coltsfan715
New member
<div class="FTQUOTE"><begin quote>Hey Lindsey ..... but I was just curious about YOU wanting one (for lack of a better word sorry b/c I know nobody really WANTS a lung tx.)....I guess my question is how can you be so ready? I just don't know how you can "face" the idea of a transplant? .... How can you be so willing to start the tran. process and think about it....isn't it too scary? ...:karen:..... </end quote></div>
I am terrified. I am starting the process now though because it is something I want to know about. I am interested in getting a transplant - if I need it - because I am not done doing stuff here. I am not ready to leave basically. Kurt and I were actually just talking about this the other day. I have started the ball rolling and all of my docs have been telling me - we don't think you need it now, but it is good to at least have your foot in the door, so if I do get really sick really fast I will already have the major stuff done and I won't have to wait even longer for all of that to be finished. Basically it is a get to know the center get all the testing done and then IF they will list me maybe be inactively listed until I AM ready. I have not started thinking about being actively listed until the past few weeks and it is so scary to me. I am torn about it. I want a transplant but don't want to commit to early I don't want to be waiting RIGHT NOW. ya know. It is something that I am trying to place in my head and I guess figure out a way to handle it mentally before I get to the point that they say .. well we think you should be actively listed .. NOW lol.
It is a huge decision and a very scary thing, but for me death is worse. That is really the only thing I can say about it. There were a few years where I was adamantly AGAINST transplant because of a book that I read. I thought OMG that would be awful. Then - as cheesy as it sounds - I found a reason to live and stay here. Since I met Kurt I have had this drive to do what I have to do to stay alive, I don't want to be without him ever so that is a huge factor for me. Also I figured if I have ANY reason to live - then I am cheating myself if I don't try. If I were content to just lay down and stop the fight then okay .... but I am not satisfied with that at this point.
So basically, I am terrified of what is coming up with the transplant. Unfortunately I am not at a point with my health where I can wait and put it off too much longer though. My FEV1 has been hovering at about 30% for the past year and a half. I have tried so hard to pull those numbers up, but as of right now nothing I have tried has helped. I am starting on a new program through my new doc of going in the hospital every 3 months, so maybe that will help I don't know. I have started taking some different supplements and have been walking a few times a week. Things have gotten and are still getting progressively harder to do. As things that you love start to be taken away from you because you can no longer physically do them it can make you driven to do what you need to do to get those things back - that is how it is for me anyhow. Some people don't feel that way, but I do.
At first when I was thinking about the transplant I was upset about it everytime I thought about it. It makes me extremely nervous, but I try to think about it in positive terms. I am sure I will probably cry at this upcoming appointment when they get into ALL the details of what they are going to do and what the process involves. Pretty much if I just concentrate on the positives I am able to maintain a calm and positive attitude about it all.
When I get upset about the transplant stuff I try to think of me afterwards. I think of all the stuff that I wll be able to do that I haven't been able to do in years or maybe even ever. I think of the things that I will be able to do with Kurt that I have never been able to share with him. It will be like he is getting to know a whole new me. Same personality but my abilities will be so much greater. To be able to be somewhat normal in my activity level and to share a life with him is really what mostly brings a smile to my face (and tears to my eyes).
As for how I can be ready - I will say that when it gets to a point where the simplest of things start to become a struggle. When your body starts to feel like it is slowly falling apart and you are more like an 80 yr old than a 24 yr old then you can somehow mentally become ready to do what needs to be done to "fix it". I know transplant is HUGE and will not fix everything, but I just want to be able to breathe again. I want to be able to truly enjoy my life and not struggle to enjoy everything and enjoy things through huffs and pants and coughing and soreness lol. Life is here for us to enjoy and cherish and I just want to be able to do that a little bit easier - if I can pull my lung function out of the gutter on my own then GREAT, but after struggling with it for over a yr and not really seeing any change .. if anything feeling worse .. I don't want to fool myself into thinking that just because others can make the turn around that I can too because it hasn't worked AT ALL yet.
I didn't mean to go on that long, but yeah it happens sometimes lol. As for getting the information and learning about it. I have intended to write a lot of what I do for this transplant in my blog so maybe you would find some of that useful, who knows. I know it may be different for each center with some things, but overall I would think that the basic things are the same.
Also don't take anything away from yourself about being brave. I think that everyone with CF is brave to deal with all this crap. As for facing transplant, you may surprise yourself if you were ever faced with the prospect how you would handle it. To me it is just as brave to say No to transplant as it is to say yes.
