Hi Helen,
I wanted to let you know I can understand the mental and emotional strain the situation you are in can put on you. I am 24 with CF. I was diagnosed with CFRD at the age of 17 and have been hospitalized at least every year of my life pretty much. In more recent years I have been hospitalized 2 and 3 times a year. I am now seeing a new doctor that wants to start admitting me or putting me on IV abx every 3-4 months regularly regardless of infection - in hopes that it will keep me healthier.
I have always had lung involvement with my CF, but up until the past 1.5 years I was handling it relatively okay. My PFTs were stable - FEV1 in the 40% range until about 1.5 yrs ago. I had a partial lung collapse due to a blockage - mucous plug and since then I have had issue after issue. The partial collapse caused my lung function to drop off the charts pretty much - I could not even complete a breathing test - and since then I have had FEV1 hovering at about the 30% range.
I have been in the hospital 3 times the past year - and am scheduled to be admitted again in 2 weeks. I am going to be having sinus surgery at the end of January as well. In the past 6 months I have seen such a huge change with my health it has been very hard at times to grasp what is going on. It is VERY overwhelming and can make you very confused and angry at times. I have started to use O2 at night and was just told yesterday to use it whenever I feel fatigued or short of breath as well. I try to keep myself busy doing things to keep my mind off the obivous stuff with my health.
I am also starting testing for evaluation for lung transplant in February - Feb 14th to be exact. I went for my first introductory appointment the first week of December and decided to wait til after the holidays and after my surgery and hospital stay this month to get started.
It is very hard to say what to do to help with the feelings you have or that your daughter most likely has - it is like I told several people I know it is hard when everything changes so fast not only does your body have difficulty adjusting but so does your mind. When things change slowly you at least have a chance to comprehend what is going on. I know what has helped me a GREAT deal is having my family and friends be there for me and allow me to be "weak." They allow me to break down and cry and get angry and curse and scream or just wallow in tears and they don't tell me I need to cheer up because there is nothing you can do about it ... so don't let it get to you. They let me have my pity party if I need it. Sometimes we all just need a good cry. I know it took me a while to let it all out and at first my mom's response was don't let this get to you it will be fine it will work out there is nothing you can do about it so don't let it bother you. THAT is easy to say when it is not happening to you lol is what I said. As much as you don't want to let it bother you it will it is inevitable. The best thing is to let her get everything out. I have also started counselling which has helped a great deal. I was having alot of issues with anxiety and feeling like I was going to suffocate and so on and the counselling has helped with some of that - it is also nice to have someone removed from the situation to talk too - someone that is there to support you and listen to you and no one else.
If your daughter ever wants to talk about the transplant stuff she can pm me ... there are also several other people on here that are WONDERFUL and have actually gone through transplant and would probably be great for her to talk too. But if she just wants to talk to someone who is kind of going through similar stuff she can feel free to pm me. I am pretty open with things especially with other people in the CF world.
As for coming to terms with CF and the future - I will say for me it has been hard and some days are much much much better than others. It will be a roller coaster for her many days I am sure. She is being faced with her own mortality in a sense and for anyone that can be a daunting task. I say just stand by her and have her do what she is able to do. If she wants to go to the store and she can only walk a mile an hour then walk a mile an hour with her, don't leave her in the dust. Don't make her feel bad for not being able to do things others can do, and don't always say you are sorry that she can't do the things that she wants it just makes it more obvious to her - well that is how it is for me anyway. Find things she can do and do with ease and enjoyment and focus on those. Try to keep her at least somewhat active and try to keep her smiling <img src="i/expressions/face-icon-small-smile.gif" border="0">. I know those are the things that have been big for me ... also it is hard for me when I feel like a burden for people - like when I have to have someone push me in a wheelchair or something like that. I guess just alot of patience will be needed to deal with the emotional aspects of it all.
Sorry to have droned on and on. Feel free to pm me if you ever want to talk or if your daughter wants to talk.
Take Care,
Lindsey