Need perspective

[wheezey]

Hi all,

i was diagnosed with CF in December at age 28. I was diagnosed because a family member was diagnosed. Since then, I am still waiting to see a CF clinic- in the meantime, my pulmonologist has given mixed and unreliable info, so I'm just trying to be patient and wait to get all the info about my own prognosis in a few weeks at the clinic. My symptoms are minimal and my Fev1 is 109, so I'm not in crisis mode.

I need some help with perspective though- all this waiting is weighing on me and my family member is dealing with complications from their diagnosis that really scare me. I'm also going to have to have my husband tested as we were hoping to start a family in the next couple of years. It feels like the carefree part of my life is over now and I'll spend the rest of my life actively managing crises or waiting for the next one. Can anyone help me feel more optimistic? Are there any resources you can recommend that might help me stay positive?

 

[welshwitch]

Hello!

Sorry to hear about your diagnosis. I imagine that it would be difficult to see life the same afterwards and approach it with the same optimism, especially when it comes to starting a family.

I haven't read it, but there is a book called "Now That I Have CF" that is specifically for adults diagnosed later in life. Link here: http://www.amazon.com/Now-That-Have-Information-Diagnosed/dp/3000139028

I'm a 34 year old woman with CF and I was diagnosed at 9 months. I've definitely struggled with the fear, the "what-ifs" and the uncertainty of the future. Talking to a therapist really helped me. I'm not completely fearless, but I was able to see that a lot of the things I was afraid of aren't happening and may never will.

One thing I try not to do is to let the CF dominate my decisions and have my life be dictated by fear. With regards to the future: having children, taking a challenging job, living. CF is part of any decision but it needs a "reasonable place" at the table. It shouldn't bully you out of what you want in life.

 

[Oboe]

Not to make light of things, but if you just got diagnosed at 28 and your FEV1 is over 100%, you're probably fine for a while. Keep doing what you've been doing, listen to your doctor when you see them, and take it easy. Cross bridges when they need to be.

 

[Aboveallislove]

I'm so sorry for your worries. I think what Oboe says is true but also if you have had problems now that you know it will make your health issues so much easier to deal with. Also, do you know what mutations you have? That is very important because there is a medicine that partially fixes the CF defect (not treats the symptoms but fixes the CFTR function) and many more in the works. Given that you were diagnosis so late and your lung function is so good, I would think you have a mutation that is a 'residual function' one that the drug can help.

 

[Printer]

wheezey:

I was diagnosed at age 47. Nothing has happened to you other than having a name for your issues. Nothing happened when the Doctor said that you have CF that wasn't happening before. You will go to clinic and begin a program that will walk you through a very long life.

Good luck and stay in touch,
Bill

 

[4hats]

I think it is very important for you to see a CF clinic as you mentioned. If you have not been there yet, how have they diagnosed you? It is important for the CF clinic to do a sweat test on you and then do a test to determine which mutations you do have. The fact that you were diagnosed at 28 with a good lung function is very positive. With the appropriate treatments you will be able to maintain that good lung function. I was diagnosed when I was 41. Doctors (regular pulmonologists, urologists, etc...) all missed the boat with me. I should have been diagnosed in my late 20s like you considering all the symptoms I had. If I had been been diagnosed I would have been able to spare some damage to my lungs. That is why it is so important to see the CF clinic. Regular pulmonologists do not not clearly understand CF. You need that specialist. In my case, I have improved my lung function 17 points since I started treatments. I know how devastating it is to be diagnosed as an adult. What has helped me is having a good support system around me that truly understands what I am going thru. I hope some of the comments on the forum can allay your fears and anxieties. We are pulling for you.

 

[JustaCFmom]

The only thing to fear, is fear itself

I can understand your anxiety. My daughter was diagnosed at 15 and then we went through the painful process of screening my entire family (10 kids). The later diagnosis makes the statistics better but it doesn't help that inner fear of the unknown.(VEST)

I just want to share that at the time of her diagnosis, my daughter's lung functions were around 75% FEV1 and she weighed 40kg. Her energy and health have improved SO MUCH with the proper diagnosis and treatment!! She gained 20kg in ONE YEAR and her lung functions are well over 100%. I feel like we are getting the Mercedes of medical care. My older CF son had gone to a pulmonologist at one time and the doctor didn't see anything wrong. I am very hopeful. We live at an epic time for CF and the advances have been immense.

Good luck and don't let this diagnosis pull you down.

PS. This is my favourite site... http://cfmedicine.com/history/

 

[wheezey]

Thanks everyone. I am feeling better this morning, the panic seems to come in waves. I've had the sweat chloride test (which was borderline) and genetic test, so I know my mutations and all that. You are right that one of my mutations is possibly going to get new drug approval this year. I have an appointment with the clinic in a couple weeks, their wait was just so long. It's so hard to be given a huge scary diagnosis like this and then be left waiting with no more info for almost three months. I am also a control freak and I don't like not knowing if my current treatment plan (given by my only okay pulmonologist) is the best thing I can be doing right now. I really appreciate everyone's kind and encouraging words, I just have to practice patience a little longer, I guess.

 

[Aboveallislove]

Hang in there...and if you are r117 I'd push for kalydeco off label now to keep you as healthy as possible. You're over 18 and the trials show it works. That's all most insurance policies typically require as proof so with prior auth you'll be able to start hopefully hitting cf hard!!!

 

[MichaelL]

I can understand what you're going through. I was diagnosed at 34 after being sick for months. I'm sorry you have to wait so long to see the CF doctor. My wait was about two weeks, although that felt like a long time. Once I was put on proper treatment, I started feeling better within a few days.

CF seems to effect everyone slightly differently. Given your late diagnosis and your current FEV1, you probably have a mild case. They'll put you on medical treatments to help clear your lungs. One of the best ways to stay healthy is to keep your lung function up. These treatments as well as exercise will go a long way in doing that.

Good luck -- I hope you get to see the doctor soon.

 

[Beccamom]

I was diagnosed at 35 and now I am 37. I understand because I was diagnosed after my children were tested and found to be carriers of two different CF causing mutations. All I can say is with the correct treatment I feel so much better. I am a member of a Facebook group for women with CF from all over the world who have children, are trying to have children, or want children in the future. If you want to join the closed group send me a private message.

 

[kgfrompa]

I so Agree I was diagnosed at 50 and the lung damage was not spared with me also,I have been doing much better now that I have meds that are clearing my lungs and the more knowledge and things I have learned since is a God sent.I never miss a Cf doctors Appointment and feel this support here is so informative and helps me learn and get through the next thing in front of me.I would like to welcome you and I am sorry you have CF.I have learned to ask what I need to get through when i do not understand or I am Afraid even though it might be something I should know.

 

[little debbie]

I was also diagnosed later in life, 42 now I'm 49. Even though the damage was already done to my lungs, with the proper care, treatments and medication, no further damage. I too had to wait 3 months to get into an accredited CF center. My pulmonologist at the time didn't believe I truly had CF because of no family history and being older. I took 2 sweat tests that came out borderline so they really had to push my insurance to pay for the genetic testing. I'm so sorry you have to wait but you do know your diagnosis and seem to be in pretty good health! There are tons of people on Facebook with CF and talking to a therapist really does help. I have 2 daughters and I'm so thankful I DID get sick, or they would've never been tested. They now know they are both carriers and can have their partners tested if they want children. I know it's a long wait, but once you get to talk with someone, you will feel a lot better. Good luck and do everything you can to stay healthy!

 

[jamest]

Man, lung function 109, I would say don't stress too much about it. You've always had the disease, that much hasn't changed. What has changed is that now you can start treating it.