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cystic fibrosis and mycobacterium avium
- Thread starter joy
- Start date
Hi Joy,
I'm a 39 year old female w/ cf. I am curious what side effects you are referring to? I have had Mycobacterium abcessus (same family as m. avium) and have been treated twice for 6 months at a time with IV antibiotics. It was a challenge! As for side effects I had the usual stomach upset but in addition had some kidney problems due to the lengthy IV courses. Luckily they resolved after the IV antibiotics were completed. Hope you are feeling better. -K
I'm a 39 year old female w/ cf. I am curious what side effects you are referring to? I have had Mycobacterium abcessus (same family as m. avium) and have been treated twice for 6 months at a time with IV antibiotics. It was a challenge! As for side effects I had the usual stomach upset but in addition had some kidney problems due to the lengthy IV courses. Luckily they resolved after the IV antibiotics were completed. Hope you are feeling better. -K
Hi Joy,
I'm a 39 year old female w/ cf. I am curious what side effects you are referring to? I have had Mycobacterium abcessus (same family as m. avium) and have been treated twice for 6 months at a time with IV antibiotics. It was a challenge! As for side effects I had the usual stomach upset but in addition had some kidney problems due to the lengthy IV courses. Luckily they resolved after the IV antibiotics were completed. Hope you are feeling better. -K
I'm a 39 year old female w/ cf. I am curious what side effects you are referring to? I have had Mycobacterium abcessus (same family as m. avium) and have been treated twice for 6 months at a time with IV antibiotics. It was a challenge! As for side effects I had the usual stomach upset but in addition had some kidney problems due to the lengthy IV courses. Luckily they resolved after the IV antibiotics were completed. Hope you are feeling better. -K
K
Im on zithromaz, ethambutol, and rifampin and will have to take them for one to two years. The side effects are loss of appetite, extreme tiredness, mental confusion( I'm doing things I don't have any memory of)and forgetting lots, diarreah, and stomach aches. Lots of fun. But I'm thankful it's not IV drugs. I think, I'm now sure anymore.
Joy
Im on zithromaz, ethambutol, and rifampin and will have to take them for one to two years. The side effects are loss of appetite, extreme tiredness, mental confusion( I'm doing things I don't have any memory of)and forgetting lots, diarreah, and stomach aches. Lots of fun. But I'm thankful it's not IV drugs. I think, I'm now sure anymore.
Joy
K
Im on zithromaz, ethambutol, and rifampin and will have to take them for one to two years. The side effects are loss of appetite, extreme tiredness, mental confusion( I'm doing things I don't have any memory of)and forgetting lots, diarreah, and stomach aches. Lots of fun. But I'm thankful it's not IV drugs. I think, I'm now sure anymore.
Joy
Im on zithromaz, ethambutol, and rifampin and will have to take them for one to two years. The side effects are loss of appetite, extreme tiredness, mental confusion( I'm doing things I don't have any memory of)and forgetting lots, diarreah, and stomach aches. Lots of fun. But I'm thankful it's not IV drugs. I think, I'm now sure anymore.
Joy
Hi Joy,
I did have the tiredness while on the IV abx also. That is quite a coctail you are on! As I am sure your mds told you it is very important to stay on the drugs for a long time as the mycobacterium are very difficult to get rid of, even if you don't have cf. Also, the use of multiple drugs is best so you don't develop any resistances. How long have you been taking the abx? Were you symptomatic and feeling really crummy? How old are you? Sorry to ask so many questions, I have never met anyone else who has been through something similar....I had the m.abcessus in my lungs for many years before it was a problem for me. Not sure what set it off and caused it to become infective, though. I felt really lousy with extreme fatigue, fevers, shortness of breath and coughing huge quantities. The first time I was treated with the iv antibiotics I felt so much better after the 6 months. I was well for about a year then the infection reoccured and I had to do another 6 months. I did have fatigue while on the abx, but I always wondered if it was just from being up at all hours doing the IVs around the clock! I also had terrible stomach upset, but that did get better after I had been on the antibiotics about a month. I do think it is hard on your body to take these heavy-duty drugs, even though they are helping you. That was 6 years ago that I had my last course of abx for that infection, I have been doing really well since then. I also have the usual pseudomonas and something else called stenotrophomonas, which I am treated for about once a year. I have been taking inhaled amikacin (similar to tobi) and oral biaxin every other month and I credit that with keeping me well. I can appreciate your wanting to keep life as normal as possible, especially since the treatment is for so long. I hope once your body gets used to the medications it will be a little easier. My only advice is to drink plenty of water, eat well,and rest when you are tired. The rest is up to the medications! Do you have anyone to help you out? I hope you feel better soon. -Kim
