Im headed back to hospital in Pittsburgh after just getting out two months ago my lung function dropped 15% and really hard to breathe I hope they get me fixed this time I think this is the hardest year i have had in my life Im losing hope in getting any better its just been one decline after the next and now hard to walk to bathroom without being short of breath im just not ready for this im sorry bein so negative but I just cant see a way for it to get better I need to accept it I guess but its hard to know where it eventually goes thank u for this forum to let me vent and to everyone with cf make sure u make most of happy times sorry so depressing I hope there will b cure in future so no one has to go threw this
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
back to upmc
- Thread starter cam
- Start date
D
DebA
Guest
Please don't apologize for sharing your feelings. I'm praying for you with all my heart, as I pray for my own daughter. We carry this together, and Jesus hears our cry.
Cam - I'm sorry to hear you're headed back. But I wonder if this isn't simply related to starting Orkambi. Your symptoms sound quite typical for many of those who start Orkambi especially when their lung function is on the lower end to begin. I'm hoping that's the case and they get you through this quickly. Let us know how you are. You know we're here.
Blessings.
Blessings.
K
kgfrompa
Guest
I am so sorry Cam I will pray that the doctors in Shadyside heal you I am so sorry you are out of breath!I know when i get sick and it lingers i hope and pray you will get strong and well asap
Dear Cam .I know buddy how it feels .I have been on bed for 3 years..I jst know one thing we lose only when we accept we are loosing.. When i am sick i jst think what can be more worst..nothing can be more worse than this..
Have you tried changing drugs ..i was relieved after i stoped taking tobi( and statred oral levofloxcin) and got iron injected..and increased protein intake
Ask your doc if Is it necessary to stay at hospital , cant you get iv inj at home
god bless you
Have you tried changing drugs ..i was relieved after i stoped taking tobi( and statred oral levofloxcin) and got iron injected..and increased protein intake
Ask your doc if Is it necessary to stay at hospital , cant you get iv inj at home
god bless you
Got picc line in today on meropinum and 24 hour zozyen right now but sure those will change once culure comes back never had 24hr zozyen before and I dont know how to spell theses things lol had xray amd moee mucus pluging agian my head has been killing me hope so much its not sinuses and all I want to do is sleep cant keep eyes open I might try to take ivs at home but after I get little better my lungs and breathing is really bad right now worse its ever been I hope it gets better I have no energy to even eati hope doctors have a good game plan thank you so much for listening and responding to me
I don't know what to say but doesn't look good for me lung function dropped again down to barley anything im so scared of so muc the usual things whats next what will it b like or this is it sorry so depressing this probably last post when something happens ill have mom let u guys know thank you for everything remember this is my jurny I have hope that there will b more and better treatments thank u and keep fighting
I'm sorry you're having such a hard time Cam. Have they done any other tests like a bronchoscopy or CT scan or anything to try and figure out why your lung function seems to be dropping so fast? It seems weird that they wouldn't do anything other than IV antibiotics when clearly those don't seem to be helping much. Have they mentioned transplant at all?
perhaps there is a social worker or chaplain or someone like that you can talk to about your fears while you're in the hospital. Sometimes just talking it out with someone other than your family or friends can help because they have some distance from your personal life so their advice can often be more objective.
Hope you feel better soon!
perhaps there is a social worker or chaplain or someone like that you can talk to about your fears while you're in the hospital. Sometimes just talking it out with someone other than your family or friends can help because they have some distance from your personal life so their advice can often be more objective.
Hope you feel better soon!
TreasureGoddess
Member
Cam, hoping you are doing better. We are all praying for you too. My son is on zocyn quite often and that's a powerful antibiotic. I'm hoping it will give you some relief. Please always feel comfortable expressing your fears and feelings here, we absolutely are supportive and understand that you are needing to share. Hoping the meds plus being in the hospital and getting help with respiratory treatments more often will see your lung functions start to climb. Hang in there and when you feel up to it let us know how you are doing. No pressure! Rest and heal!