Result from the pneumathorax is i need a lung transplant

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carly23

New member
I need alot of support..my lung has healed 80% but 20% is still not reinflating there looking at taking me off suction tomorow to see how i tolerate that..id i tolerate that ok then ill have a smaller tube put in and be sent home as well tomorow im starting my transplant evaluation so il be dealing with all that to..this is all so scary for me..just over a week ago i was told i was to healthy and didnt need to start transplant eval now i need it to live..amazing how quick things can change and i am so emotionally stirred up yesterday i was balling my eyes out all day..

My question is though i wander if there is anything else they can do to help my lung heal that i can do?..this spontaneous pneumathorax has my mind blown and it feels like al this is a bad dream..
 
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carly23

New member
I need alot of support..my lung has healed 80% but 20% is still not reinflating there looking at taking me off suction tomorow to see how i tolerate that..id i tolerate that ok then ill have a smaller tube put in and be sent home as well tomorow im starting my transplant evaluation so il be dealing with all that to..this is all so scary for me..just over a week ago i was told i was to healthy and didnt need to start transplant eval now i need it to live..amazing how quick things can change and i am so emotionally stirred up yesterday i was balling my eyes out all day..

My question is though i wander if there is anything else they can do to help my lung heal that i can do?..this spontaneous pneumathorax has my mind blown and it feels like al this is a bad dream..
 
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nocode

New member
Hi, I'm sorry to hear that that is happening to you. I wish you all the strength in the world to deal with this now. Send me a message if you'd like to talk.

My FEV1 is 35% so I can relate, even though I never had a pneumothorax. How did yours happen, do they know the causes or is it random?

Hug,
Vera
 
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nocode

New member
Hi, I'm sorry to hear that that is happening to you. I wish you all the strength in the world to deal with this now. Send me a message if you'd like to talk.

My FEV1 is 35% so I can relate, even though I never had a pneumothorax. How did yours happen, do they know the causes or is it random?

Hug,
Vera
 
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carly23

New member
Mine was spontaneous..just over a week ago i was told we didnt need to start transplant i was to healthy then this happens 6days later..an now my lung wont reinflate 100% only 80% and now i need new lungs so scary how this is all happening right now feels like its all a bad dream
 
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carly23

New member
Mine was spontaneous..just over a week ago i was told we didnt need to start transplant i was to healthy then this happens 6days later..an now my lung wont reinflate 100% only 80% and now i need new lungs so scary how this is all happening right now feels like its all a bad dream
 
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lilmac7

New member
Wow, I've had pneumothorax a couple times. Hurt like all hell and they didn't insert any tubes or anything said it would just go away on it's own over time and it sure did. Mind you during that time was no fun, it hurt, I could feel like a pocket of air was between my lung and my ribs - that's the only description I can give as to what it felt like. Every breath I could feel like the air pocket was moving around and of course there was shortness of breath and pain, however it did go away eventually every time I had it and wih exercise etc I returned to as I was before it. So just FYI for you. I also note that those descisions were not made by my clinic as I don't live close to where I go and unfortunatley don't get to go for as regular checkups as I should either. The descisions were made by docs here which are more emergency doctors - have more background in the ER so I guess they are faced with more cronic situations. So who knows maybe if I was in your situation my clinic might have done the same with me as they are telling you now but luckily in my case it worked out fine all the times I got it but it's definitley no fun and my prayers go out to you. I personally knew no different other than I needed to endure the pain and push through it with excersise and doing this thing they gave me to blow into which they said was to help get my lungs reinflated.
 
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lilmac7

New member
Wow, I've had pneumothorax a couple times. Hurt like all hell and they didn't insert any tubes or anything said it would just go away on it's own over time and it sure did. Mind you during that time was no fun, it hurt, I could feel like a pocket of air was between my lung and my ribs - that's the only description I can give as to what it felt like. Every breath I could feel like the air pocket was moving around and of course there was shortness of breath and pain, however it did go away eventually every time I had it and wih exercise etc I returned to as I was before it. So just FYI for you. I also note that those descisions were not made by my clinic as I don't live close to where I go and unfortunatley don't get to go for as regular checkups as I should either. The descisions were made by docs here which are more emergency doctors - have more background in the ER so I guess they are faced with more cronic situations. So who knows maybe if I was in your situation my clinic might have done the same with me as they are telling you now but luckily in my case it worked out fine all the times I got it but it's definitley no fun and my prayers go out to you. I personally knew no different other than I needed to endure the pain and push through it with excersise and doing this thing they gave me to blow into which they said was to help get my lungs reinflated.
 
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kgfrompa

Guest
It is so scary to have a Pneumothorax,I have had 19 chest tubes and finally did a pleurodesis on each lung the pain is the worst I ever felt.Since I have had the Pleurodesis done I have not had any more problems the doctors in Pittsburg where the best when I lived near Phil they wouldnt touch my lung that is one thing about my care at Upmc they are the best i feel blessed to have th eteam they have at Pittsburgh.Hope you are feeling better soon and so sorry you had to have the experence of a collaspe lung
 
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kgfrompa

Guest
It is so scary to have a Pneumothorax,I have had 19 chest tubes and finally did a pleurodesis on each lung the pain is the worst I ever felt.Since I have had the Pleurodesis done I have not had any more problems the doctors in Pittsburg where the best when I lived near Phil they wouldnt touch my lung that is one thing about my care at Upmc they are the best i feel blessed to have th eteam they have at Pittsburgh.Hope you are feeling better soon and so sorry you had to have the experence of a collaspe lung
 
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nhaggard07

New member
Three years ago I went through the same. I had 5 phneumos in 6 weeks, same lung. They evaluated me for a transplant and I met a new dr during that horrible process. I hope that you see this message because I may have an answer for you. The new dr I met suggested I get a procedure called a "mechanical pleuradycis" not sure of the spelling. Anyway, they make two small incisions, and rough up the outer tissue of the lung so the lung heals to the inside of the chest cavity thus making it nearly impossible to get a phneumothorax if the precedure goes well. I woke up with medium pain that subsided after a week or so, but ever since then I have had no issues with that lung since. And that lung was in horrible shape, looked like Swiss cheese on the catscan. They told me the procedure can be effective for a good fifteen years! They said down the road it may make a transplant more difficult since the lung is now bonded to the chest cavity, but in my opinion it was a god send. Please see this in time and give it thorough consideration because I feel that it has saved my life. And I hope it can help you as well.
 
