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Cutecurlz

Guest
So what else can/could go wrong? My brother who is almost 29 is on a lung transplant list, heart is working overtime and now he just found out that he has osteopourosis. What else can go wrong for my brother? He says he's doing ok...but I know he's not, I know he's not dealing well with everything. He also wishes ppl would just leave him alone, all he hears is..."We're here for you", "We're here to help you", well he knows this but at times he just wishes that ppl would just leave him alone to deal, I can't say that I know what he's going through cause I don't, I know what he's going through with the CF part of things but not with the transplant stuff, I would love to be a donor fer him but I can't as I too have CF (37 yr old female, diagnosed at the age of 3yrs), I am doing great myself...I hardly never ever get sick and I only take my enzymes. I hope things get better for him real soon.
 

anonymous

New member
sounds like me and my younger brother. We both have CF. I am 32 he is 28. I was very sick from birth to age 4, when my brother was born and he was diagnosed with CF. The doctors never knew why I was always sick and my mother asked if I could also be tested and sure enough that I also have CF. My brother has always been a little more sickly than me, partly because I am a health freak and he is more laid back when it comes to CF. He was so aggravated with me for years of me "asking how are your PFT's?" or want to hit the gym with me? Family always asking how is he doing that he became very anti social and stopped talking to me for almost a year. Not even hello or goodbye. You would think that brothers dealing with CF would be very close due to special bond. But I think CF drove us apart.

He was hospitalized in Oct and I was asked not to visit in the hospital which floored me. Thanksgiving we started talking again but I never asking how his health is or any CF topics. It is almost like talking to a stranger but my parents say at least you both are talking.
 

pedalup

New member
cutecurlz, i saw your post and i had to respond. this is joy, the one who sent you the braclets. did you ever recieve them?i tried contacting you a couple times, but no response. any ways, i hope you did. my 23 year old brother has cf, i do not and he hates me and all his family.we havent spoke in over a year, and that is his choice! every time i call him i get a hang up! he is rude to mom to, and everyone else. he says he is going to die, so why should he have to do anything. he is extremely UNMOTIVATED, and sleeps a lot, and has no friends, and it makes me so sad. i kept trying over and over again to keep calling him no matter what, but i JUST CAN NOT TAKE HIS MEANNESS ANYMORE! one can only take so much. unfortunately, he is my only sibling. good luck, but i am probably not the best canidate to ask advice on this touchy subject, SORRY.
 

anonymous

New member
hi there, this must be an awful situation to find yourself in, i'm very sorry for you. Although it will be hard, as i understand this must be very hurtful for you, but try to see it from his perspective. He is obviously less healthy than you and probably the rest of the family too and part of him will be feeling very angry and resentful of that fact. He probably feels he's been dealt a rough hand in life and although deep down he surely feels bad about the things he says and does to you, feelings are feelings and that underlying anger and 'why me' attitude will be very hard to deny or suppress. I too have chosen to have little to do with my family, although we still are on speaking terms, i just choose to spend a lot of quality alone time, this if for two reasons 1) i try to lead as stress free existence as possible (to retain good health as long as possible) and unfortunately i have a big and loud family who tend to be rather dramatic and chaotic and quite simply i feel irritated and stressed out when i'm around them for any length of time, to me tranquility is bliss and although I love my family darely, occasional and small exposure is all i can handle 2) part of me doesn't want to get or be too close to people, this includes family, lovers, workmates and friends. Part of me feels it is unfair to form a very close relationship with anybody so that they can then face losing me at a younger than expected age. I would hate to lose my lover, best friend or mother, i can't imagine how much it would devastate me (losing my brother was very very hard for me) and can only too well imagine how it will be for them when I die. My mum already lost a son at a young age (not to cf) and she has never fully recovered from this. The thought of her going through this with a second child just breaks my heart.
Can i suggest that your family get together and talk to your brother with a view to encouraging him to both a) start seeing a clinical psychologist to work through his deep seated anger (i went to one every week for two years and it has literally changed my attitude right around) and b) encourage him to give anti-depressants a go. As far as he psychologist is concerned it can sometimes take a few attempts to find one you are truly comfortable with, encourage him not to give up if his first choice doesn't suit him. Once he finds the right one he can make huge progress. We are all dealing with one hell of a reality, is it really that surprising that we might have issues, anger management problems, depression? We all sometimes need help to deal with the curve balls life throws us, but if we really want to chane and are prepared to put in the effort, the rewards are huge. As for anti-depressants, again it shouldn't be a surprise that he is depressed, he has a potential death sentence hanging over his head and life is quite hard enough for those who are blessed with good health, let alone somebody with CF on top of everything else. Also a lack of the fat soluble vitamins in our bodies (which is something most of us CF'ers have regularly) can cause a hormone imbalance in the body which can cause chronic depression - so this may be more of a physical manifestation than emotional and something he needs help with. We take enough other drugs and potions to keep our bodies running, why not another pill to help our emotions? I really hope you can manage to get through to him, the sooner the better and no matter how hard it gets if he does go through with the therapy, it is essential you are all there for him, through the good, the bad and the ugly, coz usually when you first start talking to someone, things do get worse for while, but it is all part of the process.

Sorry for the novel, but he sounds a lot like me 5 years ago and i had to reply as I am now a completely different person and completely happy - despite CF!!! All the best, keep us posted.

Kat (37 with CF - NZ)
 

anonymous

New member
Osteopenia, or Osteoporosis is bone loss... many CFers have that. You may as well.
It is partly due to malnutrition and not able to absorb the nutrients we need to as we are growing up, and then prednisone can also bring bone loss on.

It is not a major issue really... he can take calcium and maybe his tx team will start him on some meds for his bones. Weight bearing exercise also helps prevent and improve bone loss problems.

Yeah CF just goes on and on... but I think we are pretty tough people and we can see our way through it.

I am on Aredia for my bone loss.... my bone loss has decreased due to using it.

Good luck
Joanne
luckylungsforjo@aol.com
 

JazzysMom

New member
I am not one to be bitter about my CF, but there are times that I have had enough from people. We are aware of the different aspects of CF whether we want to acknowledge it or not. To be constantly reminded (like me never knew) or get advice or critisim (depending on what the intent was) from someone without CF or very mild CF (which at times can be the same thing in our minds) is very hard to swallow. It reminds me of a person who has lots of advice for the person whose child is having a tantrum in the store yet the person with the advice doesnt have children. No matter what "connection" you think you have, everyones experiences, responses & situations are unique & personal. Sometimes no matter how hard it is, you need to let the person be. It might not be in their best interest in the long run, but there are so many things out of our control in life that this might just be one of them! I know its painful to see a loved one go thru things (especially if we see it as unneccessary), but from my experience with other issues in my families life, you have to take a step back, cry a few tears & just remind them now & then that you are there, but...........you cant support their destructive behavior!
 

pedalup

New member
dear kat, thank you for responding, although i apparently didn't make it clear enough that every time i call him he hangs UP ON ME, so discussing anything with him is Not AN OPTION! AS FAR AS A COUNSLER is involve, or taking antidepressents, that would never happen because he is VERY STUBBORN and wouldnt even CONSIDER ANY OF THAT STUFF. THANKS FOR THE SUGGESTIONS ANYWAYS.. it is just a sad situation, it is out of my hands!
 
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