Bronchiectasis, MAC and now Pulmonary Hypertension

Posted by Cathln @Cathln, Fri, Apr 12 4:38pm

I was cured of M Kansasii and Abcessus, in 2008, after an 18 month drug regiment. I have had Bronch for years. I bleed occasionally, but only heavy twice. I have had broncoscopy in 2014, and test positive for MAC, from National Jewish in Denver. I am not on any meds, have done very well. Doctor said, if it isn’t causing symptoms, leave it alone. I have had antiphylactic shock from Clarithromycin, so I can not take any in that class of drug.Tons of us are out there with some of those bacteria and never know it. That’s what doctor has said. I got a new dr. and he said the same thing. Anyway, I just had echocardiagram and was told I have mild pulmonary hypertension. I will be having sputum cultures again, before any meds are started for PH…I’m terrified. I can breathe, walk , do housework, watch my grandson all day, etc….I just wonder if anyone here has Pulmonary Hypertension too, along with these other diseases…Thanks for your help. This has really got me so upset.

@Cathln, Hi there. I am so impressed that you beat M Kansasii and Abscessus. That is usually no easy feat. That tells me that you are really strong and you will be ok. I I too have been diagnosed with mild pulmonary hypertension, but I am not concerned about it. Maybe I don't know enough about it to be concerned. What are they telling you about it that has you so upset? I also have COPD that my pulmonary function tests put me in the severe range, although, I don't feel like it is. I do have shortness of breath pretty bad though. I have had mac and pseudomonas, and now test negative for it. I take antibiotics, (not the Big 3) to keep infections away. My dr said I will probably need them for life. I have zero side effects, so I am ok with that. I am on no meds for the P.H. What drug to they want to put you on to treat it? I forgot to mention that I have bronchiectasis as well.

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@windwalker

@Cathln, Hi there. I am so impressed that you beat M Kansasii and Abscessus. That is usually no easy feat. That tells me that you are really strong and you will be ok. I I too have been diagnosed with mild pulmonary hypertension, but I am not concerned about it. Maybe I don't know enough about it to be concerned. What are they telling you about it that has you so upset? I also have COPD that my pulmonary function tests put me in the severe range, although, I don't feel like it is. I do have shortness of breath pretty bad though. I have had mac and pseudomonas, and now test negative for it. I take antibiotics, (not the Big 3) to keep infections away. My dr said I will probably need them for life. I have zero side effects, so I am ok with that. I am on no meds for the P.H. What drug to they want to put you on to treat it? I forgot to mention that I have bronchiectasis as well.

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Terri, thank you for answering! I am not on any meds for any of my lung ailments. The Pulmonologist said P.H it's mild, and done with an Echo, so there are better testing we have. Echos are ok but aren't reliable for checking arterial pressure. Have you had a different test for P.H.? I have no symptoms, Not short of breath, I can walk, do housework, within reason for age and arthritis. I am being checked again this week for MAC…I have only had one scope back in 2014 that grew MAC….I have lost 11 or so pounds, but lost my son, and I am having such a hard time, even 2 years later. I do get antibiotics, but only when I bleed. Cardiologist does not want to see me again, said my heart is just fine. I don't know what to think. I am worried, and lung doctor didn't seem to think it's a big deal at all…
' I am happy you are negative for MAC. Those meds can be brutal. Was on 2 IVs every other day for 9 months and 3 oral for 18 month…Now I have another, plus Bronchiectasis, and H.P.. I needed so badly to hear from someone with H.P.. Thank you so very much.

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@Cathln Hi. I am so sorry to hear that you lost your son. I cannot imagine the pain and heartache of something like that. As for the H.P., I will have to investigate that. I know next to nothing about it. I will get back to you on that. I don't recall what tests were performed for my h.p. diagnosis because I had so many tests done from morning until 4:30 every day for two weeks. That was in 2016 when I was being pre-qualified tested for a lung transplant. I will get back to you on the p.h. info.

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@windwalker

@Cathln Hi. I am so sorry to hear that you lost your son. I cannot imagine the pain and heartache of something like that. As for the H.P., I will have to investigate that. I know next to nothing about it. I will get back to you on that. I don't recall what tests were performed for my h.p. diagnosis because I had so many tests done from morning until 4:30 every day for two weeks. That was in 2016 when I was being pre-qualified tested for a lung transplant. I will get back to you on the p.h. info.

