Looking For Answers

[beyerdug]

Hi,
I am kind of afraid to write this note. I don't know where to start. Lets just start by saying I am 40 years old and I was diagnosed with cf when I was 7 years old. I have a sister named Sherry that was having a lot of problems with her lungs and was tested positive for cf. They decided to test me and my other sister and I tested positive for cf as well. Sherry lived to the age of 12 when she passed away. I was examined and reexamined, tested and retested and never had any symptoms of cf throughout my childhood and into my 20s. I decided that I didn't have cf and lived in denial for 20 years. I also (now please be kind to me for this) started smoking in a way to defy my cf. I smoked for 18 years and had many difficulties because I also have asthma. I fell in love 3 years ago and quit smoking. I have been left with damaged lungs and I am starting to have cronic lung infections ( I could kick myself and often do). I finally told my doctor that I have been tested positive for cf when I was a kid. I am trying to come out of denial and get some answers. Has anyone heard of someone with cf that didn't have symptoms until later in life? I want to know what I am facing and if anyone out there has a story like mine. I am scared and I don't have anyone to talk to. My wife tries to understand but I don't think she can fully understand why I lived in denial and what it has been like to try and admit that I have cf now. I have to look for a doctor and I don't know where to look. I used to see a doctor in Madison, Wisconsin but that was over 20 years ago and now I live in Texas. I am looking for help!!!

Sicerely,
Doug Beyer

 

[anonymous]

There are people on this board with pretty mild symptoms so I would say it is possible.

 

[BigBee]

Hi Doug,

My Dad was diagnosed when he was in his early 40s. He lived until age 68 and his CF progressed pretty slowly (everything is relative with CF!). I'd be happy to answer any questions you might have. My blog has some info on my Dad as well.

Congratulations on quitting smoking and coming to this site - I think you'll find lots of useful information and very helpful people!

 

[anonymous]

Hi Doug- - I think a lot of CF people go through a point in their life where the CF becomes more real. I also have a "mild" case of CF - according to my dr's, but I still worry - and didn't show any symptoms of the disease until I was in my early 20's. I currently have pulmonay tests which show my lung capacity at 109% for FEV1. Symptoms started showing up mainly due to a microbiology class I was taking (at UW- Madison) which introduced a bacteria into my system that I never carried before. At any rate, I had a hard few years after that dealing with my acceptance of the disease.

I also started visiting this site within the past 6 months. Both my brothers also have CF - one is 30 the other is 35. I think we would have gone into our 20's without any diagnosis if my middle brother didn't have troubles as a baby. My oldest brother was 5 when he was diagnosed. They tested him after my middle brother tested positive. They tested me as soon as possible after I was born.

I recommend that you visit the website CFF.org This site will allow you to search for a CF center in your area of Texas. They have started adult CF programs in many of the states. Also, this site (cysticfibrosis.com) is very helpful, along with other links associated from this site. Don't be so hard on yourself for smoking - we all deal in different ways. I highly recommend exercising - at whatever level you are capable of - it has been very helpful for me in regards to a form of respiratory therapy.

Best of luck - - Christina

 

[Diane]

Hi Doug,
I also lived a "cf free" life up till a certain point in my life. I was diagnosed at 3 years old , but only got disgnosed because i was malnourished. Once i was started on enzymes ( i didnt need many ) i didnt have any other symptoms of cf except for the regluar colds that kids always get and stuff like that. To be honest i didnt realize the severity of cf till about 3- 1/2 years ago when i had to have 2 pulmonary embolizations. That woke me right up ! I was diagnosed with b.cepacia in 1997 and it scared the crap out of me at first because i heard such awful things about it, but it didnt affect me too badly so i felt since i had a mild case of cf i was probably still "safe" from other bad things happening. Then i had 2 massive hemoptysis's and that woke me right out of my stupor. I started realizing i had to start taking better care of myself. It almost felt like i was just diagnosed with cf because after getting online and reading about all aspects of cf i learned so much i didnt know. I never did any type of treatments or percussion, or even exercised regularly. I kind of thought if i ever needed it i would do it then, but after reading and learning more about cf i started to realize that the most important thing about treating cf is....... prevention. You may be thinking right now to your self the same thing i was thinking, maybe i'm too late, but thats wrong.... its never too late. I started using the vest, exercising, staying more active, and taking better care of myself and i see the difference. I wish i had started all this sooner, but like i said better late then never.If you ever need to just vent, my email is..... Jinxnick@aol.com ..........

