not doin well and doctors dont know y

[cam]

I feel tightness in front of my chest almost all day long and short of breath so went to doctors my pfts where as high as they ever been 59% not high as they should but high for my base is 51% amd he said I sounded good all that so dont know y the pain tightness and shortness of breath all the time anyone else feel like this or know what this is the other symptoms I been having r losing wt and no energy thank u for ur guys help I did start fortaz bout a month ago think its been helping but didn't know if it had anything to do with it other wise same routine nothing different thank for help and for the ones who pray pray for my cousin who has cf she is in hospital not doing well at all she has alot more than cf that is has cancer and ms so please keep her in prayers thank u much for all of ur help hope everyone gets healthy and stays healthy

 

[believingjesus]

Cam: if u don't mind me asking - what do u culture that u r on Fortaz? Is it inhaled? I heard inhaled Fortaz was really supposed to work. I'm sorry you haven't been feeling well for awhile now. I will pray for you and your cousin.

 

[imported_Momto2]

Hmm, About 18 months ago I started something similar. Tons of inflammation in my lungs, SOB, tightness, fatigue. IV antibiotics did NOT help at all. Turned out I was diabetic. You can have a relatively normal A1C and have enough blood sugar issues to cause lung problems. I know I did, and lost a good 15% FEV1 before it was figured out. Might want to get it checked if you cant find any other explanation.

 

[cam]

Thank u all for replys and I have cultured pudo and cepicia b dont know y he put me on fortaz but seems to b lighting my mucus thank u all agian

 

[believingjesus]

Hi Cam! I couldn't understand if you said the Fortaz was helping your mucus or hurting you? I really would like to know as I heard Fortaz was supposed to really help. Is it inhaled? Please keep us updated. I will continue to pray for you. The Fortaz is supposed to help the cepacia. Do you think it is?

Also: Have you been checked for diabetes like ImportedMom suggested? Please let me know if you think the Fortaz is helping or hurting you.

 

[cam]

It seemed to help thin my mucus and make it a lighter color im not doin good right now got up from sleeping and coughed up some blood so im worried bout that it seems to b happing more and more frequent so dont know what im goin to do yet not much really either c if it stops or go in hospital for ivs or get oral to c if it helps it scares me makes me really depressed I just hate this illness please someone find a cure I hate living like this im sorry got to ranting fortaz is good but stinks and is very sticky so might have to use 2 nebulizes to get it done one might get cloged up amd I dont think it will do to much to cepicea that bug is a sob to keep under control not many antibiotics can mostly iv antibiotics will help the best to knock it bsck down

 

[believingjesus]

Cam: do you by any chance go to Pittsburgh to be seen for clinic? Do you feel they are helping you? Do you mix your Fortaz with sterile water or saline? I hope you stopped coughing blood. I feel for you and I am sorry you have this extra battle in your life. I will keep you in my prayers. I am trying to learn to focus on the present time and take life a day at a time as worrying about tomorrow does no good when we don't know what is going to come tomorrow and it rarely happens the way we thought. I know everyone on here cares a lot about you and what you are going through. Please know we are sending lots of love your way.

 

[cam]

With fortaz its saline and with colistin its sterile water just coughed up little blood it seems to have stopped hopefully I go to Pittsburgh and they're good and they actually answer the phone when u need something not sure what im goin to do bout this time with the blood wasn't much so ill probably watch it then if comes agian call them tommorrow I think if I didnt have these bugs like cepecia and phudo id b doin alot better hipe they find something soon to cure all this thanks for replies and help

 

[randford]

Cam, I'm sure glad you have some folks here who are helping and I do hope the doctors can resolve it. I don't have an immediate solution but just know that your are in our thoughts so please let us know how you are doing.

 

[believingjesus]

Been thinking about you Cam. I hope everything went okay today and no bleeding. I believe you are in good hands in Pittsburgh. I am keeping you in my prayers and you can message me whenever.

 

[cam]

Thank u blood stopped for now but always comes back for some reason every few weeks I just really hope my numbers havnt went down need to find out reason I keep bleeding and fix it fast a cure would b nice to

 

[jshet]

Hi cam. So happy the blood has stopped. That must be so frightening. I hope they soon find the reason for the change in health. I agree with believingjesus. You are in good hands in pittsburgh. My son goes to the cf clinic there at Children's Hospital. He will be tranfering to the adult care side probably in 3 years. His cf doc speaks so highly of the doctors in adult care.
hang in there. I will say a prayer for answers and a quick recovery for you. Take care

 

[randford]

CAM, I hope you are having a better day today. Hang in there. We hope that the folks in Pittsburg will fix you right up and get you in better shape. We're pulling for you so just know that we care and are concerned. Get well soon!

 

[believingjesus]

Hi Cam! I'm very glad the blood stopped and I hope it stays gone. My son bled once about a year ago but the doctor was not worried about it at that time either. I read on here that many people have blood in their sputum. I know it always scares them too. Nobody ever really has an answer except to call the doctor. I am sure your doctors in Pittsburgh are staying on top of it and would do everything they know of. If they think taking extra Vitamin K would help then I would certainly do that. Also Hammerpocket suggested that maybe it could be one of your medicines and that Cayston made him have blood-streaked mucus. If you take Cayston that might be worth mentioning to your doctors and finding out if they still want you on it or if there is an alternative. I know CF always gives things to worry about, and it never ends, but maybe you can try what I am trying and that is to take it one day at a time and only worry about what you can do in this day and be thankful and happy for this day even if it brings you crap that nobody should have to go through. You need to keep pushing forward and keep doing all you can in this day but be happy in this day too and find other things to be thankful for. One is that your lung function is still pretty good and you are on disability so that must help to not have that worry on your shoulders and that you are able to get your medicines. Another is that you are seen in Pittsburgh and they are specialists and excellent at what they do and have saved many lives.

You need to keep pushing forward and fighting it in any way you can and keep living. My son does this and I honestly don't know how he does but he does. He gets disappointed and disgusted too and has bad days too but somehow he always can manage. He must get that from his dad as it didn't come from me. I hope you don't have this worry of bleeding and that it has stopped for good but if it does come back then follow what the doctors say and take it a time and a time - like I am trying. I am always here to try to help you if you want or need a friend. I have been remembering you in my prayers.

 

[cam]

Im doin ok but still not were I should b thak u so much for replies and kind words im goin bk to Pittsburgh soon if not better thank u again

 

[jaimers]

Believingjesus, I think sometimes if all of the responses so far have given relevant, helpful information there isn't always anything that needs to be added to a thread. I read threads about stuff that I do not currently deal with (like lung bleeds) and so my name would show up as having viewed the thread but I have absolutely zero helpful information for Cam that would be different than what's already been said. Someone only needs to hear "go see your doctor" so many times and so if the only information I can provide would duplicate what someone else has said, it's unlikely that I will post it. The sentiment you express is good and was discussed at length on your other thread about it and I definitely agree we all need to support each other. However, viewing a post and not commenting doesn't automatically mean people don't care or are keeping valuable information to themselves. It may simply mean that for that particular post there isn't anything else to add that hasn't already been said.
I don't say this to disparage you because I do think your thoughts are good and you're a great contributor to this site and I'm thankful you're here.