Help! Need advice!..I had a spontaneous pneumothorax and now im being told that transplant is my only option?
Just over a week ago i i was told i didnt need to start transplant evaluation because i was to healthy and theyd just continue to see me every time i saw my cf doctor..well just over a week ago i had this spontaneous pneumo happen and now there telling me transplant is the only answer?...i feel my pneumo happend because i was deprived my pulmozyme for two weeks and in those two weeks was when i was waking up very wheezy and was clogged because of no pulmozyme <img src="i/expressions/face-icon-small-sad.gif" border="0"> and i was without it because medicare decided it was to expensive to cover two boxes a month from now on..
So with that being said im being told if my pneumo doesnt heal there is NOTHING they can do to help me to fix it?..im hearing many cfers have had a patch or stapling done i also hear a procedure called "mechanical plurdusis" but i was explained that that can be a harmful procedure so i understand why not to do that..so what about this other thing they can do or what have you had done?..im not realy sick i only wear oxygen 2litres during walking as i desat to 87..i used to wear it sleeping but was told didnt need to now as sitting im 94..my weight is 123 and i have nothing else wrong iv been pretty healthy up until this happend an i feel strongly it happend because i was without pulmozyme and could tell as i was so wheezy in my sleep <img src="i/expressions/face-icon-small-sad.gif" border="0"> ...i understand transplant will be in the picture but i want that as a must have last resort cause nothing else workd..there trying to tell me ill have to have a tube to ho home with and wait for transplant which could be over a year since im healthy??? Something dont seem right..yes my fev%is 32 but it was 30% in March..i been doing good i was weighing 110 in january im now 123 ..what would you do i realy need advice!
Just over a week ago i i was told i didnt need to start transplant evaluation because i was to healthy and theyd just continue to see me every time i saw my cf doctor..well just over a week ago i had this spontaneous pneumo happen and now there telling me transplant is the only answer?...i feel my pneumo happend because i was deprived my pulmozyme for two weeks and in those two weeks was when i was waking up very wheezy and was clogged because of no pulmozyme <img src="i/expressions/face-icon-small-sad.gif" border="0"> and i was without it because medicare decided it was to expensive to cover two boxes a month from now on..
So with that being said im being told if my pneumo doesnt heal there is NOTHING they can do to help me to fix it?..im hearing many cfers have had a patch or stapling done i also hear a procedure called "mechanical plurdusis" but i was explained that that can be a harmful procedure so i understand why not to do that..so what about this other thing they can do or what have you had done?..im not realy sick i only wear oxygen 2litres during walking as i desat to 87..i used to wear it sleeping but was told didnt need to now as sitting im 94..my weight is 123 and i have nothing else wrong iv been pretty healthy up until this happend an i feel strongly it happend because i was without pulmozyme and could tell as i was so wheezy in my sleep <img src="i/expressions/face-icon-small-sad.gif" border="0"> ...i understand transplant will be in the picture but i want that as a must have last resort cause nothing else workd..there trying to tell me ill have to have a tube to ho home with and wait for transplant which could be over a year since im healthy??? Something dont seem right..yes my fev%is 32 but it was 30% in March..i been doing good i was weighing 110 in january im now 123 ..what would you do i realy need advice!