medical advice from the

TonyaH · Mar 4, 2008

Hi guys,

I'm posting in the adults section hoping to gain some insight from some experienced CFers.

For the past three days Andrew has been coughing up pink sputum with his first few huffs during cpt. And, every day he is complaining more of pain in his upper chest when he huffs. He says a stabbing pain, so I'm thinking maybe he has a couple more plugs. But the thing that is really bothering me is the sound of his cough during his huffing. It is extremely crackly. He is not wheezing or crackling during normal breathing or coughing, but when we are huffing he is crackly, and kind of gets "caught" in his exhale, unable to inhale. It's scaring him. Tonight was the most blood, crackling, and painful huffing he has had so I thought is was worth asking everyone here if they have experienced it. I'm going to email our doc in the morning to let her know what is going on. We are supposed to see her in two more weeks for more pfts because his numbers were down 25 points two weeks ago. So we will be going to clinic soon, but wanted some thoughts on your experiences so I could ask her some educated questions.

Thanks!

Wednesday 1:30pm
I spoke with our doctor. She wanted us admitted today, but we decided to see how tonight goes with bleeding. I'm taking him in for pfts first thing tomorrow morning. We will most likely be admitted then. (And this gives me the night to get the house in order, finish all of the laundry, get everything in order for my daughter...I HATE leaving her!) Thanks for your help.

NoExcuses · Mar 4, 2008

Hey Tonya,

I'm a bit concerned that his PFT's were down 25 points two weeks ago and nothing was done..... That should be IV antibiotics right away.

In terms of the blood, it can be several things. But most common for me is when I have an active infection, the bacteria eat away at my airways and cause the bleeding. Not always the case with everyone, but that's common with CFers.

PFT's down 25 points combined with blood makes an even grater sense of urgency for antibiotics in my opinion. I'd call the doc right away. Good luck!

MCGrad2006 · Mar 4, 2008

I agree with Amy. I have only experienced blood once, but from all that I read on here...along with your son's lowered PFT's he should be on some sort of abx. If my PFT's went down that much I would be thrown in house right away. I dont mean to scare you, but you should def call the doc soon.

Good luck and keep us posted.

TonyaH · Mar 4, 2008

Thanks for the quick response!

I think the reason she is waiting is because his pfts are still very high. His low two weeks ago was an FEV1 of 96...down from 121 in November. Of 8 tries, though, his FEV1s were all in the 80s...except the one 96 we got. I'm getting worried because he seems to be getting worse energy wise, as well as shortness of breath, which is not common for him.

TonyaH · Mar 4, 2008

Oh, and he is on an oral..she put him on clindamycin two weeks ago and wants to reassess with new pfts in two more weeks. But, the clindamycin does not seem to be doing the trick. I'm all for calling the doctor, and will tomorrow, but hearing your stories help me understand. You are both saying that your bleeding is caused from infection, which kind of rules out allergies for Andrew.

TonyaH · Mar 4, 2008

Oh, and he is on an oral..she put him on clindamycin two weeks ago and wants to reassess with new pfts in two more weeks. But, the clindamycin does not seem to be doing the trick. I'm all for calling the doctor, and will tomorrow, but hearing your stories help me understand. You are both saying that your bleeding is caused from infection, which kind of rules out allergies for Andrew.

TonyaH · Mar 4, 2008

Oh, and he is on an oral..she put him on clindamycin two weeks ago and wants to reassess with new pfts in two more weeks. But, the clindamycin does not seem to be doing the trick. I'm all for calling the doctor, and will tomorrow, but hearing your stories help me understand. You are both saying that your bleeding is caused from infection, which kind of rules out allergies for Andrew.

TonyaH · Mar 4, 2008

Oh, and he is on an oral..she put him on clindamycin two weeks ago and wants to reassess with new pfts in two more weeks. But, the clindamycin does not seem to be doing the trick. I'm all for calling the doctor, and will tomorrow, but hearing your stories help me understand. You are both saying that your bleeding is caused from infection, which kind of rules out allergies for Andrew.

TonyaH · Mar 4, 2008

Oh, and he is on an oral..she put him on clindamycin two weeks ago and wants to reassess with new pfts in two more weeks. But, the clindamycin does not seem to be doing the trick. I'm all for calling the doctor, and will tomorrow, but hearing your stories help me understand. You are both saying that your bleeding is caused from infection, which kind of rules out allergies for Andrew.

bittyhorse23 · Mar 4, 2008