Well I've managed to Depress myself

K

KMV77

New member
If you read my last post, my fev1 is down in the mid 20's. Its weird because I still can do everything I did before. I have started doing the treatments I did before, harder. It now seems that CF is taking over my life, and I keep thinking of what I have read about transplants. I was sick in the past and bounced back but I dont feel sick this time and I think it is more of the progression, which is upsetting. I just started cayston yesterday, and I want it to work, and would like to feel effects already but thats just me being me. I think my anxiety over the whole situation it making it harder to breath too. Anyone have any insight on getting past this bad spot?
Kevin
 
K

KMV77

New member
If you read my last post, my fev1 is down in the mid 20's. Its weird because I still can do everything I did before. I have started doing the treatments I did before, harder. It now seems that CF is taking over my life, and I keep thinking of what I have read about transplants. I was sick in the past and bounced back but I dont feel sick this time and I think it is more of the progression, which is upsetting. I just started cayston yesterday, and I want it to work, and would like to feel effects already but thats just me being me. I think my anxiety over the whole situation it making it harder to breath too. Anyone have any insight on getting past this bad spot?
Kevin
 
K

KMV77

New member
If you read my last post, my fev1 is down in the mid 20's. Its weird because I still can do everything I did before. I have started doing the treatments I did before, harder. It now seems that CF is taking over my life, and I keep thinking of what I have read about transplants. I was sick in the past and bounced back but I dont feel sick this time and I think it is more of the progression, which is upsetting. I just started cayston yesterday, and I want it to work, and would like to feel effects already but thats just me being me. I think my anxiety over the whole situation it making it harder to breath too. Anyone have any insight on getting past this bad spot?
<br />Kevin
 
W

welshwitch

Guest
Hey, is there a social worker at your CF center you can talk to? CF is a very very stressful disease and anyone in our situation would get stressed out. I talk to one about once a month and it helps loads. I would totally recommend it--they're great for helping see the reality of the situation and not jump to conclusions. A doctor can help you with the physical side of this disease, but a counselor is great for the emotional. It's a two way street.
 
W

welshwitch

Guest
Hey, is there a social worker at your CF center you can talk to? CF is a very very stressful disease and anyone in our situation would get stressed out. I talk to one about once a month and it helps loads. I would totally recommend it--they're great for helping see the reality of the situation and not jump to conclusions. A doctor can help you with the physical side of this disease, but a counselor is great for the emotional. It's a two way street.
 
W

welshwitch

Guest
Hey, is there a social worker at your CF center you can talk to? CF is a very very stressful disease and anyone in our situation would get stressed out. I talk to one about once a month and it helps loads. I would totally recommend it--they're great for helping see the reality of the situation and not jump to conclusions. A doctor can help you with the physical side of this disease, but a counselor is great for the emotional. It's a two way street.
 
L

LouLou

New member
There's a counselor in NYC that specializes in working with people with life threatening medical conditions. I hear that this person really gets it. If you want his/her contact info let me know and I will ask the cfer on this site that uses him/her.

Additionally, whenever I feel lack of control or that the disease is taking over I schedule appts with specialists. My logic is at least I'm doing EVERYTHING in my power to control the disease. Of course, this is on top of kicking up the treatments a notch and trying to eat really well. Also, I try to set realistic goals so I can see an end in site. With winter coming you need to get control of your depression because, at least for me, that is when I do a lot of sitting around and thinking too much. Also try to stay busy with things you enjoy including doing one thing each day that you truly enjoy.

I sent the last thread to someone who knows the HUP system and she suggested this...

u know my opinion would def. be to get another opinion...at least go to the other Dr H who is now the CF center director at UPenn. we have had quite a few patients do this so it is something they are very accustom too. Sometimes fresh eyes look at things differently....

my other thoughts for Kevin...would be if he is treating the asthmatic component of his CF to the max.? Does he do stuff everyday for that? Does he pretreat with bronchodilator (albuterol before going to the gym, and not for 6 min. walk? that could account for the different oxygen levels.

it is known that machines are different, it is more about the consistency on one machine....same with weights.
 
