FRIENDS

[anonymous]

Hi Amy,

Thanks for your support. I guess the situation did not help this weekend as my daughter has been fighting a cold and a high fever the entire week. She was taken to see her pediatrician on Thursday. We were told that the cold had to run its course. She is much better this morning. She has had numerous colds throughout the season. We were hoping that the previous one was going to be her last one. Let me try this again: I hope this one is going to be her last one of the season. I was just tired and needed to let my frustrations out. Oh my God, I just realized something! I am coming across like a co-worker that complains of a cold and needs to go home!!!!!!

With respect to determinig the other gene, I am not certain that having this information will change things medically. However, don't quote may on this, I don't have any scientific proof. I believe that searching for that other gene is a personal matter. The way I see it, knowing what the other gene is will not change the fact that I have CF.

With respect to the eczema, I can't say that I have had this particular ailment. What has your doctor recommended?

Dxat35

 

[NoDayButToday]

I know I'm not an adult diagnosed (I'm not even an adult yet LOL), but about joint pain- a lot of CFers have joint pain and CF related arthritis, though I'm not sure why. Just wanted to say it is fairly common.

 

[abloedel]

Coll - thanks for the info....I go to clinic on Thursday and they are going to have me meet with a Rheumotologist....

As far as you not being an "adult", I've read a great deal of your posts, and you are very insightful, supportive, and senstive...more so than a lot of the "grown ups" I know. You seem to have an "old" soul.

Amy
36 w/CF

 

[anonymous]

To Dxat35

Sorry I was not on line this weekend at all. I was diagnosed when I was only 6 months old so I do not know any other way of life. Like I said before what you are going through now must be extremely difficult. The good thing is now you have your diagnosis and you can begin your treatments. You will feel so much better once you get into a "system" with your treatments.

I take pulmozyme and colistin in my nebulizer. You may have heard some people take Tobi, Colistin is just a different form of an inhaled antibiotic. I also take pancreatic enzymes. I am hoping that you life near a CF clinic - hopefully one with an adult clinic. They will be extremely helpful to you. I was working until last June when I just could not do it anymore. I had a very bad year, (not all CF related - 2 deaths in my family) and I think that made me have absolutly no resistance to anything. I kept telling my boyfriend that if someone walks past my house with a cold - I would catch it. Not working has been really good for me. You are not at that stage yet. Your PFT's are still REALLY good.

Please let me know if I can answer anything else for you.

Rosie<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Hi Rosie,

Thank you for your response. I am sorry for your losses and that you, yourself faced health challenges in 2004. Hopefully 2005 will be kinder to you.

Reading your history has given me some comfort in knowing that one can survive with CF. When one is first diagnosed with the disease, the first reaction is to go on the internet and get as much information as possible. The first thing I found was that the median survival rate was 31 or 37 years old (depending on the site). It immediately sent me in a panic. I felt as if I had been granted a death sentence. However, your story does give me hope.

I am attending an adult CF clinic. Thus far, the team has been fantastic. According to their stats, they treat 75 other CF adults. Although the stats may not seem very high, they seem to be on top of the latest research and treatments.

At this point in time, I am pretty much used to the routine and I do feel much better physically. Scheduling treatments has not been a major problem for me as I also have diabetes and learned long ago how to schedule my time. I was born with borderline Type 1 diabetes and did not require treatment up until age 32. My doctor is unsure if my diabetes is related to the CF. We have a history of diabetes in the family. What you had said about not knowing any other way of life is so true. When my doctor told me that I would have to start treating the diabetes, the emotional impact was minimal, since I already knew from the time I was 5 years old that I would someday have to take care of it. However, learning that I have CF was a major shock. Hopefully, in time I will come to accept that as well.

Sorry for rambling.

Dxat35

 

[anonymous]

Hi Eileen,

Thank you so much for your response. I think your spirit in dealing with your CF is truely amazing. Your story up until diagnosis does in fact closely resemble to mine!

I am also amazed that since diagnosis at age 37, you have only been hospitalized 3 times and that your currrent PFT is 80%.

I am a little surprised that your doctor diagnosed you with a "mild case" of CF with pretty much a normal life expectancy. My doctor preferred to stay on the cautious side, declining to respond to my question of life expectancy.

