Update on Mark's bleeding

J

julie

New member
I called the CF clinic this AM and requested the pulmonary doc. on call get ahold of me. He called back about 1 hr later. I told him what was going on and he said we could come to the U.W. or since we were quite a bit away, we could go to our local ER to get a chest X ray and sputum culture. He said he would only want us to come to the U.W. if mark was symptomatic. But Mark hasn't really been symptomatic. No more coughing than usual, no fevers....

So we went to the same ER we were at 2 weeks ago. They compared his X rays and this time looked MUCH better than the one two weeks ago. The doc did see a little pocket of infultrate, but said it looked like the same infultrate that was there last time, only this time it was a little bit bigger. And that it wasn't blood....

He said based on the fact that Mark isn't symptomatic, isn't coughing anymore than normal, isn't running a fever, and based on the x ray, he's pretty sure it's just some blood vessles (as most of you have said). They are doing a culture with sensitivity.

I'll be calling the CF clinic tomorrow to make sure they don't want mark in sooner than the 19th, and to see what they say about taking off a few days on the vest and pulmozyme.

Thanks everyone for the responses and the support. I know it's somewhat minor in the scheme of things, but I'm scared and I'm pretty sure Mark is too.
 
J

julie

New member
I called the CF clinic this AM and requested the pulmonary doc. on call get ahold of me. He called back about 1 hr later. I told him what was going on and he said we could come to the U.W. or since we were quite a bit away, we could go to our local ER to get a chest X ray and sputum culture. He said he would only want us to come to the U.W. if mark was symptomatic. But Mark hasn't really been symptomatic. No more coughing than usual, no fevers....

So we went to the same ER we were at 2 weeks ago. They compared his X rays and this time looked MUCH better than the one two weeks ago. The doc did see a little pocket of infultrate, but said it looked like the same infultrate that was there last time, only this time it was a little bit bigger. And that it wasn't blood....

He said based on the fact that Mark isn't symptomatic, isn't coughing anymore than normal, isn't running a fever, and based on the x ray, he's pretty sure it's just some blood vessles (as most of you have said). They are doing a culture with sensitivity.

I'll be calling the CF clinic tomorrow to make sure they don't want mark in sooner than the 19th, and to see what they say about taking off a few days on the vest and pulmozyme.

Thanks everyone for the responses and the support. I know it's somewhat minor in the scheme of things, but I'm scared and I'm pretty sure Mark is too.
 
J

julie

New member
I called the CF clinic this AM and requested the pulmonary doc. on call get ahold of me. He called back about 1 hr later. I told him what was going on and he said we could come to the U.W. or since we were quite a bit away, we could go to our local ER to get a chest X ray and sputum culture. He said he would only want us to come to the U.W. if mark was symptomatic. But Mark hasn't really been symptomatic. No more coughing than usual, no fevers....

So we went to the same ER we were at 2 weeks ago. They compared his X rays and this time looked MUCH better than the one two weeks ago. The doc did see a little pocket of infultrate, but said it looked like the same infultrate that was there last time, only this time it was a little bit bigger. And that it wasn't blood....

He said based on the fact that Mark isn't symptomatic, isn't coughing anymore than normal, isn't running a fever, and based on the x ray, he's pretty sure it's just some blood vessles (as most of you have said). They are doing a culture with sensitivity.

I'll be calling the CF clinic tomorrow to make sure they don't want mark in sooner than the 19th, and to see what they say about taking off a few days on the vest and pulmozyme.

Thanks everyone for the responses and the support. I know it's somewhat minor in the scheme of things, but I'm scared and I'm pretty sure Mark is too.
 
L

lightNlife

New member
Hey Julie, I think things will go well. It's always a little freaky to see the blood, but it's been my experience that getting it under control isn't that bad. I experienced bleeding with pulmozyme too a few years back. It turned out that since I didn't have much gunk in my lungs at that time (I had more digestive issues than pulmo.), the chemical in the drug that works on the mucus by slicing through the bacterial cells that are growing in it, was actually slicing through some healthy lung tissue, and that's what caused the bleeding. Once we stopped pulmozyme, it cleared up within 2 days.
 
L

lightNlife

New member
Hey Julie, I think things will go well. It's always a little freaky to see the blood, but it's been my experience that getting it under control isn't that bad. I experienced bleeding with pulmozyme too a few years back. It turned out that since I didn't have much gunk in my lungs at that time (I had more digestive issues than pulmo.), the chemical in the drug that works on the mucus by slicing through the bacterial cells that are growing in it, was actually slicing through some healthy lung tissue, and that's what caused the bleeding. Once we stopped pulmozyme, it cleared up within 2 days.
 