L

LouLou

New member
There's a counselor in NYC that specializes in working with people with life threatening medical conditions. I hear that this person really gets it. If you want his/her contact info let me know and I will ask the cfer on this site that uses him/her.

Additionally, whenever I feel lack of control or that the disease is taking over I schedule appts with specialists. My logic is at least I'm doing EVERYTHING in my power to control the disease. Of course, this is on top of kicking up the treatments a notch and trying to eat really well. Also, I try to set realistic goals so I can see an end in site. With winter coming you need to get control of your depression because, at least for me, that is when I do a lot of sitting around and thinking too much. Also try to stay busy with things you enjoy including doing one thing each day that you truly enjoy.

I sent the last thread to someone who knows the HUP system and she suggested this...

u know my opinion would def. be to get another opinion...at least go to the other Dr H who is now the CF center director at UPenn. we have had quite a few patients do this so it is something they are very accustom too. Sometimes fresh eyes look at things differently....

my other thoughts for Kevin...would be if he is treating the asthmatic component of his CF to the max.? Does he do stuff everyday for that? Does he pretreat with bronchodilator (albuterol before going to the gym, and not for 6 min. walk? that could account for the different oxygen levels.

it is known that machines are different, it is more about the consistency on one machine....same with weights.
 
L

LouLou

New member
There's a counselor in NYC that specializes in working with people with life threatening medical conditions. I hear that this person really gets it. If you want his/her contact info let me know and I will ask the cfer on this site that uses him/her.
<br />
<br />Additionally, whenever I feel lack of control or that the disease is taking over I schedule appts with specialists. My logic is at least I'm doing EVERYTHING in my power to control the disease. Of course, this is on top of kicking up the treatments a notch and trying to eat really well. Also, I try to set realistic goals so I can see an end in site. With winter coming you need to get control of your depression because, at least for me, that is when I do a lot of sitting around and thinking too much. Also try to stay busy with things you enjoy including doing one thing each day that you truly enjoy.
<br />
<br />I sent the last thread to someone who knows the HUP system and she suggested this...
<br />
<br />u know my opinion would def. be to get another opinion...at least go to the other Dr H who is now the CF center director at UPenn. we have had quite a few patients do this so it is something they are very accustom too. Sometimes fresh eyes look at things differently....
<br />
<br />my other thoughts for Kevin...would be if he is treating the asthmatic component of his CF to the max.? Does he do stuff everyday for that? Does he pretreat with bronchodilator (albuterol before going to the gym, and not for 6 min. walk? that could account for the different oxygen levels.
<br />
<br />it is known that machines are different, it is more about the consistency on one machine....same with weights.
 
K

KMV77

New member
Well if I go into the hosp I will see the other Dr. H for my attending. I have an appt with my family dr to see what I can do about this depression. Also I do a duoneb before all my tx's and before I go to the gym. I have noticed that since doing my vest and tx's more my pulse ox is up at rest compared to what it was 2 weeks ago. I sit at 97-98 now instead of 95-96. I felt better when I didnt know my numbers were low than I do now. I'm hoping the Cayston works. I'm only on the second day now.
 
K

KMV77

New member
Well if I go into the hosp I will see the other Dr. H for my attending. I have an appt with my family dr to see what I can do about this depression. Also I do a duoneb before all my tx's and before I go to the gym. I have noticed that since doing my vest and tx's more my pulse ox is up at rest compared to what it was 2 weeks ago. I sit at 97-98 now instead of 95-96. I felt better when I didnt know my numbers were low than I do now. I'm hoping the Cayston works. I'm only on the second day now.
 
