A new word in my vocabulary

B

b12bc

New member
So I "broke the news" so to speak to a couple of you in chat last night. I had a clinic visit last week and sure enough the trend of lower PFTs is continuing and I am generally declining fairly quickly. For the first time in my life, I heard the word "transplant" directed at me. No, no, no, I am not ready for this!

I am actually feeling better now than I did in september when I spent 3 weeks in lock up, but on paper I'm actually worse. I have lost about 15 lbs since September and I've been on IV abx for the past 8 of 16 weeks. The highest FEV1 I've blown in those 4 months was 35% and the highest I could get this time was 26% and I'm on 02 at night and when I'm out. It was basically decided that it is time I start thinking about a tx and looking into which centers are available and beginning the evaluation process.

I guess I am just in shock at how quickly this has happened! I say this again and again, but it feels like it happened over night. Not even 2 years ago I was still VERY healthy and now this! I'm totally compliant, I do my treatments religiously, do what the docs tell me. With that approach, I had it all planned out to have another 20 healthy years! It still feels totally surreal. I haven't talked to anybody in my personal life about it yet outside of my parents... quite frankly, I don't know how. I just feel like I'm at the end of my rope both physically and emotionally and I just hope I can find the strength that some of you have to get through this.


From now on, I am going to make a genuine effort to get on this forum when I'm NOT feeling sick and miserable, because right now I feel like a walking pity party... LOL So I hope you all can forgive me for it this time and give me some encouragement or something, like I know you are all so great at doing.


Oh, and one more thing - this feels like it is more of a blog entry rather than a forum post, and I would like to try to keep a blog, but my technologically impaired self can't figure out how to make a blog. Can anyone help?
 
B

b12bc

New member
So I "broke the news" so to speak to a couple of you in chat last night. I had a clinic visit last week and sure enough the trend of lower PFTs is continuing and I am generally declining fairly quickly. For the first time in my life, I heard the word "transplant" directed at me. No, no, no, I am not ready for this!

I am actually feeling better now than I did in september when I spent 3 weeks in lock up, but on paper I'm actually worse. I have lost about 15 lbs since September and I've been on IV abx for the past 8 of 16 weeks. The highest FEV1 I've blown in those 4 months was 35% and the highest I could get this time was 26% and I'm on 02 at night and when I'm out. It was basically decided that it is time I start thinking about a tx and looking into which centers are available and beginning the evaluation process.

I guess I am just in shock at how quickly this has happened! I say this again and again, but it feels like it happened over night. Not even 2 years ago I was still VERY healthy and now this! I'm totally compliant, I do my treatments religiously, do what the docs tell me. With that approach, I had it all planned out to have another 20 healthy years! It still feels totally surreal. I haven't talked to anybody in my personal life about it yet outside of my parents... quite frankly, I don't know how. I just feel like I'm at the end of my rope both physically and emotionally and I just hope I can find the strength that some of you have to get through this.


From now on, I am going to make a genuine effort to get on this forum when I'm NOT feeling sick and miserable, because right now I feel like a walking pity party... LOL So I hope you all can forgive me for it this time and give me some encouragement or something, like I know you are all so great at doing.


Oh, and one more thing - this feels like it is more of a blog entry rather than a forum post, and I would like to try to keep a blog, but my technologically impaired self can't figure out how to make a blog. Can anyone help?
 
B

b12bc

New member
So I "broke the news" so to speak to a couple of you in chat last night. I had a clinic visit last week and sure enough the trend of lower PFTs is continuing and I am generally declining fairly quickly. For the first time in my life, I heard the word "transplant" directed at me. No, no, no, I am not ready for this!
<br />
<br />I am actually feeling better now than I did in september when I spent 3 weeks in lock up, but on paper I'm actually worse. I have lost about 15 lbs since September and I've been on IV abx for the past 8 of 16 weeks. The highest FEV1 I've blown in those 4 months was 35% and the highest I could get this time was 26% and I'm on 02 at night and when I'm out. It was basically decided that it is time I start thinking about a tx and looking into which centers are available and beginning the evaluation process.
<br />
<br />I guess I am just in shock at how quickly this has happened! I say this again and again, but it feels like it happened over night. Not even 2 years ago I was still VERY healthy and now this! I'm totally compliant, I do my treatments religiously, do what the docs tell me. With that approach, I had it all planned out to have another 20 healthy years! It still feels totally surreal. I haven't talked to anybody in my personal life about it yet outside of my parents... quite frankly, I don't know how. I just feel like I'm at the end of my rope both physically and emotionally and I just hope I can find the strength that some of you have to get through this.
<br />
<br />
<br />From now on, I am going to make a genuine effort to get on this forum when I'm NOT feeling sick and miserable, because right now I feel like a walking pity party... LOL So I hope you all can forgive me for it this time and give me some encouragement or something, like I know you are all so great at doing.
<br />
<br />
<br />Oh, and one more thing - this feels like it is more of a blog entry rather than a forum post, and I would like to try to keep a blog, but my technologically impaired self can't figure out how to make a blog. Can anyone help?
 
