coughing up blood help

[cam]

I coughed up blood last night not to much but enough and front of chest is hurting blood now comes and goes today i just got out of hospital from clean out bout a month ago should i go back or try to do oral stuff I'm pretty scared all veins r gone and it kills me when they try a millon tis and i don't have port usually get picc but takes few days I'm Afraid thatim at the point were i need one always thought that's when to start worring bout not getting any better

 

[cam]

I'm really scared that I'm on the decline i wanted more time I'm sure they r a lot worse people and i want everyone to get better sorry I'm rambling I'm just afriad of death

 

[jaimers]

Cam a little bit of blood can happen sometimes. It can be scary when you see it though for sure. I would contact your doctor and let them know. Mine always have me stop some of my meds like pulmozyme for a couple days when i've coughed up blood. Definitely worth letting them know.

My veins are really small and like to roll a lot so IVs were always a bad experience for me. When i started getting PICC lines i had to have the IR department put them in--the regular bedside PICC team couldn't get them in me anymore because of scar tissue in my veins. I finally was told I would have to get a port. honestly it's so much better than PICC lines. I get IVs 2-3 times a year and the Port just makes it so much easier. talk to your doctor about it. there are different locations where they can put one in. Most common seems to be right under your clavicle so it can stick out from your chest a little but it's not bad.

Don't worry about rambling. we all go through those moments of fear when something new or unusual happens like coughing up blood for the first time. It's totally normal to feel that way. This forum is a great place to get advice and just vent if you need to! Hope you feel better soon.

 

[cam]

thank you

Cam a little bit of blood can happen sometimes. It can be scary when you see it though for sure. I would contact your doctor and let them know. Mine always have me stop some of my meds like pulmozyme for a couple days when i've coughed up blood. Definitely worth letting them know.

My veins are really small and like to roll a lot so IVs were always a bad experience for me. When i started getting PICC lines i had to have the IR department put them in--the regular bedside PICC team couldn't get them in me anymore because of scar tissue in my veins. I finally was told I would have to get a port. honestly it's so much better than PICC lines. I get IVs 2-3 times a year and the Port just makes it so much easier. talk to your doctor about it. there are different locations where they can put one in. Most common seems to be right under your clavicle so it can stick out from your chest a little but it's not bad.

Don't worry about rambling. we all go through those moments of fear when something new or unusual happens like coughing up blood for the first time. It's totally normal to feel that way. This forum is a great place to get advice and just vent if you need to! Hope you feel better soon.

Thank you so much makes me feel little better now not all blood but mostly blood in sputum and a lot of grumbling and weez at end of breath and at beginning and some pain it front of chest and they want me to go in hospital what would u do i don't feel ruun down just scared of my breathing and the blood and did the port hurt when u got it thank u so much for helping I'm just sad that i have been on the decline for sometime now thank u again

 

[laneyb]

Hi Cam, try not to worry so much. I know it's hard not to. This is likely to be an infection that hadn't totally cleared after your last treatment. It doesn't mean it's a decline.
I had a rough time 5 years ago with similar symptoms. Icoughed up blood did IIVs but infection hadn't cleared but because I'd done IVs I presumed I should be better even though I should have listened to my body! I was still chesty and after a while blood again! Think it happened to me 4 times!! Not knowing exactly why it reoccurred is hard!
I was scared too didn't know what was happening. I did IVs again and again ... I did get better it was a phase. Hang in there this will pass you will get better. Likely to be infection that just hasn't totally cleared.

 

[TreasureGoddess]

Cam, hugs from KC! The blood is so frightening, even though a lot of CF'ers experience it and talk about it, it's still scary when it happens to you. We always have IR put in my son's picc lines. They either put it in under laughing gas or with a very mild sedation. It's made all the difference, as there's often scarred parts of the veins causing partial blocks when they put the line in. I'd look into a port, but probably they won't do it for this immediate hospitalization. I'd say it's best to go in and see if you can get feeling better, rather than keep trying different oral meds. Nip it in the bud. You'll also probably stop the pulmozyme for a few days until the lungs heal a bit. Absolutely ask about having the PICC line put in by radiology rather than a couple of nurses by the side of the bed. SO much easier and better too. best of luck!

