Hannah
I am sorry that you are having to come to terms with all of this. I had the same kinds of issues when I went through my evaluation process. I remember my first appointment at the transplant center and to this day it feels as if I was watching a movie at that first appointment. I went in asked questions and had 3-4 pages of written answers, but don't remember any of it, except what I had written down.
All I can say is this - it is scary, but you can come to terms with it. You don't HAVE to be strong and refrain from crying or getting upset. Essentially anyone in your position has more than enough right to be upset and to cry. You do not need to listen to everything others say to do - meaning for mental and emotional health throughout this process - do what you NEED to do for YOU.
I had a hard time because some of my closest friends (also with CF and awaiting or post transplant at the time) felt like I should be asking more questions and getting more information. I didn't want it. I was upset enough about the entire thing that I couldn't handle the sensory overload of knowing EVERYTHING good or bad that could happen. I asked the questions that were important to me and when I asked the surgeon how they did the surgery I remember him looking at me and saying do you REALLY want to know? I paused and said you know No I don't. After that I realized that there is some information that for me wouldn't do anything but serve to scare me or make me anxious. I asked questions and got the information I needed to decide if I was going to follow through with the transplant, and once I did that I stopped asking questions. To this day I only ask questions if I feel something is wrong with my body. I still don't know all of the possible things that may go wrong down the road, but I like it that way - it's less to worry about.
I will stop going on now, but I guess my point in this was to say. You will cry a lot until you come to terms with things, that is normal. For me I just woke up one day and realized it will be the way its meant to be so I need to be okay with it - as cheesy as that sounds. It may take time for you, it may happen all at once but when you reach your point you will feel better. If it means that you have to refuse information that you know will simply serve to upset you then refuse it. If you are the type that needs ALL the info then ask ALL the questions. I say go to the appointments and if it helps you right now try to make this your decision and not your body's. Instead of HAVING to do this because your lungs are failing, think that you are doing this because you are tired of feeling this way. It may sound silly but it is semi empowering mentally to make it a choice you are opting for rather than one that is being forced upon you. It can help you to not feel as forced and helpless about the situation. That is how I felt about it anyway. The way you word things makes a huge difference in your perception.
I talked with a counselor pre transplant because I did not want to take antidepressants or antianxiety meds, but they have helped many people. If this is something that you feel you just can't get a handle otherwise then pursue that. Don't let people make judgments because the fact is that the majority of the people you know do not know what you are going through, so they can not accurately judge how you should be feeling.
Take Care Hannah and if you ever want to just talk or vent feel free to email me. I am not as fresh out of my transplant (its been just over 3 yrs) as Piper is but I will listen and share what I can. Transplantbuddies.org is also a great site to visit. It is run by a woman named Risa who has CF and has had 2 double lung transplants. She is phenomenal and helped me tremendously throughout my transplant process.
My email address is divawithwings@gmail.com - truly feel free to get in touch any time.
Take Care and I hope all goes well with your appointments.
Lindsey
