Hi all, I'm new to this...

[chantelfox]

Hey there everyone. I am new to this forum thing. I just have a few
questions that I was hoping to get some insight on. I am 24 years
old and was diagnosed with CF at 2 months old. I have been pretty
healthy my whole life. But, when I was 16 I had to have my first
hospitalization for IV antibiotics. I was devastated. Since then I
have needed IV antibiotics about once every 2 years. I would only
agree to get them if I was very sick (w/ horrible fevers, night
sweats, bloody sputum, the works) and I would fight them about it
even then (and still). I never got used to the idea of having to
have IV antibiotics, because I was always under the impression that
when I started needing IV's it would mean that my health was
rapidly declining.  It also scares me because I was told
during the second time I had to have them by the technician putting
the line in (I always get a PICC line put it) that I would only be
able to use the veins in my  arms a few times, because soon
they  would get too damaged to use. I refuse to do the
"alternative" and have a permanent line put into my
crotch, chest, neck or any other creatively horrible place they can
think to put a line.<br>
<br>
OKay, now for the questions... I just went to the center for my 6
month check up and they tell me about how other people with CF do
yearly "tune-ups" with IV antibiotics, before a person
actually gets so sick that they NEED IV's. They say this helps in
the long run. Does anyone else do these yearly tune-ups? Are these
doctors just being overly cautious? I have never met ANYONE with CF
in person (except a little 3 year old) and am really unsure of what
truly is "normal" of someone with CF in pretty good
health. They want me to go have a "tune-up" next week
(for two weeks), because they want me to be "prepared for next
year". (I am going to begin my first year teaching and I was
asked to teach 2nd Grade) I am not sure if I should do the IV's. It
has been a very difficult transition to go the first 16 years
without them and all of a sudden having the docs tell me I need
them every year.<br>
During this same visit (4 days ago) they told me I have
"pre-diabetes". To which I did not react very gracefully.
I was devastated and still have a hard time controlling my
emotions. I'm embarrassed to admit I have cried a lot in the past
few days. My boyfriend is getting fed up. I didn't know about the
CF Related diabetes until about 2-3 years ago and I always said
that if I got it it would be "the end of my world",
because I would NEVER give myself shots. Is there anyway to help
prevent CFRD if I have pre-diabetes? Would I absolutely have to
have insulin shots to control it? Are there pills...I would rather
take 50 pills a day than get even a single shot every day (let
alone 5-6!!!).<br>
<br>
It's hard because I don't have anyone to talk to about this, since
no one I know has been through anything like this, so any advice
would be so greatly appreciated.<br>
I'm so sorry this is SOOO long!!!<br>
<br>
<br>
Chantel, 24 w/CF Dx @ 2 months

 

[thelizardqueen]

First of all, welcome to the site! I myself have only been on IVs twice for CF - once when I was 15, and the 2nd time would have been last month. I would worry about going on IVs when you don't need them simply due to resistance. I would worry about your bugs becoming resistant to IVs if you're using them when you don't need them. My way of thinking, is that I will only use IVs if oral or inhaled meds don't work for my active infections.

I know you're going through an emotional time, but getting CFRD is not the end of the world. I got it when I was 14. For a couple of years before I kept begging my docs to get me tested for Diabetes, but they wouldn't. So there was nothing I could do to prevent it. The only thing I can suggest to try and prevent it, is cut back on your sugar intake, or even all together. I know, easier said then done, but it will make you healthier in the long run. And if you do get CFRD, the shots will become easier, trust me.

Have you also considered talking to a counselor? If you're dealing with a CF team, they should have a counselor on hand. I know I talk to one about all my problems - CF or diabetes related, or just about anything. There are pills you can take for diabetes, but I'm not sure how that works, as I do shots. Just know that whatever happens, it will all work out and it will become normal for you.

 

[anonymous]

Wow so I started reading your post and thought I wrote it, it was that similar to my life.

I am also teaching next year for the first time (I hope you don't live in Chicago because if you do I am going to be VERY jealous that you have a job!) and my doctor wants to do the same thing and have me go get IVs so that I won't have to get them during the year.

I have only had IVs three times (i am 24 also) and HATE it because I also feel I am getting worse and will not get a port so i want to keep my veins.