I did have the tiredness while on the IV abx also. That is quite a coctail you are on! As I am sure your mds told you it is very important to stay on the drugs for a long time as the mycobacterium are very difficult to get rid of, even if you don't have cf. Also, the use of multiple drugs is best so you don't develop any resistances. How long have you been taking the abx? Were you symptomatic and feeling really crummy? How old are you? Sorry to ask so many questions, I have never met anyone else who has been through something similar....I had the m.abcessus in my lungs for many years before it was a problem for me. Not sure what set it off and caused it to become infective, though. I felt really lousy with extreme fatigue, fevers, shortness of breath and coughing huge quantities. The first time I was treated with the iv antibiotics I felt so much better after the 6 months. I was well for about a year then the infection reoccured and I had to do another 6 months. I did have fatigue while on the abx, but I always wondered if it was just from being up at all hours doing the IVs around the clock! I also had terrible stomach upset, but that did get better after I had been on the antibiotics about a month. I do think it is hard on your body to take these heavy-duty drugs, even though they are helping you. That was 6 years ago that I had my last course of abx for that infection, I have been doing really well since then. I also have the usual pseudomonas and something else called stenotrophomonas, which I am treated for about once a year. I have been taking inhaled amikacin (similar to tobi) and oral biaxin every other month and I credit that with keeping me well. I can appreciate your wanting to keep life as normal as possible, especially since the treatment is for so long. I hope once your body gets used to the medications it will be a little easier. My only advice is to drink plenty of water, eat well,and rest when you are tired. The rest is up to the medications! Do you have anyone to help you out? I hope you feel better soon. -Kim
Hi Joy,
I did have the tiredness while on the IV abx also. That is quite a coctail you are on! As I am sure your mds told you it is very important to stay on the drugs for a long time as the mycobacterium are very difficult to get rid of, even if you don't have cf. Also, the use of multiple drugs is best so you don't develop any resistances. How long have you been taking the abx? Were you symptomatic and feeling really crummy? How old are you? Sorry to ask so many questions, I have never met anyone else who has been through something similar....I had the m.abcessus in my lungs for many years before it was a problem for me. Not sure what set it off and caused it to become infective, though. I felt really lousy with extreme fatigue, fevers, shortness of breath and coughing huge quantities. The first time I was treated with the iv antibiotics I felt so much better after the 6 months. I was well for about a year then the infection reoccured and I had to do another 6 months. I did have fatigue while on the abx, but I always wondered if it was just from being up at all hours doing the IVs around the clock! I also had terrible stomach upset, but that did get better after I had been on the antibiotics about a month. I do think it is hard on your body to take these heavy-duty drugs, even though they are helping you. That was 6 years ago that I had my last course of abx for that infection, I have been doing really well since then. I also have the usual pseudomonas and something else called stenotrophomonas, which I am treated for about once a year. I have been taking inhaled amikacin (similar to tobi) and oral biaxin every other month and I credit that with keeping me well. I can appreciate your wanting to keep life as normal as possible, especially since the treatment is for so long. I hope once your body gets used to the medications it will be a little easier. My only advice is to drink plenty of water, eat well,and rest when you are tired. The rest is up to the medications! Do you have anyone to help you out? I hope you feel better soon. -Kim
I did have the tiredness while on the IV abx also. That is quite a coctail you are on! As I am sure your mds told you it is very important to stay on the drugs for a long time as the mycobacterium are very difficult to get rid of, even if you don't have cf. Also, the use of multiple drugs is best so you don't develop any resistances. How long have you been taking the abx? Were you symptomatic and feeling really crummy? How old are you? Sorry to ask so many questions, I have never met anyone else who has been through something similar....I had the m.abcessus in my lungs for many years before it was a problem for me. Not sure what set it off and caused it to become infective, though. I felt really lousy with extreme fatigue, fevers, shortness of breath and coughing huge quantities. The first time I was treated with the iv antibiotics I felt so much better after the 6 months. I was well for about a year then the infection reoccured and I had to do another 6 months. I did have fatigue while on the abx, but I always wondered if it was just from being up at all hours doing the IVs around the clock! I also had terrible stomach upset, but that did get better after I had been on the antibiotics about a month. I do think it is hard on your body to take these heavy-duty drugs, even though they are helping you. That was 6 years ago that I had my last course of abx for that infection, I have been doing really well since then. I also have the usual pseudomonas and something else called stenotrophomonas, which I am treated for about once a year. I have been taking inhaled amikacin (similar to tobi) and oral biaxin every other month and I credit that with keeping me well. I can appreciate your wanting to keep life as normal as possible, especially since the treatment is for so long. I hope once your body gets used to the medications it will be a little easier. My only advice is to drink plenty of water, eat well,and rest when you are tired. The rest is up to the medications! Do you have anyone to help you out? I hope you feel better soon. -Kim
kim,
I don't mind the Q's at all and thanks for responding. It is wonderful to talk to another Mom in the same boat. I'm just having trouble accepting the life changes of being more sick.
