mom2lillian
New member
ok I really could use some input/advice. monday tuesday night I had the worst pleurisy pains I have ever had, it hurt sitting doing shallow breathing and moving was a nightmare, I couldnt lay on my side or it hurt extremely bad, if my husband wasnt home to help me back up after I tried to lay down I am not sure I could have even gotten up (thats how bad it hurt). Today I went jogging in morning and it started back up so I am pretty sure it is not related to my house but to this humid rainy weather we are having and my ABPA. Problem being I am on xolair and that makes it so you cant get an accurate IGE level so they cant tell if my abpa is flairing and technically it shouldnt be able to while I am on xolair but it works so well I dont want to go off of it long enough for my body to excrete it just so they can get an IGE number. I have to read up on this portion of it.
<b>I am looking for other ideas what this may be, what causes pleural pain. </b>I have been on 5 weeks IV's and 3 weeks orals this year. I am pretty sure it is not infection related. My mucous was white after last round and still is very light and sparse for me. When I am not having pleural pains my peak flow looks good. Today all during work although there was not sever pain my rbeathing was constricted and I was sore and couldnt take a deep breathe wihotut mild/moderate discomfort but NOTHIGN like what I had mon/tue night. HELP!
Ever since having my daughter and getting compliant+ my health has been great and I have been doing better than I ever have, until feb now I just cant seem to get back on track. You can see my summary of my visits at end of my letter to my CF nurse below.
My nurse called back, she read doc letter (I expected this), <b>they are reffering me to a larger center (its also only one rated higher in state) that is 1.5hrs away from me (1hr away from my current clinic). </b>I had thought about switching before but decided not to. Anyway I feel like this is a no win situation. If new clnic cant find anything I am SOL, if they can I have to switch and I really dont want to switch and do all extra driving etc as current clinic is 10min from work and well I have a big mistrust of new dr's etc. Nurse says that they are not considering me a hypochondriac its just as far as my doc is concerned with 100% PFT's there is nothing he can think to do, it would be different if I were at 60% etc..... but I am still symptomatic so he feels hes done all he can for me. Thats fine but I am not imagining this stuff, what does it matter what my PFT's are? ANyway I am not sure how I feel about all this and now they cante get me in for 15 weeks, my back is extremely sore after 3 days of this! Then I start thinking I am whimpy suck it up yada yada and I am just not sure what to think/do.
<b>I woudl appreciate any advice.........sorry for not blogging this but I wanted more innput that a blog would get me. </b>
<b>LETTER TO MY CF NURSE:</b>
I do not want to call in to the answering service tonight but Jared is pressing the issue I have held him off by offering to call your house or email you.
Last night and tonight I am having bad pleural pains on both sides, last night the left side was worse, tonight it is the right. Neither day has it been an issue at work, a couple times I felt a little something today when I was walking outside and then briefly afterward but nothing I would consider 'pain'. I do NOT think it is an infection or exacerbation because I have had white sputum almost exclusively since finishing up IV's and just a bit of yellow that is really small quantity and light. I don't think it's a plug or anything like that because it has been both sides and it goes away eventually. Last night it lasted about 4 hours, I took some ibuprofen, and fell asleep eventually and when I got up it was gone. Tonight its was really light and built in intensity for past hour or so---it started very quickly after getting home. I don't think its related to our home as nothing significant has changed. I am thinking the only thing left is the humidity as we just have our windows open whereas work and car are both AC. I have never had issues like this before except when I had an ABPA flair but it was never this consistent or painful. I have to breathe extremely shallow and cant move much without it searing down my side, lifting or moving my arms around also exacerbate it, I am in bed on my laptop now.
I had an ABPA level drawn about a month ago, it was 850 in talking with my allergist and Dr. H I found out that the test is no longer valid since xolair binds with the IGE and prevents it from interaction with the body but also ties it up in the system taking longer to excrete and since the test is only able to detect total IGE here in the US it is impossible to tell what portion of that IGE is affecting me and what is bound. What I am wondering is if it is worth it to draw another level now and if it is significantly higher than 850 it would seem to point towards an exacerbation of the ABPA (which I hope not because I was really loving this xolair).
Anyway I must admit I am a bit hesitant to come in. Last time I was in dr.h feared I may be depressed because I mentioned how tired I was on zosyn, he said zosyn is not associated with fatigue (contrary to what you said a few patients had told you). I told him I had talked with Jared about it last week because I have been tired and wondering if it was zosyn and I did have higher anxiety but I did not feel I was depressed and if after a week or two off IV's I was not feeling back myself I would contact my counselor I have used in the past. He recommended that I see my GP as well to do a general checkup thyroid et all just to make sure there was nothing else we were missing. Sounded like a good approach and I was not offended by that portion at all. However, he added that patients who do as well as me normally feel very well and aren't in the office all the time and I had been in for a number of weeks now(see below according to my records) and it was possible that some CF patients get depressed about their health which then gets in a cyclical situation making them feel worse, making health worse and they cant get better (while I agree with that being a possibility and told him so) I added that I did not feel right after the first round IV's so I was trying to be proactive in alerting them something was wrong and less than a week after I spoke to him I coughed up blood and I didn't think I could 'depress' myself into coughing up blood which he said was true indicated infection but then back to the depression topic so I was a bit miffed.