 

[Seana30]

Doug

Where in Texas are you? We are in El Paso, and have to go to San Antonio for CF Clinic.

Seana

 

[anonymous]

Hi Doug,

I am 47 and was not diagnosed until 11 years ago. As a kid I always had a cough and colds and at 18 had several episodes of bleeding from my left lung. My sweat test, and I had three of them were still in the high normal range. My bleeding was attributed to bronchiectasis which is rare unless you have cf. But since I appeared healthy, have no trouble gaining or maintaining weight and my sweat test was within the normal range it was decided that I did not have cf. Half of my left lung was removed at 19 due to the bleeding and bronchiectasis. I remained fairly healthy until about 10 years ago then I started to have many bleeding episodes, cough, mucus, fevers, etc.... At that time genetic testing was done again but still no second gene was identified. But all my symptoms indicated cf so I was started on the full regime of drugs and exercise. 2 years later I had the rest of my left lung removed because after having 5 pulmonary embolizations the occasions of massive bleeding was putting me in the hospital 8 times within 2 years. Since that surgery I have been enjoying good health. 2 years later I was tested again with the expanded gene mutation test(87 gene mutations) and the second gene was discovered. I have had MAI three times these past 10 years but after the long term course of treatments, I now test neg. My Fev is 45 (not bad for a one lung girl) and I am on pulmozyme, advair, albuteral, and recently 7% saline. I never thought I would feel this good after the very difficult two years I had back in 1997-1999. So don't get discouraged Doug. Get proper treatment at a cf clinic and do what they advise you to do. Soon enough you will get in a routine and will feel better. Now, I am one of 5 children and I have an older brother who (now he is 51 yrs old) was being treated for asthma around 8 years ago but just not getting much relieve from the treatment. (As a kid he was very athletic and it was tough for him to gain weight.) I begged him to get tested for cf but he said he could never be as sick like I was and that there was no way he had cf. Well finally he got tested and yes he did have the same genes as I have. His sputum test revealed that he also had a serious lung infection that he has since had ½ his right lung removed in hopes of getting rid of it. Since the surgery, 2 years ago, he still has the active infection and is on a multitude of drug treatments. I admire how he adheres to his treatment schedule. He is feeling much better. So here is an example of someone who was in total denial and made a complete turnaround with being a compliant patient. Of course he has a very supportive wife which is a great blessing. Now there is a 1300 mutation cf test available and my husband just had the test taken as we have 3 teenagers. Each child has to have one cf gene from me (which was documented when they took the 87 mutation test back when my second gene was discovered) but maybe my husband might have passed on to them one of the rarer mutations. They have normal sweat tests (but so did I)but now that this extensive test, the 1300 mutation test, is available we want to be extra sure they could not have been passed on a second gene. I certainly will rest easier when I hear them cough that they do not carry a second gene if that is what this test reveals And if it reveals that they could possible have inherited a second gene from their dad's side I will have them individually retested and treated properly early as early intervention is what is so important for cfer's. It is better to know and treat properly. Ignorance is not bliss in this situation. I have another brother who has a daughter age 10 that exhibits many symptoms of cf and I have begged him to test her since we know that the cf genes run in our family and in his wife's family but he and his wife can't bring themselves to do it. He knows that my cf brother and I have gone through a lot but it would have been less if we were properly treated earlier. It boggles my mind that he denies his daughter proper treatment. I know he loves her more than anything but he cannot bring himself to test her. He avoids me at all cost as I am a constant reminder to have his daughter tested. Out of the blue 3 weeks ago he called me for the gene information and said he was going to have his daughter tested (because she is constantly coughing and being treated for bronchitis but so far he hasn't. This has happened three times where he has requested the info but then has not followed through. I feel powerless but I will not give up trying. She was even born with meconium blockage at birth which is a sign of cf but her sweat test was normal and at the time of her birth the mutation test was limited and only picked up one gene. I am afraid Doug I have gone on and on but I want to impress on you that today is a new day and although you did not have control in inheriting cf you do have control on the choices you make. I came across this web site recently and it was reading your note that inspired me to write. I want to thank everyone who writes in and shares their stories of courage as well as their fears. I have learned a lot from you all and Doug I think you will find that you will get a great deal of comfort and knowledge from this group who understands exactly what you are going through. The worst part of cf is that we are to remain at least 3 feet from each other and if we harbor a serious infection than we should not be around other cfer's at all. I have not been able to kiss, hug or be in the same room as my cf brother in almost 3 years because of his infection. With only one lung my doctor wants me to be very cautious as his infection is very serious for me to pick up. It is what makes having cf the hardest for me. I wish you well, Doug, and will be checking in to see if you write to let us know how you are doing. I hope you do write in. You as well as everyone connected with is website are in my prayers
--Janet

