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anonymous
01-09-2004, 08:37 PM
My husband and I were at the Dr. today and he mentioned that he would like my husband to get the sweat test. When he first mentioned Cystic Fibrosis I didn't know what it was but I knew it didn't sound good. Since I've been home I've been doing a lot of research on the disease and everywhere i go it's saying that this is something that is commonly diagnosed in children. My husband is 32. I'll admit he does have all of the symptoms but nowhere does it say anything about adults being diagnosed. I"m sure the doctor knows what he's talking about and he is just trying to 'rule it out' but I'm just so worried and confused. So I guess my question is; Has anyone here heard of other adults being diagnosed?

anonymous
01-09-2004, 08:41 PM
Yes!

anonymous
01-09-2004, 11:34 PM
Adult diagnosis is very common. Many people juat aren't that symptomatic. Most children are diagnosed early because they are pancreatic insuffeciant, and don't thrive. Most adults who are diagnosed find it to be somewhat of a relief because they finially know why they've had so many colds, allergies, sinus infections, ect. Many peopl have just thought they had asthma all their lives. It's an important diagnoses to make because even though a person may be generally healthy, there are many CF related complications and it is important to know what you're really dealing with. This is also important info if you plan to have or already have children. There are several adult CF speciality centers around the country so you can get the best adult care for a traditionally pedieatric condition. You can find them by looking on the CF foundation's website <www.cff.org>. If CF is the case, you will sleep alto better knowing what's going on and knowing that you're treating it correctly. You've come to the right place for answers and support.Good Luck,Debbie22 yr old w/ CF

anonymous
01-09-2004, 11:41 PM
Thank you Debbie <img src="i/expressions/face-icon-small-smile.gif" border="0"> We actually have been trying to concieve and it's been very frustrating. I've just read that 95% of males with CF are sterlie but with technology are able to be fathers so there is still hope. I am jumping the gun a little, we haven't even taken the test yet <img src="i/expressions/face-icon-small-blush.gif" border="0"> but I want to be as educated as possible about all of our options, I'm really glad I found this place <img src="i/expressions/face-icon-small-happy.gif" border="0">

MichaelTO
01-10-2004, 04:54 PM
I was diagnosed with CF over two years ago at age 34. It was a shock, and somewhat worrysome, but I have better adjusted to it over time. I'm sure you've been doing research on CF. If your husband does have CF, remember that you are looking at statistics. Each individual is different and will have a different experience. The CF clinic I go to has a person who's either 59 or 60, so life expectancy cannot be easily defined just based on a diagnosis. When I was diagnosed, I had been sick for several months and they didn't know what was wrong with me. Once they identified my problem as CF and got me proper treatment, I was feeling better within four or five days.The treatments your husband will have to go through will be somewhat time consuming, but they will improve his quality of life.If you are trying to start a family, you should also be tested to see if you are a CF carrier. If you are, your children could possibly have CF. Once I was diagnosed, my brothers got tested and found out that they were both carriers.Good luck to you and your husband!Michael36 yo w/CF

anonymous
01-10-2004, 06:17 PM
To the person who first wrote- just making sure that you realize, as I am sure you do, that CF is a genetic disease and so if your husband has it, he has had it all his life, it has just never been diagnosed-. I was just saying that because you wrote "Adult Onset CF" as your subject line- and it is not really onsetSorry if you already knew this

anonymous
01-10-2004, 09:44 PM
I did, I just wasn't sure of the proper way to phrase it <img src="i/expressions/face-icon-small-wink.gif" border="0">

anonymous
01-13-2004, 10:31 PM
I am 25 and I was diagnosed when I was 18. My sister was 24. Yes it can happen. I look at it as a blessing to go so many years being that healthy!

anonymous
01-14-2004, 07:56 AM
I was diagnosed after coming back to the place I grew up and landed in hospital very sick. I had been told I had asthma quite bad, when I lived interstate 2 years prior I was made to see a Gi doc who did the pancreatic function test on me to see if I was malabsorbing. I was , I was put on enzymes and no more tummy pains or going to the bathroom constantly. When I came back here and was sick, the Dr who didnt even know me, looked at me and said to my husband it was CF. I had previously had the tests but they were normal. The gene test here in Australia only screens the most severe types. I was sent to a special clinic for a second opinion and then they said it was "atypical" CF. I remember growing up and having lots of problems but my mum is a herbal person who isnt the type to go to the DR. I now am under the same Dr who said it was CF, who has me on a heavy regime of drugs for my lungs, and also see a ENT dr for sinus disease and also a gastrointerologist for my pancreatic problems. I am on enzymes . I have been at this healthy weight for me now for about 2 years and I have never felt better. Some people think its weird I wasnt diagnosed earlier. I went through hell with different Drs who thought it was all in my head. I guess the thing is to learn to trust your insticts. I knew there was something wrong. Dont get me wrong it was a shock, there are days it still isnt real. Cf is hard I am just seeing it now with 2 admissions in under a month, having to have a port a cath inserted on 2 occasions because I have no IV access left. But once you know whats going on you know what to fight and what you are dealing with. Whatever happens to your husband there are people out there who can understand.

