It's over.

J

jacobus

Guest
I echo what Mark said. I was given one year to live 7 years ago. If anything I am better now than I was then. Over the last few years I have completely changed my lifestyle, got my diet in order and started daily exercise (treadmill and weight lifting). I am about to turn 30 and my lung function is around 30% (i go on iv's about once a year). I am married, own my own business (work full time), just built a house and finished my honours in law. All in all, I have a great life. Sure, my lungs are crap but truly believe I can improve from where I'm at now. Don't take what the Dr's say as gospel. Despite what they project, they don't know anywhere near as much as they think they do. Good luck with everything. Feel free to message me if you want to chat further.
 
W

windex125

Guest
I am, sitting here crying after reading that, as I read between the lines of fustration and being fed up dealing with this life long struggle. But I must tell you and this is the truth when I went to UNC 2003 for my nasal chloride test for a definite diag. which proved postive. The doctor I saw said that I proably had 4-5yrs tops as the infections were out of control, the MAC was full blown the bronchesestsis (spelt wrong) was as deadly. Many of the drugs were restitant. My son was only 10 I think? and I thought to myself well if my time is here its' here but last month I turned 56. I got more aggressive on my treatments, and had a port put in. Took alot of new posions as I call them, coughed blood for 6 weeks as few years back, took shots of vit.K but like a rubber band I have been over alot of hurdles. I too in my heart felt things are winding down, and also placed a DNR in order. It's hearing it that crashes our emotions. I think you are brave, and sincere and I wish you only the best. I thought I wld consider txbut then after much thought thought the lungs shd go to a younger person. I don't mean to go on and on, but please do one thing share with yr. best freind, don't keep him in the dark, he will be so devestated and he will be angry that you didn't trust him enough to share. who will have to answer his questions? please do that. It's important. I am not sure where my strength comes from on a day to day basis but someone or something is giving me daily help. I am still here for a purpose, though I am not sure what it is yet. OMG I am ranting. Sorry, but please talk with yr. friend. God Bless you did your best, I hope you did..
Pat-56/CF
 
W

windex125

Guest
I am, sitting here crying after reading that, as I read between the lines of fustration and being fed up dealing with this life long struggle. But I must tell you and this is the truth when I went to UNC 2003 for my nasal chloride test for a definite diag. which proved postive. The doctor I saw said that I proably had 4-5yrs tops as the infections were out of control, the MAC was full blown the bronchesestsis (spelt wrong) was as deadly. Many of the drugs were restitant. My son was only 10 I think? and I thought to myself well if my time is here its' here but last month I turned 56. I got more aggressive on my treatments, and had a port put in. Took alot of new posions as I call them, coughed blood for 6 weeks as few years back, took shots of vit.K but like a rubber band I have been over alot of hurdles. I too in my heart felt things are winding down, and also placed a DNR in order. It's hearing it that crashes our emotions. I think you are brave, and sincere and I wish you only the best. I thought I wld consider txbut then after much thought thought the lungs shd go to a younger person. I don't mean to go on and on, but please do one thing share with yr. best freind, don't keep him in the dark, he will be so devestated and he will be angry that you didn't trust him enough to share. who will have to answer his questions? please do that. It's important. I am not sure where my strength comes from on a day to day basis but someone or something is giving me daily help. I am still here for a purpose, though I am not sure what it is yet. OMG I am ranting. Sorry, but please talk with yr. friend. God Bless you did your best, I hope you did..
Pat-56/CF
 
W

windex125

Guest
I am, sitting here crying after reading that, as I read between the lines of fustration and being fed up dealing with this life long struggle. But I must tell you and this is the truth when I went to UNC 2003 for my nasal chloride test for a definite diag. which proved postive. The doctor I saw said that I proably had 4-5yrs tops as the infections were out of control, the MAC was full blown the bronchesestsis (spelt wrong) was as deadly. Many of the drugs were restitant. My son was only 10 I think? and I thought to myself well if my time is here its' here but last month I turned 56. I got more aggressive on my treatments, and had a port put in. Took alot of new posions as I call them, coughed blood for 6 weeks as few years back, took shots of vit.K but like a rubber band I have been over alot of hurdles. I too in my heart felt things are winding down, and also placed a DNR in order. It's hearing it that crashes our emotions. I think you are brave, and sincere and I wish you only the best. I thought I wld consider txbut then after much thought thought the lungs shd go to a younger person. I don't mean to go on and on, but please do one thing share with yr. best freind, don't keep him in the dark, he will be so devestated and he will be angry that you didn't trust him enough to share. who will have to answer his questions? please do that. It's important. I am not sure where my strength comes from on a day to day basis but someone or something is giving me daily help. I am still here for a purpose, though I am not sure what it is yet. OMG I am ranting. Sorry, but please talk with yr. friend. God Bless you did your best, I hope you did..
<br />Pat-56/CF
 