 

[teknogeek1300]

My short reply:

I'm only 17, but my CF has not effected me what so ever, besides the diabetis.
Good to hear that you're doing ok!

 

[Emily65Roses]

You can find yourself a lovely CF center here (I have even specified so that these are all TX):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/index.cfm?state=TX
">http://www.cff.org/chapters_an...rs/index.cfm?state=TX
</a>
Hint: Look specifically for anything labeled "adult program."

 

[beyerdug]

Seana
Thankyou for replying. I live in canyon lake which is near san antonio. I will look for the clinic.
Doug

 

[beyerdug]

Thank you all for responding. I feel overwhelmed by the information and sentiment that I have recieve, and in such short time. I went to my doctor again today because I feel worse after the antibiotic he gave me. He gave me a sttreoid shot and a new antibiotic. He is trying to get mor information on cf but I think I know more than he does at this point. I guess I need a specialist fast. Another concern of mine is that poeple keep saying they have to stay away from sick people when they have cf. That news puts a twist on my future plans. Since I got married, my wife changed careers and I quit my job to follow her to her new one. I am currently in college studying to be a nurse. That doesn't seem possible now. Maybe that is how I got this infection that won't go away. I do my clinicals around some pretty sick people sometimes. I have to sort things out but I do want to tank all of you whom responded and those of you who just read my posting.

Doug

 

[anonymous]

Hang in there Doug...things will get better. Getting a cf doctor is top priority then you can work on the other aspects of your life. Remain positive. You really need a sputum culture to see what is growing in your lungs so that you can receive proper antibiotics. So get that appointment as soon as possible. And as far as becoming a nurse, well...one door closes and another one opens. Seek advice and council from your cf physician and don't get discouraged.
Things can only get better!
Janet

 

[Emily65Roses]

There are some people that are germ freaks, Doug, keep that in mind. You want to avoid really obvious crappy situations, but what's "obvious" to someone isn't to someone else.

In the end, you need to do what works for you. One of my favorite CF people just got certified to be a nursing assistant. One of our favorite people here, Jennifer, is finishing (or is it done? I'm a bonehead) nursing school as we speak. Generally you don't want to run into a hospital licking all the surfaces, but if you or a loved one is going to school to work in nursing, then hell. Do it. Don't change that kind of thing. And don't lose sleep over it. You just have to make sure to learn to be smart about it. Wear masks where maybe another nurse wouldn't, etc. You'll learn it pretty fast once you actually start down the CF path, so to speak.