 

[cam]

thank you everyone

Cam, hugs from KC! The blood is so frightening, even though a lot of CF'ers experience it and talk about it, it's still scary when it happens to you. We always have IR put in my son's picc lines. They either put it in under laughing gas or with a very mild sedation. It's made all the difference, as there's often scarred parts of the veins causing partial blocks when they put the line in. I'd look into a port, but probably they won't do it for this immediate hospitalization. I'd say it's best to go in and see if you can get feeling better, rather than keep trying different oral meds. Nip it in the bud. You'll also probably stop the pulmozyme for a few days until the lungs heal a bit. Absolutely ask about having the PICC line put in by radiology rather than a couple of nurses by the side of the bed. SO much easier and better too. best of luck!

Thanks everyone for advice and wishes i guess goin in really don't want to but not getting better i hope it goes smooth and nothing else is wrong or goes wrong i had a pulmonary embolisim a few yrs ago hope that's not it i hope hospital goes smooth and i don't pick up anymore bugs there I'm goin to wvu hospital hope everyone gets better and stays that way thanks again let u guys know how it goes has to b better than sinus surgery

 

[jaimers]

Hey Cam. Like others mentioned it may just be that the infection didn't clear up all the way while you were doing IVs. That has happened to me before. Definitely frustrating! You know your body better than anyone and it sounds like you're not feeling up to par. I think it's worth following the advice of your doctors even if that means going back in the hospital again so soon after you got out.
Talk to your team about a port. They sedated me for the procedure itself when I got mine so I don't remember any of the actual procedure itself. Afterwards the incision on my chest hurt but the worst of it only lasted a few days. It was sore for a few weeks and if I hit it accidentally for about a month after it would hurt some. I've had it for about 6.5 years now and it's definitely been worth it! If you search the forums for ports there are lots of discussions about them that might be able to provide more info

We all go through these periods, it seems, where it's one thing after another after another! Can certainly be scary and make you question if you'll ever feel better. Something that helped me a lot was going to see a counselor. There was a thread started recently about this. CF is a lot to deal with and it helped me to talk about it with someone that wasn't my family or friends. Something that could be helpful to look into! Check with your clinic social worker if you're not sure where to start that search.

 

[cam]

thank you

Hey Cam. Like others mentioned it may just be that the infection didn't clear up all the way while you were doing IVs. That has happened to me before. Definitely frustrating! You know your body better than anyone and it sounds like you're not feeling up to par. I think it's worth following the advice of your doctors even if that means going back in the hospital again so soon after you got out.
Talk to your team about a port. They sedated me for the procedure itself when I got mine so I don't remember any of the actual procedure itself. Afterwards the incision on my chest hurt but the worst of it only lasted a few days. It was sore for a few weeks and if I hit it accidentally for about a month after it would hurt some. I've had it for about 6.5 years now and it's definitely been worth it! If you search the forums for ports there are
lots of discussions about them that might be able to provide more info

We all go through these periods, it seems, where it's one thing after another after another! Can certainly be scary and make you question if you'll ever feel better. Something that helped me a lot was going to see a counselor. There was a thread started recently about this. CF is a lot to deal with and it helped me to talk about it with someone that wasn't my family or friends. Something that could be helpful to look into! Check with your clinic social worker if you're not sure where to start that search.

thank u much for the help andi was wondering if u guys think it might b a pulmonary embolism i had one befor kind feels like this but last one put me in icu i passed out and woke up there i been coughing up blood and front chest pains on both sides of very top of chest. i really hope its not but how do i get them to check for one i asked and all they say is its probably not one that makes me mad when they won't even check or it and by the way I'm new poster on here been watching for long time though i a male I'm 34yrs puedemotis i can't spell and pft fev1 is around 56 done last month and has been goin down fast and I'm scared my mutation is d508 i have another one but not sure think its the double 508 which i heard is worst. but I'm tring to keep hope the major things. iworry bout is my lungs and relationships should i i go with my love of my life that knows nothing of cf or i go with ex that is good with helping me with everything but not my soul mate i need to make a choice and make a life out of it cause i don't want to b alone thanks again for all help and sorry for rabling i hope everyone will get better and we will get cured every soon thank you all

 

[cam]

Also i have had a bad weez almost gurgeling sound in middle of chest when i blow out all of my air i can really feel it gutgeling in there sorry thought to add that with all my coughing up blood and cheat pain thanks

 

[jaimers]