I am just feeling that if I come BACK in with pleurisy it will be the same thing as last time with Dr.H thinking I am depressed. Also, I have not made it to my GP, I was planning to call this week, not that I think a GP topic could cause sever pleurisy but still.
Trip 1-came in with bad cold best PFT's ever, declined orals offered by dr. m
Trip 2-could tell cold was getting best me I chose oral over IV's
Trip 3-post oral check not feeling well went to IV's
Trip 4-1week IV check gained 5% that I had lost back (caught cold and stomach flu since starting IV's attributed low % gain to that)
Trip 5-2 week IV check down 2% from prior week changed to merropenem from ceftazidine as achromobacter resistant to tobra and ceftaz
Trip 6-3 week IV check numbers looking pretty good but with 20% variability told dr.m I felt infection was gone but something 'stuck' didn't feel right. Was not happy with how he explained it and did not feel he took me any where close to serious passing off my comments in the 'your number looks too good to be anything wrong' but I also thought perhaps it was just that I come off too 'strong' for him and he seems to not to want to talk with me much he did say to continue on HTS 3x day and add more airway and see how I do, I did that
Trip 7-went back in to see dr.H told him same comments from previous week dr.m he took me very serious thorough review, came to conclusion he felt it was latent bronchitis form infection, explained everything, said additional treatments not making me feel 'back to normal' but I was feeling better a bit than previous week. Dr.H asked if I was 'ok' with that and I said sure, I'd buy it. Went home did not feel like myself or like I was rebounding to my 'norm' at all but tried to suck it up and attributed it to having just gotten off a cumulative of 5 weeks abx.
*** coughed up blood over thur-weekend
Trip 8-dr. M checked me out said try week zithromax get an AFB test and see how I feel
Trip 9-still coughing up blood a bit feeling worse dr. H says IV's we try zosyn
Tirp 10-continue zosyn regular check up with dr.m
Trip 11-the conversation above with dr. H regarding depression but I was sure I was better so I didn't care my numbers were still down almost 5% from feb but I feel/felt that it was because I was too fatigued to exercise at a high intensity and I would get it back as soon as I did.
Anyway I am sorry I have written a book but I didn't want to say why I was hesitant to come in without explaining myself. I think I am pretty in tune with my body and I could tell during and after first abx something wasn't feeling up to snuff and it proved right with the bleeding so I don't think I was going overboard by trying to come in twice to explain myself, maybe I was. I am just not sure how much to come in now as I don't want to get shoved into that 'paranoid about everything' patient pigeonhole.
<b>I am looking for other ideas what this may be, what causes pleural pain. </b>I have been on 5 weeks IV's and 3 weeks orals this year. I am pretty sure it is not infection related. My mucous was white after last round and still is very light and sparse for me. When I am not having pleural pains my peak flow looks good. Today all during work although there was not sever pain my rbeathing was constricted and I was sore and couldnt take a deep breathe wihotut mild/moderate discomfort but NOTHIGN like what I had mon/tue night. HELP!
Ever since having my daughter and getting compliant+ my health has been great and I have been doing better than I ever have, until feb now I just cant seem to get back on track. You can see my summary of my visits at end of my letter to my CF nurse below.
My nurse called back, she read doc letter (I expected this), <b>they are reffering me to a larger center (its also only one rated higher in state) that is 1.5hrs away from me (1hr away from my current clinic). </b>I had thought about switching before but decided not to. Anyway I feel like this is a no win situation. If new clnic cant find anything I am SOL, if they can I have to switch and I really dont want to switch and do all extra driving etc as current clinic is 10min from work and well I have a big mistrust of new dr's etc. Nurse says that they are not considering me a hypochondriac its just as far as my doc is concerned with 100% PFT's there is nothing he can think to do, it would be different if I were at 60% etc..... but I am still symptomatic so he feels hes done all he can for me. Thats fine but I am not imagining this stuff, what does it matter what my PFT's are? ANyway I am not sure how I feel about all this and now they cante get me in for 15 weeks, my back is extremely sore after 3 days of this! Then I start thinking I am whimpy suck it up yada yada and I am just not sure what to think/do.
<b>I woudl appreciate any advice.........sorry for not blogging this but I wanted more innput that a blog would get me. </b>
<b>LETTER TO MY CF NURSE:</b>
I do not want to call in to the answering service tonight but Jared is pressing the issue I have held him off by offering to call your house or email you.
