Heading back to 60+ FEV1 from 26.

[LouLou]

I have to agree with Lex. And it's not about giving up, it's about being prepared. Heck, I've even talked with my doc about transplant because I want to him to know when it gets to that point I opt "in" for a transplant.

I've been a member of this site since 2006 and have watched a few people go through the process in very close detail because they shared the experience (thanks coltsfan and others). I will say 1) it's not easy. There is rigorous tests involved and it would be easier to do the tests at 30% than at 20%. At some point, the testing becomes impossible. And if they never did the testing, I'm not sure they can just list you. They have to make sure you are really elgible from many different perspectives.

UPenn may not have brought it up because of prior history. Unfortunately compliance is very important. You are compliant now & I believe that is what is important. Perhaps they don't feel you are a candidate for some reason for their transplant center. Wouldn't you sure as heck like to know that now so you can drive just an hour away to say Columbia (maybe even a better tx center) and get evaluated or possibly cross listed there.

I know you want to get back to 60%. And I dont' remember how long ago you were at that point. Perhaps it's possible but really get evaluated if you are planning to transplant. A perk is that you will then get pulmonary rehab too which will be great for accomplishing your exercise goal.

 

[LouLou]

I have to agree with Lex. And it's not about giving up, it's about being prepared. Heck, I've even talked with my doc about transplant because I want to him to know when it gets to that point I opt "in" for a transplant.

I've been a member of this site since 2006 and have watched a few people go through the process in very close detail because they shared the experience (thanks coltsfan and others). I will say 1) it's not easy. There is rigorous tests involved and it would be easier to do the tests at 30% than at 20%. At some point, the testing becomes impossible. And if they never did the testing, I'm not sure they can just list you. They have to make sure you are really elgible from many different perspectives.

UPenn may not have brought it up because of prior history. Unfortunately compliance is very important. You are compliant now & I believe that is what is important. Perhaps they don't feel you are a candidate for some reason for their transplant center. Wouldn't you sure as heck like to know that now so you can drive just an hour away to say Columbia (maybe even a better tx center) and get evaluated or possibly cross listed there.

I know you want to get back to 60%. And I dont' remember how long ago you were at that point. Perhaps it's possible but really get evaluated if you are planning to transplant. A perk is that you will then get pulmonary rehab too which will be great for accomplishing your exercise goal.

 

[LouLou]

but bottomline if transplant is what you plan to do should you "get to that point" than you might want to start the research process.

I have to say I never knew FEF25-75 could be single digits. Scary dude! Please take care of yourself. Lots of Vit C & hand washing! - no colds.

 

[LouLou]

but bottomline if transplant is what you plan to do should you "get to that point" than you might want to start the research process.

I have to say I never knew FEF25-75 could be single digits. Scary dude! Please take care of yourself. Lots of Vit C & hand washing! - no colds.

 

[musclemania70]

as someone else on this board proclaims, 'tis better to be proactive than reactive about your health'.
don't expect someone else to decide when the time is right for you to get prepared.

 

[musclemania70]

as someone else on this board proclaims, 'tis better to be proactive than reactive about your health'.
don't expect someone else to decide when the time is right for you to get prepared.

 

[Incomudrox]

I do agree it's better to be proactive and you're all right for sure. I have hinted and made my intentions know that if it's needed I will do it. So they know it's an option. I wanted to get a BAL done to get an idea of what was going on but he didn't think it was needed. I respect his decision at this point to reserve that right.

As far as my FEF being in the single digits I guess I am extra special? lol - at this point all I can do is laugh right?

I really do appreciate all the care you guys show I feel like I have a family here some of the time. My days of recklessness are long gone. I'll see what they say about it at an up coming appointment and see what they tell me. I have done the research myself. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Incomudrox]

I do agree it's better to be proactive and you're all right for sure. I have hinted and made my intentions know that if it's needed I will do it. So they know it's an option. I wanted to get a BAL done to get an idea of what was going on but he didn't think it was needed. I respect his decision at this point to reserve that right.

As far as my FEF being in the single digits I guess I am extra special? lol - at this point all I can do is laugh right?

