Don't what to do..

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giantsfan91

Guest
Hi guys,
I don't post here too often but I check the site daily and find everything you guys say to be valuable so I just want to explain my situation to who ever will listen..
The last year and a half of my life has been extremely difficult health wise for me. I went from having a mid 70's fev1 senior year of high school and now I'm lucky to see 49% after a round of IV's. I have no clue what's causing my drop in functions. My last dr. appointment about 2 weeks ago my fev1 was down to 34% and I knew it wasn't going to be good before I even did the pft. But the most frustrating part was that I was only off IV's for 2 weeks before my decline. I just can't seem to get any long term relief. Since that last dr. appt. I've been on oral bactrim ds and cipro trying to kick a possible new infection. My compliance with treatments has always been above average doing my vest and nebs religiously and even cpt added 3x a week. I have to admit that I may have an anxiety/depression component also but I am undiagnosed and haven't even mentioned it to my docs. I'm living in constant fear of just one day getting too sick to recover. Right now I only culture PA but have cultured MRSA before. I've been reading about MAC and the symptoms people describe are somewhat similar to mine over the last year but then again it could be that anxiety/depression component and I also don't know if my doc has ever even tested for MAC. I see the doc again tomorrow and I guess he'll tell me if I need IV's again or not. I also had hemoptysis this morning about 3-4 tablespoons despite being on 2 oral abx. Its just so frustrating seeing no benefits after all the hard work I put in...
 
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giantsfan91

Guest
Hi guys,
I don't post here too often but I check the site daily and find everything you guys say to be valuable so I just want to explain my situation to who ever will listen..
The last year and a half of my life has been extremely difficult health wise for me. I went from having a mid 70's fev1 senior year of high school and now I'm lucky to see 49% after a round of IV's. I have no clue what's causing my drop in functions. My last dr. appointment about 2 weeks ago my fev1 was down to 34% and I knew it wasn't going to be good before I even did the pft. But the most frustrating part was that I was only off IV's for 2 weeks before my decline. I just can't seem to get any long term relief. Since that last dr. appt. I've been on oral bactrim ds and cipro trying to kick a possible new infection. My compliance with treatments has always been above average doing my vest and nebs religiously and even cpt added 3x a week. I have to admit that I may have an anxiety/depression component also but I am undiagnosed and haven't even mentioned it to my docs. I'm living in constant fear of just one day getting too sick to recover. Right now I only culture PA but have cultured MRSA before. I've been reading about MAC and the symptoms people describe are somewhat similar to mine over the last year but then again it could be that anxiety/depression component and I also don't know if my doc has ever even tested for MAC. I see the doc again tomorrow and I guess he'll tell me if I need IV's again or not. I also had hemoptysis this morning about 3-4 tablespoons despite being on 2 oral abx. Its just so frustrating seeing no benefits after all the hard work I put in...
 
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Cbegley

New member
Ugh, I understand your pain. My husband is 23 years old and his lung function (he is a little sick right now and on minocycline and cipro) is 19%. His was staying around 26, for about 2 years but it has dropped. He is going to be put on a transplant list this week..and that is calling it too close. He has been through a lot of what you just said, he does everything he is supposed to religiously and works so hard at keeping up his lung function but it just goes down over time and with each infection/hospitalization <img src="i/expressions/face-icon-small-sad.gif" border="0"> He has depression as well and is on paxil for it, he says it helps with that aspect of it a lot. You really should talk to your Doctors about it so that you can get help with it. Make sure none of the medication you are taking can cause coughing up blood, Robbie was taking Naproxen and a side effect of that is coughing up blood...not good. If you even start to feel a little sick go to the hospital and get a tune up-get better. Go home and do everything you are supposed to, try to do some lung exercises, best one rob's tried so far is with balloons, he just blows them up a few times and it raised his lung function by about 5% which is great <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you get better, good luck Mike.
 
