The Will to Live

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EnergyGal

New member
Hi all

I guess you can say I am new to this site as I have not posted in a few years. About six months ago, I had another double lung transplant and I was really scared as my first transplant was a success for eight years actually I felt pretty good for nine years even though I was in chronic rejection. I always knew that I was survivor after my first transplant. I never considered living day to day with Cf as being a survivor. I look back now and I can say that living with CF is a daily responsibilty and one that you cannot take for granted. My question to those who are interested in sharing in this discussion is, do you consider yourself a survivor and if so and why? We all have different experiences and seeing other loved ones suffer or have an ordeal to go through sometimes makes us stronger or more insightful people. My experience happend to be with myself and not with someone else who I love dearly. life is so precious no matter how healthy or sick someone is as long as their is life there is always hope.

Thank you in advance
Risa
double lung 1/21/96
7-25-05
 
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Allie

New member
Do I consider myself a survivor? I guess. I wouldn't lump myself in with people who have lived with different problems, but I survived something I neevr thought I would.

Even when Ry and I were dating, although he was very explicit with me about his shortened life expectancy, I never really took it seriously. Ry was always such a spitfire, I figured he'd convince God that it wasn't in his best interests to have Ry in heaven. For years, it was something I knew, and we talked about, but it always seemed like a theoretical question.

And then he got cepacia. It was absolutely deadly for Ry, and killed him in about two and a half years time. When he was declinging so quickly, both of us were sort of in shock, saying to ourselves, <i>this can't be happening, it'll turn around, there's no way this is happening</i> But it got very real, very fast. Seeing my vibrant, funny, mile a minute husband get so weak that he could barely walk to the bathroom took a huge toll on me emotionally. But we got through it together.

When he died, it was a different story. I no longer had him to bounce things off of, or talk to, or joke with, and felt the pain of his absence fiercly. I used to lie on the floor and cry and beg for him to return to me. It was probably the rockiest 3 months of my life, right after he died...I thought for sure I couldn't survive it, my heart would die of grief.

Albert Camus once said "It was in the midst of winter I learned there was in me an invincible summer" I got medication, pulled myself up off the floor, and started to face the morning sun that dared to rise. I held tightly to my happy memories of Ry, and reminded myself like some sort of meditative mantra that he was better now, and not in pain anymore. It wasn't, and isn't, always easy, but I can say I have survived it. I don't know if I'm stronger, but I am different. I'm not as shy and timid, I wil stand up for myself much more now. I like to think Ry gave that to me. Cf took him, but it will not conquer me.

Not sure if that's what you were looking for....
 
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EnergyGal

New member
Allie,

I read some of your posts and feel for you. The love you have shared and the love you will always have is something that many people will never experience. You sound to me like a woman who has so much love, compassion and strength. I am very happy that you met Ry (cool name) and that you shared your lives together.

I would not say I am looking for an answer on this discussion just if someone had walked through a difficult situation that they thought would be extremely difficult to handle how did they survive it. You answered the question perfectly.
Thank you
Risa
 
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cdale613

New member
I agree fully with Sean - Its a very simple question for me, and the simple answer is yes.

I fight everyday to do what I can to control and minimize the impacts of CF on my life. I make it a point to do the things that I have been told I'm not supposed to be able to do.

CF is there everyday, if I'm not ready to face it each day, it wins. So far I've survived almost 26 years, 22 knowingly spent fighting.

I don't miss treatments. I've never smoked, I almost never drink. I excercise almost everyday. I went to college. I went to Grad school. I work fulltime. I've run a 4 minute 34 second mile.

Yes, much of my success may be due to genetic factors, however, inorder to successfully fight CF, I must believe that the time I put into taking care of myself pays dividends, and it has. If it I left it up to genetics, I'd be dead.

Chris
25 w/CF
 
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kybert

New member
hi risa! i had no idea that you went for another transplant. last i heard you were having some troubles but you said it wasnt too serious. is everything going well???
 
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EnergyGal

New member
Hi Kybert

I was stable when I last spoke to you. Then I caught the flu and went down hill and fortunately was already listed but as inactive. Then became active and now i feel great again.

By the way, the trampoline i got is awesome. I sleep so soundly and wake up after six hours feeling like doing jumping jacks. lol

something is amazing about that kind of workout.
Risa
 
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