And as Janet said, first move: Get a CF doc. Anyone who isn't a CF doc, who's trying to handle your CF, will not help you. There are a lot of smart doctors out there, but unless they have specialized in CF, they are CF dumb. End of question. So you need to specifically use that link I posted below and grab yourself a CF doc. Not only do you get a CF doc, but you get a CF center. You see a pulmonologist, a dietary person, a social worker, etc etc. Whatever is necessary, they supply. CF clinics are a CF person's best friend. Say that to yourself over and over. Haha. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I'd have to disagree about the CF clinic...

I HATED the clinic enviroment. I wasn't a person, I was a disease. Those appointments took ALL day. You had to see everyone. I didn't need a GI doctor, only my lungs are affected. I didn't need a social worker and she was no help anyway. I didn't need a pyschologist...already seeing one for other issues and a pysch in a CF clinic would be no help with those issues so why bother having to see the one at the clinic and pay for that?

I didn't grow any bad bugs, why expose myself to people that did?

SO I got a private practice pulmonologist. Wonderful thing is we are free to explore things that might not be okayed by the CFF...like glutathione, doctor is a lot easier to get a hold of. My appointments don't take all day and I don't have to see a bunch of people I don't need to see. PLUS this doctor has admitting priveledges at the local hospital...much more convenient

A lot of doctors at adult CF clinics are ped pulmos anyway and not able to handle "adult" problems, a lot of places don't even have adult clinics! And the ones that do...you would be surprised at the ones that aren't CFF accredited anyway.

For the record since seeing a private practice doc my health is a lot more stable, I haven't been in the hospital in 5 years, I'm on a treatment regimen that works for me, not just a bunch of meds they put all CF patients on, my appointment times are much more conveniant etc. (med wise I take daily TOBI,Hypertonic saline, GSH, Xopenex, Spiriva, Nasonex)

 

[Emily65Roses]

I'm not looking to argue. Whatever works for each person personally is the way to go. But I don't want anyone (Doug included) to think <u>all</u> CF clinics are the way you described.

Never takes me more than about an hour or two, depending on how many tests I need done.

I'm never just a disease at my clinic. I am a person with a disease. They like to study me and the CF, but they also ask about my quality of life, what Mike and I are up to, how I'm feeling in general, etc. It depends A LOT on the individual doc. I have bragged before about my doctor. I LOVE HIM. He's fantastic, listens to me, treats me like a person, cares about what I'm doing, how I am. He balances my treatments, remembering that I still have a life.

I know CF adult clinics aren't everywhere, but again, mine is. It's brand new, and I just started going there this past year. But it's a good clinic, my doc is fabulous, etc etc. I just wanted to make sure you know, it's not always bad. It can be, of course.

Really when choosing a CF clinic, you need to choose a clinic you like and a doc you like. Doc is generally even more important, because you deal more with them personally than with the clinic as a whole. No matter where you are, you will docs that are buttmunches. You need to find one you personally like and can deal with. After that's done, you'll have an easier time with your CF care as a whole.

 

[Allie]

Ry did better with a private pulmo too. We had our little 'panel of experts' that we saw, social worker, pulmonologist, nutritionist, etc. But like Emily says, it's different for everyone. We did it because clinic was too far, but his health did much better with it until he caught cepacia.

 

[Ricky]

Hey man first of all you're an idiot for smoking while suffering with CF. Sorry to be so blunt. I turned 40 last week. You have to stay active. Smoking has already taken years away that you won't be able to get back. But you have to do something even if it's just walking. I played sports all my life, I've owned my own horse which kept me very busy. I' had surgery 10 times in 15 years. But I still stay active. I was in the hospital only once last year. I had to quit work in 1996 but it was the best thing to do for my health. Although is was tough on me mentally. But if you ever do stupid things like smoking again you won't be around much longer. I didn't start having cf related problems until I got into my 30's. all you can do is live day by day. people younger than you and I die from cf every day. so if you want to keep kickink death in the rear start getting more active.

