread starter arijec
- Start date
My wife is a CF patient and had a bilateral pulmonary transplant 10 years ago. Recently (about 7 weeks ago) she contracted the first serious infection since the transplant procedure. She was hospitalize 10 days ago (after consistent drop of her physical ability) had a bronchoscopy done and the histologic examination determined she has Gram-negative bacteria (most probably pseudomonas). She was discharged 5 days ago with a PICC line for IV piperacillin treatment. Her peak flow went from her normal 380mL to 200-240 mL and has not improved even after she started to receive the piperacillin (it actually dropped a bit yesterday to 180-200). Besides her 4 times a day albuterol dosage she inhales distilled water in between to loosen up her sputa (I hope that's the main reason for her poor peak flow performance). She is supposed to have a check up tomorrow but because of insurance complications the hospital administration says that they won't see her until the problem is resolved (which might take up to a week). Is it normal to take so long for patients like my wife before any lung volume improvement can be seen? How long does it usually take before the lung volume starts to increase again? I hope I am stressing out for no reason and that the doctors only refuse to see her right away because they know she's out of lethal danger. But since this is America, a country with one of the most terrible medical systems I am not so sure about that and I want to make sure that her symptoms are completely normal and there's nothing to be worried about. thank you so much for any input Urban
cftransplant
New member
Your wife grew out a gram negative bacteria from the microbiological samples not the histology. What did the histology exam show regarding potential rejection? The mycology from the bronc. may not be final at this point. Was this done at her transplant center? Is she seeing and having this course of antibiotics managed by a transplant pulmonologist? The gold standard for lung function is a PFT. Does she have a hand held spirometer to use at home (I was given one post TX). Lung function post infection or rejection takes time to recover and a PFT takes time to recover (direct knowledge) and I suspect that a peak flow would also take time (weeks not days).
Sorry about your insurance issues, keep on the company to resolve issues.
Lung volume takes time to resolve and come back and is measured by a PFT, along with FEV-1. The peak flow does not show a direct number for lung volume (FVC). Recovery takes time, months not days. Talk to her doctor, prepare a list of questions and go with her to the next visit and have these questions resolved by her medical staff who know her history, not on a blog. Get her back to her exercise program. You did not mention in your post if she is back to her PT. Recovery takes time and effort. Call her TX coordinator with your concerns today!
Your opinion on the US health care system is interesting.
1) Your wife had a TX as a CF patient. Rare in the world and not indicative of a terrible medical system.
2) Your wife is 10 years out, very rare in any health care system in the world much less a terrible system.
3) I was transplanted in the US with cepacia, still have the nasty infection, only one other country in the world would have attempted this TX, hardly indicative of a terrible medical system.
4) If the doctors felt she was in "lethal danger", they would see her. If you feel she is in "lethal danger" go to the ER and have them get a pulmonologist, if she is critical.
I understand your concern but get the TX coordinator to help you through the concerns. My wife certainly worries, but she is a nurse in the poor US health care system (and one of the best educated nurses in the world).
CF 61 cepacia TX and 12 years out
Sorry about your insurance issues, keep on the company to resolve issues.
Lung volume takes time to resolve and come back and is measured by a PFT, along with FEV-1. The peak flow does not show a direct number for lung volume (FVC). Recovery takes time, months not days. Talk to her doctor, prepare a list of questions and go with her to the next visit and have these questions resolved by her medical staff who know her history, not on a blog. Get her back to her exercise program. You did not mention in your post if she is back to her PT. Recovery takes time and effort. Call her TX coordinator with your concerns today!
Your opinion on the US health care system is interesting.
1) Your wife had a TX as a CF patient. Rare in the world and not indicative of a terrible medical system.
2) Your wife is 10 years out, very rare in any health care system in the world much less a terrible system.
3) I was transplanted in the US with cepacia, still have the nasty infection, only one other country in the world would have attempted this TX, hardly indicative of a terrible medical system.
4) If the doctors felt she was in "lethal danger", they would see her. If you feel she is in "lethal danger" go to the ER and have them get a pulmonologist, if she is critical.
I understand your concern but get the TX coordinator to help you through the concerns. My wife certainly worries, but she is a nurse in the poor US health care system (and one of the best educated nurses in the world).
CF 61 cepacia TX and 12 years out
cftransplant
New member
Your wife grew out a gram negative bacteria from the microbiological samples not the histology. What did the histology exam show regarding potential rejection? The mycology from the bronc. may not be final at this point. Was this done at her transplant center? Is she seeing and having this course of antibiotics managed by a transplant pulmonologist? The gold standard for lung function is a PFT. Does she have a hand held spirometer to use at home (I was given one post TX). Lung function post infection or rejection takes time to recover and a PFT takes time to recover (direct knowledge) and I suspect that a peak flow would also take time (weeks not days).
Sorry about your insurance issues, keep on the company to resolve issues.
Lung volume takes time to resolve and come back and is measured by a PFT, along with FEV-1. The peak flow does not show a direct number for lung volume (FVC). Recovery takes time, months not days. Talk to her doctor, prepare a list of questions and go with her to the next visit and have these questions resolved by her medical staff who know her history, not on a blog. Get her back to her exercise program. You did not mention in your post if she is back to her PT. Recovery takes time and effort. Call her TX coordinator with your concerns today!
Your opinion on the US health care system is interesting.
1) Your wife had a TX as a CF patient. Rare in the world and not indicative of a terrible medical system.
2) Your wife is 10 years out, very rare in any health care system in the world much less a terrible system.
3) I was transplanted in the US with cepacia, still have the nasty infection, only one other country in the world would have attempted this TX, hardly indicative of a terrible medical system.
4) If the doctors felt she was in "lethal danger", they would see her. If you feel she is in "lethal danger" go to the ER and have them get a pulmonologist, if she is critical.
I understand your concern but get the TX coordinator to help you through the concerns. My wife certainly worries, but she is a nurse in the poor US health care system (and one of the best educated nurses in the world).
CF 61 cepacia TX and 12 years out
Sorry about your insurance issues, keep on the company to resolve issues.
Lung volume takes time to resolve and come back and is measured by a PFT, along with FEV-1. The peak flow does not show a direct number for lung volume (FVC). Recovery takes time, months not days. Talk to her doctor, prepare a list of questions and go with her to the next visit and have these questions resolved by her medical staff who know her history, not on a blog. Get her back to her exercise program. You did not mention in your post if she is back to her PT. Recovery takes time and effort. Call her TX coordinator with your concerns today!
Your opinion on the US health care system is interesting.
1) Your wife had a TX as a CF patient. Rare in the world and not indicative of a terrible medical system.
2) Your wife is 10 years out, very rare in any health care system in the world much less a terrible system.
3) I was transplanted in the US with cepacia, still have the nasty infection, only one other country in the world would have attempted this TX, hardly indicative of a terrible medical system.
4) If the doctors felt she was in "lethal danger", they would see her. If you feel she is in "lethal danger" go to the ER and have them get a pulmonologist, if she is critical.
I understand your concern but get the TX coordinator to help you through the concerns. My wife certainly worries, but she is a nurse in the poor US health care system (and one of the best educated nurses in the world).
CF 61 cepacia TX and 12 years out