I have been on my coctail since Sept. I'm 38 and have been sick since day one with lots of pneumonia, bronchitis, bronchiectasis, and an Iga deficiency I was born with. This Iga is your first line of defense against germs and also makes your system resistant to abx. Oh yea, I forgot the asthma. With cf though how can you rally tell, it's always hard to breath.
Almost three yrs ago I was diagnosed wiht MAC . I took doxy and flagyl and all symptoms went away. Then two years later I got reallly sick again( that was in March of this yr) the same symtoms you described. When tested I also grew cerratia and aspergillas, as well as s. aureus. Do to being symtomatic the dr stared the coctail. I then went to Nationl Jewish in Denver and they discovered the cf as the reason for everything.
My avium is resistant to everything except the drugs I'm on and even the amikacin showed up as not working according to my sensitivity results. I tried the Biaxin and it made me soooo sick, it tore my stomach up. So, now I take the Zithro.
I shouldn't whine, it could be so much worse. I'm just having a hard time asjusting to the no energy. I have a 13 yr and an 18 yr old and it is difficult to keep up with their life and the house and the grocery shopping and my bisiness. I'm a massage therapist , and it is a very physical job and takes alot of energy. Right now my house is a wreck, I've not been able to work this week and most of the time I just want to sleep and cry because I can't do what is expected of me.
I have done alot of research on the MAC and understand quite well how it works and how to protect myself and teach my family about the germ theory. It is a big pain it the ...... Like you many times the kids can't have pple over to stay the night or visit if they may be sick. The hardest part is when my kids do get sick and I have to take care of them. I immediatly know I'm going to be sick.
My husband travels alot and isn't here to help out and that puts more on me. When he is home he helps alot. My daughter would do more, but she has alot going on at school and she wks on the weekends. She already has no life and it isn't her place to do my job.
I don't want to be a burden on my family and sometimes I feel like I am. I look like the picture of health, so nobody understands how I could possibly be sick. I'm actuallly glad about not looking sick, but in other ways sometimes I wish I could show them my lungs when my friends don't get it.
I'm venting and I appreciate your listening. If you have any advice as to how to accomplish more in my day I'm open to it.
Thank You-Joy
I don't mind the Q's at all and thanks for responding. It is wonderful to talk to another Mom in the same boat. I'm just having trouble accepting the life changes of being more sick.
I have been on my coctail since Sept. I'm 38 and have been sick since day one with lots of pneumonia, bronchitis, bronchiectasis, and an Iga deficiency I was born with. This Iga is your first line of defense against germs and also makes your system resistant to abx. Oh yea, I forgot the asthma. With cf though how can you rally tell, it's always hard to breath.
Almost three yrs ago I was diagnosed wiht MAC . I took doxy and flagyl and all symptoms went away. Then two years later I got reallly sick again( that was in March of this yr) the same symtoms you described. When tested I also grew cerratia and aspergillas, as well as s. aureus. Do to being symtomatic the dr stared the coctail. I then went to Nationl Jewish in Denver and they discovered the cf as the reason for everything.
My avium is resistant to everything except the drugs I'm on and even the amikacin showed up as not working according to my sensitivity results. I tried the Biaxin and it made me soooo sick, it tore my stomach up. So, now I take the Zithro.
I shouldn't whine, it could be so much worse. I'm just having a hard time asjusting to the no energy. I have a 13 yr and an 18 yr old and it is difficult to keep up with their life and the house and the grocery shopping and my bisiness. I'm a massage therapist , and it is a very physical job and takes alot of energy. Right now my house is a wreck, I've not been able to work this week and most of the time I just want to sleep and cry because I can't do what is expected of me.
I have done alot of research on the MAC and understand quite well how it works and how to protect myself and teach my family about the germ theory. It is a big pain it the ...... Like you many times the kids can't have pple over to stay the night or visit if they may be sick. The hardest part is when my kids do get sick and I have to take care of them. I immediatly know I'm going to be sick.
My husband travels alot and isn't here to help out and that puts more on me. When he is home he helps alot. My daughter would do more, but she has alot going on at school and she wks on the weekends. She already has no life and it isn't her place to do my job.