T

TonyaH

Guest
Well, first of all everyone needs to give themselves a pity party from time to time in order to get up the next day with a positive attitude. However, I don't think what you are saying is anything like a pity party. I think you just had a huge snowball of reality thrown at you and it will take a little time to wipe yourself off so you can throw back.

I know there are many others here who can be of more help than me. However, I just wanted to take a moment to let you know I heard you, that I feel for you, and that you can come here to vent ANY TIME YOU WANT. That is what this place is for! Who else will understand more???

Take care of youself, and I'll look for updates
 
T

TonyaH

Guest
Well, first of all everyone needs to give themselves a pity party from time to time in order to get up the next day with a positive attitude. However, I don't think what you are saying is anything like a pity party. I think you just had a huge snowball of reality thrown at you and it will take a little time to wipe yourself off so you can throw back.

I know there are many others here who can be of more help than me. However, I just wanted to take a moment to let you know I heard you, that I feel for you, and that you can come here to vent ANY TIME YOU WANT. That is what this place is for! Who else will understand more???

Take care of youself, and I'll look for updates
 
T

TonyaH

Guest
Well, first of all everyone needs to give themselves a pity party from time to time in order to get up the next day with a positive attitude. However, I don't think what you are saying is anything like a pity party. I think you just had a huge snowball of reality thrown at you and it will take a little time to wipe yourself off so you can throw back.
<br />
<br />I know there are many others here who can be of more help than me. However, I just wanted to take a moment to let you know I heard you, that I feel for you, and that you can come here to vent ANY TIME YOU WANT. That is what this place is for! Who else will understand more???
<br />
<br />Take care of youself, and I'll look for updates
 
J

JORDYSMOM

New member
Sorry I missed chat last night. Time got away from me, and everyone was gone by the time I checked in.

We all have our days. There isn't a one of us who hasn't been in chat venting, and getting support over something that hit us a bit hard. You're entitled. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can only try to imagine how hearing that word made you feel. I know this site has many people who can relate, and help you along.

As far as a blog goes, just click on Blogs above, and then right above where all of the blog owners names are listed, there's a link that says "sign up for a blog". Just click it, and it will walk you through. Or, you can send a message to Ennio, and he will take care of you.

Stacey
 
J

JORDYSMOM

New member
Sorry I missed chat last night. Time got away from me, and everyone was gone by the time I checked in.

We all have our days. There isn't a one of us who hasn't been in chat venting, and getting support over something that hit us a bit hard. You're entitled. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can only try to imagine how hearing that word made you feel. I know this site has many people who can relate, and help you along.

As far as a blog goes, just click on Blogs above, and then right above where all of the blog owners names are listed, there's a link that says "sign up for a blog". Just click it, and it will walk you through. Or, you can send a message to Ennio, and he will take care of you.

Stacey
 
J

JORDYSMOM

New member
Sorry I missed chat last night. Time got away from me, and everyone was gone by the time I checked in.
<br />
<br />We all have our days. There isn't a one of us who hasn't been in chat venting, and getting support over something that hit us a bit hard. You're entitled. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can only try to imagine how hearing that word made you feel. I know this site has many people who can relate, and help you along.
<br />
<br />As far as a blog goes, just click on Blogs above, and then right above where all of the blog owners names are listed, there's a link that says "sign up for a blog". Just click it, and it will walk you through. Or, you can send a message to Ennio, and he will take care of you.
<br />
<br />Stacey
 