anonymous
01-14-2004, 09:50 AM
Hello, You should be glad that your husband is still healthy because i was sick like a chicken from my birth and the goddamned doctors didn't know it was CF untill 18, it was too late by then.

anonymous
01-14-2004, 05:59 PM
At three, our son was diagnosed with CF. A few years later, at the tender age of 49, I had a sweat test. The result was borderline. Since I'd been having some gastric problems, the doctor diagnosed me as having CF. I'm 53 now<img src="i/expressions/face-icon-small-smile.gif" border="0">Weird, but true.

anonymous
01-14-2004, 05:59 PM
At three, our son was diagnosed with CF. A few years later, at the tender age of 49, I had a sweat test. The result was borderline. Since I'd been having some gastric problems, the doctor diagnosed me as having CF. I'm 53 now<img src="i/expressions/face-icon-small-smile.gif" border="0">Weird, but true.

anonymous
02-08-2004, 01:19 AM
I was just wondering how the test came out for your husband? I have not been diagnosed with CF but I have my suspicions. When I was about 10 my brother was reading a list of all the symptoms of CF and I had them all except the salty skin. I licked my self and it was not salty. I remember being so relieved because I was always very sick and I knew at that time CF patients did not live very long. I stopped going to the doctor when I was 15 because I thought there was nothing they could do for me. But when I was 18 I could hardly walk without running out of air. I went to the doctor and he did two sweat tests. I never knew what the number was but he said it was negative. I also had a nasal biopsy. Which I guess was negative also. I also had a test they don't even do anymore since CT's came along. It showed I had severe bronchectasis. But we still don't know why. I have a FEV1 of .96 and a FVC of 1.97. The doctor has talked about lung transplants and stuff like that. So far I am doing okay. But this year has been more difficult with more infections such as pseudomonas and staphococcus. I have done some reading about the CFTR gene and such. It makes me wonder. I don't think my doctor is in that big a hurry to do any testing. I suppose it is inconsequential because he is treating me almost as if I had CF. He told me it would not change his treatment only give us an answer. He treats many CF patients in our region of the state. I am now 40 years old.

anonymous
02-08-2004, 01:36 AM
To the last post:Wow, you've been through so much with out getting any solid answers. I know when I read your symptoms I thought, how could it be anything but CF. Have you had a genetic screening? You may be a symptomatic carrier or the gene. Insist that your doc test you or refer you to someone who will. It is important and it's your right to know what's going on. Best wishes,Debbie22 yr old w/ CF

MichaelTO
02-08-2004, 10:42 PM
You should ask to have genetic testing. I was negative by sweat tests as a child, but was diagnosed two and a half years ago based on a genetic test. I have a mild case of CF, and I think that might be why it didn't show up with the sweat test. I agree with Debbie that your symptoms sound very much like CF. What kind of doctor are you seing? If you're seeing a general practioner, you should try to see a lung specialist.Michael36 w/CF

anonymous
02-09-2004, 04:00 AM
Thank you for responding. I wrote a real long e-mail but I messed up and lost it. I am not good on the computer. I will try to re-write in the next few days . thank you again.<a target=new class=ftalternatingbarlinklarge href="mailto:[email protected]">Text</a>

anonymous
02-09-2004, 02:07 PM
I do see a doctor that sees most of the CF patients in this part of the state. He is very well liked by myself and others and is very involved with the CF foundation. I am not sure why he has not tested me with testing other than the sweat test.. Is it the expense? I know he did tell me before it would not change the way he is treating me. I have The Vest now. For about 3 weeks. I am not sure how to tell if it really is working. I do not have any pancreatic involvement and I do not have club fingers. When I was a kid I was so sick. I had difficulty even going up the stairs at night. I always had to have kleenex and coughed all the time. I remember in 6th grade when in music class it was as if I had vomited but I knew better. It was mucus, a whole lot of it. I was able to make it to the bathroom and get it cleaned up before I think anyone noticed. That's what I have been doing most of my life. Trying to hide it. I never told my mom I was sick and was able to fool her and minimize it so she would not take me to the doctor. I would be burning up with fever sometimes. When they did treat me it only helped for a very short time. I never had any sputum testing until just the past few years. I hate the coughing all the time because people are always looking because its not the normal cough. I think they think they are going to get something. By the way do you know if there is any way that the pseudomonas is contagious? I have a hard time at work sometimes because I get disability and they limit you on how much you can work. Well tthe people do not understand why I only work part time and get some special considerations and stuff. My boss got a little upset because I told him how I told my doctor this. My boss said it is my fault because I do not tell the staff enough. I am not sure if I want to be tested because then I would hve to deal with it if it is and if it is not then maybe I'll be more frustrated. I think at times it is my fault that my lung functions are bad because I stopped going to the doctor at 15. And before that I tried to hide it. And I know that I donot have it as severe as the CF patients do. I do not want the doctor to think I think I am as sick as others. Does that even make any sense? My lung functions are at FVC 1.97 @ 59% and FEV1 .96 @ 30% and the small airways is at 10%. How does that compare with other CF patients? I have never talked to anyone before. I just was doing some research and came along this forum. I was reading the other comments and I can't believe how I can relate to some of the stuff. I never knew it could be related to the disease process. Anyway this is pretty long I am not sure anyone even wants to read all this. So if you did thanx for listening.