I don't want to be a burden on my family and sometimes I feel like I am. I look like the picture of health, so nobody understands how I could possibly be sick. I'm actuallly glad about not looking sick, but in other ways sometimes I wish I could show them my lungs when my friends don't get it.
I'm venting and I appreciate your listening. If you have any advice as to how to accomplish more in my day I'm open to it.
Thank You-Joy
kim,
I don't mind the Q's at all and thanks for responding. It is wonderful to talk to another Mom in the same boat. I'm just having trouble accepting the life changes of being more sick.
I have been on my coctail since Sept. I'm 38 and have been sick since day one with lots of pneumonia, bronchitis, bronchiectasis, and an Iga deficiency I was born with. This Iga is your first line of defense against germs and also makes your system resistant to abx. Oh yea, I forgot the asthma. With cf though how can you rally tell, it's always hard to breath.
Almost three yrs ago I was diagnosed wiht MAC . I took doxy and flagyl and all symptoms went away. Then two years later I got reallly sick again( that was in March of this yr) the same symtoms you described. When tested I also grew cerratia and aspergillas, as well as s. aureus. Do to being symtomatic the dr stared the coctail. I then went to Nationl Jewish in Denver and they discovered the cf as the reason for everything.
My avium is resistant to everything except the drugs I'm on and even the amikacin showed up as not working according to my sensitivity results. I tried the Biaxin and it made me soooo sick, it tore my stomach up. So, now I take the Zithro.
I shouldn't whine, it could be so much worse. I'm just having a hard time asjusting to the no energy. I have a 13 yr and an 18 yr old and it is difficult to keep up with their life and the house and the grocery shopping and my bisiness. I'm a massage therapist , and it is a very physical job and takes alot of energy. Right now my house is a wreck, I've not been able to work this week and most of the time I just want to sleep and cry because I can't do what is expected of me.
I have done alot of research on the MAC and understand quite well how it works and how to protect myself and teach my family about the germ theory. It is a big pain it the ...... Like you many times the kids can't have pple over to stay the night or visit if they may be sick. The hardest part is when my kids do get sick and I have to take care of them. I immediatly know I'm going to be sick.
My husband travels alot and isn't here to help out and that puts more on me. When he is home he helps alot. My daughter would do more, but she has alot going on at school and she wks on the weekends. She already has no life and it isn't her place to do my job.
I don't want to be a burden on my family and sometimes I feel like I am. I look like the picture of health, so nobody understands how I could possibly be sick. I'm actuallly glad about not looking sick, but in other ways sometimes I wish I could show them my lungs when my friends don't get it.
I'm venting and I appreciate your listening. If you have any advice as to how to accomplish more in my day I'm open to it.
Thank You-Joy
I don't mind the Q's at all and thanks for responding. It is wonderful to talk to another Mom in the same boat. I'm just having trouble accepting the life changes of being more sick.
I have been on my coctail since Sept. I'm 38 and have been sick since day one with lots of pneumonia, bronchitis, bronchiectasis, and an Iga deficiency I was born with. This Iga is your first line of defense against germs and also makes your system resistant to abx. Oh yea, I forgot the asthma. With cf though how can you rally tell, it's always hard to breath.
Almost three yrs ago I was diagnosed wiht MAC . I took doxy and flagyl and all symptoms went away. Then two years later I got reallly sick again( that was in March of this yr) the same symtoms you described. When tested I also grew cerratia and aspergillas, as well as s. aureus. Do to being symtomatic the dr stared the coctail. I then went to Nationl Jewish in Denver and they discovered the cf as the reason for everything.
My avium is resistant to everything except the drugs I'm on and even the amikacin showed up as not working according to my sensitivity results. I tried the Biaxin and it made me soooo sick, it tore my stomach up. So, now I take the Zithro.
I shouldn't whine, it could be so much worse. I'm just having a hard time asjusting to the no energy. I have a 13 yr and an 18 yr old and it is difficult to keep up with their life and the house and the grocery shopping and my bisiness. I'm a massage therapist , and it is a very physical job and takes alot of energy. Right now my house is a wreck, I've not been able to work this week and most of the time I just want to sleep and cry because I can't do what is expected of me.
I have done alot of research on the MAC and understand quite well how it works and how to protect myself and teach my family about the germ theory. It is a big pain it the ...... Like you many times the kids can't have pple over to stay the night or visit if they may be sick. The hardest part is when my kids do get sick and I have to take care of them. I immediatly know I'm going to be sick.
