Hi, i'm a 16 year old girl with a best friend who has CF. I'm very close to my friend's mother and she is always very upset by his condition. From what i've read i think he has a pretty severe form of CF. My friend has diabeties along with his CF. (I don't know the proper term for this) but he got a new moniter for his diabeties that feeds the incilin in (basically a little thing that clips on his belt with a tube). He is constantly in and out of hospitals and being transfered to the state hospital. He is about 5'6 and weighs 95 pounds. The doctors tell him to eat whatever he wants pretty much and just counter is with incilin so he can try to keep some weight on him. He has pretty much been on antibiotics and pic lines since September of '03. He is getting ready to be taken to the state hospital before Christmas to get a central line in his chest put in. From the way the doctors are talking it sounds permanent. Does anyone know how long he can be expected to live with such a graduated form of CF? He's 16 right now.
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- Thread starter anonymous
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Emily65Roses
New member
I'm going to be almost no help at all. CF is really kind of unpredictable, and you can never really tell when it's going to end any one person. You can be almost fine one day, get an infection the next and die within weeks. You can be sick for a long time, and just keep living somehow. There's really no way to tell where he is, and how long he's going to last. You can always ask his pulmonologists and see what they think. Oh and the diabetes is called CFRD (CF related diabetes).
Joblazer86
New member
Unfortunately it is unpredictable as Emily stated but from my experience I have a severe case as well and have been from 17% to 21% fev the last 2-3 yrs. I know it is hard when you are really low on fev but exercise really does a lot.
Is he a picky eater. My husband swears by a protein shake called serious mass. It is made by a company called Optimum nutrition, you can find them in most health food stores or online. They have chocolate, strawberry and vanilla. Two scoops have (and they suggest you use two, with either water or milk), has 50grams of protein, 213 grams of carbs (30-40 from sugar) and 1340 calories. Many CF dieticians will recommend agains this supplement because it is not approved by the FDA, (simply meaning it did not go through their inspection process for whatever reason, not that it didn't pass their inspection process) but my husband use to be a very skinny guy in JH an Highschool. He is now 24 years old, weighs 180lbs and attributes most of it to the protein shakes. He eats regular meals, but sometimes he will substitute one of those shakes for a meal.
Only bad side is one bag which has 14 servings costs about $35. You may be able to get a free sample of each flavor from the optimum nutrition company to see if he likes any of them, but I promise you my husband swears by these. He also finds it easier to diegst because everything is already broken down.
As far as the life expectancy goes, that is such a case by case basis that without anybody knowing him or seeing him and reading his medical history, it would be unfair of us to guestimate. If you want somebody to talk to feel free to email me at division902@hotmail.com.
Julie
Only bad side is one bag which has 14 servings costs about $35. You may be able to get a free sample of each flavor from the optimum nutrition company to see if he likes any of them, but I promise you my husband swears by these. He also finds it easier to diegst because everything is already broken down.
As far as the life expectancy goes, that is such a case by case basis that without anybody knowing him or seeing him and reading his medical history, it would be unfair of us to guestimate. If you want somebody to talk to feel free to email me at division902@hotmail.com.
Julie
hello, I'm sorry your friend is going through so much. I don't have CF but my son does. I have no idea what your friend's prognosis is but don't get too discouraged, getting a central line is not necessarily a bad thing. I don't have CF, but I had a central line put in my chest(I have crohn's disease and my veins were so scarred and weak that a central line was my only choice) I was horrified at the thought of having this put in, but it was actually a good thing. I was mildly sedated and they put a local anesthetic in my skin right below my collarbone. the central was put in, yes it hurt pretty bad, but it was over in a few minutes. Once the procedure was over I was so happy that I done it; no more digging in my arms (and even my feet) to find a vein good enough to put an IV in, no more burning in my veins when they put strong drugs into my IV, and I could actually use both of my hands!! I'm positive that this Central line will be a good thing for your friend and it will help him to heal better. It is not a way of giving up or that he will have to IV meds for the rest of his life, it is just going to make getting the meds easier to deal with. I had my central line removed before I had my son and I wished I had it when I was in labor with my son (It took 10 sticks and two failed IV's to get my drugs--and they still ended up putting an IV in my ankle!!!
On another note, visit your friend in the hospital as much as you can. Being in the hospital over the holidays is no fun. Talk to him and let him know that you will be there for him always, no matter what. Be there for his mom, as well. She is probably extremely stressed out and needs some TLC as well. When my son is sick and his friends still visit him it is truly a gift---to see him having fun and playing with friends that are not threatened by the tubes and treatments---that lifts my spirits like nothing else. If you support your friend and comfort his mother, no matter what happens, you will forever be an amazing experience his life and his family's life. Just because you are a teenager doesn't mean you can't help (definitly more so than the adults who send stinky bouqets of flowers rather than call or visit!!!!!) Hang in there, I hope that when my son is 16 he will have a friend as caring and generous as you. Good Luck!
On another note, visit your friend in the hospital as much as you can. Being in the hospital over the holidays is no fun. Talk to him and let him know that you will be there for him always, no matter what. Be there for his mom, as well. She is probably extremely stressed out and needs some TLC as well. When my son is sick and his friends still visit him it is truly a gift---to see him having fun and playing with friends that are not threatened by the tubes and treatments---that lifts my spirits like nothing else. If you support your friend and comfort his mother, no matter what happens, you will forever be an amazing experience his life and his family's life. Just because you are a teenager doesn't mean you can't help (definitly more so than the adults who send stinky bouqets of flowers rather than call or visit!!!!!) Hang in there, I hope that when my son is 16 he will have a friend as caring and generous as you. Good Luck!
I agree you cant say how long he will live. And if he gets really bad than he may be considered for lung transplantation. Im listed right now and Im 22. My sister who also has CF was on IV antioboitcs for about 15 years of her life every 3 months. She finally had a central line put in because her viens were shot and all collapsed. She was glad she got it. She had taken out after her transplant and she is doing great. Shes 27 and working 3 jobs!!! Something she never did before.
It doesnt mean hes giving in. Explain this to his mom. It means hes fighting and thats what is important. I wish I had a central line. I still get picc lines put in and they sometimes break on me or block up. Im on IV drugs usually every 2-3 months for 3 week runs.
As far as food goes. Encourage him to eat what he likes. If he loves pizza or fast food, bring him some in the hospital. Most hospitals dont mind as they skimp on meals anyway in my experience. They usually encourage patients to keep snack in their rooms so bring him some chips or junk food. Like they said, they can adjust his insulin. I have Diabetes as well so I know that the weight issue comes first in CF. ANd ofcourse most of all, let him and his mom know that you are there for him and willing to help them through this. Trust me, it will mean alot to them. Good luck!
Kris 22 pre transplant for lungs and liver
CFRD and liver disease
"im still not done living yet"
It doesnt mean hes giving in. Explain this to his mom. It means hes fighting and thats what is important. I wish I had a central line. I still get picc lines put in and they sometimes break on me or block up. Im on IV drugs usually every 2-3 months for 3 week runs.
As far as food goes. Encourage him to eat what he likes. If he loves pizza or fast food, bring him some in the hospital. Most hospitals dont mind as they skimp on meals anyway in my experience. They usually encourage patients to keep snack in their rooms so bring him some chips or junk food. Like they said, they can adjust his insulin. I have Diabetes as well so I know that the weight issue comes first in CF. ANd ofcourse most of all, let him and his mom know that you are there for him and willing to help them through this. Trust me, it will mean alot to them. Good luck!
Kris 22 pre transplant for lungs and liver
CFRD and liver disease
"im still not done living yet"