The deal is this, I worked as an associate teacher in 2nd grade last year and it was HARD. i got sick all the time and am now the worst i have been in a year. at the same time i made a promise with my dr that if i work really hard this month and raise my PFTs then i won't get IVS.

So i say if your PFTS are down then try and raise them and then you won't have to get IVs. Other than that, mabye you could convince your dr to get home IVs? There is going to be no way that you will be able to get them during the school year.

I do anything to avoid them, and although it is not the smartest I also don't know anyone with CF and don't deal with it well.

Don't know if that helps, but I am here if you need me<img src="i/expressions/face-icon-small-smile.gif" border="0">

Sue 24w/CF

 

[Allisa35]

Hello. Welcome aboard. I'm still pretty new on here myself; only been on for a couple of weeks. I can relate to what you are saying. I am now 35 and have only been in the hospital 4 times in my life (one for stomach flu bug). I have nevery really heard anybody at our clinic push for the "tune-up", but I know that there are drs. that push for it. My last hospital visit was when I was in high school (probably 20 years ago). I totally relate to you not wanting to have it done.

As far as the the diabetes, that's a scary one. My doctors keep pushing for me to get the glucose tolerance test done, but I haven't done it yet. About a year or so ago, my doctor (regular dr) had me do a blood sugar stick there in his office. It was some awful number, like 300. He was like, "We need to get you on insulin right away." Looking back now, I should have questioned why he was just going on one stick. He should have done another stick(as I think their machine was not working properly). I do think that they drew blood at the time to test. People who know me, know that I am afraid of needles. I don't deal well with them at all. So to say the least, when my dr. told me I had diabetes and needed insulin, I broke down. The thought of having to give myself a shot just about devastated me. The only good thing about it would have been the fact that my husband is an EMT and he could have given me the shot if need be. There is no way I could give myself a shot. I can't even watch someone on TV get a shot. My flu shots are few and far between. Anyway, I had to keep a diary of what & when I was eating and take my Blood Sugar levels 2 times a day. He never did put me on insulin. My levels were pretty much normal and my dr. didn't/hasn't taken any further actionl. However, lately they seem to be running low (the other day it was 39-but I could tell I needed something quick and that it was dropping). If anything, I think I am hypoglycimic, not diabetic. So, I can totally feel where you are coming from on this one. I wish I had something positive that I could say that would help you through it.

If I remember correctly, I asked my dr. (when he said I needed insulin) about taking a pill and he said that wasn't an option. I don't remember why.

I know that I have been very lucky, health wise. Sometimes I just think God is watching over me because I haven't had to have anything done (anything related to needles that is). I'm sure my day is coming, and I will have to face it.

Try to keep your chin up. I know it's hard. Maybe you can try talking to a counselor at the clinic (if they have one where you are). Try to think positive.

 

[coltsfan715]

Hi there and welcome.
I didn't read through all of the responses yet, but chose to respond already.

I am 23 and have CF and was diagnosed on my first birthday. I feel I have had a moderate case of CF my whole life - though now by looking at my lung function I have a severe case I suppose. I think it depends on the clinic you go to as to whether or not they recommend the yearly tune-ups. The first doc (he was a CF doc - just wasn't a part of the Cf Care Center business politics prevented it) I went to for CF followed the yearly tune-up practice. I went in every year as a kid until I was about 11 when my doc passed away. Then I started going to the local Pediatric CF Care Center they had a different practice. They chose only to put me in the hospital when I needed it. I went from having a hospitalization every year to not having one for 3 years. I then started requesting that they admit me about once a year I didn't like getting "that" sick - fevers, night sweats, coughing up blood in my sputum, weight loss sick - before they wanted to admit me. I prefered getting a little sick and trying oral meds first, but if they didn't work I wanted to just be admitted instead of them shuffling me to another med and another and another (like they had done in my 3 yr hiatus from the hospital). Now I see an adult pulmonologist (waiting to get into the new local Adult CF Care Center) and go in about once a year someimes more if I need it. When I go in now I call them tune-ups but I am usually sick with fevers, streaks of blood in my sputum (I have only coughed up pure blood once a few years ago and it was due to a med I was taking) and so on.