My husband travels alot and isn't here to help out and that puts more on me. When he is home he helps alot. My daughter would do more, but she has alot going on at school and she wks on the weekends. She already has no life and it isn't her place to do my job.
I don't want to be a burden on my family and sometimes I feel like I am. I look like the picture of health, so nobody understands how I could possibly be sick. I'm actuallly glad about not looking sick, but in other ways sometimes I wish I could show them my lungs when my friends don't get it.
I'm venting and I appreciate your listening. If you have any advice as to how to accomplish more in my day I'm open to it.
Thank You-Joy
Hi Joy,
I went to the National Jewish in Denver also! I was so impressed with the doctor there, dr iseman, he was wonderful and very reassuring. I had been told that it is usually 'end stage' patients who get these Mycobacterial infections, but he made me feel a lot better. I have a relatively mild case, and had been pretty healthy and working up until this infection, so it was very shocking to me to be told that usually only very sick people get this. But I did feel a lot better after going to Denver and now know that people can live with this for a good long time..... That was my biggest concern, I was so worried about my son/family.
I can completely relate to your low energy. It is so frustrating not be be able to keep up with everything! There are times when my house is a disaster and I am just able to look after myself, forget shopping, cleaning or volunteering. It is so aggravating to look around and see everything falling behind and not being able to keep up with it. I wish I had some good suggestions! My family is pretty helpful, but I feel the same way you do, I don't think it is my son or husband's job to pick up my slack. There are times when I am just not able to do everything I need to. They do pitch in for the short term sometimes, but both have responsabilities with work/school and it is hard for them to do my 'job' as well. I am very impressed that you are still working, your job must take an enormous amount of energy. I was a nurse and that was quite tiring as well. Now I can't imagine how I ever had the energy to work! Would you contemplate applying for SSDI? I realize this is quite a big decision and I really struggled with it. (Still do at times!) I know it isn't for everyone, but even if you were able to stop working for a bit until you are feeling better and get your energy back, it might help. If you have any questions about it, I would be glad to answer.
It is so hard when you look fine, people have no idea what you are going through. I also wish I looked sick sometimes, it can be frustrating when people say, "but you look fine!" when actually you are feeling really horrible. I know how hard the adjustment is after being diagnosed, I think it took me a few years to really come to terms with everthing. Try to give it time....And don't worry at all about venting, I am glad to listen. It is so nice to run into someone else with a similar situation. I find it hard being 'different' from my friends and even from a lot of other cf patients. It is so comforting to know there are other people out there who share similar problems. My email is knunnari@comcast.net if you would like to talk.... Take care! Kim
I went to the National Jewish in Denver also! I was so impressed with the doctor there, dr iseman, he was wonderful and very reassuring. I had been told that it is usually 'end stage' patients who get these Mycobacterial infections, but he made me feel a lot better. I have a relatively mild case, and had been pretty healthy and working up until this infection, so it was very shocking to me to be told that usually only very sick people get this. But I did feel a lot better after going to Denver and now know that people can live with this for a good long time..... That was my biggest concern, I was so worried about my son/family.
I can completely relate to your low energy. It is so frustrating not be be able to keep up with everything! There are times when my house is a disaster and I am just able to look after myself, forget shopping, cleaning or volunteering. It is so aggravating to look around and see everything falling behind and not being able to keep up with it. I wish I had some good suggestions! My family is pretty helpful, but I feel the same way you do, I don't think it is my son or husband's job to pick up my slack. There are times when I am just not able to do everything I need to. They do pitch in for the short term sometimes, but both have responsabilities with work/school and it is hard for them to do my 'job' as well. I am very impressed that you are still working, your job must take an enormous amount of energy. I was a nurse and that was quite tiring as well. Now I can't imagine how I ever had the energy to work! Would you contemplate applying for SSDI? I realize this is quite a big decision and I really struggled with it. (Still do at times!) I know it isn't for everyone, but even if you were able to stop working for a bit until you are feeling better and get your energy back, it might help. If you have any questions about it, I would be glad to answer.
It is so hard when you look fine, people have no idea what you are going through. I also wish I looked sick sometimes, it can be frustrating when people say, "but you look fine!" when actually you are feeling really horrible. I know how hard the adjustment is after being diagnosed, I think it took me a few years to really come to terms with everthing. Try to give it time....And don't worry at all about venting, I am glad to listen. It is so nice to run into someone else with a similar situation. I find it hard being 'different' from my friends and even from a lot of other cf patients. It is so comforting to know there are other people out there who share similar problems. My email is knunnari@comcast.net if you would like to talk.... Take care! Kim
Hi Joy,
I went to the National Jewish in Denver also! I was so impressed with the doctor there, dr iseman, he was wonderful and very reassuring. I had been told that it is usually 'end stage' patients who get these Mycobacterial infections, but he made me feel a lot better. I have a relatively mild case, and had been pretty healthy and working up until this infection, so it was very shocking to me to be told that usually only very sick people get this. But I did feel a lot better after going to Denver and now know that people can live with this for a good long time..... That was my biggest concern, I was so worried about my son/family.
