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farbeyond1
11-10-2005, 12:20 AM
Hi Everyone, I'm just trying to find some people to relate to. My name is Mike, I'm 27 living with CF and have posted to this site before and have spoke to a few of you. It's been quite some time since I've last been online. I've spent the past few months trying to get my health in order, but things just won't get better. My lung function is down to 20% and I am awaiting a bi-lateral lung transplant. Although I was in denial of needing this for years, it has finally sunk in. Now I'm at a point that I'm actually anticipating the transplant, as I feel horrible every day now. Although I'm doing poorly physically, I've kept my spirits up mentally.

Most of us in this site either have CF, or know someone close with the disease. Hopefully we can all try and see the strength that it has given us, instead of feeling like it's a disablity. We've gone through some hard times in life, that have made us stronger people. We all have an added wisdom in life from the experiences we've had. Instead of dwelling on feeling physically ill, as I did for many years... I now want to use the strength I've gained from this illness to try and reach out to others. Many people out there just need someone to talk to, some to share their pain with. I hope that for those of you reading this, that may be in the negative slump I was once in... can reach inside yourself and realize that life can be better... if you allow it. Take away all the pain, and turn it into a positive lesson. Something that will make you feel proud and strong to have gone through so much. Many people don't have this opportunity in life. Especially those of us that will be getting a transplant some day. This gives us the chance to start life over again. To see the world through a body that can breathe clearly... something we all wish we could experience.

Personally, I know that for myself... once I get the transplant, I will be grateful to be alive. I vow to myself and all you people out there, that my life will be dedicated to trying to help others cope with this illness. There isn't much available for CF patients in terms of social, psychological and emotional help with dealing with Cystic Fibrosis. That doesn't have to be. We can all try and help one another in our times of need. Right now is a very hard time for me, I am just asked for a few of you to reach out to me. It's very gratifying when you can try and listen to someone else... allow them to vent to you. Although you may know personally know me... know that I am hear to listen if you would like to share your story. I would also be happy to share more of mine.

Well, I won't bore you all to death with too many words... hopefully some of you actually read to this point. It would be great to hear from someone, I respond to all of my emails... but when I'm a little sicker, it may take a little longer. I wish the best of health to all of you, with CF and without. Endulge in the good in life, not the bad. The key to happiness for me, was making peace with myself and accepting the life I've been given. I realized that all the hate I felt, the resentment and anger where actually myself feeling unhappy because of how my life was. The only way to change this, is to change the way you percieve life. If you think positive, you will feel much better about yourself and those around you. I hope this messsage didn't sound too preachy. My intent is to try and reach out to those that seem unreachable.

I can be reached at "[email protected]" Please put CYSTIC FIBROSIS in the subject line... Thanks )

Take care,
Mike

supermanfan
11-16-2005, 02:22 PM
Hello, my name is Denise, and I am 36 years old with CF, and a 9 year post transplant patient. I'm glad you came to the realization that you would need a transplant to continue with existance. Unfortunately CF has not cure yet, and although I believe kids are staying healthier with new medical advances CF if a disease that doesn't give up. Therefore those with CF must not ever give up. The disease makes us all stronger in live. If you ever have any questions regarding transplant feel free to email me

[email protected] just put Lung Transplant so I don't think it's junk, and delete it. Best of wishes to you <img src="i/expressions/rose.gif" border="0">

imported_donnadee33
10-31-2006, 06:17 PM
Thank you for sharing your story. &nbsp;I feel the same way most of
the time, I am still trying to learn how to cope with the disease.
&nbsp;I am 33 and I just was diagnosed in March of this year.
&nbsp;I have been in the hospital 4x this year and my FEV1 is down
to 28%. &nbsp;I have been in denial I guess, not knowing how to
deal with this new lifstyle of treatments. &nbsp;I just joined this
site and I am glad to meet people like you who can keep your
spirits up. &nbsp;I hope that everything works out for you.

imported_donnadee33
10-31-2006, 06:17 PM
Thank you for sharing your story. &nbsp;I feel the same way most of
the time, I am still trying to learn how to cope with the disease.
&nbsp;I am 33 and I just was diagnosed in March of this year.
&nbsp;I have been in the hospital 4x this year and my FEV1 is down
to 28%. &nbsp;I have been in denial I guess, not knowing how to
deal with this new lifstyle of treatments. &nbsp;I just joined this
site and I am glad to meet people like you who can keep your
spirits up. &nbsp;I hope that everything works out for you.

imported_donnadee33
10-31-2006, 06:17 PM
Thank you for sharing your story. &nbsp;I feel the same way most of
the time, I am still trying to learn how to cope with the disease.
&nbsp;I am 33 and I just was diagnosed in March of this year.
&nbsp;I have been in the hospital 4x this year and my FEV1 is down
to 28%. &nbsp;I have been in denial I guess, not knowing how to
deal with this new lifstyle of treatments. &nbsp;I just joined this
site and I am glad to meet people like you who can keep your
spirits up. &nbsp;I hope that everything works out for you.