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Cbegley

New member
Ugh, I understand your pain. My husband is 23 years old and his lung function (he is a little sick right now and on minocycline and cipro) is 19%. His was staying around 26, for about 2 years but it has dropped. He is going to be put on a transplant list this week..and that is calling it too close. He has been through a lot of what you just said, he does everything he is supposed to religiously and works so hard at keeping up his lung function but it just goes down over time and with each infection/hospitalization <img src="i/expressions/face-icon-small-sad.gif" border="0"> He has depression as well and is on paxil for it, he says it helps with that aspect of it a lot. You really should talk to your Doctors about it so that you can get help with it. Make sure none of the medication you are taking can cause coughing up blood, Robbie was taking Naproxen and a side effect of that is coughing up blood...not good. If you even start to feel a little sick go to the hospital and get a tune up-get better. Go home and do everything you are supposed to, try to do some lung exercises, best one rob's tried so far is with balloons, he just blows them up a few times and it raised his lung function by about 5% which is great <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you get better, good luck Mike.
 
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rubyroselee

New member
How frustrating that must be for you Mike. That is what is so disheartening about CF is that you try and try and do everything you're supposed to, but the disease still causes the decline. I absolutely hate those moments when you realize that you have to "accept" a new symptom or a new baseline. But I would definitely ask about an antidepressant/antianxiety medication. I have been on some off and on throughout my life and they have helped me through some rough patches. This disease is depressing and does cause a lot of anxiety and worry, so it makes sense that a lot of us take something to overcome that. I hate bringing it up when I think I need an antidepressant or antianxiety med because I almost feel like I should be able to control the emotions/feelings and not need a medication to deal with them. But at the same time, it's also nothing you can control and the feelings are real, and you don't deserve to live in constant fear and sadness. This disease is depressing and does cause anxiety, without a doubt! After my first experience with hemoptysis a couple weeks ago, I had a lot of low feelings about this new symptom and a lot of anxiety about when/if it will happen again. Even though those feelings have now subsided a little, they still sit on my mind here and there, which is stressful.

But, it is interesting to hear how quickly you've declined over the past year and a half. I wonder if there is something else causing the issue besides the PA. It seems that the antibiotics you're on are not touching the infection perhaps. I'm surprised your MD doesn't know (or isn't trying harder to figure out) why the sharp decline is happening. I would try really hard to search for answers with your MD to crack this code. It seems that losing that much function in a year and a half is uncharacteristic of PA. I would pursue this a little bit further if that were me.

Anyhow, I know I wasn't much help, but I hope you can find some peace and relief soon.
 
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rubyroselee

New member
How frustrating that must be for you Mike. That is what is so disheartening about CF is that you try and try and do everything you're supposed to, but the disease still causes the decline. I absolutely hate those moments when you realize that you have to "accept" a new symptom or a new baseline. But I would definitely ask about an antidepressant/antianxiety medication. I have been on some off and on throughout my life and they have helped me through some rough patches. This disease is depressing and does cause a lot of anxiety and worry, so it makes sense that a lot of us take something to overcome that. I hate bringing it up when I think I need an antidepressant or antianxiety med because I almost feel like I should be able to control the emotions/feelings and not need a medication to deal with them. But at the same time, it's also nothing you can control and the feelings are real, and you don't deserve to live in constant fear and sadness. This disease is depressing and does cause anxiety, without a doubt! After my first experience with hemoptysis a couple weeks ago, I had a lot of low feelings about this new symptom and a lot of anxiety about when/if it will happen again. Even though those feelings have now subsided a little, they still sit on my mind here and there, which is stressful.

But, it is interesting to hear how quickly you've declined over the past year and a half. I wonder if there is something else causing the issue besides the PA. It seems that the antibiotics you're on are not touching the infection perhaps. I'm surprised your MD doesn't know (or isn't trying harder to figure out) why the sharp decline is happening. I would try really hard to search for answers with your MD to crack this code. It seems that losing that much function in a year and a half is uncharacteristic of PA. I would pursue this a little bit further if that were me.

Anyhow, I know I wasn't much help, but I hope you can find some peace and relief soon.
 
