I was in upmc for a month had pnemonia and mucus plugs and my pfts went down by 20% culured mersa and b cepicea amd phsudo had bronc scope and had a bad reaction to it got a fever a high one that couldn't get down for couple days got confused amd really scared but it broke and they got out 2 mucus plugs out I was on fortaz iv and televansin in and another iv I forget the name but was one they always give me I got out bout 4 weeks now getting legs back was hard lost alot of wt and mucle got pft back to base but went for check up pft back down some and having short of breath and streaks of blood in mucus this just started few days after starting inhaled tobi havnt been on it in a long time I usually cycle fortaz and colistine they added the tobi amd I go in for inhaled vanc for the observation to c how I do on it my questiosquestions r after all that time on iv antibiotics can I b getting sick agian so fast and how fast does mucus plugs take to come back and if ur on inhaled vanc had it helped and how is it tolerated and does tobi make u cough blood and make ahort of breath and pfts to go down my base is 58% and was when I left hospital at check up it went down to 51% should I try a oral antibiotics cause after hospital they took me off all maintenance antibiotics before hospital I was on bactrum and azithromisin amd doxy as maintenance im worried that I will have to go bk in so soon after bein in so long and afriad of the mersa this is first time cultruring it amd that it will cause me to have a decline and having to b hospialized more often I was happy to get out wanted to start exercising and maybe try to work couple days a week but not so sure I can or I should now I just started the orkombi yesterday but been on it for long time during study just didnt know what mg I was on that part was blinded but was getting the drug for lomg time I was wanting to get bk to normal or as close as I could and try to go to beach with family and work few days for extra money to do more things for and with family but unsure if ill b able to not sure what to do I wish I knew if I was goin to getsick agian or I habe time to do things with my womderful family after all that time in hospital and work some to help them with money and able to do things with them sorry for long message any help would help me alot thank you all for the help I hope everyone stays and gets healthy thank u
long term hospital stay
- Thread starter cam
- Start date
Cam:
I feel your pain. Over 13 months (2014-2015) I spent 94 days in the hospital. The longest was 39 days, in which I entered at 169 pounds and left at 113 pounds.
I am feeling great now but to speak for myself, yes I expect to be hospitalized again. CF is a mean disease. There will be another infection and a need for IV's.
Hang in, do what your Doctors say and good luck.
Bill
I feel your pain. Over 13 months (2014-2015) I spent 94 days in the hospital. The longest was 39 days, in which I entered at 169 pounds and left at 113 pounds.
I am feeling great now but to speak for myself, yes I expect to be hospitalized again. CF is a mean disease. There will be another infection and a need for IV's.
Hang in, do what your Doctors say and good luck.
Bill
Cam, so good to hear from you! I was getting very worried when you didn't check back in for so long! But now we know.....I'm glad to hear they found what needs to be treated. I'm sorry to hear you have three of the heavy duty bugs. My first question for you is whether you have cultured these bugs before or is this the first time? How they are treated is first dependent on whether you just started to culture it or if you've had it before you went into the hospital this time? That would help others tell your their experience with these bugs. I also hope you're going in for your checkups at UPMC now instead of where you were before! Is that possible or are you too far away?
So good to hear from you!
Blessings
So good to hear from you!
Blessings
Simba15
Member
Printer sorry to hear of your woes. I wondered where you had been thinging of you. be well.
Its my first time culturing mersa the other two I have had for long time Im goin to b started on inhaled vanc soon after I go do first dose of it in hospital that doesnt start til nov. At next check up hopin I can stay out of hospital in mean time wondering the experiences with inhaled vanc did it help and tolerated did it help the mersa and is the mers goin to keep giving me problems still not breathing the best and still some blood in mucus just wish I had some time to feel good for awhile thank u for all relpies hope everyone stays healthy
Im getting back my energy and feeling ok just my pfts r down some were 58 now 51 and im feeling ok only thing I can complain about is this wheezing I been having at end of my breath its all the time worse after a treatment does the wheezing something I should ask about or worried about I really would like to get bk to work for a couple days a week im just worried that ill get sick agian real fast and habe to leave agian and I need the money badly I only live on social security disability amd its not much just keeps the lights on basically started the orkombi bout 2weeks ago but had been on the study for long time I dont c any diferemce for better or worse I hope something comes out that really makes a difference I know im on a decline cause of my age and all my bugs I have I just hope something comes amd I need to work to do somethings on my bucket list amd to try to enjoy the time I have left hope everyone is doing well and stays healthy
T
The Dot
Guest
Cam, If you are wheezing after your treatments, you might benefit from an inhaled steroid or steroid/long-acting bronchodilator combo (like QVAR or Advair). The steroid helps to soothe the inflammation in the airways, which can sometimes be worsened by the inhaled mucolytics and antibiotics. Ask your CF doc.