Tune ups

[thelizardqueen]

Can someone explain to me what a "tune up" or "clean out" is? I've only been on IV once in hospital, and that was 10 years ago. What exactly qualifies you to need a tune up? Should I be going in for these? Or are they only for if you have more then mild lung damage? It seems to me that a lof of people on here go in for them, and I'm wondering if I may need these to keep my CF in my lungs from getting worse or not? Do I only need these tune ups if my lungs are somewhat bad?

 

[thelizardqueen]

Can someone explain to me what a "tune up" or "clean out" is? I've only been on IV once in hospital, and that was 10 years ago. What exactly qualifies you to need a tune up? Should I be going in for these? Or are they only for if you have more then mild lung damage? It seems to me that a lof of people on here go in for them, and I'm wondering if I may need these to keep my CF in my lungs from getting worse or not? Do I only need these tune ups if my lungs are somewhat bad?

 

[JazzysMom]

I tune up is basically just an admission into the hospital doing the usual CPT & IV's. The idea of them is to avoid the CFer from getting to the point of lung damage (more than necessary anyway) & truly "sick" stage since it takes a lot to bounce back. Years ago I would go in before I even had "symptoms" of things getting out of control. After 2 times of that & still ending up in the hospital I decided I would only go in when symptoms were starting & I didnt seem to handle it with oral antibiotics etc at home. The only real difference I can think of with a tune up is that the meds used might not be as many or as strong tho for me since I was not a "regular" patient in the hospital, I always got the same stuff until last year!

 

[JazzysMom]

I tune up is basically just an admission into the hospital doing the usual CPT & IV's. The idea of them is to avoid the CFer from getting to the point of lung damage (more than necessary anyway) & truly "sick" stage since it takes a lot to bounce back. Years ago I would go in before I even had "symptoms" of things getting out of control. After 2 times of that & still ending up in the hospital I decided I would only go in when symptoms were starting & I didnt seem to handle it with oral antibiotics etc at home. The only real difference I can think of with a tune up is that the meds used might not be as many or as strong tho for me since I was not a "regular" patient in the hospital, I always got the same stuff until last year!

 

[Chad]

Yeah basically a tune-up is when you dont feel deathly ill, just something that is constantly bugging you or lingering, and say one or two courses of antibiotics doesnt really help. Most of my admissions are tune ups. Seeing as Cipro doesnt work as well for me as it use to.

 

[Chad]

Yeah basically a tune-up is when you dont feel deathly ill, just something that is constantly bugging you or lingering, and say one or two courses of antibiotics doesnt really help. Most of my admissions are tune ups. Seeing as Cipro doesnt work as well for me as it use to.

 

[CowTown]

Whenever I'm admitted (once every 1 to 2 years) it's referred to as a tune-up. It's always a 2 week boring ordeal with IVs and CPTs, as Melissa mentioned. I usually have to go in for this when I'm not feeling like my usual, or can't get back up to my base on my own. It hasn't been a reflection of whether you're super sick ot not, it's been told to me that's it's just good for maintenance. If you don't need IVs, then you're doing well and that's a great thing. I think it's an analogy to a car getting tuned up, everything gets checked over, change the oil, so everything is working as well as possible.

 

[CowTown]

Whenever I'm admitted (once every 1 to 2 years) it's referred to as a tune-up. It's always a 2 week boring ordeal with IVs and CPTs, as Melissa mentioned. I usually have to go in for this when I'm not feeling like my usual, or can't get back up to my base on my own. It hasn't been a reflection of whether you're super sick ot not, it's been told to me that's it's just good for maintenance. If you don't need IVs, then you're doing well and that's a great thing. I think it's an analogy to a car getting tuned up, everything gets checked over, change the oil, so everything is working as well as possible.

 

[thelizardqueen]

So basically what you're saying is that tune ups are not required unless oral or inhaled antibiotics aren't working for you? Because as of now both work for me, and I've only been on IV once 10 years ago. I want to make sure that tuneups are not something I need to start to make sure I stay healthy, and that they are only needed once oral or inhaled doesn't work for you.

 

[thelizardqueen]

So basically what you're saying is that tune ups are not required unless oral or inhaled antibiotics aren't working for you? Because as of now both work for me, and I've only been on IV once 10 years ago. I want to make sure that tuneups are not something I need to start to make sure I stay healthy, and that they are only needed once oral or inhaled doesn't work for you.

 

[anonymous]

I use to wait til I was super sick and no oral antibiotics were working before I went in the hospital for a tune up. The last few years I have been going in at the end of the year regardless as to how I feel and gear up for the winter months. I have found this to be the way to go for me. I do not get sick in the winter now, I just get my normal run down at the end of the year. Granted, once in awhile I do get a bug between tune ups but have been able to handle it with oral drugs. I find it is sooooooo much easier to go in for the tune up when I am not super sick. It is easier to get back to my baseline. I also find by the end of the year I am soooo ready for the tune up. A tune up for me is IV drugs and postrual drainage. Although, I usually get admitted for a few days with my picc line and get all the blood work, x-rays etc and then I go home on my picc line and finish out the 2 week course. I CAN NOT STAND THE HOSPITAL , so the sooner I can get out the better. I like my own food, bed, and husband!!!! And since I am not super sick I can take care of myself and do my IV on my own and my vest 4 times a day. I have had to stay in the hospital cause I was just too sick to go home and take care of myself ie. make my lunch. Husband makes dinner and everything else.