I can completely relate to your low energy. It is so frustrating not be be able to keep up with everything! There are times when my house is a disaster and I am just able to look after myself, forget shopping, cleaning or volunteering. It is so aggravating to look around and see everything falling behind and not being able to keep up with it. I wish I had some good suggestions! My family is pretty helpful, but I feel the same way you do, I don't think it is my son or husband's job to pick up my slack. There are times when I am just not able to do everything I need to. They do pitch in for the short term sometimes, but both have responsabilities with work/school and it is hard for them to do my 'job' as well. I am very impressed that you are still working, your job must take an enormous amount of energy. I was a nurse and that was quite tiring as well. Now I can't imagine how I ever had the energy to work! Would you contemplate applying for SSDI? I realize this is quite a big decision and I really struggled with it. (Still do at times!) I know it isn't for everyone, but even if you were able to stop working for a bit until you are feeling better and get your energy back, it might help. If you have any questions about it, I would be glad to answer.
It is so hard when you look fine, people have no idea what you are going through. I also wish I looked sick sometimes, it can be frustrating when people say, "but you look fine!" when actually you are feeling really horrible. I know how hard the adjustment is after being diagnosed, I think it took me a few years to really come to terms with everthing. Try to give it time....And don't worry at all about venting, I am glad to listen. It is so nice to run into someone else with a similar situation. I find it hard being 'different' from my friends and even from a lot of other cf patients. It is so comforting to know there are other people out there who share similar problems. My email is knunnari@comcast.net if you would like to talk.... Take care! Kim
I went to the National Jewish in Denver also! I was so impressed with the doctor there, dr iseman, he was wonderful and very reassuring. I had been told that it is usually 'end stage' patients who get these Mycobacterial infections, but he made me feel a lot better. I have a relatively mild case, and had been pretty healthy and working up until this infection, so it was very shocking to me to be told that usually only very sick people get this. But I did feel a lot better after going to Denver and now know that people can live with this for a good long time..... That was my biggest concern, I was so worried about my son/family.
I can completely relate to your low energy. It is so frustrating not be be able to keep up with everything! There are times when my house is a disaster and I am just able to look after myself, forget shopping, cleaning or volunteering. It is so aggravating to look around and see everything falling behind and not being able to keep up with it. I wish I had some good suggestions! My family is pretty helpful, but I feel the same way you do, I don't think it is my son or husband's job to pick up my slack. There are times when I am just not able to do everything I need to. They do pitch in for the short term sometimes, but both have responsabilities with work/school and it is hard for them to do my 'job' as well. I am very impressed that you are still working, your job must take an enormous amount of energy. I was a nurse and that was quite tiring as well. Now I can't imagine how I ever had the energy to work! Would you contemplate applying for SSDI? I realize this is quite a big decision and I really struggled with it. (Still do at times!) I know it isn't for everyone, but even if you were able to stop working for a bit until you are feeling better and get your energy back, it might help. If you have any questions about it, I would be glad to answer.
It is so hard when you look fine, people have no idea what you are going through. I also wish I looked sick sometimes, it can be frustrating when people say, "but you look fine!" when actually you are feeling really horrible. I know how hard the adjustment is after being diagnosed, I think it took me a few years to really come to terms with everthing. Try to give it time....And don't worry at all about venting, I am glad to listen. It is so nice to run into someone else with a similar situation. I find it hard being 'different' from my friends and even from a lot of other cf patients. It is so comforting to know there are other people out there who share similar problems. My email is knunnari@comcast.net if you would like to talk.... Take care! Kim
Kim
I had dr iseman at nationl jewish too. I loved him, he is so nice and easy to talk to. He is getting ready to retire and will be missed very much by all of his patients I'm sure. He also told me my cf is mild to moderate, but I have MAI nodules in all five lobes of my lungs. I don't have any cavities yet and that is good. I was glad I went.
I don't know what ssdi is, or if I would qualify for any assistance.
I really am glad I've met you through this web sit. I will e-mail you, I have a feeling we will be of great help to eachother since our situations are so similar.
