Azithromycin: "To do or not to do."

Charlie, I just realized that we, as a group of folks who have the distinct honor of living with lovely illness are our own best council. We are constantly reviewing all the possible ways of doing our best to stay healthy and sharing and comparing with one another as we go along. We are the ones with the skin in the game. We have no better council.

I am glad you were able to resume the Az. Keep me posted if you will about how you are doing on it.

Best of times,

Russ

Hi Russ,

You are so right about us being our own best council and this site is so very helpful.

I like your attitude of looking at this illness more postively and accepting that we have it. Of course still doing our best to get better and live the most comfortable way we can, but also accepting the disease.

In trying to fight the reality that I have bx, I just get sad and feel sorry for myself, but on the days where I can accept bx and all its hassels, I feel so much better - more free and able to enjoy myself. 

It's a work in progress - changing my perspective and embrasing bx, but I know it's better for me when I do.

Ida

Ida, so glad to hear your thoughts about this. I wasn't  sure that others would share my view of the situation. Reading your letter was a soothing balm for me. That's the point I am getting to get to also; the one that you experieince: acceptance of the illness and a feeling of freedom and joy.

Treating the BRX as a companion, gives me a feeling of calmness and wholeness for some reason. 

Glad you find this to be helpful to you. 

Best

Russ

Thanks Russ; that is beautiful; "more like a companion."

I'm probably not as far along on this path as you, but I'm definitely trying and I know it is the best way for me to think, so I'll keep at it and hope to eventually be able to accept - even enjoy - WHATEVER comes my way.

Thanks again,

Ida

Thanks Ida, it seems easier to live with a friend than an enemy, even though that friend is making your life more difficult than necessay. 

Ida, can you tell me a little about your experience so far. I've pick up a few glimpes here and there in our topics board. 

Be glad to share about mine if you are interested.

Best

Hi Russel,

Be glad to: In 2010 I had an episode of coughing up blood, which led to a scope, ct scans, etc, but nothing was discovered.

Then again in 2012 I coughed up blood and went through the same procedures, which this time showed that I had mild bx in my lower right lung.

Unfortunately I had a pulmonary doctor, who was not very familiar with bx and took it way too seriously. She was the panic type and made it out to be a lot worse than it really was. I finally changed doctor, but some damage had been done in that I was very afraid that my bronchiectasis was going to get the best of me and that I continually had to do physio -"just in case there was more phlegm in there."

I'm getting more relaxed about it with time and I try to cut back on all my unnecessary physio and the fear that there might be more in there.

Another doctor recommended several books to me and among them was the author Byron Katie and her books really helped me and this is how I'm improving and working on developing your attitude of joy and acceptance for our situtation - no matter what it may be. 

Most days I am able to realize that the more I fight reality the more I suffer and that if I can just accept and enjoy my reality, I will feel free and able to enjoy myself. 

I would love to hear your story and thanks for sharing your great attitude. It's great to know that you are going through similar experiences and that you are able to feel so good about it and I believe others might benefit from your great perspective as well. 

I hope you will keep telling us about how you manage to develop and foster your awesome attitude and perspective.

Ida

Ida, thanks for sharing your story. I have learned so much from others on our site. In some ways I trust the members of the site more than my doctors. I was diagnosed in 2004 with a cough and sputum production. All sorts of texts were done and finally recieved a diagnosis of BRX from and ENT doc,confiremd by Cat Scan. I'm an RN and don't even remember learning about  BRX in nursing school. Looked it up, but my asthma was being emphasized, so I really didnt think anymore about for several years. My doctor did not mention all the protocols that we use by members on our site.

I felt really fine except for the chronic cough and sputum production. I was having respiratory infections about 3 or 4 times a year, mostly bronchitis, with an occasional pneumonia for which antibiotics did the trick.

The other thing is that I was not having problems with fatigue and was excercising on tha regular basis at medium level.

In September 2014 I was hiking on the Pacific Crest Trail  in California in the mountains at 10,000 feet. Six weeks later I had become really sick, with frequent inections and extreme fatigue. 

I first thought Valley Fever ,that is caused by a fungal organism in the soil in California. But as I worked my way through the doctors I finaly landed agian with the Droctor that diagnonsed the BRX, She and a partner also diagnosed me we chronic Sinusitis. From there to sinus surgery and then working to get better. ( I was told by my ENT doctor that BRX and Chronic Sinusitis are connected in that fluides are interchaged betwwen the lungs and the sinuses.

I had sinus surgery in November 2014. Sense then I have been slowly putting my regiem of care together to keep me better. With monthly infection from November until April I deciced to start AZ. I'm not always a great patient. My pulmonary doctor would not prescribe it so I went to infectious disease. The AZ has dramatically changed my health. Being sick all the time is not anybody's idea of a time. 

I'm attempting to travel and have made some short trips by car, want to be able to take long trips. I have nasal lavage twice a day with steroids and then asthma meds and saline solution daily. I usually can only cough up sputum in the evening. Last couple of days I have more sputum production. I stoped the AZ 500 for a few days because I thought it was too much.Just got a script for AZ 250, which is what everyone on our site is taking. 

So that's where I am for now. If you have any ideas about traveling please share them.

Thanks again for sharing,

?Russ

Hi Russ,

I hope the AZ 250 will give you some relief and that the 250 will be the right dosage for you. It always feel better when less will do the trick. 

Although i live in California and hike a lot, I have yet to do any part of the Pacific Crest Trail. I'll have to put it on my bucket list.