I really do appreciate all the care you guys show I feel like I have a family here some of the time. My days of recklessness are long gone. I'll see what they say about it at an up coming appointment and see what they tell me. I have done the research myself. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

Hi Frank, How did the discussion with the doctor go about when it is time to start getting evaluated? It's not like you will need to go active on the list. Just get the tests done so the results are ready and waiting should you need to flip the switch. I feel we would be a negligent community to not be counseling you to do so. We've seen too many people slip away...all it takes it one bad virus when you are in the 30s from what I hear and then it can be a slippery slope downward. If PENN won't consider you better to know now and remember that there are many other good centers in the area. Also, I think it's important to have a chat with the transplant team about the therapies you are doing and if there is any risk from of being disqualified from a transplant. You never know until you ask and disclose. Also on the note of going intense on experimental stuff in end stage we've lost a couple (Hairgirl, Littledebbie, others too) while they were doing stuff that in the end caused extreme shortness of breath or other stuff, bleeds, collapses. Not to try to scare anyone just being realistic.

Do you have any idea if your heart is okay? Sustaining low numbers puts a lot of wear on the heart and it can actually sometimes go before the lungs (Tina C).

I really respect that Jerry has been through evaluation for many years and has opted to be active at times and not at others. The testing process isn't easy and I think each place you list requires their own testing.

Sometimes we need a reality check...you've been in the 30s for 5 months. Perhaps Hadj can provide some stats on what the likelihood of you figuring out a way to get those numbers up? I guess I have to wonder...why is he not suggesting it?! Any insight from anyone who was transplanted by him? (At least I think he is not only a cf dr but also a tx doc).

Want an example right now of someone who was too healthy for tranplant last month and is now in ICU? Talana (who used to visit this site before the major munchhausen debacle). http://www.cf2chat.com/e107/e107_plugins/forum/forum_viewtopic.php?39173

I think doing alternative stuff is great and I'm all for that but I'd like to see you evaluated and see where all your organs are from this disease to better know when it will be transplant time. Also, once you go through eval you will likely be put in a rehab program which many people speak so highly of. Seems win-win.

Good luck!

 

[LouLou]

Hi Frank, How did the discussion with the doctor go about when it is time to start getting evaluated? It's not like you will need to go active on the list. Just get the tests done so the results are ready and waiting should you need to flip the switch. I feel we would be a negligent community to not be counseling you to do so. We've seen too many people slip away...all it takes it one bad virus when you are in the 30s from what I hear and then it can be a slippery slope downward. If PENN won't consider you better to know now and remember that there are many other good centers in the area. Also, I think it's important to have a chat with the transplant team about the therapies you are doing and if there is any risk from of being disqualified from a transplant. You never know until you ask and disclose. Also on the note of going intense on experimental stuff in end stage we've lost a couple (Hairgirl, Littledebbie, others too) while they were doing stuff that in the end caused extreme shortness of breath or other stuff, bleeds, collapses. Not to try to scare anyone just being realistic.

Do you have any idea if your heart is okay? Sustaining low numbers puts a lot of wear on the heart and it can actually sometimes go before the lungs (Tina C).

I really respect that Jerry has been through evaluation for many years and has opted to be active at times and not at others. The testing process isn't easy and I think each place you list requires their own testing.

Sometimes we need a reality check...you've been in the 30s for 5 months. Perhaps Hadj can provide some stats on what the likelihood of you figuring out a way to get those numbers up? I guess I have to wonder...why is he not suggesting it?! Any insight from anyone who was transplanted by him? (At least I think he is not only a cf dr but also a tx doc).

Want an example right now of someone who was too healthy for tranplant last month and is now in ICU? Talana (who used to visit this site before the major munchhausen debacle). http://www.cf2chat.com/e107/e107_plugins/forum/forum_viewtopic.php?39173

I think doing alternative stuff is great and I'm all for that but I'd like to see you evaluated and see where all your organs are from this disease to better know when it will be transplant time. Also, once you go through eval you will likely be put in a rehab program which many people speak so highly of. Seems win-win.

Good luck!

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> as someone else on this board proclaims, 'tis better to be proactive than reactive about your health'. .</end quote>

why thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> as someone else on this board proclaims, 'tis better to be proactive than reactive about your health'. .</end quote>

why thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0">