T

Tammy15

New member
I am so sorry . My daughter we were told last april 2009 she was in final stages . She stayed with us and her son until 060410. And yes we disussed DNR/DNI it was her terms and what she wanted. Some doctors insisted she would not be around for xmas 2009, well she told me at that point mom I am not ready to go so I said tell doctors shut up as everytime she went in they kept sayng same things. She became ready June 2010 and let me say she still went out to dinner shopping and did a lot of things with her son, we did things at a slow pace during that final stage period. Her one rule her friends and family could come and be with her in hospital room but no crying in front of her just visit. Tell your friend let him not only be a part of your life whatever time you have and part of your passing. My daughters best friends never stopped thanking me for letting them come and be with her, hold her hand and the one friend who was out of state felt so bad he was not going to get to the hospital but she gave me a message. It will mean a lot to your friend that you trust and want to share tme with him. While I am sure it will take him aback don't sell your fiendship short. I hope this helps you in some way and if you want to talk feel free to send me message
Tammy mom to Steph darrell and Rachel
 
T

Tammy15

New member
I am so sorry . My daughter we were told last april 2009 she was in final stages . She stayed with us and her son until 060410. And yes we disussed DNR/DNI it was her terms and what she wanted. Some doctors insisted she would not be around for xmas 2009, well she told me at that point mom I am not ready to go so I said tell doctors shut up as everytime she went in they kept sayng same things. She became ready June 2010 and let me say she still went out to dinner shopping and did a lot of things with her son, we did things at a slow pace during that final stage period. Her one rule her friends and family could come and be with her in hospital room but no crying in front of her just visit. Tell your friend let him not only be a part of your life whatever time you have and part of your passing. My daughters best friends never stopped thanking me for letting them come and be with her, hold her hand and the one friend who was out of state felt so bad he was not going to get to the hospital but she gave me a message. It will mean a lot to your friend that you trust and want to share tme with him. While I am sure it will take him aback don't sell your fiendship short. I hope this helps you in some way and if you want to talk feel free to send me message
Tammy mom to Steph darrell and Rachel
 
T

Tammy15

New member
I am so sorry . My daughter we were told last april 2009 she was in final stages . She stayed with us and her son until 060410. And yes we disussed DNR/DNI it was her terms and what she wanted. Some doctors insisted she would not be around for xmas 2009, well she told me at that point mom I am not ready to go so I said tell doctors shut up as everytime she went in they kept sayng same things. She became ready June 2010 and let me say she still went out to dinner shopping and did a lot of things with her son, we did things at a slow pace during that final stage period. Her one rule her friends and family could come and be with her in hospital room but no crying in front of her just visit. Tell your friend let him not only be a part of your life whatever time you have and part of your passing. My daughters best friends never stopped thanking me for letting them come and be with her, hold her hand and the one friend who was out of state felt so bad he was not going to get to the hospital but she gave me a message. It will mean a lot to your friend that you trust and want to share tme with him. While I am sure it will take him aback don't sell your fiendship short. I hope this helps you in some way and if you want to talk feel free to send me message
<br />Tammy mom to Steph darrell and Rachel
 
J

Jeana

New member
Your post brought tears to my eyes and a lump to my throat. I guess all I really want to say is that only God knows the number of days we will be on this earth. I've heard so many say that when they thought it was over, they worked really hard and were able to gain some lung function back. I am curious as to why they would deny your transplant.

Anyway, I hope you reach out to your friend, because he's going to need closure and it will be so much easier for him, if he's not surprised at the end. I pray that you have peace.
 
J

Jeana

New member
Your post brought tears to my eyes and a lump to my throat. I guess all I really want to say is that only God knows the number of days we will be on this earth. I've heard so many say that when they thought it was over, they worked really hard and were able to gain some lung function back. I am curious as to why they would deny your transplant.

Anyway, I hope you reach out to your friend, because he's going to need closure and it will be so much easier for him, if he's not surprised at the end. I pray that you have peace.
 
J

Jeana

New member
Your post brought tears to my eyes and a lump to my throat. I guess all I really want to say is that only God knows the number of days we will be on this earth. I've heard so many say that when they thought it was over, they worked really hard and were able to gain some lung function back. I am curious as to why they would deny your transplant.
<br />
<br />Anyway, I hope you reach out to your friend, because he's going to need closure and it will be so much easier for him, if he's not surprised at the end. I pray that you have peace.
 
You must log in or register to reply here.
Top