I also have CFRD and was diagnosed at 17. They told me I was pre-diabetic at about 13. At 13 I thought CFRD would be the end of the world, but at diagnosis I realized it wasn't. I had gotten so sick before they diagnosed me (due to not knowing/realizing what the problem was) that I looked at my diagnosis as a life saver. In saying that - after my hospitalization and diagnosis with CFRD I had a breakdown once I got home. Everyone else (my parents and family) had their breakdown when I was in the hospital, and I held together pretty good. When I got home 2 weeks later and it hit me I was going to have to give myself shots everyday for the rest of my life I lost it. I cried and cried and refused to give myself my shots at one point. My mom smacked me (like the movies the "pull yourself together man" smack and arm grabbing body shake - SERIOUSLY) and told me to get a grip and that if I wasn't going to give myself the shot she would have my dad hold me down and she would give it to me. After that I snapped out of it and realized this couldn't be the end of my world or I would die. Since then I have been okay with it and I am sure you will be too. It is shocking and scary at first. I would ask for some info from your docs and educate yourself as well as coming here for personal experiences and advice.

As for prevention I am sure you will get some great responses on here because there are some people that have managed their CFRD fantastically through diet modification (at least I have read a few posts that led me to believe that). I personally had/have a caffeine/soda addiction so I am not one of them - that and I like to eat whatever I choose too - so I can't help in that respect, but if you ever want to talk about CF/CFRD feel free to PM me I will respond and answer whatever questions I can. I have an appt with my endocrinologist next Tues. too, so if you have a question and I can't answer it I can ask him <img src="">.

Hope you start feeling better, and I would tell your boyfriend how scared you are and try to help him understand why you are so upset. It may help him to not get so fed-up. Also though realize this pre-CFRD diagnosis is NOT the end of your world. If CF has not been the end of your world this won't be either. It is an adjustment Yes, and if anyone understands the adjustment it is us here. You have to snap out of this at some point though. You do not have CFRD yet, and you are doing a great thing by coming here and asking how others have handled it. Do not let this pre-diagnosis ruin your life and your relationship - I would hate to see that happen especially when I am sure you can handle it if you have been able to handle CF.

Have a good one and do take care and don't hesitate to PM me or email me (I will put my email at the end of this) if you want to talk.

edited to add: Sorry that is so long.

You are in my thoughts,
Lindsey
xiao07@hotmail.com

 

[anonymous]

i have a "tune up" every 6 months weather it is needed or not

 

[Giggles]

I get yearly tune ups in the late fall to prepare for winter and all the viruses etc. I NEVER use to do this when I was younger! I would wait til I was SUPER sick and then go into the hospital. Now, because of doing it yearly I like it much better!!!! Now I do no wait til I am so sick and that makes it sooooo much easier to get thru the hospital tune up. Eaiser to get back to my baseline when I am not fighting just to feel better. I HIGHLY reccomend the yearly tune ups, it is just easier on your body when your not soooo deathly sick. You can also finish up your IV treatment and tune up at home with a home healtcare company. It is sooo easy to administer your own drugs thru the IV and you get the comforts of home. But you must be good about still doing all your other nebs and vest 3-4 times a day thru out your 2 weeks at home!!!!

As far as your veins. I have been using practically the same vein every year forever. Yes your veins can get shot but not necessarily. I have doing IV's since 5 years old on a regular basis and mine are not shot and do not have a perm. IV.

Finally to address the CFRD. I was just diagnosed last year and yes I did not accept it well and was upset about insulin. However, since mine is mild still I am able to take pills with meals and only insulin at night. However, it is reccommended that CF people take insulin b/c it works better. But, ask your doctor if you can try the pills and see if you can keep the diabetes under control that way. You do get use to the shots, but I know what you mean b/c I am very against right now having to do the insulin with meals. So far I do not have to but have to watch and monitor myself real good. I try to spread my carbs out thru out the day and not eat alot of carbs in one sitting. No more regular pop!!!! And -desserts are VERY limited if non-existent which is really hard but you do what you gotta do. I rather not have dessert so I do not have to do shots.


All in all there are options out there for treating CFRD and getting thru the tune ups.


Stay strong and positive! Take each challenge gracefully and do what you have to do to feel good. Because that is what is worth it in the end!!!!!!


Jennifer 34 years old with CF and CFRD

 

[anonymous]

I've been giving myself insulin shots on and off during my 10 days of prednisone. I must say, its not near as bad as I thought. Really, its annoying having to carry the kit around, but its not that bad.