Hope this helps

Jennifer 34 yrs old with CF and CFRD

 

[anonymous]

I use to wait til I was super sick and no oral antibiotics were working before I went in the hospital for a tune up. The last few years I have been going in at the end of the year regardless as to how I feel and gear up for the winter months. I have found this to be the way to go for me. I do not get sick in the winter now, I just get my normal run down at the end of the year. Granted, once in awhile I do get a bug between tune ups but have been able to handle it with oral drugs. I find it is sooooooo much easier to go in for the tune up when I am not super sick. It is easier to get back to my baseline. I also find by the end of the year I am soooo ready for the tune up. A tune up for me is IV drugs and postrual drainage. Although, I usually get admitted for a few days with my picc line and get all the blood work, x-rays etc and then I go home on my picc line and finish out the 2 week course. I CAN NOT STAND THE HOSPITAL , so the sooner I can get out the better. I like my own food, bed, and husband!!!! And since I am not super sick I can take care of myself and do my IV on my own and my vest 4 times a day. I have had to stay in the hospital cause I was just too sick to go home and take care of myself ie. make my lunch. Husband makes dinner and everything else.

Hope this helps

Jennifer 34 yrs old with CF and CFRD

 

[anonymous]

Liz,

You haven't been on IV's in 10 years!!!!!!!!!!!!!!!!!!!What are you doing right?

Anyway, I get iv's about 2 times a yr. But, I've found that getting a 2 week 'tune up' before I'm really sick, and just when I feel a little low is better. I avoid major hospitalizations this way. And, usually, I get my IV put in, and go home the same day on IV's with a nurse 1nce a week at my house. I just like being in my bed, with my pillow, and my own food.

Doctors may feel differently about this, but mine prefers me to go home if I can, to avoid further germs.

Also, I get tuneups if I am planning a big trip, or if there's a major event in my life. For example, my brother got married this summer, and I had the shower at my home, (50 people, catering, ect..) and I planned on having a tune up right after all the hoopla b/c I knew I'd be worn out.

Christian

 

[anonymous]

Liz,

You haven't been on IV's in 10 years!!!!!!!!!!!!!!!!!!!What are you doing right?

Anyway, I get iv's about 2 times a yr. But, I've found that getting a 2 week 'tune up' before I'm really sick, and just when I feel a little low is better. I avoid major hospitalizations this way. And, usually, I get my IV put in, and go home the same day on IV's with a nurse 1nce a week at my house. I just like being in my bed, with my pillow, and my own food.

Doctors may feel differently about this, but mine prefers me to go home if I can, to avoid further germs.

Also, I get tuneups if I am planning a big trip, or if there's a major event in my life. For example, my brother got married this summer, and I had the shower at my home, (50 people, catering, ect..) and I planned on having a tune up right after all the hoopla b/c I knew I'd be worn out.

Christian

 

[anonymous]

Hi Liz,

Hey, congrats on not being admitted into the hospital for 10 years. I haven't been in for 2 years. I don't believe in tune-ups and here is why. When I was in my teens, my doctors instructed me to get tune-ups twice a year. I listened to them because their supposed to know what they are talking about right??? Well after 8 years of listening to them, the pseudo on my lungs started to get resistant to Tobramyacin, Tetracyline, Cirpo IV, and a few others. Also my ex-doctors were drug-happy. Have a cold--take Cipro or Levaquin. In no time at all, a simple "tune-up" went from 2 weeks to 4 weeks. Sometimes the "tune-up" lasted even 6 weeks. Simple oral medications started to take 4 weeks to even start working. Also as a woman issue, I started to get constant yeast infections and thrush. Monistat stopped working. Diflucan (sorry if spelled wrong) stopped working. My GYN doctors had to prescribe something else like Monistat but that could only been given with scripts. Finally, I had enough!!!

I thought "I have mild CF." "Are all these 'tune-ups' really that much needed?" I decided to switch doctors and only resort to admissions when no other means was possible. For each cold, I stuck it out. Sure I had a fever of 102, threw up mucus once a day, and lost weight but I was determined not to use drugs. Usually after 3-4 weeks of misery, I got over it. Slowly I started to see the yeast infections clear up. I started to have more energy. I even gained weight. Sure there times when medications are needed. I fully support that. However, there is a difference between needed and being needy.

Now, I culture pseudo and yeast in my lungs. However if I get sick now, I still have resistance to many of the medications that were used when I was in my teens. I'm now 24. I only have a few options of meds to choose from if I get real sick. THAT IS SCARY!!! What if I need a medication someday and it won't work because I still have a resistance to it. THEN WHAT DO I DO!!!

