MAC (Mycrobacterium Avium Complex)

Kathy1813 · 03-01-2006, 04:48 PM

I am slowly trying to recuperate from my recent illness. I just can't seem to get rid of this awful cough. The cough I have is very productive and I get up an awful lot of stuff, but it wears me out. I haven't been using the Acapella very often because I didn't think it helped me anymore than just coughing like I have been doing. What do you all think?

Sharon - I have a few questions for you. I live about 8 hours from Denver so I wouldn't have any problem having one of my sons drive me to NJH if I could get in to see them. My only problem is this - 3 years ago when the doctor started me on those 3 medications, I got so so sick and couldn't eat and lost 25 pounds. If they wanted to start me on some other strong medicines and they made me sick, I just can't afford to lose any more weight. I had gained some weight, but after being in the hospital recently and being so nasuous, I lost all that I had gained. I just can't afford to lose any more. I am trying to eat more each day, but can't seem to gain any weight. Anyway, this is my prediciment now. What do you think? Should I call anyway? My lung doctor said he would even call for me or at least would work with them if I decided to go.

Have you had any more blood work done regarding your white blood count?

Kathy

grammy1954 · 03-01-2006, 08:27 PM

Kathy, I think you would be very pleased that you went to NJ. I met some severly ill patients with MAC while I was there in Oct. The NJ docs are super doctors & I believe if anyone could help you with this disease the NJ docs would be the doctors to accomplish it. Why don't you let your doctor set up the appointment for you if he is willing to do that? He can also fax or send all your medical records to them. The NJ lung line nurse will call you & give you a 30 minute interview of questions such as how long have you had the disease, what was the treatment, insurance info, etc. When the lung line nurse calls you she will tell you to expect a package in the mail which will detail all the info you discussed on the phone as well as tell you what to expect at the NJ hospital & what to bring. You will have to take a cd of your ct scans & xrays. The lung line nurse will stay in contact with you until she gets everything she needs for your visit.

Please call your doctor tomorrow to call NJ lung line & set you an appointment.

sugzey$ · 03-07-2006, 09:42 AM

Hi Sharon, Peggy and all,
Looks like they have closed our old threads so I have subscribed to this new one so I can keep up with how everyone is doing. I have been real busy lately getting things ready for a yard sale, visiting out of town, etc.

I haven't seen a doctor since I posted last on this board. If you will remember when I went to my second and last visit to Duke in Jan. the Dr. was supposed to call my Dr. here in Raleigh and ask him to do another bronchoscopy and that is the last I have heard. I coughed up some blood when I was out of town recently and I am coughing up more stuff at night and during the day than I was so I think I will call my Dr. here in Raleigh and set up an appointment for next week. He will probably take an X-ray to see how much it has changed from the last one he took before doing anything else. I also have just a dry cough a lot now. I want a bronchoscopy done to check on the status of the MAC. I can tell by the feeling in my chest that something is getting worse...must be the bronchieactasis. Haven't been walking as much as I would like. Have the acappello that Dr. prescribed but haven't tried it yet. Am not on any medicine for the MAC at this time. Will let you know what the Dr. says when I go to him.

I hope all of you start to feeling better. Don't reckon there is any such thing as getting completely well from the MAC and the bronchieactasis. Take care,
Ann

grammy1954 · 03-07-2006, 08:53 PM

Good to hear from you Ann. Sorry to hear you are having some problems. Before my MAC was ever diagnosed, I had very dry coughs at night and my coughs sounded like a seal barking. I sure hope your MAC isn't worse but you know when something is wrong with your body. Noone knows your body better than yourself and if you think something is wrong then chances are you are correct just as I was about my lungs in March 2005. I knew my MAC was active again because of the chest pains & exhaustion & I was right.

I have had an exhausting weekend. My Dad passed away Sunday and we buried him today. I live 2 hours from my Dad so I have made 4 trips up there in the last four days and the sorrow was exhausting in itsself but that 4 hours of driving a day has really made me tired. In the last 15 months I lost 2 brothers and my Dad, hopefully, death will stay away from my family for a while.

Take care, Sharon.

sugzey$ · 03-07-2006, 10:27 PM

Hello Sharon,

I am so sorry to hear about your dad's death. It is very tiring at times like that. My dad died in 1987 and mom died in 1997. She lived with me until her death. I have one aunt living, some cousins and 5 brothers and sisters and my son and his family. I think a lot about how it will be when one of my brothers or sisters dies. If I live long enough I also think about how I might not be able to even visit them. Oh, well, that's part of life. Guess we are real lucky to have lived as long as we have. I was also sorry to hear about Dana Reeve today.

Made me an appointment today with my lung doctor for next week. I guess a bronchoscopy will be coming up soon. I would like to know if the MAC is still hanging around. If so, I will go back to Duke but to a different doctor who specializes in MAC.

Get some rest and I'll be back in touch soon.

Ann