Please help me understand

[star]

Hi I have a ton of questions but don't know where to start, but I guess I should start at the beginning.

My cousin who I was raised with was just recently diagnosed with CF and even though she made the doctor send her for the sweat test 2 times already she is still in denial her attitude towards this is that this disease is something they should have diagnosed her with when she was a baby. She keeps saying that there was a mistake some where. My cousin is 23 and my mother raised her after her mother passed away years ago so no one really knew much of her genes on either parents side. My family is very private and still a bit old fashion and even my mom was in denial for a a bit. I finally talk my cousin into going to just cunsult with the CF doctor and she broke down. All she kept saying was that she couldn't believe this and why her. My cousin has always lives a "normal" life but was always sick. She has been to see an ENT he told her it was sinusitis. She has been to see a neuorologist he told her that the migranes were because of her sinuses. Then 2 years ago she started have (I'm only going by what she told me and what I know) problems with her bowl movements she said she would eat something and it would "run" right out of her and then there were days that she would have severe gas pains and not go at all. She would also have really bad pains in her chest and the stupid doctors told her that she had bad indegestion and IBS. Needless to say that it was her new doctor who decided to do the test. My cousin has also always had a weight problem, she would always quickly put on weight and she would also take it off very fast as if she were sick.

She doesn't take her medication all the time and I don't know what to do for her other then stay on her back. When we were younger we had a friend with CF and we watched her go through her ups and downs and at the age of 13 she passed. That was tough for us back then how can I help my cousin.

My cousin who was never really a pill talker now has to take a lot and is always so sad what can I do? I'm scared.

 

[Diane]

Hi,
Its great that you want to help your cousin. I am going to assume that since you both watched your friend pass away from cf at such a young age, has a lot to do with why your cousin is so afraid . I have lived with cf for 39 years and im still afraid sometimes. Having an illness that can be life threatening is scary no matter how we try to sugar coat things. Your cousin is lucky she has you to help her thru this. Try to encourage her to keep up with treatments and her medications. She will feel better and her health may improve as long as she keeps up with medications and treatments. Exercise is important also, maybe you could help her with that also. As long as she has someone to go thru it with her, she may not feel so scared and isolated within the illness . Some people arent diagnosed till later in life. There was a woman on this board, who wasnt diagnosed till she was in her 50's . It isnt just a childhood disease anymore. With better treatments people are living longer and healthier<img src="i/expressions/face-icon-small-smile.gif" border="0"> I wish you both the best <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia

 

[star]

Thank you very much and at the same time can you please fill me in on some on the other treatments that my cousin may have to take. She is already doing the neb treatments.

 

[anonymous]

First I have to say your cousin is so lucky to have you by her side because its not an easy thing to do alone. I was not diagnosed until I was 14 years old so I can kinda relate to some of the emotions your cousin may be feeling. I remember thinking how could I have a life threatening illness??? I lived 14 years being "normal" and now all of the sudden I am told I have CF?? The one thing she has to remember is just because the disease is given a name doesnt change her disease. It sometimes feels like once its given a name its so much scarier and all of th sudden you have this "new" scary illness, but she has had it all her life so she wont suddenly get worse now that it has a name. Also now she will be given proper treatment and should feel much better. I cant even explain what weird emotions you feel after diagnosis...everythign from denial to complete confusion to even some relief. I know that I didnt want to do my treatments after being diagnosed because I figured I lived 14 years without ANY treatment so even if I only do it 1/2 the time it would be better than before. Also being diagnosed so late made me not see the importance of the treatments because I lived so long wihtout any and I knew I wouldnt drop dead if I didnt do them. It took me maybe a year or so...after I cleared out my lungs and realized how good I could feel if I took care of myself I realized I never wanted to feel as bad as I did when I was diagnosed (even though I didnt realize I felt bad at diagnosis cause thats how I always felt) I dont feel like I am properly explaining the emotions and feeling i went through,but if you cousin (or you) ever wants to talk to someone I would love to talk to her about what she is going through. I am now 20 years old and am in my 3rd year of college. Anyway if either of you want to talk to me I would be willing to give you my e-mail address. Oh also make sure you support her and let her talk her feeling out to you because she needs to feel like she has a safe outlet. Let her know your not afraid to become involved in her health and help her out in any way if she wants...I know my siblings dont really mention my CF even when I am on a tune up and thats really hard for me ....I want someone to say "look I know this sucks and your scared, but I am here for you!" Anyway sorry this is so long!
Emily 20/F/CF