 

[Emily65Roses]

Just a request for Ricky. I myself think his smoking was stupid too. I imagine most of us do. But he already said he knows that, for one.

Also, if you want to share your opinions, by all means, go for it. But call what he <i>did</i> stupid, don't call him an idiot outright. Namecalling isn't... well, called for. You can do something idiotic, it doesn't automatically make you an idiot.

<b>Edit:</b> Mind you, this is just a suggestion. No orders. Hah. Just an idea. *shrug*

 

[beyerdug]

Thank you for the advise and the reality check. I only told part of the story. I have been active all my life. I guess that was another way I tried to defy cf. I wanted to prove that I could not only be normal, but be better than normal. I didn't want to be restricted in activity like I saw my sister and the other childeren that I knew with cf. I ran cross country in high school and was damn good at it. I joined the millitary when I was 19 and serve in a field artillary unit ( very physical work). I never owned a car until I was in my 30's and rode my bike as my sole source of transportation. I trained on a road bike and would ride 50-60 miles a day four to five times a week throughout my 30's. I am now 40 and have many acres of cedar trees that I cut and put up fencing using the posts. I work my land and stay very active. I canoe, walk, hike, play sports, and do many things to stay in shape. I had been a vegitarian for 10 years and cook all my meals. I just started eating chicken again because I raise them. I have taken care of myself very well exept for the smoking. Believe me, I know the problems I created with the smoking and knew I was killing myself by doing that. I think I felt guilty that my sister suffered so much and I got off easy. I was killing myself to try and make up for that. It wasn't until I met my wife and her 2 kids that I realized I had something to live for. The problems I had with my lungs in the past have always been cured with antibiotics so it was easy for me to think it was only the smoking and not the cf. It helped me stay in denial. I now have had an infection since last fall that stays, nagging me, then exasperating itself to where I go to the doctor again. It wasn't until my mother mentioned that it could be my cf that I confronted it again. You see, we didn't talk about cf in my family after my sister died. That was 32 years ago next month. I guess it was hard for my mom to lose a child and since I showed no signs of cf, she must have felt that if she didn't talk about it, I would live. I don't want put too much pshyco-social problems out there at once. I know why I smoked and I know why I quit. I know why I was in denial and why I am reaching out now. I'm not trying to rub anyones face in it, I just want answers.
Doug

 

[anonymous]

Hi Doug -

No one can explain their whole life in a few paragraphs. Of course you had your reasons for smoking. We have all done things that later we regret. That's human nature. But that part of your life, smoking, is over. You have accepted that your cf needs proper attention and you have the support of your wife along with 2 children to keep you busy and focused.

You need to get to an adult cf clinic. I cannot stress that strongly enough. Give them a fair shot. Get examined, tested and follow advised treatment...then if you are not happy with the clinic you can always look elsewhere for treatment but I believe you will be pleasantly surprised. Only an adult cf clinic will be up on the latest and safest treatments. Like Emily I too love and respect my doctor and the entire staff. They treat me as I should be treated, as an entire person with feelings and a life. They respect my questions, suggestions and work with me, not against me. I have never been more than 2 hours total for my appointments and that includes the one hour the doctor many times spends with me going over things. I do not see the psychologist, physical therapist, social worker, nutritionist etc when I go because for me at this time it is not necessary but it's nice knowing that they are available if I needed them. I travel 70 minutes to the city for my appointments and they are worth it. If I needed hospitalization, which hasn't happened in almost 7 years, it will be at one of the best hospitals in the country because that is where the cf clinic is associated with. When you become seriously sick you want the best.

As we all know cf is not an easy disease...doctors are still learning more about it all the time...that is why you need to go to an adult cf clinic where they are on top of the latest developments and where their experience which includes working with many other adult cf patients will benefit you. Make that appointment today Doug, do it for yourself, do it for your family. You, your family and your mom will be very happy you did.

--Janet, 47 w/CF