Transplantmommy
New member
As far as the mental side of things....you absolutely have to have a good support group (friends, family, acquaintances, co-workers (if you work), and whomever else). There are actually some (or a lot) of Tx teams who will not transplant you if you do not have a good support group.
I had a HUGE support group and it showed the very first time that I went for an evaluation in Cleveland. I had my Mom, a close friend, and my husband with me and the doctors loved it. But outside of that, I have my siblings, in-laws, more friends, my CF doctor, and co-workers (at that time) who were/are all very supportive of me and kept me positive through all of this. They were there to listen and here to help when I needed it. Let me tell you, that is one of the biggest things that kept me sane through all of this. I even spent 63 days in the Cleveland Clinic (from September 2006-December 2006) and every week, I had someone different staying with me (my MIL, my Mom, my high school French teacher, my Grandma, Nate's Aunt, and my brother, his girlfriend, and their little one). On the weekends, if he could, Nate would bring Brady out to see me.
If you're not in the hospital and you are able to still get around, at least get out to go somewhere. Even going to the grocery store, tugging along my O2 and using one of those motorized carts in the store, at least mad me feel a little normal. Even still going to family functions will keep you sane. I went to a family bonfire and the family Thanksgiving and Christmas get togethers and had to lug all of my stuff with me....it just made me still feel included.
If you can't get out, watching TV and being in groups like this help. At least you have people to "talk" to on here. I did not know of any groups like this before my Tx....I found them all after. For activities, ask people to play board games or cards with you (I love Skip-Bo and Phase 10), do some Sudoku (if you know how), read, write in a journal (so you are getting your feelings out and not keeping them bottled up), talk to friends on the phone (if you can....that got really difficult for me because of the getting short of breath and coughing), or whatever else you like to do to keep yourself occupied. I wrote a poem for Brady while I was in for that 63 days. You can read it if you like.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.poetry.com/dotnet/P8692099/AHJ/1/display.aspx
">http://www.poetry.com/dotnet/P...99/AHJ/1/display.aspx
</a>
This is all what I would suggest and if none of this works then I would also suggest seeing a therapist who can help you through all of this. It is a very tough process and people just don't understand unless they have been through it. For those of you who are waiting....hang in there! I was only listed for 5 months when I got the transplants but I had been told 2 years prior that I needed them.
I had a HUGE support group and it showed the very first time that I went for an evaluation in Cleveland. I had my Mom, a close friend, and my husband with me and the doctors loved it. But outside of that, I have my siblings, in-laws, more friends, my CF doctor, and co-workers (at that time) who were/are all very supportive of me and kept me positive through all of this. They were there to listen and here to help when I needed it. Let me tell you, that is one of the biggest things that kept me sane through all of this. I even spent 63 days in the Cleveland Clinic (from September 2006-December 2006) and every week, I had someone different staying with me (my MIL, my Mom, my high school French teacher, my Grandma, Nate's Aunt, and my brother, his girlfriend, and their little one). On the weekends, if he could, Nate would bring Brady out to see me.
If you're not in the hospital and you are able to still get around, at least get out to go somewhere. Even going to the grocery store, tugging along my O2 and using one of those motorized carts in the store, at least mad me feel a little normal. Even still going to family functions will keep you sane. I went to a family bonfire and the family Thanksgiving and Christmas get togethers and had to lug all of my stuff with me....it just made me still feel included.
If you can't get out, watching TV and being in groups like this help. At least you have people to "talk" to on here. I did not know of any groups like this before my Tx....I found them all after. For activities, ask people to play board games or cards with you (I love Skip-Bo and Phase 10), do some Sudoku (if you know how), read, write in a journal (so you are getting your feelings out and not keeping them bottled up), talk to friends on the phone (if you can....that got really difficult for me because of the getting short of breath and coughing), or whatever else you like to do to keep yourself occupied. I wrote a poem for Brady while I was in for that 63 days. You can read it if you like.... <a target=_blank class=ftalternatingbarlinklarge href="http://www.poetry.com/dotnet/P8692099/AHJ/1/display.aspx
">http://www.poetry.com/dotnet/P...99/AHJ/1/display.aspx
</a>
This is all what I would suggest and if none of this works then I would also suggest seeing a therapist who can help you through all of this. It is a very tough process and people just don't understand unless they have been through it. For those of you who are waiting....hang in there! I was only listed for 5 months when I got the transplants but I had been told 2 years prior that I needed them.