Need help/Advice Please

[Rickengelage]

Hey guys,

Im 20 years old
Normally have good lungfunction of 90%+

Lately my lungfunction is going up and down alot.
I dont workout as much as i used to cuz i find it hard to find the motivation to keep at it for some reason.
I used to be very persistent with my working out.

Now my lung function dropped about 20-30% in like a month and ahalf
And i dont feel well at all.

Doctors want me to take my medicine steady and workout steady first
( with help from a coach which ill get a month from now, takes kinda long... )
Before they give me extra anti biotics.

Im scared.
And im wondering, can my lungfunction recover? Like is it possible if you have been down in lungfunction for a while?

And what is your advice? I dont feel well and i have no idea how to get out of this. I want my lungfunction back becuz i cant do much like this at all. Its awful.

Hope to hear from anyone.

 

[believingjesus]

Could u up the amount of times u do your treatments? My son does Pulmozyme and alternates Tobi every other month and also does hypertonic saline daily along with his vest. Do u have a vest for treatments? If u do treatments twice a day u could up it to 4 times.? I also got the doctor to prescribe pulmozyme twice daily for my son but he feels it is a pain to do all he has to do and work full-time. Stay encouraged Rick. I understand your worry. U should ask your doctor what they suggest on how to get some of your lung function back. U should also ask about the fortaz that we talked about on a different post awhile back. I would try to get excercise daily in addition to your treatments. I don't know how people get all this done daily but it is soooo important. I am so sorry to u and all the people who deal with CF. It sucks.

 

[jaimers]

A 20-30% drop in 6 weeks and the docs just want you to add in some extra exercise? Have you stopped doing your treatments other than a decrease in exercise? I'm really shocked they didn't at least give you oral antibiotics. If you've completely stopped your treatments or have been really neglectful then you definitely need to get back on those asap and up it to 4 times a day like believingjesus mentioned. If this drop is because you've stopped or cut back on treatments then you'll probably bounce back once you start them again. I wouldn't wait a month to get a coach to start working out. Get out there and run or even just walk but get moving for sure. If it's cold where you are do jumping jacks, squats, push-ups, crunches etc. in your house. Don't continue to wait because you'll just get worse and feel worse.

 

[Rickengelage]

Hey thanks for the quick replies! I appreciate it alot!

Thats a good tip believeinjesus, im going to do pulmozyme twice instead of once a day now.

And yeah Jaimers, thats what they said. Also because im already on anti biotics, pills and inhaling tobi.

But i havent been taking it on point, becuz i traveled a bit.
So they want me to excersise and take the medicines stricktly on point to see if that helps me bounce back up.

Still, its kinda scary to be that low. I never had that before.

I definitly will try my best to keep it up and do it right, and I hope that indeed ill bounce back! I must.

Thanks for replies and happy christmas

 

[donin]

Rickengelage - I am shocked that you were not hospitalized and put on a course of IV antibiotics! That is a dramatic drop and would typically indicate an active infection. My son is 26 and I have seen him bounce back with excellent medication compliance and exercise.

 

[Joe2007]

It's flue season. Could you have caught something while away? You may need to rest and recharge. When I was 20 I used to push myself and not realize I had run myself down until it was too late. Rest and stay disciplined with treatments.

 

[Rickengelage]

Joe2007

Thanks for the reply!

I dont think its a cold.
But the weather for sure doesnt help, I do feel better in warmer seasons and weathers.

I dont know what it is though lately, I suddenly lost alot of motivation to go workout and do my treatments the way I used to.
Maybe cuz I been doing it all my life by now.
Also the fact I know that way way way better medicines are comming our way, ( which is good ) but it discourages me.
I feel like using medicine from the stone age, it frustrates me to not have the new ones yet.

 

[Gammaw]

Rick - how about completely changing your exercise routine to generate interest. I always found routine exercises boring. But.....how about basketball three times a week for an hour or more? Swimming? Join the Y and change it up every month. Are you interested in yoga? Dancing? Taekwando? Running in the park? Mall walking? Find something that's fun....not obligatory. Blessings.

 

[Rickengelage]

Gammaw,

Thanks for the reply!

Hm yeah that is a reallly good tip, it would make it alot easier to sustain the workout/ sport.
I like footbal/ any ball sport.

I like lots of sports.
I used to play many.
But now im in such a bad shape honestly.
I think I need to get to a better shape first to take part in a teamsport. So I will work on that and then find a sport that im interested in good tip! Thanks!

 

[nmw0615]

I played sports from the time I was five until I was 14, when I had to stop playing the sport I love (volleyball) because of my feeding tube. I became horribly out of shape, but recently started swimming. It never really feels like a workout, and it centers me. I strongly think that my swimming is what helped me stay off IV medications for the last 2 and a half months, which is the longest I've gone off IVs since July of 2013.

 

[Gammaw]

Great point nmw - I suspect yoga and swimming may be two of the best ways to build your muscles and stamina up when you're not in shape for more intensive sports. And you don't have to play a sport for an hour to start or even a whole game. If you love football, basketball, whatever... play for as long as you can in your yard or the park - even 5 minutes to start. Ask you're doc what s/he recommends......just get moving!

 

[windex125]

OK I'm gonna be the bad guy here but here goes, you lost modivation - got pissed off with all the work it takes to stay well. It happens. It's very hard to stay committed as a young person believe me I did so little in my 20's I am not sure how I am still here other than the fact I was PS till this year. My lungs hv always been the issue. I have only one functioning lung at this time and my PFT's are abt high 40's I use O2 at night. Had a port put in 10+ yrs ago when I thought I was at my worst and wld not bounce back. But I did. So lets get back in the grove (do we still use that word?) get back into yr routine up yr. oral meds and yr treatments. We all fall off the wagon occasionally, and I am gonna be the first to admit it. It takes a lot of work. But you hv your whole life ahead of you get moving.... Pat-CF/60