Hey Cam,
I've never had a pulmonary embolism but if this feels like similar symptoms to what you had last time i think you definitely need to push to have your doctors look at it.
Double delta is the most common but not necessarily the worst mutation combination. It tends to vary from person to person as do all mutation combinations.

i don't have much advice in terms of your relationship question but 2 things came to mind. If the girl you say it your soul mate doesn't know about CF and you want to be with her you need to tell her and be real when it comes to explaining CF and all that comes with it. If you don't tell her and then decide to go with your ex because she already knows then 1) you haven't let soul mate girl decide for herself because you assumed you knew what she was thinking and made the decision for her. You have to give her a chance to decide for herself and if you don't tell her about CF you're not sharing all of your life with her and it'll end up coming out anyway but probably in a bad way since you would have been hiding it. and 2) if you choose your ex you have to consider if she wants to take on CF (which she may, and that's awesome of her) but are you going to end up feeling resentment and bitterness because you're thinking "what if i had just ended up with my soulmate and not my ex, things would be better/different/whatever." be fair to her and if you choose her then you need to be all in and not do it out of a fear of loneliness. trying to build a relationship off of that would never lead to longevity because it's selfish and relationships have to be a two way street to work and last.

I've seen stories on here where partners/spouses/significant others left because they couldn't deal with CF. sometimes that happens and of course it would hurt and be hard but some people just can't handle it and that's ok. hurtful, yes, but better than being with someone that doesn't want to be with you. you'll never know if you don't try with her. good luck!

 

[musclemania70]

You need to call your doctor now if you haven't already. They will tell you how to proceed. Sounds like you need to go back in the hosp.

 

[cam]

thank u

Hey Cam,
I've never had a pulmonary embolism but if this feels like similar symptoms to what you had last time i think you definitely need to push to have your doctors look at it.
Double delta is the most common but not necessarily the worst mutation combination. It tends to vary from person to person as do all mutation combinations.

i don't have much advice in terms of your relationship question but 2 things came to mind. If the girl you say it your soul mate doesn't know about CF and you want to be with her you need to tell her and be real when it comes to explaining CF and all that comes with it. If you don't tell her and then decide to go with your ex because she already knows then 1) you haven't let soul mate girl decide for herself because you assumed you knew what she was thinking and made the decision for her. You have to give her a chance to decide for herself and if you don't tell her about CF you're not sharing all of your life with her and it'll end up coming out anyway but probably in a bad way since you would have been hiding it. and 2) if you choose your ex you have to consider if she wants to take on CF (which she may, and that's awesome of her) but are you going to end up feeling resentment and bitterness because you're thinking "what if i had just ended up with my soulmate and not my ex, things would be better/different/whatever." be fair to her and if you choose her then you need to be all in and not do it out of a fear of loneliness. trying to build a relationship off of that would never lead to longevity because it's selfish and relationships have to be a two way street to work and last.

I've seen stories on here where partners/spouses/significant others left because they couldn't deal with CF. sometimes that happens and of course it would hurt and be hard but some people just can't handle it and that's ok. hurtful, yes, but better than being with someone that doesn't want to be with you. you'll never know if you don't try with her. good luck!

Thanks for help the soul mate knows my cf and everything but im scared that it will b too much for her and i just want her happy she is great i wish and i bet a lot of other people want just to b healthy would make it a lot easier thanks everyone for kind words and help

 

[Angelo]

Every CF warrior needs to know about this whole food supplement. It is called Cyruta Plus. Made by Standard Process. Sold by some chiropractors. Call the co at 800-848-5061 and they will give you list of resellers in or near your zip code. No neg side effects. It's the only I use for bleeding lungs and nose bleeds. Have not had a problem in years. This stuff heals fragile blood vessels. I will do massive amounts of this stuff before I ever let them cauterize anything in my lungs. Last thing I need is more damage to lung tissue. The reseller can help you with dosage, but here is what I do for serious bleeding. 10 tablets every hour until the bleeding slows down to a trickle. usually does that in 3 to 4 hours for me. then I take 10 tabs about every 3 to 4 hours for couple days. then 6 tabs 4 times a day for another 3 or 4 days after the bleeding completely stops. I want to make sure I get all the healing and rebuild fragile blood vessels to avoid another mishap.

feel free to msg me or email me if you have any questions. angelo@angelodistefano.com