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nhaggard07

New member
Three years ago I went through the same. I had 5 phneumos in 6 weeks, same lung. They evaluated me for a transplant and I met a new dr during that horrible process. I hope that you see this message because I may have an answer for you. The new dr I met suggested I get a procedure called a "mechanical pleuradycis" not sure of the spelling. Anyway, they make two small incisions, and rough up the outer tissue of the lung so the lung heals to the inside of the chest cavity thus making it nearly impossible to get a phneumothorax if the precedure goes well. I woke up with medium pain that subsided after a week or so, but ever since then I have had no issues with that lung since. And that lung was in horrible shape, looked like Swiss cheese on the catscan. They told me the procedure can be effective for a good fifteen years! They said down the road it may make a transplant more difficult since the lung is now bonded to the chest cavity, but in my opinion it was a god send. Please see this in time and give it thorough consideration because I feel that it has saved my life. And I hope it can help you as well.
 
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carly23

New member
Thankyou for responding! Haggard how did you find this other doctor?..see there telling me there is nothing they can do and my lung is slowly healing..an question can i tell them what i want done an they do it?..theyve told me tey dont want to do any stapling or anything cause itll cause problems for transplant..thing is you said your procedure has saved you for about 15yrs?..i hear that 5-6yrs cf will have the meds maybe out to help stop the progressiveness of this disease!..so im really thinking about this descion youve told me about tou had done!..im not ready for my lungs to be transplanted and yes were going through the transplant evaluation process but i want that to be the last if we REALLY have to thing to do..i have faith my pneumathorax will heal it just needs time. I have been today on the lowest suction number and tolerated it great..tomorow there going to take me off and see how i do..ive been improving everyday though <img src="i/expressions/face-icon-small-smile.gif" border="0"> ...it gets me because i member asking the doctor is there anything else we can do and he turned it around like ya know theres alot of things people dont want to do but the fact of life is we have to..an i dont know i feel like they dont want to try an look to help me especialy now you tell me you had this done for you!..so i want to know what if i tell them what i want do they have to do it or is it there word?..as well we have two different cf doctors that work at the same clinic but work at two different hospitals..should i go to my other cf doc who i never see cause i prefer to see this new lady cf doc and ask him about it?..he actualy does transplants his self as well as being a cf doc..ugh sory for the fifty questions lol
 
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carly23

New member
Thankyou for responding! Haggard how did you find this other doctor?..see there telling me there is nothing they can do and my lung is slowly healing..an question can i tell them what i want done an they do it?..theyve told me tey dont want to do any stapling or anything cause itll cause problems for transplant..thing is you said your procedure has saved you for about 15yrs?..i hear that 5-6yrs cf will have the meds maybe out to help stop the progressiveness of this disease!..so im really thinking about this descion youve told me about tou had done!..im not ready for my lungs to be transplanted and yes were going through the transplant evaluation process but i want that to be the last if we REALLY have to thing to do..i have faith my pneumathorax will heal it just needs time. I have been today on the lowest suction number and tolerated it great..tomorow there going to take me off and see how i do..ive been improving everyday though <img src="i/expressions/face-icon-small-smile.gif" border="0"> ...it gets me because i member asking the doctor is there anything else we can do and he turned it around like ya know theres alot of things people dont want to do but the fact of life is we have to..an i dont know i feel like they dont want to try an look to help me especialy now you tell me you had this done for you!..so i want to know what if i tell them what i want do they have to do it or is it there word?..as well we have two different cf doctors that work at the same clinic but work at two different hospitals..should i go to my other cf doc who i never see cause i prefer to see this new lady cf doc and ask him about it?..he actualy does transplants his self as well as being a cf doc..ugh sory for the fifty questions lol
 
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Havoc

New member
Actually, in your other thread about this, someone mentioned this procedure, also with the caveat that it could make transplant more difficult.

I think it's also important to note that because they are sending you for transplant evaluation, doesn't mean that you'll be getting a transplant. I know people who were evaluated and even on the list and then stabilized and went "inactive" on the list. Some people wait many years for a transplant, which is why they like to evaluate and perhaps list sooner than later.
 
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Havoc

New member
Actually, in your other thread about this, someone mentioned this procedure, also with the caveat that it could make transplant more difficult.

I think it's also important to note that because they are sending you for transplant evaluation, doesn't mean that you'll be getting a transplant. I know people who were evaluated and even on the list and then stabilized and went "inactive" on the list. Some people wait many years for a transplant, which is why they like to evaluate and perhaps list sooner than later.
 
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jessykt

Guest
I was evaluated for a transplant about 11 years ago (it was based on the amount of time on the list at that time). I've been getting healthier and healthier and received a letter last year that they were kicking me off...woo hoo! So like Havoc is saying, you could get evaluated and you could also get better and not need one...
 
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jessykt

Guest
I was evaluated for a transplant about 11 years ago (it was based on the amount of time on the list at that time). I've been getting healthier and healthier and received a letter last year that they were kicking me off...woo hoo! So like Havoc is saying, you could get evaluated and you could also get better and not need one...
 
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