anonymous
03-03-2004, 03:19 PM
I was just diagnosed with nasal polyps by my General Practitioner. He is sending me to an ear, nose, and throat surgeon to remove them and to correct my deviated septum. Imagine my surprise when I Googled nasal polyps and found they are a symptom of adult onset CF. My oldest brother died from CF in 1963 at age 12. None of the rest of my siblings have CF, but 2 of us have allergies, chronic sinus problems, and 1 with asthma. Two have been tested and are carriers. I have not been tested for carrier status or for CF. Is the sweat test still the most reliable indicator of CF? Am I over-reacting, or should I explore testing? Any resource recommendations?

anonymous
03-03-2004, 09:51 PM
If CF is anywhere in your family, you should be genetically screened with a blood test. If you had a sibling with it, and you shared the same parents you may be a carrier. CF is a recessive trait. Both parents must carry the gene and in each birth there is a 25% chance for CF, 50% to be just a carrier, and 25% chance of neither. Carriers can also express symptoms. There are many different mutations of the gene. Please get the blood test, sweat tests are good, but don't always make the diagnosis. If you have a sweat test done, do it at an acredited CF center. You can find on on the CF foundation website, cff.org.A single carrier in a couple can pass the gene as well. My half-sister is a carrier from our mom and her father is not.Debbie22 yr old w/CF

anonymous
03-15-2004, 06:19 PM
<img src="i/expressions/heart.gif" border="0"> Yes I was diagonosed with CF at the age of 66, January,2004. I had to talk the Doctors into testing me.I am glad I did ,I now have answers to my medical background. I was never restricte d in my life activities, but I did havre lungs problemsa all my life.Hope this helps

anonymous
03-16-2004, 02:58 AM
Wow!! 66 thats amazing! Do you know your mutation? I would be very interested to know which you have if you even know...Thanks and I hope everything is well!

anonymous
03-17-2004, 12:22 AM
Yes I thought 66 was great, I do not know at this time they are still testing me. I do have that great infection MRSA. I am not the oldest in South Dakota, 2nd, a woman is 72. so there is hope for all to enjoy a full life. one day at a time. laughts and love to you all.Tom:heart;:D:wine;

anonymous
12-22-2004, 05:04 AM

anonymous
12-22-2004, 05:19 AM
I am the mother of a 19 y o with CF so obviously I am a carrier. I was tested by sweat test for CF 18 years ago due to the probs I had been having with asthma from age 16. They said it was negative. For the past 2 years I have had severe sinus, ear probs. My ct shows chronic pansinusitis. I had surgery a few months ago and they found psuedomonas in my sinuses so I have been on Dalacin C and Cipro for 3 months. The ENT says I have stick thicky mucus blocking my Eustacian Tubes so I had grommets placed but they keep clogging up with this mucus or keep getting infected and he has had to replace them and I am on gentamycin drops. The ENT does'nt really know whats up but swears that if I dont have CF, I must be a symptomatic carrier. He has taken my Xrays to show other ENT's who have come across CF patients. He says he has only ever had one patient with more severe sinusitis and has never seen anyone with recurring sticky stuff blcoking their ears continually. There is no guarantee that anymore surgery will help and sinus surgery will not help with the ears. I AM CONFUSED!! I have asthma at present and on Prednisolone but it is not working. I have a different tight wheezy cough and can taste a funny taste when I am coughing. Usually, I have a moist cough and steroids help pretty quickly. Anyone else have ideas on this funny taste?? I don't know whether to ask about be tested again or is it just a co-incidence
or is there much more we don't know about carriers having symptoms. I know my Dad is a carrier but My Mum has not been tested. Only if she is a carrier can I have CF, so maybe I should see if she will be tested!!
Thanks for listening
J

anonymous
01-11-2005, 12:31 PM
I am wondering if you can "pass" a sweat test and a blood test and still have CF? I am 50 and have had bronchiectasis since teens, had 2 lobectomies and still have an incurable pseudomonas infection. The infection seems to require me to use prednisone for the last 2 years or else I have fevers and poor breathing. Does anyone know if glutathione can help this ?/ I am getting very concerned about the prednisone side-effects.

anonymous
01-11-2005, 03:29 PM
Most CF blood tests only check for the most common CF mutations. usually 25-50. There are well over 1000 mutations, so make sure you go to a CF certified center to get checked and let them know the medical history in depth. I would definetly get tested and wouldn't stop till I got EVERY mutation was checked if it were me!

Julie