L

lightNlife

New member
Hey Julie, I think things will go well. It's always a little freaky to see the blood, but it's been my experience that getting it under control isn't that bad. I experienced bleeding with pulmozyme too a few years back. It turned out that since I didn't have much gunk in my lungs at that time (I had more digestive issues than pulmo.), the chemical in the drug that works on the mucus by slicing through the bacterial cells that are growing in it, was actually slicing through some healthy lung tissue, and that's what caused the bleeding. Once we stopped pulmozyme, it cleared up within 2 days.
 
L

luke

Guest
Julie,

I don't know the size of the hospital but I can tell you that if it isn't a center used to dealing with CF you might as well throw that culture in the trash. Non CF labs aren't used to dealing with CF bugs so they normally use the wrong medium, wrong process and the wrong incubation times. Even at my CF clinic they send mine to a specialty lab once a year to make sure they are getting everything identified correctly. If the culture comes back positive at all I would get another one done. As for not being asymptomatic...I always thought coughing up blood was a pretty big symptom(sometimes doctors baffle me). Anyway..I will keep Mark in my prayers. Keep us updated, did they check his PT to make sure he is clotting right?


take care
 
L

luke

Guest
Julie,

I don't know the size of the hospital but I can tell you that if it isn't a center used to dealing with CF you might as well throw that culture in the trash. Non CF labs aren't used to dealing with CF bugs so they normally use the wrong medium, wrong process and the wrong incubation times. Even at my CF clinic they send mine to a specialty lab once a year to make sure they are getting everything identified correctly. If the culture comes back positive at all I would get another one done. As for not being asymptomatic...I always thought coughing up blood was a pretty big symptom(sometimes doctors baffle me). Anyway..I will keep Mark in my prayers. Keep us updated, did they check his PT to make sure he is clotting right?


take care
 
L

luke

Guest
Julie,

I don't know the size of the hospital but I can tell you that if it isn't a center used to dealing with CF you might as well throw that culture in the trash. Non CF labs aren't used to dealing with CF bugs so they normally use the wrong medium, wrong process and the wrong incubation times. Even at my CF clinic they send mine to a specialty lab once a year to make sure they are getting everything identified correctly. If the culture comes back positive at all I would get another one done. As for not being asymptomatic...I always thought coughing up blood was a pretty big symptom(sometimes doctors baffle me). Anyway..I will keep Mark in my prayers. Keep us updated, did they check his PT to make sure he is clotting right?


take care
 
E

eli

New member
Hey Julie, i don't know what to say.

Just hang in there, and i hope things get sorted out for you guy's.

I'll be thinking of you both, hope Mark get's better real soon.

Take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

eli

New member
Hey Julie, i don't know what to say.

Just hang in there, and i hope things get sorted out for you guy's.

I'll be thinking of you both, hope Mark get's better real soon.

Take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

eli

New member
Hey Julie, i don't know what to say.

Just hang in there, and i hope things get sorted out for you guy's.

I'll be thinking of you both, hope Mark get's better real soon.

Take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

julie

New member
Luke, it's a hole in the wall local hospital.... Nice doctor though. They just want a "general" culture since he'll be seen at the clinic in 2 weeks. I called the nurse at the CF clinic this AM to let her know what was up and see if we needed to come in any sooner but she has yet to return my call, it's been 4 hours.............

No, we didn't check the clotting factor, I forgot to ask. I'll do that FOR SURE at his appt.

Thanks lightNlife, he's off the pulmozyme for a few days and we'll see if that helps. He's been using it consistently for a year+ though, do you think it would still do that?

Thanks eli, How are you?
 
J

julie

New member
Luke, it's a hole in the wall local hospital.... Nice doctor though. They just want a "general" culture since he'll be seen at the clinic in 2 weeks. I called the nurse at the CF clinic this AM to let her know what was up and see if we needed to come in any sooner but she has yet to return my call, it's been 4 hours.............

No, we didn't check the clotting factor, I forgot to ask. I'll do that FOR SURE at his appt.

Thanks lightNlife, he's off the pulmozyme for a few days and we'll see if that helps. He's been using it consistently for a year+ though, do you think it would still do that?

Thanks eli, How are you?
 
J

julie

New member
Luke, it's a hole in the wall local hospital.... Nice doctor though. They just want a "general" culture since he'll be seen at the clinic in 2 weeks. I called the nurse at the CF clinic this AM to let her know what was up and see if we needed to come in any sooner but she has yet to return my call, it's been 4 hours.............

No, we didn't check the clotting factor, I forgot to ask. I'll do that FOR SURE at his appt.

Thanks lightNlife, he's off the pulmozyme for a few days and we'll see if that helps. He's been using it consistently for a year+ though, do you think it would still do that?

Thanks eli, How are you?
 
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