M

mag6125

New member
I know how you feel, I was totally freaked out the first couple times my docs mentioned transplant and like you my pfts dropped pretty quickly. I went from running around playing softball and hockey to not being able to walk up stairs in about a year or so. My docs have told me I've been losing about 7% lung function per year which is much higher than the national average of 2% and they can't slow it down and they don't know why its happening. The first time they bring up transplant you spend so much time just trying to wrap your head around the idea its really hard to even start to think about it, but give yourself a couple of days and then start looking for info and writing down questions you have. Its always a stressful thing but if you prepare yourself ahead of time and read as much info as you can it makes the process a little easier and a little less scary. Feel free to pm me or you can email me or find me on facebook if you want someone to talk to. Shelly Green mag6125@yahoo.com
 
M

mag6125

New member
I know how you feel, I was totally freaked out the first couple times my docs mentioned transplant and like you my pfts dropped pretty quickly. I went from running around playing softball and hockey to not being able to walk up stairs in about a year or so. My docs have told me I've been losing about 7% lung function per year which is much higher than the national average of 2% and they can't slow it down and they don't know why its happening. The first time they bring up transplant you spend so much time just trying to wrap your head around the idea its really hard to even start to think about it, but give yourself a couple of days and then start looking for info and writing down questions you have. Its always a stressful thing but if you prepare yourself ahead of time and read as much info as you can it makes the process a little easier and a little less scary. Feel free to pm me or you can email me or find me on facebook if you want someone to talk to. Shelly Green mag6125@yahoo.com
 
M

mag6125

New member
I know how you feel, I was totally freaked out the first couple times my docs mentioned transplant and like you my pfts dropped pretty quickly. I went from running around playing softball and hockey to not being able to walk up stairs in about a year or so. My docs have told me I've been losing about 7% lung function per year which is much higher than the national average of 2% and they can't slow it down and they don't know why its happening. The first time they bring up transplant you spend so much time just trying to wrap your head around the idea its really hard to even start to think about it, but give yourself a couple of days and then start looking for info and writing down questions you have. Its always a stressful thing but if you prepare yourself ahead of time and read as much info as you can it makes the process a little easier and a little less scary. Feel free to pm me or you can email me or find me on facebook if you want someone to talk to. Shelly Green mag6125@yahoo.com
 
T

theLostMiler

New member
transplant IS a BIG word! My tx doctor keeps reminding me its okay to be scared, and to be thinking about it (a lot, which I do). I have had the word thrown at me since May 2008, and I am not even listed yet, but I swear its all I think about...

I mean, its our own mortality we are facing, the fact that you have one year, maybe two left and a transplant is potentially a life saving surgery. Its totally wild. Being ripped apart, having something so essential as lungs being replaced with a strangers... I have had as much time as I have had and I still am in awe of the whole procedure and process.

I had just really learned about transplants (I had no idea to look for people with cf online until March of 2008) so I had some idea of what the scars looked like and the surgery, but not much on the process, or when you were ideally supposed to be listed. My doctor only brought up transplant because of the bugs I have, he wanted to have a center say "Yes, we will transplant you when the time comes" just in case I suddenly became resistant, or the bugs caused some other complication. I had my first consultation with a center that said, "yes" in May of 2009, and at that time, I was too healthy. I have a relatively high FEV1, I had just come off of 3 months of iv abx and was slowly gaining weight at that time with my g-tube. I still was sensative to a few drugs (for all bugs).
I was supposed to go back in 6 months (October) but I cancelled (based on talking to my drs.) b/c I was feeling SO GOOD... well a week or two later I was in the hospital with a partial collasped lung! haha

So now I am going back down in January, and we are thinking it might be the time to discuss actually being listed this time (though I think I will be relatively low). I have one or two abx left for my m. abscessus (hence tx is more of a need, b/c I cant treat it now b/c I need to save those for after tx). I felt really bad since the hospitalization, but the last week I have been going back up (less o2 use, more energy)... its these times I feel like tx is still eons away, but just during that month of hell, I felt so ready b/c my quality of life was basically non existant.

The point is, my FEV1 is going down (probably at that 3-5% per year) so not too drastically, but its a downward trend so thats another reason to look at being listed sooner rather than later. My tx doc often emphasizes the idea that its such a fine line with tx, b/c you dont want to be "too healthy" but if healthier before tx, the better you do afterwards, but you dont want to be "too sick" that you cant survie afterwards either.

ugh, sorry for my word/story of my life vomit. Everyone knows in my family know, b/c we've had a lot of time to "mull" over the idea of it all and its still a somewhat shocking idea. But im excited at the same time.
 