Thanks Joy
I had dr iseman at nationl jewish too. I loved him, he is so nice and easy to talk to. He is getting ready to retire and will be missed very much by all of his patients I'm sure. He also told me my cf is mild to moderate, but I have MAI nodules in all five lobes of my lungs. I don't have any cavities yet and that is good. I was glad I went.
I don't know what ssdi is, or if I would qualify for any assistance.
I really am glad I've met you through this web sit. I will e-mail you, I have a feeling we will be of great help to eachother since our situations are so similar.
Thanks Joy
Kim
I had dr iseman at nationl jewish too. I loved him, he is so nice and easy to talk to. He is getting ready to retire and will be missed very much by all of his patients I'm sure. He also told me my cf is mild to moderate, but I have MAI nodules in all five lobes of my lungs. I don't have any cavities yet and that is good. I was glad I went.
I don't know what ssdi is, or if I would qualify for any assistance.
I really am glad I've met you through this web sit. I will e-mail you, I have a feeling we will be of great help to eachother since our situations are so similar.
Thanks Joy
I had dr iseman at nationl jewish too. I loved him, he is so nice and easy to talk to. He is getting ready to retire and will be missed very much by all of his patients I'm sure. He also told me my cf is mild to moderate, but I have MAI nodules in all five lobes of my lungs. I don't have any cavities yet and that is good. I was glad I went.
I don't know what ssdi is, or if I would qualify for any assistance.
I really am glad I've met you through this web sit. I will e-mail you, I have a feeling we will be of great help to eachother since our situations are so similar.
Thanks Joy
hi kim my name is marisol i am a 23 yr old with cf and i also have an atypical Mycobacterium chilonei (not sure if that is how it is spelled but the way i spelled it is the way it sounds i am on the inhaled amikacin and the oral biaxin as well right now. do you have aim or aol maybe we can talk sometime
marisol
23/f/cf
marisol
23/f/cf
hi kim my name is marisol i am a 23 yr old with cf and i also have an atypical Mycobacterium chilonei (not sure if that is how it is spelled but the way i spelled it is the way it sounds i am on the inhaled amikacin and the oral biaxin as well right now. do you have aim or aol maybe we can talk sometime
marisol
23/f/cf
marisol
23/f/cf
Hi Kim, I am a friend of Joy's. We met at Nat'l Jewish Hosp. this summer. I spoke with her on the phone recently and she told me about you. I also have been Dx with abcesses for which I am on IV amikacin and primaxin and oral zithromax. Started drugs early August and still taking them. I am curious to know if you also have a cavity or "hole" in your lung caused by the pathogen? I have about a 2 cm. cavity which my Doc thought might start to close-up and get smaller after being on heavy duty meds. But CAT scan last week showed no improvement. Have not gotten results of sputum samples back yet so don't know if bacteria count is lower. I was heartened to hear that you have had such a long period of being free of this tenacious bug. Did you have or do you have any "holes" and if so did they get smaller or disappear? It's so helpful to be able to compare notes with others. Continued good health. Also did you develop any ringing in your ears or diminished hearing? If so, did it reverse itself. So many questions. Take care and look forward to hearing from you. Pat
Hi Kim, I am a friend of Joy's. We met at Nat'l Jewish Hosp. this summer. I spoke with her on the phone recently and she told me about you. I also have been Dx with abcesses for which I am on IV amikacin and primaxin and oral zithromax. Started drugs early August and still taking them. I am curious to know if you also have a cavity or "hole" in your lung caused by the pathogen? I have about a 2 cm. cavity which my Doc thought might start to close-up and get smaller after being on heavy duty meds. But CAT scan last week showed no improvement. Have not gotten results of sputum samples back yet so don't know if bacteria count is lower. I was heartened to hear that you have had such a long period of being free of this tenacious bug. Did you have or do you have any "holes" and if so did they get smaller or disappear? It's so helpful to be able to compare notes with others. Continued good health. Also did you develop any ringing in your ears or diminished hearing? If so, did it reverse itself. So many questions. Take care and look forward to hearing from you. Pat
Hi Pat,
First of all let me say sorry to hear what you are going through. I did have cavities in my lungs from the m. abcessus, I think the biggest one of mine was 2.5cm x3cm with several other smaller ones. They did fill in, but it took quite a while, if I remember correctly it took the entire 6 months I was on the IVs. The scarred over places are not functioning lung tissue, but at least the holes are gone and not a place for secretions and bacteria to get caught. I do have ringing in my ears, unfortunately, it doesn't go away. Do you have it also? When I first developed it, I thought I would go mad, but like with most things, I have gotten used to it and only notice it now if I think about it. My hearing loss is high frequency, so most of the time it doen't bother me. The only time I have a tiny bit of trouble is in settings like restaurants where there is a lot of background noise. Or if I am talking to a mumbler! I was told in Denver that the effects of the aminoglycosides (amikacin) are cumulative, even if your levels are within normal range, when you take them for extended periods you are more likely to develop side effects. I hope I am not scaring you, but just be aware. Be sure to let you docs know if you develop any hearing symptoms. Do know how long you are going to be on IV abx? I have found the inhaled amikacin to be very helpful. I'm so glad you got in touch, it is very comforting to know there are other people out there. Don't hesitate to email if you have any questions or just want to chat....knunnari@comcast.net Take care and feel better soon! Kim
