Since being told that I was in need of a double lung transplant, I feel like I just stalled my life. I need to keep living life while I wait for the call. How do you continue to live life when everything is so hard?
My life consists of eating, sleeping, watching TV, taking medications, chest PT and exercising. I hardly ever leave my house and when I do it is to get more food or medication or go to a doctors appointment.
Before I heard that I needed a lung transplant I did things. It has been so long ago, I don't even know what I did. I know I love to travel, attended sporting events, eat out, visit friends, spend time outside, and spend time with my family.
Today, I am going to put on my big girl panties and start enjoying the things I use to. I know it will be hard but just sitting in my house is hard. I doubt that I will be jumping on a plane to travel to some warm destination but I am going to plan a little get away for Brian and I.
I am going to go to an ice fishing derby with my husband on Saturday. The fresh air and exercise will do me good. Yes, the cold air will sting my lungs but I need to get out of my house. I will just put my oxygen on my face, which I hate to do, and then wrap up in a nice homemade scarf.
I have lost who I am. I need to fight this battle not only physically but mentally, which I think is 100 times harder. So from this day on, I am going to plan one or two activities a week that will help me be me and not someone just waiting for a lung transplant.
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5 comments:
You go, Grrrlllll!!!
Go ice fishing -- bundle up -- stop hating wearing your oxygen -- it's what you need to live now and there is nothing wrong with it, or nothing to be embarassed of. If you were missing a leg, you probably wouldn't be ashamed to walk with crutches. The only big difference here is that people cannot easily see what you're missing... Wearing your oxygen when you're out and about in public is more a sign of strength than anything else -- that you have the strength to live life when so many others would be in a hospital bed...
And I recall that boredom and tedium, and fear and worry, and just continuing is all part of the job now... I felt stalled too -- no longer living, just surviving -- so I focused on the things I needed to do just to stay alive, and stay in some kind of condition to make it to and through transplant... Organize yourself to allow you to focus on eating to keep your weight up, exercising to continue to use your muscles... I remember going a few weeks at a time without leaving the house -- and our neighbors and friends calling me "pajama-boy" (lovingly...) A trip to the grocery store, walking up and down the aisles with my oxygen in the cart was one of my regular adventures that my wife arranged...
You haven't lost who you are -- who you are is just hibernating -- she's still in there... You might feel helpless and useless -- but you're not to the people who love you... They need you to make it through this one day at a time... It won't be forever. It might be for quite a while, but hopefully not too long... But it won't be forever. And when you get through this -- you will find that the wait and boredom and tedium and difficulties were all worthwhile. It's not easy to think that way while you're going through it -- but I waited almost 3 years and that was 10 years ago -- and for what I've had over these past years with "real" lungs -- the wait was so worthwhile... Allocation rules have changed -- you won't wait as long as I did -- but just hunker down and get through this... You'll do it -- you've got so much to live for...
Love, Steve
Steve,
I love getting your replies. They are so inspiring. You have a great way with words.
What is your secret to 10 years post transplant? Anything that you think you have done to help make it to the 10 year mark?
Love ya,
Stephanie
Thanks, Stephanie!!!
I think the biggest "secret" may be luck... I'd like to say that I'm compliant and I behave - and I think I do a pretty good job of that - but I think there is too much luck or chance involved...
However, there is always that theory about people creating their own luck by doing the right things, and being in the right place - which probably points back to compliance... I'm very good at taking my medications -- in the past 9+ years, I've never missed a dose of my immuno-suppressants. (I've been up to 4 hours late, maybe twice, but I've never missed...) I holler if something is wrong beyond "normal" wrong things like belly aches...
But, I'm also human and I don't always follow up when I should, and I don't see all of the docs/specialists I should at the times I should see them - which is sometimes where I think luck comes into play because it hasn't bitten me in the a** yet... However, when push comes to shove - I do what I'm advised and I'm compliant with drugs, procedures, and caring for myself... I think you are too...
And keep your eye on the prize. Part of you is getting through today. Another part of you is running in a field, holding a string and watching a kite soar behind you, and not getting out of breath - and having your husband chasing after you laughing...
You take care...
Love, Steve
Hey Steph, I know how you feel. We're like, trapped in our own body. I feel like its a productive day if I can just shower! I'd say don't overdo, but we all have heard those words straight from our dr's mouths. Go do what makes you happy, as well as you can!
Hey Doll,
I don't have CF, but I have lived with someone who has CF, and was there when he got the call for his lung and pancreas transplant. I can't imagine what is going on in your mind or how you feel waiting to get the call that you're going to get new lungs. But, I can tell you this. Please don't waste a minute of your time sitting inside. Get outside and enjoy all those things that you used to love to do. Getting new lungs is going to be a gift from God and I wish you all the best.
Rachel
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