Having a bad day...

TheMustanger · Jun 12, 2011

Hey all. 
 
Having a bad day today and just needed to get out all I've been through
the last couple of years out somewhere. Just hoping that my story would
be understood by someone other than my immediate family. After what
seems like a perfect storm of problems the last couple of years, I am
now at point in my "CF" life i was telling myself that I wouldn't get to
till way later. 
 
Last year in February I had a spontaneous pnumothorax (One lung
collapsed 70% and I couldn't breathe any more than a pant, scariest
moment of my life), knocking my fev1 from the 60s to the 30s after a
couple of months of recovery... To make this a little shorter... 6
months later with gradual improvement I bumped my fev1 up to the mid
40s. After what seemed like a normal winter, getting sick then using the
usual 1month of oral antibiotics to kick the bug out. All was well,
though slowly I found trouble in walking shorter and shorter distances
until i couldn't even get from my room to the kitchen... a distance of
maybe 100ft. 
 
I don't know to this day what coaxed my mom to bring her portable
o2-meter home from work that day, but after checking my o2 I was at
68%... I though to myself that couldn't be right, I mean I'm tired but
not "that" kind of tired. I've never been on oxygen before (except for
the pnumothorax recovery) so i was baffled by the low number. After a
long debate about weather the thing needed batteries or not we decided
to get me into the doctors office the next day. Low and behold 1 month
in the hospital and every IV med the docs cooked up, I was still only at
93% o2 with 3liters and a 19% predicted on my fev1. 
 
The present day I'm sitting at home just waiting for a phone call to get
my 1st broncoscopy at 19% i heard it is very dangerous to do so. My doc
is contacting others for advice and I'm getting as healthy as I
possibly can by working out, eating plenty, and taking meds. The test is
to see weather my lungs have that micro-bacteria (or something like
that) that would deny my transplant lungs, or to check for anything that
I haven't produced through my cough. My family is here for support, but
they can only understand their part in what I'm going through. Just
need to know that I am not alone, I know I'm strong but some days it
just hits hard...

TheMustanger · Jun 12, 2011

Hey all. 
 
Having a bad day today and just needed to get out all I've been through
the last couple of years out somewhere. Just hoping that my story would
be understood by someone other than my immediate family. After what
seems like a perfect storm of problems the last couple of years, I am
now at point in my "CF" life i was telling myself that I wouldn't get to
till way later. 
 
Last year in February I had a spontaneous pnumothorax (One lung
collapsed 70% and I couldn't breathe any more than a pant, scariest
moment of my life), knocking my fev1 from the 60s to the 30s after a
couple of months of recovery... To make this a little shorter... 6
months later with gradual improvement I bumped my fev1 up to the mid
40s. After what seemed like a normal winter, getting sick then using the
usual 1month of oral antibiotics to kick the bug out. All was well,
though slowly I found trouble in walking shorter and shorter distances
until i couldn't even get from my room to the kitchen... a distance of
maybe 100ft. 
 
I don't know to this day what coaxed my mom to bring her portable
o2-meter home from work that day, but after checking my o2 I was at
68%... I though to myself that couldn't be right, I mean I'm tired but
not "that" kind of tired. I've never been on oxygen before (except for
the pnumothorax recovery) so i was baffled by the low number. After a
long debate about weather the thing needed batteries or not we decided
to get me into the doctors office the next day. Low and behold 1 month
in the hospital and every IV med the docs cooked up, I was still only at
93% o2 with 3liters and a 19% predicted on my fev1. 
 
The present day I'm sitting at home just waiting for a phone call to get
my 1st broncoscopy at 19% i heard it is very dangerous to do so. My doc
is contacting others for advice and I'm getting as healthy as I
possibly can by working out, eating plenty, and taking meds. The test is
to see weather my lungs have that micro-bacteria (or something like
that) that would deny my transplant lungs, or to check for anything that
I haven't produced through my cough. My family is here for support, but
they can only understand their part in what I'm going through. Just
need to know that I am not alone, I know I'm strong but some days it
just hits hard...

TheMustanger · Jun 12, 2011

Hey all. 
 
Having a bad day today and just needed to get out all I've been through
the last couple of years out somewhere. Just hoping that my story would
be understood by someone other than my immediate family. After what
seems like a perfect storm of problems the last couple of years, I am
now at point in my "CF" life i was telling myself that I wouldn't get to
till way later. 
 
Last year in February I had a spontaneous pnumothorax (One lung
collapsed 70% and I couldn't breathe any more than a pant, scariest
moment of my life), knocking my fev1 from the 60s to the 30s after a
couple of months of recovery... To make this a little shorter... 6
months later with gradual improvement I bumped my fev1 up to the mid
40s. After what seemed like a normal winter, getting sick then using the
usual 1month of oral antibiotics to kick the bug out. All was well,
though slowly I found trouble in walking shorter and shorter distances
until i couldn't even get from my room to the kitchen... a distance of
maybe 100ft. 
 