 

[star]

Emily
No your note wasn't long at all in fact I am greatful for it and yes it would be nice to talk to someone so when you can please e-mail me and put Cf so I know not to delete it. My name is Nicole, My e-mail address is nbm449@yahoo.com
it will be great to talk to someone.
thank you so much again.

 

[anonymous]

My situation was similar to your cousins. I was not diagnosed until I was 22. I have a twin brother who also has CF and when he was six he had phneumonia real bad and was tested for CF at our local hospital (not a cf center) the test was negative. When I was in grade 8 I was told that I had allergie related asthma. I was always under weight and usually had 4-5 BM's a day as well as brutal gas (which sometimes was very funny). After the negative test and allergie nobody gave CF a second thought until I stopped playing hockey and developed the cough when I was 19-20. I finally had enough and ordered my doctor to send my to lung specialist, and the rest is history.

Dave 29 w/cf

 

[anonymous]

My situation was similar to your cousins. I was not diagnosed until I was 22. I have a twin brother who also has CF and when he was six he had phneumonia real bad and was tested for CF at our local hospital (not a cf center) the test was negative. When I was in grade 8 I was told that I had allergie related asthma. I was always under weight and usually had 4-5 BM's a day as well as brutal gas (which sometimes was very funny). After the negative test and allergie nobody gave CF a second thought until I stopped playing hockey and developed the cough when I was 19-20. I finally had enough and ordered my doctor to send my to lung specialist, and the rest is history.

Dave 29 w/cf

 

[allie1]

Dave, if you don't mind me asking.....do you know what your mutations are? I have been told that the mutations don't determine how severe your case is but someone posted a list last week saying the degree of severity based on the mutation you have. My daughter's were in the top class so I don't know what to think.

Thanks! Amy

 

[allie1]

Dave, if you don't mind me asking.....do you know what your mutations are? I have been told that the mutations don't determine how severe your case is but someone posted a list last week saying the degree of severity based on the mutation you have. My daughter's were in the top class so I don't know what to think.

Thanks! Amy

 

[anonymous]

I will have to get back to you on that one. I had the genetic test done and they found one of my mutations but not the other one. will have to find the test results. My center only tests for the 30 or 04 most common mutations.

If mutations don't determine how server your case is than what does?

There are over 1000 different mutations, you would have to think that some would cause more damage than others.

Dave 29 w/cf

 

[anonymous]

I will have to get back to you on that one. I had the genetic test done and they found one of my mutations but not the other one. will have to find the test results. My center only tests for the 30 or 04 most common mutations.

If mutations don't determine how server your case is than what does?

There are over 1000 different mutations, you would have to think that some would cause more damage than others.

Dave 29 w/cf

 

[ClashPunk82]

hey everyone just came in to read <img src="i/expressions/face-icon-small-smile.gif" border="0"> i got tested for my mutation i have 2 copies of e60x. i was told its one of the rarest mutations and my brother and i both have 2 copies of it. my parenst both that have that mutation so my mom always says it was fate that they got married <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[ClashPunk82]

hey everyone just came in to read <img src="i/expressions/face-icon-small-smile.gif" border="0"> i got tested for my mutation i have 2 copies of e60x. i was told its one of the rarest mutations and my brother and i both have 2 copies of it. my parenst both that have that mutation so my mom always says it was fate that they got married <img src="i/expressions/face-icon-small-happy.gif" border="0">