My doctor is telling me there is nothing they can do to patch or staple this pneumo i have..shes also telling me cause im very healthy outside of this pnuemo that happend i could be on the transplant for a year ?..an wolst waiting in the meantime ill have a chest tube in and just wait!?..i find this hard to believe you cant tell me there is nothing you cant do to help me..im pretty healthy this was spontaneous first one iv had and first problem ive experienced with my lungs besides infections..there trying to tell me they cant do anything because of transplant in future..is this true? I dont think so and i need alot of info and advice apareantly my pneumo is microscopic ive been on a chest tube an suction for over a week now but i do know cf ppl whose taken over a month to heal we are all different!..today im able to tolerate no suction before a few days ago i couldnt..i know im on the mend slowly..but i have started the transplant evaluation as this needs to be the backup plan..my transplant team has told me since this probably occured during bein without pilmozyme for two weeks they want to open my options to..cause it does seem crazy to me that there is NOTHING they can do..i even said to the doc what if i demand i want this will it happen?..i know they cant do the mechanical pleurdusis<sp>? but i do know they can patch or staple and im not coming off of it if i dont seal back up From my pneumo!
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IMPORTANT!..Need to know what you people have had done to help your pnuemathoraxes!
- Thread starter carly23
- Start date
My doctor is telling me there is nothing they can do to patch or staple this pneumo i have..shes also telling me cause im very healthy outside of this pnuemo that happend i could be on the transplant for a year ?..an wolst waiting in the meantime ill have a chest tube in and just wait!?..i find this hard to believe you cant tell me there is nothing you cant do to help me..im pretty healthy this was spontaneous first one iv had and first problem ive experienced with my lungs besides infections..there trying to tell me they cant do anything because of transplant in future..is this true? I dont think so and i need alot of info and advice apareantly my pneumo is microscopic ive been on a chest tube an suction for over a week now but i do know cf ppl whose taken over a month to heal we are all different!..today im able to tolerate no suction before a few days ago i couldnt..i know im on the mend slowly..but i have started the transplant evaluation as this needs to be the backup plan..my transplant team has told me since this probably occured during bein without pilmozyme for two weeks they want to open my options to..cause it does seem crazy to me that there is NOTHING they can do..i even said to the doc what if i demand i want this will it happen?..i know they cant do the mechanical pleurdusis<sp>? but i do know they can patch or staple and im not coming off of it if i dont seal back up From my pneumo!
Carly, many of the things you said do not make sense at all. I had a lung entirely collapse and no one was prepping me for transplant. Also,you say you have a "microscopic lung collapse"...that cant be right because then you wouldnt have a chest tube in. Some small collapses heal on their own. Also, what do you mean you cant tolerate the chest tube? the chest tube does not hurt at all. Also, they actually said this happened to you becasue you went off pulmyzyme for two weeks? Yeah, that is a bunch of bullshit too. I go on and off pulmyzyme and that is not what causes a lung collpase. You really are getting very poor advice. I would DEF get a second opinion and maybe even a 3rd. I went through a lung collapse and have the same Fev1 as you....nothing like what is happening to you....happened to me.
Carly, many of the things you said do not make sense at all. I had a lung entirely collapse and no one was prepping me for transplant. Also,you say you have a "microscopic lung collapse"...that cant be right because then you wouldnt have a chest tube in. Some small collapses heal on their own. Also, what do you mean you cant tolerate the chest tube? the chest tube does not hurt at all. Also, they actually said this happened to you becasue you went off pulmyzyme for two weeks? Yeah, that is a bunch of bullshit too. I go on and off pulmyzyme and that is not what causes a lung collpase. You really are getting very poor advice. I would DEF get a second opinion and maybe even a 3rd. I went through a lung collapse and have the same Fev1 as you....nothing like what is happening to you....happened to me.
Miss T what doesnt make sense?...all i asked was what other options can be done to help mend the pneumo?..i never said the doctor said it was the pulmozyme that caused this??..i said i feel this happend because of me not being on pulmozyme for two weeks..i do this medicene everyday but medicare insurance just up and decided that they were no longer covering two boxes a month as its to expensive so now km on it once a day..but some how i was out two weeks..reason i say i feel its the pulmozyme and i know im no doctor but as soon as i stopped this i was waking up wheezing very bad an wheezing so loud it woke me..i never sound like that so for me being off the pulmozyme which has never happend affected me significantly!..and yes i have a chest tube in and i can tell you i was in so mich pain with it i was given morphine..everyone is different. And yes they said it was microscopic i found it kind of baffeling to me to..all im wanting to know and the reason for my post is what can be done if my pneumo doesnt mend?..i feel like just because of this shouldnt mean i need a transplant all of a sudden..im 32%fev and my weight is 123 i have been improving and transplant clinic told me just over a week agi i was to healthy!..an then a few days later this happens and now i need lungs? Seems kind of weird to me there must be something else they can do for me and i ask questions and let the doctors know im not just agreeing with what they tell me ..an today they tell me i could be waiting for over a year for new lungs since im healthy so what i sit at home with a tube in my lungs waiting to heal? Somethin dont seem right
Miss T what doesnt make sense?...all i asked was what other options can be done to help mend the pneumo?..i never said the doctor said it was the pulmozyme that caused this??..i said i feel this happend because of me not being on pulmozyme for two weeks..i do this medicene everyday but medicare insurance just up and decided that they were no longer covering two boxes a month as its to expensive so now km on it once a day..but some how i was out two weeks..reason i say i feel its the pulmozyme and i know im no doctor but as soon as i stopped this i was waking up wheezing very bad an wheezing so loud it woke me..i never sound like that so for me being off the pulmozyme which has never happend affected me significantly!..and yes i have a chest tube in and i can tell you i was in so mich pain with it i was given morphine..everyone is different. And yes they said it was microscopic i found it kind of baffeling to me to..all im wanting to know and the reason for my post is what can be done if my pneumo doesnt mend?..i feel like just because of this shouldnt mean i need a transplant all of a sudden..im 32%fev and my weight is 123 i have been improving and transplant clinic told me just over a week agi i was to healthy!..an then a few days later this happens and now i need lungs? Seems kind of weird to me there must be something else they can do for me and i ask questions and let the doctors know im not just agreeing with what they tell me ..an today they tell me i could be waiting for over a year for new lungs since im healthy so what i sit at home with a tube in my lungs waiting to heal? Somethin dont seem right
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>carly23</b></i>my transplant team has told me since this probably occured during bein without pilmozyme for two weeks they want to open my options to..cause it does seem crazy to me that there is NOTHING they can do.</end quote>
That sentence sounds like you said your docs were telling you your spontaneous pneumo was from being off the pulmozyme.