Eileen, if you don't mind, I do have some additional questions for you:

Your current PFT is high. Has there been any major variations since you were diagnosed, i.e. a major decline and then a resubsequent rebound?

Most of your flare-ups seem to have been treated with oral anibiotics. On average, on a yearly basis, how often do these flare-up occur? Have you ever been concerned about developping resistance to the oral antibiotics?

Is your diabetes entirely controlled by diet and exercicse or do you take medications/insulin to regulate glucose levels as well?

You mentioned that you have an exercise regime. My doctor believes that I too, should take up some form of cardiovascular activity. However, I am having difficulties scheduling that part of the treatment. At what age did you take up exercising and have you been doing it ever since? What form of activity do you do (running, areobics, swimming etc)? In your opinion, do you believe that exercising has helped maintain your lung function?

Thanks,

Dxat35

 

[anonymous]

Hello again Dxat35,
see my Chest specialist very 6mths and he's become quiteDo hope you and your family are having a pleasant weekend. It's 8.30am Monday, here in New Zealand, our w/end is over and we're into another week. Have just finished my breakfast so thought I would reply to you before I started my day.

I usually a friend over the decades of visits to his clinic. I feel I can talk to him on any concerns and his advice I truly value. On one such visit I asked about my life expectancy and he virtually told me I'd be around to push him in his wheelchair!! That was about 10 years ago, he would have been in his mid 50's and although my health has slowed me down a little, I remind myself things could be worse.!

I believe with my CF, my pancreas was more badly needing attention than the lungs. My lungs normally do not produce the copious amounts of mucus as my brother and sister did. Only when I get a nasty chest infection and the ugly bugs rear their ugly heads will I cough up endless mucus. I do constantly clear my throat, any mucus is generally not as thick as when I have an infection. I take 4 flucloxacillin {500mg] caps daily, and have been on these permanent antibiotics daily since my lungs picked up a sec. 'bug' a few years ago. Since then I have on the average 2 flare-ups annually, winter times seem to be the worse. I have just recently moved home to a different climate and so far this year things have been going fairly well, that means I have managed to stay away from hospital!!

Yes, the issue of resistance to oral antibiotics has been thought about, but I will deal with that should I have to......I have learnt not to speculate about certain things we read or hear about unless it becomes an issue to you personally. For now, with my antibis, I have no unpleasant side effects and know help is always at hand should anything change.

My diabetes is diet controlled currently, but my GP said there may be a need to go on medication if my readings drastically change in the future. I test my little fingers 2days aweek{6xdaily} to get an accurate meter reading for my g\cose levels, always know when I've had my lapses, just a little naughty in this area, but getting better!! Yes, exercise here too, does help.

Yes my PFTS are fortunately at the higher end of the scale, I attribute this to playing tennis all year round, less in the winter months, am doing alot of walking and exercising as much as possible.
I would most definitely go with your Doctor's advice and settle into a reg. form of exercise, just a thought Dxat, I am thinking of getting a treadmill for the winter months, when I know it may be difficult to get out and about as often, have you ever had a work out on one of these?
I have always played sport, tennis from preschool and am still competing, played all day yesterday in a local match, more than a little weary today. And yes without a doubt, regular exercise has been hugely beneficial to my current state of health. My sister found swimming to be her form of exercise, tennis to a lesser degree.

If I can be of further help Dxat, let me know. It would be nice to keep in contact. I have posted my email address further back, if you wish at a later date to respond that's fine.

Do take care.
Cheers Eileen. <img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Hi Eileen,

Exercising in the summertime is not a problem. I normally walk (briskly) to the train station to and fro work. It is an 1/2 hour walk each way, thereby getting an hour of exercise a day, five times a week. The wintertime is more difficult. It gets too cold to walk to the train station. I do have a stationary bike at home. However, the doctor has told me that that is not sufficient. For now, I'll concentrate on my walks since spring/summer has arrived.

I'll speak with you again shortly. For now, take care.

Dxat35

 

[anonymous]

I do not have cf...Iam a mom of a 5 year girl w/cf. I looking to meet other people who live w/cf. my e-mail is kitonha@yahoo.com.. e-mail me sometime!

 

[anonymous]

To the previous poster,

Welcome to the website. This is a great source for support. Was your daughter recently diagnosed? I get the sense that you are looking for comfort and support.

Dxat35