T

theLostMiler

New member
transplant IS a BIG word! My tx doctor keeps reminding me its okay to be scared, and to be thinking about it (a lot, which I do). I have had the word thrown at me since May 2008, and I am not even listed yet, but I swear its all I think about...

I mean, its our own mortality we are facing, the fact that you have one year, maybe two left and a transplant is potentially a life saving surgery. Its totally wild. Being ripped apart, having something so essential as lungs being replaced with a strangers... I have had as much time as I have had and I still am in awe of the whole procedure and process.

I had just really learned about transplants (I had no idea to look for people with cf online until March of 2008) so I had some idea of what the scars looked like and the surgery, but not much on the process, or when you were ideally supposed to be listed. My doctor only brought up transplant because of the bugs I have, he wanted to have a center say "Yes, we will transplant you when the time comes" just in case I suddenly became resistant, or the bugs caused some other complication. I had my first consultation with a center that said, "yes" in May of 2009, and at that time, I was too healthy. I have a relatively high FEV1, I had just come off of 3 months of iv abx and was slowly gaining weight at that time with my g-tube. I still was sensative to a few drugs (for all bugs).
I was supposed to go back in 6 months (October) but I cancelled (based on talking to my drs.) b/c I was feeling SO GOOD... well a week or two later I was in the hospital with a partial collasped lung! haha

So now I am going back down in January, and we are thinking it might be the time to discuss actually being listed this time (though I think I will be relatively low). I have one or two abx left for my m. abscessus (hence tx is more of a need, b/c I cant treat it now b/c I need to save those for after tx). I felt really bad since the hospitalization, but the last week I have been going back up (less o2 use, more energy)... its these times I feel like tx is still eons away, but just during that month of hell, I felt so ready b/c my quality of life was basically non existant.

The point is, my FEV1 is going down (probably at that 3-5% per year) so not too drastically, but its a downward trend so thats another reason to look at being listed sooner rather than later. My tx doc often emphasizes the idea that its such a fine line with tx, b/c you dont want to be "too healthy" but if healthier before tx, the better you do afterwards, but you dont want to be "too sick" that you cant survie afterwards either.

ugh, sorry for my word/story of my life vomit. Everyone knows in my family know, b/c we've had a lot of time to "mull" over the idea of it all and its still a somewhat shocking idea. But im excited at the same time.
 
T

theLostMiler

New member
transplant IS a BIG word! My tx doctor keeps reminding me its okay to be scared, and to be thinking about it (a lot, which I do). I have had the word thrown at me since May 2008, and I am not even listed yet, but I swear its all I think about...
<br />
<br />I mean, its our own mortality we are facing, the fact that you have one year, maybe two left and a transplant is potentially a life saving surgery. Its totally wild. Being ripped apart, having something so essential as lungs being replaced with a strangers... I have had as much time as I have had and I still am in awe of the whole procedure and process.
<br />
<br />I had just really learned about transplants (I had no idea to look for people with cf online until March of 2008) so I had some idea of what the scars looked like and the surgery, but not much on the process, or when you were ideally supposed to be listed. My doctor only brought up transplant because of the bugs I have, he wanted to have a center say "Yes, we will transplant you when the time comes" just in case I suddenly became resistant, or the bugs caused some other complication. I had my first consultation with a center that said, "yes" in May of 2009, and at that time, I was too healthy. I have a relatively high FEV1, I had just come off of 3 months of iv abx and was slowly gaining weight at that time with my g-tube. I still was sensative to a few drugs (for all bugs).
<br />I was supposed to go back in 6 months (October) but I cancelled (based on talking to my drs.) b/c I was feeling SO GOOD... well a week or two later I was in the hospital with a partial collasped lung! haha
<br />
<br />So now I am going back down in January, and we are thinking it might be the time to discuss actually being listed this time (though I think I will be relatively low). I have one or two abx left for my m. abscessus (hence tx is more of a need, b/c I cant treat it now b/c I need to save those for after tx). I felt really bad since the hospitalization, but the last week I have been going back up (less o2 use, more energy)... its these times I feel like tx is still eons away, but just during that month of hell, I felt so ready b/c my quality of life was basically non existant.
<br />
<br />The point is, my FEV1 is going down (probably at that 3-5% per year) so not too drastically, but its a downward trend so thats another reason to look at being listed sooner rather than later. My tx doc often emphasizes the idea that its such a fine line with tx, b/c you dont want to be "too healthy" but if healthier before tx, the better you do afterwards, but you dont want to be "too sick" that you cant survie afterwards either.
<br />
<br />ugh, sorry for my word/story of my life vomit. Everyone knows in my family know, b/c we've had a lot of time to "mull" over the idea of it all and its still a somewhat shocking idea. But im excited at the same time.
 