 

[Scarlett81]

Well I didn't read all the posts-so maybe I'm repeating something, but a little emphasis doesn't hurt...<img src="i/expressions/face-icon-small-smile.gif" border="0">

Firstly-as Liz said, I would reccomend talking to a counselor or therapist-if you go to a CF center and there is a social worker there-they are great!!! It is a resource that I think everyone with CF should take advantage of. If we need a cavity filled we go to the dentist;if we break our arm we go to a physical therapist-why don't more people maintain their emotion needs as well-if they need it? So-don't be afraid to use that-I started 2 years ago and it has postively affected my life in SO many ways!!! Physically too.

Second-You mentioned concerns about IVs, PICC lines-well it is not true neccesarily that eventually all your veins will be "used up". I have been getting PICC lines for 14 years-on average 1 a year-and Yes, I've gone through difficult insertions, but there are things they can do. And if your team hasn't been using those methods to insert PICC lines you should look somewhere else. A PICC line insertion is stressful, but it should be close to pain free now-not like the old days. Also-regualr weight lifting will help keep your veins big and healthy. Before IV insertion or blood work I drink about 4 glasses of water-it helps dialate veins too. I've found that keeping your veins from "going" depends very much on your CF team and how they insert PICCs.

Thirdly-(part A)-Just b/c you now need IV meds every 2 years or whatever doesn't mean you are going downhill. Everybody fluctuates, goes through lung ups and downs. I held high PFTs (65s) for years, and suddenly went down to 50s for a 6 months-now I'm up to 75s. So I wouldn't worry about that. (part B)-Tune ups in my opinion are a good thing. I usually do one before winter starts. Winter is hard on me-so I do 2 wks of IVs in October. It helps me get through the winter sick free. And remember-if you do a tune up while you are healthier-you'll feel better while you're on the ivs, less "sick" feeling. It will interrupt your life less. I also used to think 'Oh man, I'm getting a tune up-that interrupts my year long streak without IVs..." But actually it's not an exacerbation-it's preventing an exacerbation! So though I've been on Ivs 2 times this past year-I haven't actually been sick with an exacerbation for 2 years.

 

[Diane]

I have had diabetes for 26 years now ( i got it when i was 15 ) and at first i was thinking i would NEVER be able to cope with it. Anything new happening to our bodies that isnt a good positive change is scary, till we get all the facts and learn all we can about it. I am scared of needles and cant even watch someone else get one but yet i can give myself my shots in my stomach area without a hitch. I guess when your life depends on something you can always find a way to manage thru it. Giving yourself shots gets easier as time goes on.

 

[anonymous]

Thank you all very much for your support and advice. I really appreciate hearing about your experiences. I am not as apprehensive about getting the tune-up as I was. I hope that the shock of the pre-diabetes and the yearly tune-ups will fade. I hope it will get easier to cope with. I am really grateful that you are all so willing to share your experiences. The more info I get, the better I will be able to deal with everything. Thanks so much.

If anyone has more info to share.. PLEASE do!

 

[chantelfox]

Oops.. That was me above. I forgot to sign in before posting.

 

[Huw]

Hi Chantel,<br>
<br>
I probably had IVs for the first time when I was about 14, and
looking at my arm right now I can count 12 scars so, at 25 now, I
guess I've had them yearly ever since. The first course was in
order to clear a persistent lung infection, but pretty much ever
since they've generally just been to flush me out: I usually have
them to clear out any bugs I've picked up during the winter so
refer to it as 'spring cleaning' and it does always seem to keep me
healthy for a good while afterwards. It's at the stage now where I
can go to my doctor and say "Hey, I've got 6 weeks coming up
where I'm not going to be so busy: maybe we can fit in some
IVs?" to which he'll agree without feeling it necessary to run
tests or anything: we are both in agreement that prevention is
better than cure.<br>
<br>
It's not my place to say whether you should or shouldn't take up
IVs - although I think Liz makes a good point about building up
resistance, so that's worth asking - but I would stress the fact
that cf is a serious condition, so it's worth wondering how
possible it is for your doctors to be overly cautious.<br>
<br>
Finally, I think it's a very positive step you've made in coming to
a forum if you feel you don't have anyone you feel you can discuss
these issues with. Everyone needs support, and I hope you find some
comfort here.<br>
<br>
Best,<br>
<br>
Huw 

 

[chantelfox]

"