Hope that answered some of your questions about me with the transplant stuff. Yes I am scared but I have to deal with it or I would go batty lol.
Take Care,
Lindsey
I am terrified. I am starting the process now though because it is something I want to know about. I am interested in getting a transplant - if I need it - because I am not done doing stuff here. I am not ready to leave basically. Kurt and I were actually just talking about this the other day. I have started the ball rolling and all of my docs have been telling me - we don't think you need it now, but it is good to at least have your foot in the door, so if I do get really sick really fast I will already have the major stuff done and I won't have to wait even longer for all of that to be finished. Basically it is a get to know the center get all the testing done and then IF they will list me maybe be inactively listed until I AM ready. I have not started thinking about being actively listed until the past few weeks and it is so scary to me. I am torn about it. I want a transplant but don't want to commit to early I don't want to be waiting RIGHT NOW. ya know. It is something that I am trying to place in my head and I guess figure out a way to handle it mentally before I get to the point that they say .. well we think you should be actively listed .. NOW lol.
It is a huge decision and a very scary thing, but for me death is worse. That is really the only thing I can say about it. There were a few years where I was adamantly AGAINST transplant because of a book that I read. I thought OMG that would be awful. Then - as cheesy as it sounds - I found a reason to live and stay here. Since I met Kurt I have had this drive to do what I have to do to stay alive, I don't want to be without him ever so that is a huge factor for me. Also I figured if I have ANY reason to live - then I am cheating myself if I don't try. If I were content to just lay down and stop the fight then okay .... but I am not satisfied with that at this point.
So basically, I am terrified of what is coming up with the transplant. Unfortunately I am not at a point with my health where I can wait and put it off too much longer though. My FEV1 has been hovering at about 30% for the past year and a half. I have tried so hard to pull those numbers up, but as of right now nothing I have tried has helped. I am starting on a new program through my new doc of going in the hospital every 3 months, so maybe that will help I don't know. I have started taking some different supplements and have been walking a few times a week. Things have gotten and are still getting progressively harder to do. As things that you love start to be taken away from you because you can no longer physically do them it can make you driven to do what you need to do to get those things back - that is how it is for me anyhow. Some people don't feel that way, but I do.
At first when I was thinking about the transplant I was upset about it everytime I thought about it. It makes me extremely nervous, but I try to think about it in positive terms. I am sure I will probably cry at this upcoming appointment when they get into ALL the details of what they are going to do and what the process involves. Pretty much if I just concentrate on the positives I am able to maintain a calm and positive attitude about it all.
When I get upset about the transplant stuff I try to think of me afterwards. I think of all the stuff that I wll be able to do that I haven't been able to do in years or maybe even ever. I think of the things that I will be able to do with Kurt that I have never been able to share with him. It will be like he is getting to know a whole new me. Same personality but my abilities will be so much greater. To be able to be somewhat normal in my activity level and to share a life with him is really what mostly brings a smile to my face (and tears to my eyes).
As for how I can be ready - I will say that when it gets to a point where the simplest of things start to become a struggle. When your body starts to feel like it is slowly falling apart and you are more like an 80 yr old than a 24 yr old then you can somehow mentally become ready to do what needs to be done to "fix it". I know transplant is HUGE and will not fix everything, but I just want to be able to breathe again. I want to be able to truly enjoy my life and not struggle to enjoy everything and enjoy things through huffs and pants and coughing and soreness lol. Life is here for us to enjoy and cherish and I just want to be able to do that a little bit easier - if I can pull my lung function out of the gutter on my own then GREAT, but after struggling with it for over a yr and not really seeing any change .. if anything feeling worse .. I don't want to fool myself into thinking that just because others can make the turn around that I can too because it hasn't worked AT ALL yet.
I didn't mean to go on that long, but yeah it happens sometimes lol. As for getting the information and learning about it. I have intended to write a lot of what I do for this transplant in my blog so maybe you would find some of that useful, who knows. I know it may be different for each center with some things, but overall I would think that the basic things are the same.
Also don't take anything away from yourself about being brave. I think that everyone with CF is brave to deal with all this crap. As for facing transplant, you may surprise yourself if you were ever faced with the prospect how you would handle it. To me it is just as brave to say No to transplant as it is to say yes.
Hope that answered some of your questions about me with the transplant stuff. Yes I am scared but I have to deal with it or I would go batty lol.
Take Care,
Lindsey