Last night and tonight I am having bad pleural pains on both sides, last night the left side was worse, tonight it is the right. Neither day has it been an issue at work, a couple times I felt a little something today when I was walking outside and then briefly afterward but nothing I would consider 'pain'. I do NOT think it is an infection or exacerbation because I have had white sputum almost exclusively since finishing up IV's and just a bit of yellow that is really small quantity and light. I don't think it's a plug or anything like that because it has been both sides and it goes away eventually. Last night it lasted about 4 hours, I took some ibuprofen, and fell asleep eventually and when I got up it was gone. Tonight its was really light and built in intensity for past hour or so---it started very quickly after getting home. I don't think its related to our home as nothing significant has changed. I am thinking the only thing left is the humidity as we just have our windows open whereas work and car are both AC. I have never had issues like this before except when I had an ABPA flair but it was never this consistent or painful. I have to breathe extremely shallow and cant move much without it searing down my side, lifting or moving my arms around also exacerbate it, I am in bed on my laptop now.
I had an ABPA level drawn about a month ago, it was 850 in talking with my allergist and Dr. H I found out that the test is no longer valid since xolair binds with the IGE and prevents it from interaction with the body but also ties it up in the system taking longer to excrete and since the test is only able to detect total IGE here in the US it is impossible to tell what portion of that IGE is affecting me and what is bound. What I am wondering is if it is worth it to draw another level now and if it is significantly higher than 850 it would seem to point towards an exacerbation of the ABPA (which I hope not because I was really loving this xolair).
Anyway I must admit I am a bit hesitant to come in. Last time I was in dr.h feared I may be depressed because I mentioned how tired I was on zosyn, he said zosyn is not associated with fatigue (contrary to what you said a few patients had told you). I told him I had talked with Jared about it last week because I have been tired and wondering if it was zosyn and I did have higher anxiety but I did not feel I was depressed and if after a week or two off IV's I was not feeling back myself I would contact my counselor I have used in the past. He recommended that I see my GP as well to do a general checkup thyroid et all just to make sure there was nothing else we were missing. Sounded like a good approach and I was not offended by that portion at all. However, he added that patients who do as well as me normally feel very well and aren't in the office all the time and I had been in for a number of weeks now(see below according to my records) and it was possible that some CF patients get depressed about their health which then gets in a cyclical situation making them feel worse, making health worse and they cant get better (while I agree with that being a possibility and told him so) I added that I did not feel right after the first round IV's so I was trying to be proactive in alerting them something was wrong and less than a week after I spoke to him I coughed up blood and I didn't think I could 'depress' myself into coughing up blood which he said was true indicated infection but then back to the depression topic so I was a bit miffed.
I am just feeling that if I come BACK in with pleurisy it will be the same thing as last time with Dr.H thinking I am depressed. Also, I have not made it to my GP, I was planning to call this week, not that I think a GP topic could cause sever pleurisy but still.
Trip 1-came in with bad cold best PFT's ever, declined orals offered by dr. m
Trip 2-could tell cold was getting best me I chose oral over IV's
Trip 3-post oral check not feeling well went to IV's
Trip 4-1week IV check gained 5% that I had lost back (caught cold and stomach flu since starting IV's attributed low % gain to that)
Trip 5-2 week IV check down 2% from prior week changed to merropenem from ceftazidine as achromobacter resistant to tobra and ceftaz
Trip 6-3 week IV check numbers looking pretty good but with 20% variability told dr.m I felt infection was gone but something 'stuck' didn't feel right. Was not happy with how he explained it and did not feel he took me any where close to serious passing off my comments in the 'your number looks too good to be anything wrong' but I also thought perhaps it was just that I come off too 'strong' for him and he seems to not to want to talk with me much he did say to continue on HTS 3x day and add more airway and see how I do, I did that
Trip 7-went back in to see dr.H told him same comments from previous week dr.m he took me very serious thorough review, came to conclusion he felt it was latent bronchitis form infection, explained everything, said additional treatments not making me feel 'back to normal' but I was feeling better a bit than previous week. Dr.H asked if I was 'ok' with that and I said sure, I'd buy it. Went home did not feel like myself or like I was rebounding to my 'norm' at all but tried to suck it up and attributed it to having just gotten off a cumulative of 5 weeks abx.
*** coughed up blood over thur-weekend
Trip 8-dr. M checked me out said try week zithromax get an AFB test and see how I feel
Trip 9-still coughing up blood a bit feeling worse dr. H says IV's we try zosyn
Tirp 10-continue zosyn regular check up with dr.m
Trip 11-the conversation above with dr. H regarding depression but I was sure I was better so I didn't care my numbers were still down almost 5% from feb but I feel/felt that it was because I was too fatigued to exercise at a high intensity and I would get it back as soon as I did.
Anyway I am sorry I have written a book but I didn't want to say why I was hesitant to come in without explaining myself. I think I am pretty in tune with my body and I could tell during and after first abx something wasn't feeling up to snuff and it proved right with the bleeding so I don't think I was going overboard by trying to come in twice to explain myself, maybe I was. I am just not sure how much to come in now as I don't want to get shoved into that 'paranoid about everything' patient pigeonhole.