Just Diagnosed at 36

[abloedel]

I just got the official diagnosis yesterday that I have CF. I'm a little freaked out but encouraged by everything I'm readying about treatment options, advancements, etc. The good thing about this is at least my recurring pneumonias, sinus infections, digestive issues, etc. can all be explained now.

Unfortunately, I was (notice the was) a heavy smoker for about 20 years....just quit with my latest hospitalization in January. I've been diagnosed with "moderate lung disease" at this point. Are there other CF's out there diagnosed later in life like myslef who are also former smokers...I'm curious as to what role this has played in the progression of the disease.

The CF clinic is growing my sputum specimin...so far staph has shown up, and they're telling me something else is growing but too soon to say. From what I've read, it's probably either B. Cepacia or Psedomonia (sp?)...anyone have more info on this and what it would mean?

Also looking for info as to what to expect as far as treatments. I don't meet with the doctors again til April 7th, so in the meantime I'm trying to educate myself as much as possible. The only thing that's been started right away was pancreatic enzymes and ADEK as all my vitamin levels were low. I'm also on combivent inhaler and advair, but these were prescribed by my pulmonologist prior to the CF diagnosis.

Also, I have a 16 year old daughter. I know this will make her at least a carrier of CF. Should I be having her tested for CF also since my diagnosis was made so late in life?

Any help, good websites, resources, support groups, etc. will be appreciated!

Thanks - Amy

 

[jaime]

Hi Amy,
First of all, congratulations for quitting smoking! Good job, that will definately help in your breathing being better.
Im sure now that you have a diagnosis you will be treated properly and hopefully start feeling better very soon. Treatment is really different for everyone, as you can read on this site, but usually consists of some type of enzymes, nutritional supplements, nebulizers, chest therapy (or vest treatment) and antibiotics (sometimes oral sometimes IV).

Many of us were diagnosed at birth so we have been treated since infancy, but some people that visit this site were diagnosed later in life. Either way, you can find lots of info just by browsing the older threads on here. And if you have any specific questions, just ask, people on here are very willing to help out and give advice/opinions and always support.

You are right, your daughter probably should be tested (or at least her father tested to see if he is a carrier)

Are you being treated at a CF center?
Hope you feel better soon.

 

[vickysmommy]

The best advice I can give is, when they do give you the daily routine of meds, stick to it. I have reaccurant staph infections, and Im told thats one of the worse infections you can get, you'll probably have to be hospitalized and sometime they put me in isolation because staph is contagious, so Im told. So be prepared. And good luck!

 

[anonymous]

Jaimie and Sarah:

Thanks to both of you for your insights and wishes. It's nice to know that I'm not alone.

When I was hospitalized in January, the staph infection had taken over 4 of 5 lung lobes and I had to have a chest tube inserted. I was sent home after two weeks with a PICC (sp?) line for another 3 weeks on home iv antibiotics and home O2. Fortunately for the moment, I am off both right now, but my cough is getting worse again...so of course that worries me. Now that I know I have CF, looking back I think this should have been diagnosed when I was around 10. It makes me wonder had we known what treatments, if any, would be different...I know that past can't be changed and I can only move forward from today, so I will do my best to stay as healthy as possible, for as long as possible.

I am in Denver, so I'll be seen at the CF clincic at National Jewish. I'm glad that I know what's wrong with me now and hope that it will help me obtain more appropriate and better treatments, and sooner so that I don't get so sick again!

As I start informing my family of my diagnosis, I find it interesting that my 16 year old daughter seems to be handling the news better than anyone. I think my husband is still in a state of shock/denial and isn't yet ready to talk to me about it...hopefully he will be soon though!

Good luck to both of you as well!

Amy
36f w/CF

 

[anonymous]

Hello Amy, Yes it's great you have been able to knock the old smoking on the head, I was a casual smoker for many years, I am in my early 50's, diagnosed at age 37, with pretty much the same history as you. Did'nt know Staph. Aureus was contagious.... I am on permanent antibiotics. 4 flucloxicillin daily since I contacted Burkholderia cepacia 3yrs. ago, I also take Creon 10000 with my meals {ammount is at my discretion} I have learnt to keep a very low profile and not associating personally with other CF patients. I chose to have just one child, he's now 28 and expecting his first babe in July. I was advised to have him tested about the time of my confirmed diagnosis, and yes he is aware he is a CF carrier.
I lost a bro. and sister to CF, at 23 and 42, my sisters 2 children also carry the defective gene, my dear nephew has 2 little sons free of CF.
Amy this is an excellent site to tune into, most people are wonderfully supportive and only too willing to help. Good luck with everthing ahead!<img src="i/expressions/wine.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
Cheers