<div class="messagetext_container">Wow so I started reading your
post and thought I wrote it, it was that similar to my life.<br>
<br>
I am also teaching next year for the first time (I hope you don't
live in Chicago because if you do I am going to be VERY jealous
that you have a job!) and my doctor wants to do the same thing and
have me go get IVs so that I won't have to get them during the
year.<br>
<br>
I have only had IVs three times (i am 24 also) and HATE it because
I also feel I am getting worse and will not get a port so i want to
keep my veins.<br>
<br>
The deal is this, I worked as an associate teacher in 2nd grade
last year and it was HARD. i got sick all the time and am now the
worst i have been in a year. at the same time i made a promise with
my dr that if i work really hard this month and raise my PFTs then
i won't get IVS.<br>
<br>
So i say if your PFTS are down then try and raise them and then you
won't have to get IVs. Other than that, mabye you could convince
your dr to get home IVs? There is going to be no way that you will
be able to get them during the school year.<br>
<br>
I do anything to avoid them, and although it is not the smartest I
also don't know anyone with CF and don't deal with it well.<br>
<br>
Don't know if that helps, but I am here if you need me<img src=
"i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
Sue 24w/CF"</div>

<br>
<br>
<br>
Hi Sue, thanks for the info. How long were you an associate
teacher? Is that the same thing as student teaching (1 semester)?
Or were you with the kids all year?<br>
<br>
Also, that's kinda funny that you said that about raising your
PFT's. The funny thing is that my PFT were up! Ha.. I don't know
why he told me that I should do it on the visit that my PFT's are
up. I dunno.  Do you know your baseline number or where your
at for your PFT's? Maybe I am not where the norm is or maybe he
wants me to get where i was 2 years ago.<br>
<br>
Thanks for all your help Sue! It is sooo good to know that I'm not
the only person going into the teaching profession with CF. People
look at me like I'm CRAZY. Especially my family. I have been having
serious doubts about teaching, because people keep filling my head
with doubt and worry about becoming sick all the time. Part of
the reason I chose teaching is because I worked with young
kids ages 1-12 in a recreation setting for 3 1/2 years before I
even graduated and had no problem staying healthy. How do you do?
Any suggestions? What grade are you teaching next year?<br>
<br>
<br>

 

[Scarlett81]

I think dealing with the tune ups and IVs never gets easy. Maybe I'm stubborn-I still wake up almost every day and dread doing my therapy! I hate it!

But with ivs-you just do it. Like showering every day-you just do it. I think after time, you get used to it in the sense that the fear is gone, you know what to expect. But I still dread each time, I hate waking up to do my IVs at 2 AM, I hate it-it interrupts my life.

So you may never get used to it, but you'll just do it-and enjoy the time in between each IV!

 

[anonymous]

Yeah, I guess so. I am just not used to it and I am pretty stubborn so I don't actually want to get used to IV's. I know what you mean about the therapies/treatments. I hate them so much, still to this day. The only way to make it even a little tolerable is having this computer in front of me to take my mind off of it. The first thing I'm going to do if they ever cure this thing, is take a looong vacation and prance around the airports doing the "I have no meds or 40 pound therapy machine" dance. That is my dream. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[chantelfox]

ooops... dang! That was me again above, I have to start remembering
to sign in!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Not sure if anyone mentioned this or not. If you are boarderline diabetic exercise will keep you off insulin if you are under two hundred. Exercise every day and it will greatly help you.

How about doing more Chest PT and perhaps making an appointment to see your doctor and see if your lungs are cleared up.

That is what I did for years and kept my kidneys in good shape. I would only use IV treatments when I really needed them and did three therapies per day to stay clear.

After many years of diligent health routines, I needed new lungs but in between the years, I had a tune up when the doctors said I have to do it. Always listen to your doctors. If you want to avoid future IV therapy then after your tune up do your therapy more often. If you are doing them twice per day increase them to three times per day.

I worked with children in school too. I would tell them to wash their hands in the back of the room and give them a lesson in good hygiene. Give them points for good behaviour. Bring in purell and put it on all the desks

Good luck
Risa

 

[thelizardqueen]

Exercise is great for keeping my sugars levels normal. If my sugars are running high and insulin isn't cutting it, I go work out and I'm back to baseline. I'm sometimes amazed at just how low my sugars can get from working out - mind you, they're not low enough to worry, but low enough to keep me happy.