Anywhere
11-03-2006, 08:19 PM
I actually could use talking to people who are at a similiar stage in their cf (waiting for lungs) and those who are post transplant. I don't have a good support system and it wears me thin at times. I am at the point now where I realize I need help with this experience. I am not angry or bitter necessarly, just tired... physically and mentally drained. I don't like to push my issues on people, soo if anyone wants an email buddy let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anywhere
11-03-2006, 08:19 PM
I actually could use talking to people who are at a similiar stage in their cf (waiting for lungs) and those who are post transplant. I don't have a good support system and it wears me thin at times. I am at the point now where I realize I need help with this experience. I am not angry or bitter necessarly, just tired... physically and mentally drained. I don't like to push my issues on people, soo if anyone wants an email buddy let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anywhere
11-03-2006, 08:19 PM
I actually could use talking to people who are at a similiar stage in their cf (waiting for lungs) and those who are post transplant. I don't have a good support system and it wears me thin at times. I am at the point now where I realize I need help with this experience. I am not angry or bitter necessarly, just tired... physically and mentally drained. I don't like to push my issues on people, soo if anyone wants an email buddy let me know. <img src="i/expressions/face-icon-small-smile.gif" border="0">

sunflower
11-09-2006, 05:06 PM
Hi, I am so glad I logged on to the site tonight I felt you guy's have reached out to me (Farbeyond, Superman, Donnadee33). I am new to this and any time I made an attempt to text it would not work but tonight it works!!!. I am feeling very, down and I don't think I can cope well, especially this time around. Just finished 3 weeks IV's and told I have B.Cepacia. I feel I am waiting around to be ill again. I too suffered for years and not knowing what was wrong with me. Doctors said I had sereve Asthma (I have Aspergillious). I was late diganosed at the age of 33yrs of age mentally drained and tired not knowing what was the problem.

I live with my partner who is great!!but, I feel I don't want to be negative all the time, when he asks me, "how are you today" and most of the time I am not well or depressed. I have not accepted "CF" and do not know where to begin.I am bitter and feeling sorry for myself. We would like to try for a baby next year but, he was diganosed as a carrier in March.( Been to a Genetic counsellor).
I just feel if I can talk to you guy's and having someone else around who has the same illness, I would not feel alone would help me if that is ok. I am very confused and I wish you all the best for now, do not want to go on.

Sunflower
paulina 36yrs old
B.Cepacia/APBA
[email protected]

sunflower
11-09-2006, 05:06 PM
Hi, I am so glad I logged on to the site tonight I felt you guy's have reached out to me (Farbeyond, Superman, Donnadee33). I am new to this and any time I made an attempt to text it would not work but tonight it works!!!. I am feeling very, down and I don't think I can cope well, especially this time around. Just finished 3 weeks IV's and told I have B.Cepacia. I feel I am waiting around to be ill again. I too suffered for years and not knowing what was wrong with me. Doctors said I had sereve Asthma (I have Aspergillious). I was late diganosed at the age of 33yrs of age mentally drained and tired not knowing what was the problem.

I live with my partner who is great!!but, I feel I don't want to be negative all the time, when he asks me, "how are you today" and most of the time I am not well or depressed. I have not accepted "CF" and do not know where to begin.I am bitter and feeling sorry for myself. We would like to try for a baby next year but, he was diganosed as a carrier in March.( Been to a Genetic counsellor).
I just feel if I can talk to you guy's and having someone else around who has the same illness, I would not feel alone would help me if that is ok. I am very confused and I wish you all the best for now, do not want to go on.

Sunflower
paulina 36yrs old
B.Cepacia/APBA
[email protected]

sunflower
11-09-2006, 05:06 PM
Hi, I am so glad I logged on to the site tonight I felt you guy's have reached out to me (Farbeyond, Superman, Donnadee33). I am new to this and any time I made an attempt to text it would not work but tonight it works!!!. I am feeling very, down and I don't think I can cope well, especially this time around. Just finished 3 weeks IV's and told I have B.Cepacia. I feel I am waiting around to be ill again. I too suffered for years and not knowing what was wrong with me. Doctors said I had sereve Asthma (I have Aspergillious). I was late diganosed at the age of 33yrs of age mentally drained and tired not knowing what was the problem.

I live with my partner who is great!!but, I feel I don't want to be negative all the time, when he asks me, "how are you today" and most of the time I am not well or depressed. I have not accepted "CF" and do not know where to begin.I am bitter and feeling sorry for myself. We would like to try for a baby next year but, he was diganosed as a carrier in March.( Been to a Genetic counsellor).
I just feel if I can talk to you guy's and having someone else around who has the same illness, I would not feel alone would help me if that is ok. I am very confused and I wish you all the best for now, do not want to go on.

Sunflower
paulina 36yrs old
B.Cepacia/APBA
[email protected]