Cystic Fibrosis Support Group
Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.
Hello all,
I just had the Whipple's Procedure done to save my life last march on the 12th. Turns out i didn't have cancer. I have cystic fibrosis of the pancreas. I had never heard of it until now. All I knew of C.F. was that it killed children. Now I know differently. I have seen a ton of support groups for pancreatic cancer but none for my condition. I would like to start this for others like me so we can help each other through this. I am still recovering from my surgery and likely will be for the next few months. They had to do a lot of work on me to keep me a live. 9 and 1/2 hours of surgery to be exact. I ended up losing half my pancreas and becomming a diabetic for a while afterwards. My whole digestive system had to be reworked. They even moved my stomach. Ever since this experience I have suffered from anxiety and no I cannot sleep. Lorazepam was perscribed to me to help and it works, but is highly addictive. I also have days where I lose my appitite completely and get sick I cannot digest food without enzyme suppliments now and I have to monitor my blood sugar levels constantly. Has anyone else been through this? I don't mind telling you I'm scared. I feel like I am still in trouble here and that I'm slowly losing the battle.
I just had the Whipple's Procedure done to save my life last march on the 12th. Turns out i didn't have cancer. I have cystic fibrosis of the pancreas. I had never heard of it until now. All I knew of C.F. was that it killed children. Now I know differently. I have seen a ton of support groups for pancreatic cancer but none for my condition. I would like to start this for others like me so we can help each other through this. I am still recovering from my surgery and likely will be for the next few months. They had to do a lot of work on me to keep me a live. 9 and 1/2 hours of surgery to be exact. I ended up losing half my pancreas and becomming a diabetic for a while afterwards. My whole digestive system had to be reworked. They even moved my stomach. Ever since this experience I have suffered from anxiety and no I cannot sleep. Lorazepam was perscribed to me to help and it works, but is highly addictive. I also have days where I lose my appitite completely and get sick I cannot digest food without enzyme suppliments now and I have to monitor my blood sugar levels constantly. Has anyone else been through this? I don't mind telling you I'm scared. I feel like I am still in trouble here and that I'm slowly losing the battle.
With Cystic Fibrosi, the disease is one of what are known as autosomal recessive genetic disorders.
With cystic fibrosis, each of your parents contributed to you what are known as CFTR protein genes that were mutated, meaning the genes are defective, which is why you have CF. It is the most common hereditary disease in the United States.
Also, the disease is almost entirely present in those who are caucasion and of European decent.
The disease can be deadly, and most with CF never lived past 5 years of age until the 1950s. Today, about 40 percent of cystic fibrosis patients are adults. With proper dietary supplements, and antibiotics to treat lung infections, the lifespan of CF patients continues to increase.
Normally, CF is diagnosed when one is an infant- based on such things as low birth weight. Malnutrition is common due to the disease preventing the body from absorbing nutrients, and certain vitamins, such as vitamin D,E,A, or K. In addition, genetic screening is now done on all neonates for up to 29 genetic disorders.
Aside from your dysfunctional pancreas, CF also causes lung infections often, and digestive problems as well. This is because the glands in your exocrine system, glands that normally produce thin and slippery fluids for your internal organs instead produce thick mucus that essentially clogs your organs, such as your pancreas.
This thick mucus also contributes to lung dysfunctions and infections as well.
You may want to consider seeking out those doctors and hospitals who are specialists with cystic fibrosis for an evaluation and treatment options that are best for you.
Good luck,
Dan
Brad here. I am 52 with Cf, I was Dx at 8 years old only because My
19 year old Brother had just been Dx with Cf.
I have met people who were not Dx until they were in there 50s..
The GI symptoms you have described are classic in Cf.
But every case of Cf is different from the next, You have Cf with no Lung problems yet, Yours may never get as bad as some. Your issues seem to be in your pancreas , This is a normal Cf issue.
For me my pancreas works pretty good ,so far. I have lost one lung and the other is not 100%.
YOu went through a rough surgery, It is going to take time to recover.. What part of the world are you in, Do You go to a Cf
Clinic or Doctor.. Most MDs don't have a clue about Cf. they just
dont have the training to know what they are seeing.
You say you cannot digest food, That is because your pancreas
is not doing it's job ,, You Should ask your Doctor about taking
pancreas enzymes to help with the digesting issues and the GI problems. They Work well for me ,, I take very little. but they help
with reg BMs. ,,
Good Luck to You..