Liz, I think what you are doing is working. Don't change anything. If I could turn back the clock, I would want to have the same track record as you. And I think that's it's great that you don't take "tune-ups" LIGHTLY.

Jennifer 24w/CF

 

[anonymous]

Hi Liz,

Hey, congrats on not being admitted into the hospital for 10 years. I haven't been in for 2 years. I don't believe in tune-ups and here is why. When I was in my teens, my doctors instructed me to get tune-ups twice a year. I listened to them because their supposed to know what they are talking about right??? Well after 8 years of listening to them, the pseudo on my lungs started to get resistant to Tobramyacin, Tetracyline, Cirpo IV, and a few others. Also my ex-doctors were drug-happy. Have a cold--take Cipro or Levaquin. In no time at all, a simple "tune-up" went from 2 weeks to 4 weeks. Sometimes the "tune-up" lasted even 6 weeks. Simple oral medications started to take 4 weeks to even start working. Also as a woman issue, I started to get constant yeast infections and thrush. Monistat stopped working. Diflucan (sorry if spelled wrong) stopped working. My GYN doctors had to prescribe something else like Monistat but that could only been given with scripts. Finally, I had enough!!!

I thought "I have mild CF." "Are all these 'tune-ups' really that much needed?" I decided to switch doctors and only resort to admissions when no other means was possible. For each cold, I stuck it out. Sure I had a fever of 102, threw up mucus once a day, and lost weight but I was determined not to use drugs. Usually after 3-4 weeks of misery, I got over it. Slowly I started to see the yeast infections clear up. I started to have more energy. I even gained weight. Sure there times when medications are needed. I fully support that. However, there is a difference between needed and being needy.

Now, I culture pseudo and yeast in my lungs. However if I get sick now, I still have resistance to many of the medications that were used when I was in my teens. I'm now 24. I only have a few options of meds to choose from if I get real sick. THAT IS SCARY!!! What if I need a medication someday and it won't work because I still have a resistance to it. THEN WHAT DO I DO!!!

Liz, I think what you are doing is working. Don't change anything. If I could turn back the clock, I would want to have the same track record as you. And I think that's it's great that you don't take "tune-ups" LIGHTLY.

Jennifer 24w/CF

 

[Dustin82]

I have the same oppionion as Jennifer does I remember back in my teen years ever summer I would go in because that is what my doc wanted but I now I only go in if my pfts are down and I cant get them back up in a month or so. I remember even with insurance just when we got the last tune-up bill payed off here I am goin back in for another one. And that sucks when u feel great and still have to go in. But I guess the doc is tryin to make money for his hospital to I dont know.... But I agree with Jennifer there is a difference between needed and being needy. Sometimes u just need to suck it up when u have a little cold and get over it, dont run to the doc for medication. Maybe I just hate doctors so much I dont go unless I have to hehe just my oppionion Dustin 23 CFRD

 

[Dustin82]

I have the same oppionion as Jennifer does I remember back in my teen years ever summer I would go in because that is what my doc wanted but I now I only go in if my pfts are down and I cant get them back up in a month or so. I remember even with insurance just when we got the last tune-up bill payed off here I am goin back in for another one. And that sucks when u feel great and still have to go in. But I guess the doc is tryin to make money for his hospital to I dont know.... But I agree with Jennifer there is a difference between needed and being needy. Sometimes u just need to suck it up when u have a little cold and get over it, dont run to the doc for medication. Maybe I just hate doctors so much I dont go unless I have to hehe just my oppionion Dustin 23 CFRD

 

[anonymous]

a good way to prevent thrush I believe is to use Biotene mouth wash and tooth paste. Go to <a target=new class=ftalternatingbarlinklarge href="http://biotene.com
">http://biotene.com
</a>
AS a transplant patient I never get thrush. I remember in the beginning my tongue would have a white coating and once I got the biotene my tongue is pure red. It works very fast

In the hospital they give you swish and swallow nyastatin. I had a white coating and asked my husband to bring in Biotene and the doctors allowed me to use it instead of swish and swallow and it worked great. They were pretty amazed

IF you ever feel like cotton is in your mouth you should try Biotene or if your tongue gets dry from sleeping with your mouth open

I think it is kind of expensive but I dilute my mouth wash. I use the mouth wash after I take a puff of advair.

This in my book keeps my yeast away
Risa

 

[anonymous]

a good way to prevent thrush I believe is to use Biotene mouth wash and tooth paste. Go to <a target=new class=ftalternatingbarlinklarge href="http://biotene.com
">http://biotene.com
</a>
AS a transplant patient I never get thrush. I remember in the beginning my tongue would have a white coating and once I got the biotene my tongue is pure red. It works very fast

In the hospital they give you swish and swallow nyastatin. I had a white coating and asked my husband to bring in Biotene and the doctors allowed me to use it instead of swish and swallow and it worked great. They were pretty amazed

IF you ever feel like cotton is in your mouth you should try Biotene or if your tongue gets dry from sleeping with your mouth open

I think it is kind of expensive but I dilute my mouth wash. I use the mouth wash after I take a puff of advair.

This in my book keeps my yeast away
Risa