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Terri, I appreciate anything you can tell me. I can't imagine 2 doctors just saying you're ok, if I'm not. I started my cultures today to see how MAC is fairing. I have known I have had it since 2012, but no official word until 2014…I just don't want to think I might have to find another pulmonary doctor. Had the same since 2005, but in 2016 I was only given a NP. She couldn't discuss my ct scan, she didn't know how too, so I left. This new doctor thought my MAC was gone. Hense the cultures. I understand that if you are doing fine, not to treat. One doctor told me MAC is slow growing, like moss on a tree. If it doesn't hurt the tree, we leave it alone. I am upset. I thought he would at least read my reports after 2 years. I see him every 3 months. I see I'm rambling, sorry. I'm hoping the H.P. is only affecting my valve. Thank you for you help. I really appreciate it,

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@Cathln

Terri, I appreciate anything you can tell me. I can't imagine 2 doctors just saying you're ok, if I'm not. I started my cultures today to see how MAC is fairing. I have known I have had it since 2012, but no official word until 2014…I just don't want to think I might have to find another pulmonary doctor. Had the same since 2005, but in 2016 I was only given a NP. She couldn't discuss my ct scan, she didn't know how too, so I left. This new doctor thought my MAC was gone. Hense the cultures. I understand that if you are doing fine, not to treat. One doctor told me MAC is slow growing, like moss on a tree. If it doesn't hurt the tree, we leave it alone. I am upset. I thought he would at least read my reports after 2 years. I see him every 3 months. I see I'm rambling, sorry. I'm hoping the H.P. is only affecting my valve. Thank you for you help. I really appreciate it,

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@cathin Some doctors treat, others do not. I have found that interesting. Down south (ex.Tennessee) they prefer to always treat. Up north many prefer to watch and wait until it is absolutely necessary to treat. It is important to find an ID doctor who is very familiar with MAC and watches/monitors the progression of your disease closely. (@irene5)

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@irene5

@cathin Some doctors treat, others do not. I have found that interesting. Down south (ex.Tennessee) they prefer to always treat. Up north many prefer to watch and wait until it is absolutely necessary to treat. It is important to find an ID doctor who is very familiar with MAC and watches/monitors the progression of your disease closely. (@irene5)

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Thank you Irene5, When I had Kansasii and Abcsessus, I went back and forth to National Jewish in Denver. The ID doctor I had for all that time was here, I went every week, for 2 years. For reasons in family, he moved to North Carolina. He has returned, and is now my Primary doctor. Long story on his part, but he has kept his ID license and I see him every 3 months. He is amazingly thourough, and I trust him with my life. He says not to treat. I am doing ok. Now I have this pulmonary hypertension, that is a worry. I am having so much trouble doing the 3 sputum, third tomorrow. I'm sure it is still lurking there. My new worry is the hypertension.

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@Cathln

Thank you Irene5, When I had Kansasii and Abcsessus, I went back and forth to National Jewish in Denver. The ID doctor I had for all that time was here, I went every week, for 2 years. For reasons in family, he moved to North Carolina. He has returned, and is now my Primary doctor. Long story on his part, but he has kept his ID license and I see him every 3 months. He is amazingly thourough, and I trust him with my life. He says not to treat. I am doing ok. Now I have this pulmonary hypertension, that is a worry. I am having so much trouble doing the 3 sputum, third tomorrow. I'm sure it is still lurking there. My new worry is the hypertension.

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I am so sorry for your struggle. I can only imagine how hard doing the 3 sputum days are for you, especially with pulmonary hypertension. I am so glad you have such a wonderful and thorough primary care physician. I will keep you in my prayers.

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@Cathln

Terri, thank you for answering! I am not on any meds for any of my lung ailments. The Pulmonologist said P.H it's mild, and done with an Echo, so there are better testing we have. Echos are ok but aren't reliable for checking arterial pressure. Have you had a different test for P.H.? I have no symptoms, Not short of breath, I can walk, do housework, within reason for age and arthritis. I am being checked again this week for MAC…I have only had one scope back in 2014 that grew MAC….I have lost 11 or so pounds, but lost my son, and I am having such a hard time, even 2 years later. I do get antibiotics, but only when I bleed. Cardiologist does not want to see me again, said my heart is just fine. I don't know what to think. I am worried, and lung doctor didn't seem to think it's a big deal at all…
' I am happy you are negative for MAC. Those meds can be brutal. Was on 2 IVs every other day for 9 months and 3 oral for 18 month…Now I have another, plus Bronchiectasis, and H.P.. I needed so badly to hear from someone with H.P.. Thank you so very much.

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@Cathln Hi there. I am posting a link from Mayo about H.P. for you to read. I had all of the tests done mentioned in this article to determine my H.P. I was told to take a baby aspirin every day to keep my blood thin. I was told in 2016 that mine was mild, presently, I have all of the symptoms that would put me at a Level III. I am glad that you brought this up because it has reminded me to take the baby aspirin and to ask about my dr in June about my H.P. Here is the link: https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/diagnosis-treatment/drc-20350702

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Terri,thank you so very much. I amhoping for more testing. I need to know even if I have no symptoms. I appreciate your help.

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@irene5

I am so sorry for your struggle. I can only imagine how hard doing the 3 sputum days are for you, especially with pulmonary hypertension. I am so glad you have such a wonderful and thorough primary care physician. I will keep you in my prayers.

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irene5, Well I finished them I don't think the last one was very good. I haven't done any of those in 14 years at National Jewish. I am actually sore today. Only had a bronchoscopy once in 2014. Thank you for your prayers.

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