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giantsfan91

Guest
Thank you for those replies, @rubyroselee I think you pretty much feel the same as I do regarding the antidepression and anxiety meds. I just hate the idea that I need medication to make my mood better. I saw the doc this morning and I'll be put back on home IVs for 2 weeks. I'm frustrated and am going to have a talk with the radiologist who usually does my PICCs about getting a port placed. I also hate the fact that a port is permanent and a sign of me getting worse. I asked about if I've been tested for MAC and I was on my last culture and it showed no signs of it. I Still didn't address any of my mental concerns because my mom still comes with me to my appointments and I feel like I would upset her if I told her the truth about how I really feel my health is. I always try to be so optimistic and she does too so it's going to be a hard bridge to cross if/when we come to it.
 
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giantsfan91

Guest
Thank you for those replies, @rubyroselee I think you pretty much feel the same as I do regarding the antidepression and anxiety meds. I just hate the idea that I need medication to make my mood better. I saw the doc this morning and I'll be put back on home IVs for 2 weeks. I'm frustrated and am going to have a talk with the radiologist who usually does my PICCs about getting a port placed. I also hate the fact that a port is permanent and a sign of me getting worse. I asked about if I've been tested for MAC and I was on my last culture and it showed no signs of it. I Still didn't address any of my mental concerns because my mom still comes with me to my appointments and I feel like I would upset her if I told her the truth about how I really feel my health is. I always try to be so optimistic and she does too so it's going to be a hard bridge to cross if/when we come to it.
 
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giantsfan91

Guest
Just wanted to say I'm looking at my 3rd round of IV's this winter because my PFT's dropped again from 45% to 37% in only a month since I got off my last IV's. I was on tobi this entire time and it still didn't prevent a drop. The doc started me on bactrim and cipro orally but those don't do much for a big exacerbation. I'm colonized with pseudomonas and resistant to almost all the antibiotics for it orally and by IV. The only antibiotic I'm sensitive to is Zosyn but it gives me hemolytic anemia so I can't take it. Should I be asking my doctor what the big picture plan is for me? I can't take feeling good for only 3 weeks anymore and they just keep putting me on merrem and tobramycin for IV's. Should I request a bronchoscopy to get a deeper view of my lungs? I've never had one and thought maybe it'll do me some good. I had a CT scan back in November and the funny thing is that my chest had a few more plugs in it but did not really change in bronchiectisis from a couple years ago. Anybody have any suggestions or questions I should be asking my doc at this point??
 
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giantsfan91

Guest
Just wanted to say I'm looking at my 3rd round of IV's this winter because my PFT's dropped again from 45% to 37% in only a month since I got off my last IV's. I was on tobi this entire time and it still didn't prevent a drop. The doc started me on bactrim and cipro orally but those don't do much for a big exacerbation. I'm colonized with pseudomonas and resistant to almost all the antibiotics for it orally and by IV. The only antibiotic I'm sensitive to is Zosyn but it gives me hemolytic anemia so I can't take it. Should I be asking my doctor what the big picture plan is for me? I can't take feeling good for only 3 weeks anymore and they just keep putting me on merrem and tobramycin for IV's. Should I request a bronchoscopy to get a deeper view of my lungs? I've never had one and thought maybe it'll do me some good. I had a CT scan back in November and the funny thing is that my chest had a few more plugs in it but did not really change in bronchiectisis from a couple years ago. Anybody have any suggestions or questions I should be asking my doc at this point??
 
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JustDucky

New member
Absolutely Mike....if you haven't had a bronch then it would be a good idea to get one so that samples from other parts of the lung can be taken. There just may be another bacteria down there that is being missed. I can tell you that my sputum samples differed from what I coughed up versus what my bronch yielded. I too was having a difficult time with infections and it was puzzling to my doc as well as for me. The bronch picked up the cepacia that we thought was gone as well as steno, so two bugs were being missed and not treated. The PA was the only thing that showed up on my cultures that I coughed up.....After the right combo of IV's, I did feel better.

Hopefully the doc will take your concerns seriously, it sounds like you are headed in the right direction with the bronch being the next test to look at to try and figure out why you are so sick often. Also, another thing you might want to bring up is synergy testing to find the best combo of antibiotics for the bacteria that you are growing out. It sounds like you are really resistant and limited as to what IV's you can use, this test will be invaluable to your treatment.

