Recently out of hospital trying to return to somewhat normal life

[chelsearose0112]

Hello!
I am a 21 year old female with FEV 508 homogeneous who attends the University of Tampa and hope to graduate spring '15. originally from Delaware I moved there and began having increases exacerbations requiring more hard core oral antibiotic, and then after a year I was put on a picc for 2 weeks. That kept me over a good about of time until I was hospitalized again about 8 months later in October for two weeks, and then yet again on Picc IVs in the summer of that next year...

The issue arouse was about December of 13 I had an exacerbation and was treated IV for two weeks but even I could feel something was still lurking in there.. and I was right... this continued into me having not one but two hospitalizations of the same outcome where i was not back on my feet and I still could tell within my body, something was going wrong. (and royally screwed up any attempts at salvaging that college semester)

FINALLY we came to a different center up north where my family are and I was in the hospital 16 days, made worlds difference from the amount I was coughing up, lung function went rom around 30%-50%, CT scan even framatically improved, and i didn't constantly feel horrible all the time.. but now at home I still am not coughing up the same amount I was at all, more energy, just more myself... but I have this HUGE issue of when I do go try physical activity to work my lungs (even just walking or really any task) i get so winded that physically cannot. I have the motivation to continue but it seems my body physically wont let me. i also have this new strange (to me) cough where it will sit there all day (i can feel it) not do much) and then have a coughing fit to get the littlest bit up, and it feels like its coming from the upper lungs and just wares me out. essentially is this normal?????? how do i overcome this hurdle of my body rejecting me trying to help.

I want to keep inclining so much and I want this last long stay to be the last for a while so has anyone had ay similsr post hospital situations and have some advice or anything???

Thanks everyone(L)(L)(L)

 

[Oboe]

Are you on any every-other-month outpatient antibiotics like cayston or tobi? I had a similar experience with my last hospitalization where it felt like I was better after getting out, but like I still wasn't over what I had. Wasn't breathing too well, still ran some temperatures at night, then a couple weeks later I started my cayston and felt back to normal pretty quickly and have been for a few months. I think for me it was just a matter of what antibiotics were being used. Maybe it was something similar for you.

As for exercise tolerance, I always have to start small. Usually after a hospitalization I am so out of shape just from sitting in a hospital bed for two weeks that I have to work my way back up just to getting basic housework done without issue. Keep moving, but don't push yourself too hard. Also, I'm not sure how it is up in Delaware, but I'm sure you've noticed Florida is really hot and humid. That moisture will cause what congestion you do have to be way more noticeable. So if you are exercising, try doing so in the evening or the morning when it's more mild out. I live up in Tallahassee, so I know that humidity all too well.

 

[MichaelL]

I'm so sorry for what you're going through. I got really sick last year and ended up in the hospital for six weeks. My lung function had dropped from around 50% to 30%. I left the hospital at 37%. When I first got out, I was surprised at how much effort it took to walk and I found myself easily winded. I went for short walks every day -- it was discouraging how short a distance I could go and how quickly I needed to rest. However, I kept up with the walks. In addition, I got an exercise bike for home. I tried to ride it every day and work up the length of time I spent on it. It took me two and a half months of this exercise before I was ready to go back to the gym. It took longer for my shortness of breath to return to normal. I did eventually get back to 50% lung function, but it took a while.

I know it's discouraging, but I had to push myself a little each day. I had friends and family to encourage me along.

I hope you can stay out the hospital and focus on getting back to better health.

 

[bookperson]

Have you had a fungitell assay done? It's a blood test to determine if you are harboring any fungal infections. I would imagine in a place like Florida where it is humid and warm all the time there is a lot of mold.