Anyone want to Vent... or just talk about CF?

farbeyond1

New member
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 "farbeyond1@cox.net" Please put CYSTIC FIBROSIS in the subject line... Thanks )

Take care,
Mike
 

anonymous

New member
Hi Mike

I am glad to hear that you have changed your life in a positive way, that is great news, and i agree with you that when one is positive that they feel better. I am however sad that your PFT's are so low. I will keep you in my thoughts and prayers in hopes that soon you will get a transplant and everything will be fine. I hope that you will continue to post on this site and keep us posted about your health.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Mike,

Thank you very much for posting. I am not a CF patient, however my 3 mos old son was diagnosed at 3 weeks of age. He was just hospitalized with a collapsed lung and cultured for pseudomonas. I try very hard to be positive...however I have gotten to a point of frustration. I am not sure how to balance being over protective of him and yet allowing him to be able to leave the house. Yet on the other hand I am so happy to hear your outlook on life. Do you believe that your attitude came from your parents? Is so why or why not? All I want for my son is to love life and believe in God. And I wish I knew how I could do that...I seem to have forgotten his instruction manual at the hospital after his birth <img src="i/expressions/face-icon-small-smile.gif" border="0">

I am praying for you!!!

Melissa
Caleb 3 mos w/cf
no other children
 

anonymous

New member
Hello Mellisa,

Life is definitely a constant learning lesson. Some things we experience really put our faith to the test. I'm sure it's been difficult for you, watching your infant son go through so many tests. You sound like a very positive person, just by looking into more information on this site shows your dedication to your son. Your strength will help him, as my parents strength helped me. My parents were in thier early 20's when they had me, it was quite tramatic for them to find that thier child had this disease. When I was born "1978" they told my parents that I may not live past age 15, but they didn't let it bring them down. They gave me the best possible life that they could, which has helped me grow into the person I am today. I am truly grateful for them. Now, at age 27 I am facing my own mortality. I am on the transplant list, and have been advised that I am quite high on the list. This means I will be having this surgery within a few months. Nobody can predict the outcome, or how long I will survive after the transplant. The main thing to focus on in life, is that I am happy. I have a good life, and a good family. There is no need for me to focus on possibly dying soon. What I am trying to do, is help my family cope with the fact that I may not be around as long as they would like me to. No matter what negativity we are shown in life, we all have the ability to clear away the gloomy clouds and realize that life is beautiful. Sure, there are countless horrible things going on in the world, which may not make sence to most. I believe that for each horrible thing going on, there is a positive lesson to be learned. We all have the option each day we wake up, to either allow the difficult times we face to consume us, or to push on and stay positive. I will also pray for you and your family Melissa. I hope that whatever happens during your life, you can appreciate the time you do have here. To not be resentful of misfortunes we all ultimately face... and to keep your faith in life and God.

Take care,
Mike
 

cfmomma

New member
Hey Mike,
I am the mom of a 5 year old with CF. He's doing pretty good right now and only spent one night in the hospital following tonsil, adenoid, and polyp removal. I was very devastated when he was diagnosed and can only imagine how your parents felt in 1978 when the life expectancy was much lower. I am 28 and was diagnosed with Crohn's disease at age ten. It is a digestive disease that results in many, many ulcerations throughout the digesive tract. I have had several feet of small intestine, my gallbladder, and appendix removed. Some of the symptoms are very similiar to the digestive symptoms of a CF patient; however it does not affect the lungs at all. I hated it, I felt guilty, depressed, angry and like an outcast...it consumed my life. I finally was able to deal with it through counseling and reaching out.
When my son was diagnosed I was pissed. How could I have a sick kid--there's not supposed to be two people in the same family with a serious disease (well that's what I wanted to believe) Taking my son to all his clinic visits and returning to the hospital I spent much of of my life in brought back all of my "demons". I shut down emotionally and refused to reach out or vent. It was through this CF forum that I began to wake up and start feeling again. I started reading the posts, then posting anonymously, and now I visit this forum all the time. It hasn't taken the pain or fear for my son away but it has helped me to feel again. There are so many wonderful people here who are eager to listen.
I don't mean to ramble on but I want you to know that I am here and so is everybody else. We are here any time you want to vent, cry, laugh and more! I don't know what it's like to grow up with CF but I have experienced a lot of the same emotional issues (even though Crohn's pales in comparison to CF)
I will be praying you get that transplant soon and I will read every post you make when you need to vent. Hang in there.
 

anonymous

New member
Mike,

Thank you for your reply. I want you to know that your words are very peaceful and encouraging. Everyone has a purpose in this life...and I hope my son can be encouraging to others and at peace with everything as you seem to be. Many people who are living with cf, may it be the patient or a dear loved one, tend to put an expiration date on the patient's life. That makes me crazy! I, or my husband, could be going on with our daily lives and then all the sudden God will call us home. There is no expiration dates!! Just sometimes everyone puts an expiration date because they believe they know what is to be expected...which is wrong. If God were to call me home today I would miss my family dearly (if to miss exists in heaven) but WOW Heaven!!! Now that is the better end of the deal. I know what I can pray for you now based on your emails...but if you have a special prayer request please let me know and my husband and I will pray for you...and we are not people who say "I am praying for you" as words of only comfort...but we are really praying for you!!

Melissa
3mos old son w/cf

MELKEES321@hotmail.com
 

candigirl

New member
I had a question about transplant. Im 28 with cf and just in the last three years I have had to be hospitalized for infections.Does that mean that my cf is worsening?.How do you know that you need a transplant or heading in that direction? Do they go by your pft's?. This isnt something that me and my cf doctor has ever discussed.Should I be preparing myself to be put on the list in the near future?.I know its hard to determine because every cf patient is different . My pft's was at 56 percent a week ago following pneumonia. If anyone has any feed back on this that has had some experience that would be great. I just started dating this guy.. its going pretty good and I think its time to tell him about my cf. Dont want to scare him off but I think he needs to know that it is a possibility that I will need a transplant at one point in my life. Has anyone had to go threw this?.How do you go about it without scaring the daylights out of the poor guy?.... Im sorry I posted a couple issues. this has been on my mind and would love for someones opinions <img src="i/expressions/face-icon-small-smile.gif" border="0"> thanks so much Candi
 
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