I don't know to this day what coaxed my mom to bring her portable
o2-meter home from work that day, but after checking my o2 I was at
68%... I though to myself that couldn't be right, I mean I'm tired but
not "that" kind of tired. I've never been on oxygen before (except for
the pnumothorax recovery) so i was baffled by the low number. After a
long debate about weather the thing needed batteries or not we decided
to get me into the doctors office the next day. Low and behold 1 month
in the hospital and every IV med the docs cooked up, I was still only at
93% o2 with 3liters and a 19% predicted on my fev1. 
 
The present day I'm sitting at home just waiting for a phone call to get
my 1st broncoscopy at 19% i heard it is very dangerous to do so. My doc
is contacting others for advice and I'm getting as healthy as I
possibly can by working out, eating plenty, and taking meds. The test is
to see weather my lungs have that micro-bacteria (or something like
that) that would deny my transplant lungs, or to check for anything that
I haven't produced through my cough. My family is here for support, but
they can only understand their part in what I'm going through. Just
need to know that I am not alone, I know I'm strong but some days it
just hits hard...

duke1234 · Jun 12, 2011

I don't know what to say to make you feel better but I can assure you you're not alone, my last year has been almost identical to yours. last June I had a spontaneous pneumo, scariest and most painful week of my life. I stayed at home with it for a week and when I finally went in my fev1 was 14% my o2 was in the 60's and my doctors were surprised I was alive and even more surprised I walked in and up 3 flights of stairs on my own without oxygen. Long story short got back up to my baseline of 30% went home without oxygen in June 2010 came back in October 2010 fev1 15% went on oxygen after a month in hospital got my fev1 up to 18% now 6 months later I'm at home on 4L oxygen 24/7 so I know how you feel. I've chosen not to have a lung transplant, but I hope you have no trouble getting listed and I hope you receive great lungs as soon as possible.

duke1234 · Jun 12, 2011

I don't know what to say to make you feel better but I can assure you you're not alone, my last year has been almost identical to yours. last June I had a spontaneous pneumo, scariest and most painful week of my life. I stayed at home with it for a week and when I finally went in my fev1 was 14% my o2 was in the 60's and my doctors were surprised I was alive and even more surprised I walked in and up 3 flights of stairs on my own without oxygen. Long story short got back up to my baseline of 30% went home without oxygen in June 2010 came back in October 2010 fev1 15% went on oxygen after a month in hospital got my fev1 up to 18% now 6 months later I'm at home on 4L oxygen 24/7 so I know how you feel. I've chosen not to have a lung transplant, but I hope you have no trouble getting listed and I hope you receive great lungs as soon as possible.

duke1234 · Jun 12, 2011

I don't know what to say to make you feel better but I can assure you you're not alone, my last year has been almost identical to yours. last June I had a spontaneous pneumo, scariest and most painful week of my life. I stayed at home with it for a week and when I finally went in my fev1 was 14% my o2 was in the 60's and my doctors were surprised I was alive and even more surprised I walked in and up 3 flights of stairs on my own without oxygen. Long story short got back up to my baseline of 30% went home without oxygen in June 2010 came back in October 2010 fev1 15% went on oxygen after a month in hospital got my fev1 up to 18% now 6 months later I'm at home on 4L oxygen 24/7 so I know how you feel. I've chosen not to have a lung transplant, but I hope you have no trouble getting listed and I hope you receive great lungs as soon as possible.

Shine · Jun 12, 2011

Hey Brian,

I'm with duke on this one I din't know what to say either except hang in there! You sound like a fighter and seem quite proactive trying to achieve your best result possible. Will be praying for you.

I wish you all the best in whatever you decided to do.

*BIG HUGS*

Sarah

Shine · Jun 12, 2011

Hey Brian,

I'm with duke on this one I din't know what to say either except hang in there! You sound like a fighter and seem quite proactive trying to achieve your best result possible. Will be praying for you.

I wish you all the best in whatever you decided to do.

*BIG HUGS*

Sarah

Shine · Jun 12, 2011

Hey Brian,
 
 I'm with duke on this one I din't know what to say either except hang in there! You sound like a fighter and seem quite proactive trying to achieve your best result possible. Will be praying for you.
 
 I wish you all the best in whatever you decided to do.
 
 *BIG HUGS*
 
 Sarah

TheMustanger · Jun 12, 2011

Sarah, I thank you for your prayers and duke, I am glad to know that I wasn't the only one, and I also understand your decision to go without the transplant. It took me 4 months of soul searching to finally come to a definitive answer. At this point, the only true problem I see with this disease is the complications of meeting others with CF in real life. I've been told that... you cant meet others with CF you would contract their bugs and vice versa making it more difficult for the both of you. This makes it difficult not to feel alone in this world. It's hard to know what I'm going through unless you've been through it, and I'm sure many feel the same way here. Thanks again for the replys