K

KMV77

New member
Well if I go into the hosp I will see the other Dr. H for my attending. I have an appt with my family dr to see what I can do about this depression. Also I do a duoneb before all my tx's and before I go to the gym. I have noticed that since doing my vest and tx's more my pulse ox is up at rest compared to what it was 2 weeks ago. I sit at 97-98 now instead of 95-96. I felt better when I didnt know my numbers were low than I do now. I'm hoping the Cayston works. I'm only on the second day now.
 
P

Proxy

New member
Im going through a tough time as well, and I found reaching out to friends and family and not keeping all the burdens inside helped me out alot.
I wish you the best and I hope the Cayston works for you
 
P

Proxy

New member
Im going through a tough time as well, and I found reaching out to friends and family and not keeping all the burdens inside helped me out alot.
I wish you the best and I hope the Cayston works for you
 
P

Proxy

New member
Im going through a tough time as well, and I found reaching out to friends and family and not keeping all the burdens inside helped me out alot.
<br />I wish you the best and I hope the Cayston works for you
 
W

windex125

Guest
Beleive me our lives are like roller coaster rides for sure, I think we understand each other better than others cause we know how hard we work to stay well, and then boom we still get hit with a bug of some sort. I also askd my CF Dr. to prescribe me something for the depression that I feel at times. It works well. I tried a therapist, but you know what she did not even know what CF was and alot of people don't? I do not need to dig into my childhood past to find what is depressing me. I need someone that understands the work I do every single day to stay well. Plus a big issue for me is the constant hacking some days it is just non-stop I just hate it. This disease needs constant attention, it's not like a cancer that can be cut out and yr. done, well most times. Both my parents have passed but both had lung cancer, at different times had surgery and were done with the sickness. Every single day we have to do treamaents, takes meds,ck-ups,follow ups plus all the other ***** and organs it effects? am I allowed to say *****? Sorry - so please know that you are not alone its good to talk with someone abt it, and maybe a anti-depressant will help occassionally. just a idea. Pat 55/ CF / and a whole lot of other stuff
 
W

windex125

Guest
Beleive me our lives are like roller coaster rides for sure, I think we understand each other better than others cause we know how hard we work to stay well, and then boom we still get hit with a bug of some sort. I also askd my CF Dr. to prescribe me something for the depression that I feel at times. It works well. I tried a therapist, but you know what she did not even know what CF was and alot of people don't? I do not need to dig into my childhood past to find what is depressing me. I need someone that understands the work I do every single day to stay well. Plus a big issue for me is the constant hacking some days it is just non-stop I just hate it. This disease needs constant attention, it's not like a cancer that can be cut out and yr. done, well most times. Both my parents have passed but both had lung cancer, at different times had surgery and were done with the sickness. Every single day we have to do treamaents, takes meds,ck-ups,follow ups plus all the other ***** and organs it effects? am I allowed to say *****? Sorry - so please know that you are not alone its good to talk with someone abt it, and maybe a anti-depressant will help occassionally. just a idea. Pat 55/ CF / and a whole lot of other stuff
 
W

windex125

Guest
Beleive me our lives are like roller coaster rides for sure, I think we understand each other better than others cause we know how hard we work to stay well, and then boom we still get hit with a bug of some sort. I also askd my CF Dr. to prescribe me something for the depression that I feel at times. It works well. I tried a therapist, but you know what she did not even know what CF was and alot of people don't? I do not need to dig into my childhood past to find what is depressing me. I need someone that understands the work I do every single day to stay well. Plus a big issue for me is the constant hacking some days it is just non-stop I just hate it. This disease needs constant attention, it's not like a cancer that can be cut out and yr. done, well most times. Both my parents have passed but both had lung cancer, at different times had surgery and were done with the sickness. Every single day we have to do treamaents, takes meds,ck-ups,follow ups plus all the other ***** and organs it effects? am I allowed to say *****? Sorry - so please know that you are not alone its good to talk with someone abt it, and maybe a anti-depressant will help occassionally. just a idea. Pat 55/ CF / and a whole lot of other stuff
 
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