B

b12bc

New member
Thank you all SO much. You are such wonderful people... I haven't posted a whole lot on here, but when I do you guys are all right there for a virtual stranger. THANK YOU.


LostMiler, you summed it up so well... I just can't get my mind off of it. I mean, I've always known that it is pretty much inevitable somewhere far off down the road, but now NOW. Just 2 years my FEV1 was a solid 90%... I had no idea that it was POSSIBLE to drop so severely. I have spent so much time sick though and each time has been worse than the previous and I would seem to plateau at the "new low" without much hope of bringing it up... it went from 90 to about 75 to the mid 60s to the 40s and now 20%s in just a matter of months really. It's hard not to get wrapped up in the numbers even though I'm sure that isn't helping much. I keep thinking about what happens if I get really sick again soon, which has been the trend, I'm running out of numbers to lose. This is just the confirmation that I didn't want to hear that it really is as bad as it seems. I'm a glass half full eternal optimist type, but it is seriously difficult to keep up that outlook right now when it seems like everything is crashing. I KNOW that a transplant isn't the end of the world, but I feel like somebody just stole half of my life from me and I can't do anything about it other than cry right now.

Again, thak you and hugs for you all.
 
B

b12bc

New member
Thank you all SO much. You are such wonderful people... I haven't posted a whole lot on here, but when I do you guys are all right there for a virtual stranger. THANK YOU.


LostMiler, you summed it up so well... I just can't get my mind off of it. I mean, I've always known that it is pretty much inevitable somewhere far off down the road, but now NOW. Just 2 years my FEV1 was a solid 90%... I had no idea that it was POSSIBLE to drop so severely. I have spent so much time sick though and each time has been worse than the previous and I would seem to plateau at the "new low" without much hope of bringing it up... it went from 90 to about 75 to the mid 60s to the 40s and now 20%s in just a matter of months really. It's hard not to get wrapped up in the numbers even though I'm sure that isn't helping much. I keep thinking about what happens if I get really sick again soon, which has been the trend, I'm running out of numbers to lose. This is just the confirmation that I didn't want to hear that it really is as bad as it seems. I'm a glass half full eternal optimist type, but it is seriously difficult to keep up that outlook right now when it seems like everything is crashing. I KNOW that a transplant isn't the end of the world, but I feel like somebody just stole half of my life from me and I can't do anything about it other than cry right now.

Again, thak you and hugs for you all.
 
B

b12bc

New member
Thank you all SO much. You are such wonderful people... I haven't posted a whole lot on here, but when I do you guys are all right there for a virtual stranger. THANK YOU.
<br />
<br />
<br />LostMiler, you summed it up so well... I just can't get my mind off of it. I mean, I've always known that it is pretty much inevitable somewhere far off down the road, but now NOW. Just 2 years my FEV1 was a solid 90%... I had no idea that it was POSSIBLE to drop so severely. I have spent so much time sick though and each time has been worse than the previous and I would seem to plateau at the "new low" without much hope of bringing it up... it went from 90 to about 75 to the mid 60s to the 40s and now 20%s in just a matter of months really. It's hard not to get wrapped up in the numbers even though I'm sure that isn't helping much. I keep thinking about what happens if I get really sick again soon, which has been the trend, I'm running out of numbers to lose. This is just the confirmation that I didn't want to hear that it really is as bad as it seems. I'm a glass half full eternal optimist type, but it is seriously difficult to keep up that outlook right now when it seems like everything is crashing. I KNOW that a transplant isn't the end of the world, but I feel like somebody just stole half of my life from me and I can't do anything about it other than cry right now.
<br />
<br />Again, thak you and hugs for you all.
 
B

beleache

New member
Hi Mel,

I dont have much more to add to the other posts, just wanted to let you know we are here for you.. Hang in there.

Thoughts & Prayers <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Mel,

I dont have much more to add to the other posts, just wanted to let you know we are here for you.. Hang in there.

Thoughts & Prayers <img src="i/expressions/heart.gif" border="0"> joni
 
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