Reason why i feel strongly about the pulmozyme being the cause of my pneumo because feels strangely coinsedental(sp) that i stop this medicene and get clogged up and wheezing really bad i never have sounded like that..as well i wasnt saying nothing else wouldnt cause pneumos all i was saying is in this case considering how well i was feeling up until the stop on my pulmozyme it seems to me this was the cause but i know i am no doctor.
IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!
- Thread starter carly23
- Start date
Reason why i feel strongly about the pulmozyme being the cause of my pneumo because feels strangely coinsedental(sp) that i stop this medicene and get clogged up and wheezing really bad i never have sounded like that..as well i wasnt saying nothing else wouldnt cause pneumos all i was saying is in this case considering how well i was feeling up until the stop on my pulmozyme it seems to me this was the cause but i know i am no doctor.
J
jholmberg
Guest
Hi Carly. Sorry to hear you are dealing with this. I had my lung collaspe twice in a month (both times I felt good right before it happened). The second time it happened the surgeon was going to surgically repair it by creating scar tissue so the lung would stay inflated. The surgeon told me this could cause some centers not to do transplants if I ever needed one in the future but not all the centers. He specifically told me some do them. He trained at Duke and said they do them there. In addition, it is my understanding that some centers won't accept you if you have certian bacteria in your lungs. My decision to do it was easy - I wanted my lung repaired and did not base it on something in the future that may never happen. I was lucky that the surgeon just cut about eight areas (blebs) out of my lungs and this did the trick. Hope everything works out.
J
jholmberg
Guest
Hi Carly. Sorry to hear you are dealing with this. I had my lung collaspe twice in a month (both times I felt good right before it happened). The second time it happened the surgeon was going to surgically repair it by creating scar tissue so the lung would stay inflated. The surgeon told me this could cause some centers not to do transplants if I ever needed one in the future but not all the centers. He specifically told me some do them. He trained at Duke and said they do them there. In addition, it is my understanding that some centers won't accept you if you have certian bacteria in your lungs. My decision to do it was easy - I wanted my lung repaired and did not base it on something in the future that may never happen. I was lucky that the surgeon just cut about eight areas (blebs) out of my lungs and this did the trick. Hope everything works out.
Looks like my lung surgeon came into me this morning and told me we are placing a higher chest tube in simce the hospital where mine was placed didnt place it high enough!..and there also taking blood and injecting it to see if a scab will cover the hole like how a cut heals on the outside of your body!..so nervous im havin this done at anytime just waitin for a spot in the O.R prayers for me please!..i think there realizing simce this funnily enough happend when i was deprived a medicene that maybe this will help prolong transplant as i am prety healthy 
Looks like my lung surgeon came into me this morning and told me we are placing a higher chest tube in simce the hospital where mine was placed didnt place it high enough!..and there also taking blood and injecting it to see if a scab will cover the hole like how a cut heals on the outside of your body!..so nervous im havin this done at anytime just waitin for a spot in the O.R prayers for me please!..i think there realizing simce this funnily enough happend when i was deprived a medicene that maybe this will help prolong transplant as i am prety healthy
I've only had one pneumothorax and that was when they inserted my port and accidentally pricked my lung. The procedure was getting a drainage tube inserted under my ribs, for nearly 10 days or so, and the doctors immediately prescribed morphin as much as I needed! Scary to know it was going to hurt, and indeed it was painful. But it healed, tube was removed, and that was it. No talk whatsoever of transplants for that!! Of course it wasn't a spontaneous one, so...
I'd say, once it's healed, talk to some other doctor!!
I'd say, once it's healed, talk to some other doctor!!
I've only had one pneumothorax and that was when they inserted my port and accidentally pricked my lung. The procedure was getting a drainage tube inserted under my ribs, for nearly 10 days or so, and the doctors immediately prescribed morphin as much as I needed! Scary to know it was going to hurt, and indeed it was painful. But it healed, tube was removed, and that was it. No talk whatsoever of transplants for that!! Of course it wasn't a spontaneous one, so...
I'd say, once it's healed, talk to some other doctor!!
I'd say, once it's healed, talk to some other doctor!!
Sorry for all the misunderstanding to those who were confused i am on a phone so what i type may not make sense..anyway i got a blokd patch done to cover the pneumo and had a new tube placed!..today we are seeig great results!..i dont need oxygen at night during the day weve had to turn it down from 2litres..and my heart rate is in the 70's usualy its 100+ !...im so thankful i did my research and suggested these things to my doctors..although everyone told me nothing could be done to help me ...an that came from my cf doctor, surgeon, and transplant team!..but i was persistant especialy when i seen that other cf ppl had things done to help them an wasnt told one pneumo means transplant!..im glad my transplant team seen where i was coming from and that yes mh pulmozyme had some play in this especially since all these symptoms started when i was without it..just wanted to share that dont just assume your doctor knows what best for you..cause mine told me i needed new lungs and i had no hope also told me i was going to be on the transplant list at least a year before id get new lungs since i am so healthy..i was going to be sat at home with a chest tube just waiting...an look at me now remarkable improvement and i feel i saved my life to an extent!
Sorry for all the misunderstanding to those who were confused i am on a phone so what i type may not make sense..anyway i got a blokd patch done to cover the pneumo and had a new tube placed!..today we are seeig great results!..i dont need oxygen at night during the day weve had to turn it down from 2litres..and my heart rate is in the 70's usualy its 100+ !...im so thankful i did my research and suggested these things to my doctors..although everyone told me nothing could be done to help me ...an that came from my cf doctor, surgeon, and transplant team!..but i was persistant especialy when i seen that other cf ppl had things done to help them an wasnt told one pneumo means transplant!..im glad my transplant team seen where i was coming from and that yes mh pulmozyme had some play in this especially since all these symptoms started when i was without it..just wanted to share that dont just assume your doctor knows what best for you..cause mine told me i needed new lungs and i had no hope also told me i was going to be on the transplant list at least a year before id get new lungs since i am so healthy..i was going to be sat at home with a chest tube just waiting...an look at me now remarkable improvement and i feel i saved my life to an extent!