Your posts are extremely difficult to read. I'm not sure if it's because you are posting from a phone or what. We can't help you unless we can understand what it is your docs are actually saying. Please take a moment and write a clear post.
That sentence sounds like you said your docs were telling you your spontaneous pneumo was from being off the pulmozyme.
Your posts are extremely difficult to read. I'm not sure if it's because you are posting from a phone or what. We can't help you unless we can understand what it is your docs are actually saying. Please take a moment and write a clear post.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>carly23</b></i>my transplant team has told me since this probably occured during bein without pilmozyme for two weeks they want to open my options to..cause it does seem crazy to me that there is NOTHING they can do.</end quote>
That sentence sounds like you said your docs were telling you your spontaneous pneumo was from being off the pulmozyme.
Your posts are extremely difficult to read. I'm not sure if it's because you are posting from a phone or what. We can't help you unless we can understand what it is your docs are actually saying. Please take a moment and write a clear post.
That sentence sounds like you said your docs were telling you your spontaneous pneumo was from being off the pulmozyme.
Your posts are extremely difficult to read. I'm not sure if it's because you are posting from a phone or what. We can't help you unless we can understand what it is your docs are actually saying. Please take a moment and write a clear post.
I would check with your CF doc to see if another surgeon can give an evaluation. When my husband had his lung collapse for the second time the surgeon he had did basically did a lung resection....taking out the suspicious areas that he felt were causing the collapse. That was over 6 years ago and he has not had an issue since. The surgeon did mention the possibility if doing that cementing on the upper part of the lung but thankfully did not do. I would see if maybe they could do a resection?
I'm so sorry you are having to go through this. Praying it gets worked out fast.
I'm so sorry you are having to go through this. Praying it gets worked out fast.
I would check with your CF doc to see if another surgeon can give an evaluation. When my husband had his lung collapse for the second time the surgeon he had did basically did a lung resection....taking out the suspicious areas that he felt were causing the collapse. That was over 6 years ago and he has not had an issue since. The surgeon did mention the possibility if doing that cementing on the upper part of the lung but thankfully did not do. I would see if maybe they could do a resection?
I'm so sorry you are having to go through this. Praying it gets worked out fast.
I'm so sorry you are having to go through this. Praying it gets worked out fast.
Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it does make it hard to transplant.I am just VERY concerned that you are not getting sound medical advice. I really dont even think it is possible for anyone to sit with a chest tube in waiting for tranpalnt for a year. I believe that you can only leave it in for a week or so. If the lung doesnt re-inflate then they would have to take other measures. I really feel for you.....PLEASE ASK FOR ADDITIONAL OPINIONS.
Ok, I read your 2nd post. A lung collapse happens for many reasons...one being massive infection that is brewing in your lung...that is what caused my collapse. My lung re-inflated on its own in 7 days. The only other option is to have your lung basically glued to your chest wall and yes, it does make it hard to transplant.I am just VERY concerned that you are not getting sound medical advice. I really dont even think it is possible for anyone to sit with a chest tube in waiting for tranpalnt for a year. I believe that you can only leave it in for a week or so. If the lung doesnt re-inflate then they would have to take other measures. I really feel for you.....PLEASE ASK FOR ADDITIONAL OPINIONS.
Holmbers i will mention that!..And MissT yea it sounds very strange to me how they cannot do anything for me but leave a chest tube in till its time for transplant?!..i mean come on people how ridiculous!..imm not accepting this as are final answer and i will be staying stuck in my words on what i want not what they tell me..especially since this one incident happen and now its like there treating me like i need the transplant cause there is no hope for me :-/
Holmbers i will mention that!..And MissT yea it sounds very strange to me how they cannot do anything for me but leave a chest tube in till its time for transplant?!..i mean come on people how ridiculous!..imm not accepting this as are final answer and i will be staying stuck in my words on what i want not what they tell me..especially since this one incident happen and now its like there treating me like i need the transplant cause there is no hope for me :-/