I do plan to travel more next year when I fully retire. However, I'm not too keen on long airplane flights. I fear catching something and I truly don't enjoy being stuck in a plane for many hours. Anyways, I will have to work on that .

I totally agree with you that this site is fantastic and the members are so great. I love all the good advice and the feedback. So thanks to all of you for always being there. Sometimes it's even good to know that there are others out there coughing themselves silly and going through the same stuff.

Thanks for sharing, Russ and I hope you will be able to travel longer distances soon.

Ida

Hi Ida, The PCT is great and can be done at any section, like the John Muir area which is a bit of Heaven I hear. 

My niece lives in Portland Ore and that will be my next trip after taking a short boat trip to the Bahamas. I'm testing out the need I have to have a stable area like a State Room on a ship where I can rest and take all of my meds, excetera. Some days I still stay in bed until 10 or 11, but then I have energy the next day. Trade off.

Good hearing from you.

All my best,

Russ

Hi Russ,

My son lives and studies in Portland and it's just such a wonderful place to visit. The people there are great, the food is fantatstic, the scenery is beautiful and the air is so fresh and clean. I hope you'll enjoy your visit there.

A cruise is a great idea. I took one to Alaska and it was much better than I had anticipated. And yes, it was good to have a private cabin to take care of "my business"!!!

Have a great time on your cruise to the Bahamas and yes I will try to get hiking on the PCT. Also, the area around Portland has great hiking and the Multnomah Fallss is worth a visit.

Best,

Ida

Ida, thanks for all the great info on Portland. Will be great to get out there. And I see my thought about having  a place on the ship to rest and take care of my pulmonary issues is a sound one.

Keep me posted on your hiking on the PCT or other areas if you will.

Staying well and exercising is a big issue for all of us but really important. I'm glad I found this group.

Best

Russ

 

Hi Elizabeth, you sound like you are doing well. I'm wondering if your plan was to stay on AZ for a specified period?

I noticed above that both Dale and Ida have been on the AZ for several years now and doing well without complications. My plan right now is to stay on the AZ. 

Three weeks ago I went off of the 500mg dose and stayed off 7 days before starting the 250mg dosage. My reasoning I think was a bit faulty. I should have started the 250 right away becasue I began to have an exerbation and now I'm on a round of steroids butfeeling better.

Keep me posted on your on progress if you will.

Best

Russ

 

Hiya Russ,

Well been beck on the AZ now for a month and as most people that are on it say, it works great, for me 100% better,as apposed to without it,for me the coughing is almost gone which makes the sputum much less, I mean still there as it still is making it but a big difference,not as tired and more energy.I hope to stay on it for as long as they keeping letting have it,really don't want to go back as before.

Hope it works for everyone as it has for me.

Regards,

Charlie

Hi Russ , will keep you posted on my progress , only been on the drug orweek , still coughing but not as much , how long befor you felt  any benefit ?lilke you I am a RGN (retired) I can remember nursing patients with BX , I feel there is more awareness of the disease now and more people are sharing their experiences . I hope to start with the pulmonary rehabilitation programme soon looking forward to more energy and less tired , although I do ramble every week and belong a performing arts group doing a lot of singing . Great to talk 

Regards 

Liz 

Liz, I think it was about three weeks into the Az when I noticed I was not having more exacerbations. That was the reason I knew that the medication was helping: I stopped having exacerbations.

It's funny, but I don't ever remember having a patient with BX. I had never heard of it. Thinking back I have had precurser symptoms for years, starting with pneumonia at age 12 and continuing for years with respiratory infections, asthma and then Chronic Sinusitis. (I have read that this is at least one cavalcade of symptoms in BRX. 

I also am in performung arts. I belong to a company called the The New Movement in New Orleans. We perform improv and scripted comedy.

Good luck with your Pul. Rehab.

Best

Russ

Russ

Hello Russ encouraging feed back , I was diagnosed with TB in my late twenties whilst nursing , due to that I then started wth BX later on in life because of the scaring the TB left on my lungs .

Do you find your performig art group helps ? I find the singing helps especially with the breathing exercises we do .

Regards

Liz 

Hey Liz

I sing in a band occasionaly and have to stop to cough which is embarresing but otherwise I am OK due you have the same problem?

Dale

Hi Dale , yes I do regularly, very embarrassing fortunately the group are very understanding , sometimes have difficulty reaching a high note but otherwise ok ,feel it helps do you ?

Regards 

Liz 

Hi Liz

Yes I really believe it does help,but it does get embarresing when the audience does not know your problem.

Hi Dale That's true , it's like having to excuse yourself from the table wen out having dinner with friends to go to the bathroom for a cough(mind I might come back with aG&T then they think I have been to the bar ah ah ) seriously we can only hope we have understanding audience and friends  .

Liz, I play piano and sing mostly at home but in talnet shows when I was working and now at church. Our choir master is trying to get me in the choir but I dont think I will have the energy. We'll see. He is really good and would make me a much better singer I'm very sure.

At Improv I think our classes and shows are a big help. A lot of energy and fun. Whats not to like. We will get to write for scripted shows. which my partner and I were doing for a company called Shoot My Reel the last two years. Its all just so much fun. We  also have a web TV show witch I can tell you about later if you are interested. We are hiatus for now and need to retool the show.

What breathing exercises do you do for singing? Does it tie into your breathing treaments for the BX?

What kind of music are you doing?

I glad to know that we all have rather full lives bringing along our great friend,BRX.

More best,

Russ