TheMustanger · Jun 12, 2011

Sarah, I thank you for your prayers and duke, I am glad to know that I wasn't the only one, and I also understand your decision to go without the transplant. It took me 4 months of soul searching to finally come to a definitive answer. At this point, the only true problem I see with this disease is the complications of meeting others with CF in real life. I've been told that... you cant meet others with CF you would contract their bugs and vice versa making it more difficult for the both of you. This makes it difficult not to feel alone in this world. It's hard to know what I'm going through unless you've been through it, and I'm sure many feel the same way here. Thanks again for the replys

TheMustanger · Jun 12, 2011

Sarah, I thank you for your prayers and duke, I am glad to know that I wasn't the only one, and I also understand your decision to go without the transplant. It took me 4 months of soul searching to finally come to a definitive answer. At this point, the only true problem I see with this disease is the complications of meeting others with CF in real life. I've been told that... you cant meet others with CF you would contract their bugs and vice versa making it more difficult for the both of you. This makes it difficult not to feel alone in this world. It's hard to know what I'm going through unless you've been through it, and I'm sure many feel the same way here. Thanks again for the replys

theLostMiler · Jun 12, 2011

I had a partial pnuemothorax due to that "microbacteria" you mentioned in Oct-Nov. I was at 40% is and only knocked down to 33%, my sats were only down like 2-3% so I just thought I needed abx b/c I was SOB and stuff. I was at home for 2 weeks for it b/c I had blown a hole in my lung and so I had this air that was rising to the top of my chest and "popping" against the chest wall when I would lay back or on the side with the pneumo, so besides that annoying feeling I had no pain.

I had already been looking at transplant even with the mycobacterium abscessus I have, and i have a center, you can still get transplanted with it, you just have limited centers who are willing to take on the risk. It sounds like you have a great team of doctors who are really trying to help you out, but until the results come back, don't rule out transplant if you dont want to (I know its a so emotionally heavy and draining to think about)

theLostMiler · Jun 12, 2011

I had a partial pnuemothorax due to that "microbacteria" you mentioned in Oct-Nov. I was at 40% is and only knocked down to 33%, my sats were only down like 2-3% so I just thought I needed abx b/c I was SOB and stuff. I was at home for 2 weeks for it b/c I had blown a hole in my lung and so I had this air that was rising to the top of my chest and "popping" against the chest wall when I would lay back or on the side with the pneumo, so besides that annoying feeling I had no pain.

I had already been looking at transplant even with the mycobacterium abscessus I have, and i have a center, you can still get transplanted with it, you just have limited centers who are willing to take on the risk. It sounds like you have a great team of doctors who are really trying to help you out, but until the results come back, don't rule out transplant if you dont want to (I know its a so emotionally heavy and draining to think about)

theLostMiler · Jun 12, 2011

I had a partial pnuemothorax due to that "microbacteria" you mentioned in Oct-Nov. I was at 40% is and only knocked down to 33%, my sats were only down like 2-3% so I just thought I needed abx b/c I was SOB and stuff. I was at home for 2 weeks for it b/c I had blown a hole in my lung and so I had this air that was rising to the top of my chest and "popping" against the chest wall when I would lay back or on the side with the pneumo, so besides that annoying feeling I had no pain.
 
 I had already been looking at transplant even with the mycobacterium abscessus I have, and i have a center, you can still get transplanted with it, you just have limited centers who are willing to take on the risk. It sounds like you have a great team of doctors who are really trying to help you out, but until the results come back, don't rule out transplant if you dont want to (I know its a so emotionally heavy and draining to think about)

just1more · Jun 12, 2011

LostMiler, can I ask which transplant center is working with you?

I know there are some that now that will work with Cepacia or Myco; but I'm glad you found someone that would look at the 'whole' picture and just curious as I know others have struggled to find that solution.

Brian, as a CF-dad I can't do much more than tell you I'm thinking of you and hope that things will stablize and the cultures come back consistent with getting your tx.

just1more · Jun 12, 2011

LostMiler, can I ask which transplant center is working with you?

I know there are some that now that will work with Cepacia or Myco; but I'm glad you found someone that would look at the 'whole' picture and just curious as I know others have struggled to find that solution.

Brian, as a CF-dad I can't do much more than tell you I'm thinking of you and hope that things will stablize and the cultures come back consistent with getting your tx.

just1more · Jun 12, 2011

LostMiler, can I ask which transplant center is working with you?
 
 I know there are some that now that will work with Cepacia or Myco; but I'm glad you found someone that would look at the 'whole' picture and just curious as I know others have struggled to find that solution.
 
 Brian, as a CF-dad I can't do much more than tell you I'm thinking of you and hope that things will stablize and the cultures come back consistent with getting your tx.

beleache · Jun 13, 2011

Hey Brian, <div> </div><div> I dont have much to add to the reply's, just wanted to let you know that you are not alone.. We all have bad days & "talking" to others really does help..<div> </div><div>Thoughts & Prayers to you.. <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni</div></div>

beleache · Jun 13, 2011

Hey Brian, I dont have much to add to the reply's, just wanted to let you know that you are not alone.. We all have bad days & "talking" to others really does help.. Thoughts & Prayers to you.. <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

Having a bad day...

New member

New member

New member

New member

New member

New member

Member

Member

Member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member