First of all let me say sorry to hear what you are going through. I did have cavities in my lungs from the m. abcessus, I think the biggest one of mine was 2.5cm x3cm with several other smaller ones. They did fill in, but it took quite a while, if I remember correctly it took the entire 6 months I was on the IVs. The scarred over places are not functioning lung tissue, but at least the holes are gone and not a place for secretions and bacteria to get caught. I do have ringing in my ears, unfortunately, it doesn't go away. Do you have it also? When I first developed it, I thought I would go mad, but like with most things, I have gotten used to it and only notice it now if I think about it. My hearing loss is high frequency, so most of the time it doen't bother me. The only time I have a tiny bit of trouble is in settings like restaurants where there is a lot of background noise. Or if I am talking to a mumbler! I was told in Denver that the effects of the aminoglycosides (amikacin) are cumulative, even if your levels are within normal range, when you take them for extended periods you are more likely to develop side effects. I hope I am not scaring you, but just be aware. Be sure to let you docs know if you develop any hearing symptoms. Do know how long you are going to be on IV abx? I have found the inhaled amikacin to be very helpful. I'm so glad you got in touch, it is very comforting to know there are other people out there. Don't hesitate to email if you have any questions or just want to chat....knunnari@comcast.net Take care and feel better soon! Kim
Hi Pat,
First of all let me say sorry to hear what you are going through. I did have cavities in my lungs from the m. abcessus, I think the biggest one of mine was 2.5cm x3cm with several other smaller ones. They did fill in, but it took quite a while, if I remember correctly it took the entire 6 months I was on the IVs. The scarred over places are not functioning lung tissue, but at least the holes are gone and not a place for secretions and bacteria to get caught. I do have ringing in my ears, unfortunately, it doesn't go away. Do you have it also? When I first developed it, I thought I would go mad, but like with most things, I have gotten used to it and only notice it now if I think about it. My hearing loss is high frequency, so most of the time it doen't bother me. The only time I have a tiny bit of trouble is in settings like restaurants where there is a lot of background noise. Or if I am talking to a mumbler! I was told in Denver that the effects of the aminoglycosides (amikacin) are cumulative, even if your levels are within normal range, when you take them for extended periods you are more likely to develop side effects. I hope I am not scaring you, but just be aware. Be sure to let you docs know if you develop any hearing symptoms. Do know how long you are going to be on IV abx? I have found the inhaled amikacin to be very helpful. I'm so glad you got in touch, it is very comforting to know there are other people out there. Don't hesitate to email if you have any questions or just want to chat....knunnari@comcast.net Take care and feel better soon! Kim
First of all let me say sorry to hear what you are going through. I did have cavities in my lungs from the m. abcessus, I think the biggest one of mine was 2.5cm x3cm with several other smaller ones. They did fill in, but it took quite a while, if I remember correctly it took the entire 6 months I was on the IVs. The scarred over places are not functioning lung tissue, but at least the holes are gone and not a place for secretions and bacteria to get caught. I do have ringing in my ears, unfortunately, it doesn't go away. Do you have it also? When I first developed it, I thought I would go mad, but like with most things, I have gotten used to it and only notice it now if I think about it. My hearing loss is high frequency, so most of the time it doen't bother me. The only time I have a tiny bit of trouble is in settings like restaurants where there is a lot of background noise. Or if I am talking to a mumbler! I was told in Denver that the effects of the aminoglycosides (amikacin) are cumulative, even if your levels are within normal range, when you take them for extended periods you are more likely to develop side effects. I hope I am not scaring you, but just be aware. Be sure to let you docs know if you develop any hearing symptoms. Do know how long you are going to be on IV abx? I have found the inhaled amikacin to be very helpful. I'm so glad you got in touch, it is very comforting to know there are other people out there. Don't hesitate to email if you have any questions or just want to chat....knunnari@comcast.net Take care and feel better soon! Kim