Good luck,
Jenn 40 w/CF
 
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JustDucky

New member
Absolutely Mike....if you haven't had a bronch then it would be a good idea to get one so that samples from other parts of the lung can be taken. There just may be another bacteria down there that is being missed. I can tell you that my sputum samples differed from what I coughed up versus what my bronch yielded. I too was having a difficult time with infections and it was puzzling to my doc as well as for me. The bronch picked up the cepacia that we thought was gone as well as steno, so two bugs were being missed and not treated. The PA was the only thing that showed up on my cultures that I coughed up.....After the right combo of IV's, I did feel better.

Hopefully the doc will take your concerns seriously, it sounds like you are headed in the right direction with the bronch being the next test to look at to try and figure out why you are so sick often. Also, another thing you might want to bring up is synergy testing to find the best combo of antibiotics for the bacteria that you are growing out. It sounds like you are really resistant and limited as to what IV's you can use, this test will be invaluable to your treatment.

Good luck,
Jenn 40 w/CF
 
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giantsfan91

Guest
Thank you for the reply JustDucky, I asked about what they thought about doing a bronchoscopy and they said no because they found that it doesn't really do any good and just causes inflammation and irritation. Why do I feel like that is BS? Should I get a second opinion? They are telling me now that they are going to try cefepime with tobra and if that doesn't work they don't know what they're going to try next.
 
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giantsfan91

Guest
Thank you for the reply JustDucky, I asked about what they thought about doing a bronchoscopy and they said no because they found that it doesn't really do any good and just causes inflammation and irritation. Why do I feel like that is BS? Should I get a second opinion? They are telling me now that they are going to try cefepime with tobra and if that doesn't work they don't know what they're going to try next.
 
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dbsholes

New member
Have you ever been checked for ABPA. This is a viral infection common in about 10% of cf patients, so antibiotics don't touch it - and an astounding number of doctors never think of it. It will cause all other infections to increase in intensity. ABPA is diagnosed with a blood test to look at your serum IgE levels, which only a few labs around the country are equipped to test. Your blood sample will likely have to be sent out and you won't get your results for a week or so. It's worth looking into.
Also, it's no shame to be depressed or anxious. It's almost a standard part of living with any chronic condition. I've been clinically depressed for over thirty years and without the help of anti-depressants I'm sure I would have killed myself several times over. And YES, depression that is not effectively treated DOES effect your physical health - more than standard western medicine will admit. Find a way to share this information with your doctor. And I really would suggest not trying to hide it from your mother either. I understand, but in reality she probably already knows.
Regarding "not wanting to take medication for my mood" - you're looking at it wrong. It's just as much a chemistry issue as your overall disease. We don't absorb the nutrients we need, and this includes the nutrients that the brain needs. Some cf folks are pancreatic sufficient, some have little lung disease, and some are sucuptible to depression. It's very complex, but being embarrassed about being depressed is literally dangerous. Just my two cents.
David Sholes
 
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dbsholes

New member
Have you ever been checked for ABPA. This is a viral infection common in about 10% of cf patients, so antibiotics don't touch it - and an astounding number of doctors never think of it. It will cause all other infections to increase in intensity. ABPA is diagnosed with a blood test to look at your serum IgE levels, which only a few labs around the country are equipped to test. Your blood sample will likely have to be sent out and you won't get your results for a week or so. It's worth looking into.
Also, it's no shame to be depressed or anxious. It's almost a standard part of living with any chronic condition. I've been clinically depressed for over thirty years and without the help of anti-depressants I'm sure I would have killed myself several times over. And YES, depression that is not effectively treated DOES effect your physical health - more than standard western medicine will admit. Find a way to share this information with your doctor. And I really would suggest not trying to hide it from your mother either. I understand, but in reality she probably already knows.
Regarding "not wanting to take medication for my mood" - you're looking at it wrong. It's just as much a chemistry issue as your overall disease. We don't absorb the nutrients we need, and this includes the nutrients that the brain needs. Some cf folks are pancreatic sufficient, some have little lung disease, and some are sucuptible to depression. It's very complex, but being embarrassed about being depressed is literally dangerous. Just my two cents.
David Sholes
 
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