hospitalized

[kmhbeauty]

Hello, sat night I started coughing up blood after working a 7 hour shift on my feet. Earlier that day, I jogged a mile. I have been feeling fine besides the blood. The blood on sat night was a lot. Enough to fill two hands full. It stopped and I was fine sunday. Monday night I coughed up a smaller amount and Tuesday morning, another small amount. Decided to go to the emergency room by my house. Where my CF doctor is over an hour away. When I came into the emergency room, I was fine. They did the cat scan and I coughed up blood right after. They admitted me and said my potassium levels were extremely low. They said my potassium levels were 2.2. They also said my magnesium levels were low but not as bad as the potassium. My blood pressure was a little high and I believe they said my sodium level was high. They are now monitoring my heart because the potassium was so low. The levels are back up now. The doctor seems confused though. I probably should of made the drive to where my CF doctor is but too late now. I have only been on iv antibiotics 3 times now. This is my third time. I just coughed up blood again which has me concerned with what the heck is going on. I do have MAC and that started about 2 years ago. The doctor does seem confused on why my electrolytes where so off but I felt completely fine. Any thoughts would be helpful. I do not have the best knowledge about CF and what is going on with my CF. I have coughed up blood a good amount of times before but never during the daytime. It was always at night. When it started in the day, I felt like it was getting worse. (BLOW)

 

[Aboveallislove]

I'm so sorry. I don't have any input on the medical issues, but can they transfer you by ambulance to the CF hospital? Or can you be discharged and get a ride there? I think that would be your best bet? If not, at a minimum, are they talking to your CF doctor? Hang in there.

 

[sroeseler]

I'm surprised they even saw you, we've always been immediately transferred to cf center, we don't even bother going anywhere else anymore, everyone is too afraid to treat.... you can check yourself out anytime you like, just head to cf center

 

[kmhbeauty]

They are working with my doctor. Its a big hospital, they just don't have CF center. I guess they saw some heart failure on the ray. All the tests they have done have come out fine though. They are going to do a ultrasound next and release me if they goes well. I didn't know heart problems could occur with CF. Another thing I have to watch out for. No more coffee it is! I believe next time I will make the drive. It just makes it hard on family to get there.

 

[welshwitch]

Have you tried the ADEK vitamins from CF Services? They have a HUGE amount of Vitamin K (a problem for CFers…we're low in Vitamin K, which creates a problem with blood clotting). You can order them online from CF Services. Also, I'd make the drive to your CF doctor -- worth the inconvenience! Sorry you're having issues! Hope you feel better.

 

[4hats]

Also, ask your cf doctor about mephyton. It is prescription strength vitamin k. I've used it when I've had bleeding episodes. Get better soon.

 

[sroeseler]

Were an hour from the cf center too, it can be a pain but being with a complete staff that specializes in all aspects of cf is well worth it plus being in the center on the pulm floor they are also consciously trying to keep you from picking up other bugs a normal hospital doesnt typically even think about it because other patients don't pick things up like cf'rs do

 

[kmhbeauty]

Yes, Ive been taking the ADEKs and they work really well. My skin also cleared up from them which is an added bonus. They only thing I don't like is the sugar. Its a little too sweet for me on a daily basis but that's not a deal breaker for me.

 

[welshwitch]

Hi, just checking in for an update. Are you still in the hospital? Did you ever get info on what's going on?

 

[kmhbeauty]

Just got out this evening. Felling a lot better and so far no blood tonight! Yay! My only worry now is that when I came to the ER, my potassium was at 2.2. I guess that is life threatening. I am getting some muscle cramps now in my calfs. I bought some over the counter potassium, coconut water, and bananas. The doctor also said I have a little bit of a leaky valve that came up on the echo for my heart. He said nothing to worry about now but I should have another echo in a year. They put me on cipro for 2 weeks too. No picc line which I am super happy about. Im just a little worried about the low potassium levels because they told me they don't have a reason why. Does low potassium have anything to do with CF?

 

[kmhbeauty]

I take back the no blood. Just coughed up some now. Im so frustrated, its been a week now of coughing up blood. Something has to be super wrong!

 

[keefer11]

First - I agree with 4hats, get a prescription of Mephyton, it really helps.

My doctor tells me when I cough up blood its either a blood clot or a sign of an increase in infection. Usually for me, it's the latter. Are you coughing up more sputum overall? Or is it just blood?

Did they do any cultures on your sputum? Is Cipro a drug that you aren't resistant to?

Yes, low potassium can occur with CF because we have a harder time absorbing nutrients. I'm really surprised they weren't concerned about the low potassium? Did they give your potassium through an IV and check it again before you left? I might contact your CF doctor about this.

 

[kmhbeauty]

At first it was just pure blood. The last 3 days it has been bright red blood with mucus. They did do a culture and the doc said it was staph. He said it was "the good staph" and that ment no picc line. I asked him if he saw my MAC in the culture and he said "no we didn't test for that." This confused me and I guess Im not good at asking the right questions. Im not resistant to Cipro, I don't believe so. Im going to go get the medical records on a cd and bring them to my CF doctor. Im still very confused on whats going on.

 

[becabee]

Didn't they give you potassium pills to take? That is very dangerous to be so low. I strongly recommend you drive to your CF hospital and don't mess around with these symptoms. Obviously the ER doctors don't know enough about the dangers of CF. Please don't hesitate.

 

[mamaScarlett]

I agree with all PP's that you should go to your Cf center hospital and get a thorough checkup in patient. I know, its an inconvenience, its annoying, etc...but it is your health. Its so worth it. You don't play around with heart issues, potassium issues..
I feel for you..hang in there. They will help you. You'll bounce back.