Older Cystic Fibrosis patient

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El84041
New Member


Date Joined Aug 2006
Total Posts : 2
   Posted 8/30/2006 10:41 AM (GMT -6)   
I know I'm odd, but when I was 67 I was diagnosed with adult onset Cystic Fibrosis, after suffering from severe Bronchiectasis for about 10 years. It was probably actually the start of cystic fibrosis back then. I'm looking for someone in this older age bracket. I am now 68 years old and find that I am losing weight and cannot seem to stop this process; is there any magic that can help? I am wondering if the loss of appetite and weight loss are cystic fibrosis related or maybe something else. Look forward to hearing from someone!

kristins mom
Regular Member


Date Joined Sep 2005
Total Posts : 27
   Posted 8/30/2006 4:55 PM (GMT -6)   
Hi El84041-
Welcome to the CF forum! I'm curious about the term "adult onset CF" you used. When were you diagnosed and was it at an accredited CF center? Did they diagnose you from a sweat test and/or DNA screen? Since CF is genetic and you had it since birth, I was wondering if they were referring to your symptoms appearing at adulthood. Have you tried any supplemental feedings (such as ensure, etc) during the days or perhaps GI feedings at night? This is the approach they used with my daughter to help increase her weight. Loss of appetite and weight loss can be related to CF and needs to be addressed with your physician ASAP. Hope to hear from you soon.

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 8/30/2006 6:22 PM (GMT -6)   
There is no such thing as "adult onset" CF. "Adult onset" is something you would get with diabetes, because you would develop it later on in life, whereas CF is genetic, and you HAVE to be born with it. You would have been born with it - had it at birth, because you have such a mild form of it, your symptoms didn't appear until much later on in life. I've heard of many CFers being diagnosed in early/late adulthood. Make sure that you are going to an accredited CF centre for your care though.

As for weight loss and no appetite - that can be CF related. CFers are notorious for having trouble putting weight on, and appetite loss with some patients. I would suggest supplements for you. A lot (almost all CFers) of CFers are on supplements to help weight gain - shakes. You can get these at your pharmacy, local grocery store, etc. There are Scandishake supplements which come in vanilla, strawberry & chocolate, there's Boost which comes in mocha, chocolate, vanilla, strawberry. There is also Enrich, Carnation Instant breakfast as well. These are all weight gain shakes. Here are a few links for more info. I highly recommend these. Boost also comes in puddings too!

http://www.axcan.com/scandishake_us.php?lang=1

http://www.boost.com/boostpluscons.html

http://www.carnationinstantbreakfast.com/

http://www.nestle-nutrition.com/product.aspx?objectid=2A77E1DA-2932-4AB1-A00D-F5D1A0B9F965

Hope this helps!

El84041
New Member


Date Joined Aug 2006
Total Posts : 2
   Posted 8/30/2006 9:21 PM (GMT -6)   
I was given this diagnosis through National Jewish Medical & Research Center, and yes you are correct it is something i was born with, but I did not have symptoms until about 12 years ago & cystic Fibrosis was not even considered because of my age, so until I went to National Jewish Hospital, & went through a multitude of tests, only a couple of the drs. looked at my CAT scan & said it looked just like cystic fibrosis! Tests confirmed this & I have been given the genetic codes of which CF genes I have & was told one is common & one is uncommon, with the uncommon one probably being responsible for the late onset of symptoms. This is all quite new to me & I am searching for information, and there is a lot, & trying to apply things to my situation. I really appreciate the information on weight. I am scheduled to return to Jewish National mid October & thought I could address the weight issue then. Meanwhile, I will try some supplements & see if that makes a difference. Thank again for your replys

Melli_lilroo
New Member


Date Joined Jul 2006
Total Posts : 10
   Posted 10/12/2006 2:51 AM (GMT -6)   
Yes high fatty foods are generally considered a crucial aspect of a CFers diet. Although I think it really depends on the individual, some methods work for some, and some just don't. I have always been told as high fat as possible, and this has been working pretty good for me, even though i'm still considered underweight. And yes you are right, its because the fat isnt digested as well so we need more, and because generally CFers use up so much more energy than others just to breathe and fight infection, so we need heaps more calories - usually the easiest way to obtain those extra calories is fat! Well that's what I've always been told at least. Hope this helps.
Melissa - 15 y/o
Conditions: Cystic Fibrosis, Asthma
Meds: Cotazymes Forte, Pulmozyme, Symbicort, Ventolin, Azithromicyn, Acidophilus, Hypertonic Saline, Tobramycin, Colistin, Ciprofloxacin, salt tablets, VitABDECK.


Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 10/12/2006 10:50 PM (GMT -6)   
I've been told the very same as what Melissa says. CFers usually do not have artery problems from high fat as well.
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