Advice needed for my mom.

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Hi all! My mom got diagnosed with bronchiectasis a few years ago. This last year she has had infection after infection. The longest she goes without is a week or so. She has flu-like symptoms, coughs up tons of blood, and has shortness of breath (so much that talking is difficult). She lives in Arizona and all her five children live in northern CA/Oregon. This makes it hard for us to check in on her. So far her pulmonologist just gave her a standing order for antibiotics; no other treatment. Us kids are worried sick and wonder if she shouldn't be admitted to a hospital for IV antibiotics, if the oral ones are not working.

How far along do you think her disease is? Should we be freaking out and insisting she move closer so we can help? 

Thanks in advance for your input!

Jenny

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  • Posted

    Hi Jenny, I'm still kind of new to this forum. I'm sure that some of the others can answer your questions better. I will say that there are other things available to help your mom aside from standing antibiotics. There are various inhalers, nebulizers, and airway clearance devices like flutter and the Smart Vest. You may want to get your mom's permission to talk to her pulmonary Dr, or possibly have her see a different pulmonary Dr. Good luck with everything.

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    • Posted

      Thank you so much for your reply. She is seeing her regular pulmonologist on Wednesday and I'm going to suggest she ask about all the other treatments you mentioned. smile She also has an appointment in March for a specialist in Phoenix.

      She was hoarse today from all the coughing and gagging up blood. sad

      Best to you! 

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  • Posted

    Hello Jenny,

    I can't help with the question as to how far along her disease is; however, has she been using any method to expel the mucus since her diagnosis? If she is doing nothing about working on getting the mucus to come out, she will continue to get infections.  The acapella or some chest wall oscillation is the answer to the mucus problem.  Sometimes, the doctors will give the patient a full time antibiotic to keep the infection away.  

    I have asthma along with the Bx, so I would not move to AZ.  It is too dry, I believe. You didn't mention her having asthma, but if she does, allergies could be making her worse. However, I doubt if a pulmonologist would ignore asthma symptoms that may be causing her lung distress. It is always a good idea to seek other opinions, especially if you have such concern. It may be a good idea for one of the children to stay with her 24/7 until she gets the infection under control. As you know, a simple blood test can detect infection and her need for antibiotics or a change of antibiotics.

    There are plenty of Bx people who take the antibiotic all the time. It is possible one antibiotic is not working for her and she may need to go on a different one.  I didn't do well on Z-pak after several tries so I went to Doxycycline and that worked great.  I haven't had an infection since that dose.  What works for me may not work for her, but she needs to try a different antibiotic if she is not stable with a certain one. 

    Continue to post on here to get to the bloggers who have had Bx the longest and have the most valuable suggestions. I know there are oscillation devices that can make life easier for her if she is having difficulty with getting rid of mucus. Don't hesitate to request a better device for her.

    Blessings to you for being concerned for your Mother. I pray that your Mom gets stable quickly. 

    Mary Ann

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    • Posted

      Hi Mary Ann,

      I also don't respond the Zpack. Doxycycline also works great for me. Levoquin used to work, but not as well lately. It's nice to hear someone else talk about the Zpack not working for them, it helps me feel normal.

      Laurie

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    • Posted

      Hi Laurie,

      I deal with anxiety at times when I think I am not normal and that this is a nasty disease that is going to take me down.  But then again, I know that I am still here and still holding my grandbabies. What a treasured feeling that is. 

      I love this site because we all have similar symptoms and talking about what works and what to avoid is very helpful in finding a comfortable spot. 

      What I keep hearing is that we must take control of the mucus before it goes to infection. Then we need to eat, sleep and exercise well.  

      Thanks for the note, Laurie. 

      You can always private message me if you want to talk more. Stay healthy and enjoy those healthy days.  

      Blessings,

      Mary Ann

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    • Posted

      Hi Mary Ann! Thank you for your reply!

      No, she is doing nothing else, but we hope to rectify that soon. She is seeing her regular pulmo on Wednesday and is going to bring all those other treatments up. How often should she get a sputum test? For every infection? How about a blood test? She has an appointment in March with a specialist and we are very hopeful that he will be more proactive. We are planning to send one of us kids to be with her for that appointment.

      She was on antibiotics nine times last year: Cipro, Zpac, & Amox-Clav. She says Cipro no longer works. 

      She also has asthma. She has an inhaler for that. She is a tough-nut and never really lets on how sick she is. Us kids have to sort of weedle it out of her or decipher her "I'm doing OK." So recently when she said that she had days when she couldn't talk because of shortness of breath and admitted to feeling terrible, we know that she is not well at all.

      Blessings,

      Jenny

       

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    • Posted

      Hi Jenny,

      Very happy to hear you have a good plan to get more professional help and that one of the sibliings will be there to accompany her. It is great that two people will be there to listen. My husband always accompanies me so that at least one of us will remember the instructions.

      It is a good idea to take a notepad or a tablet for reference later.

      Try to get the doctor to show her how to use the accapela because that is usually the first device they give, I continue to find better ways to obtain more success in expelling mucus. You tube has many videos for instruction on these devices....better than what the doctors offer sometimes.

      Hope all goes well for your Mom.

      Blessings,

      Mary Ann

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    • Posted

      Hi, Mary Ann,

      You mention asthma and AZ and don't go there.  I'm in Florida with asthma and wishing for AZ. What can u tell me about how dryness affects you with the BX too.  I have no idea if I'm better in FL - I seem to do pretty well unless I'm clogged up and very congested nasal and lungs but when I visit out west like NV and driving west I have zero problems.  The dryness for a week or two is hard on my skin but not the lungs.  I seem to breathe more clearly - is that good description - as if the lungs are functioning better and can draw a deeper breath maybe.  I have both my kids living in NV and who knows one day if that won't be a choice for me so any info would be good to have.  Years ago drs. used to recommend going to AZ for asthma.

      By the way I note you tried the Z-pak and Doxy fixed you up.  Same thing happened with me with pneumonia.  I had the Z-pak and Augmentin - not sure which one they took me off and added Doxy. and it did the trick. 

      Look forward to hearing back from you.

      Tabatha

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  • Posted

    I agree with the other responses. She should be doing more than just taking antibiotics.

    Inhalers, nebulizers, flutter valve and a smart vest all come to mind.  Also, she should be shown how to clear her lungs by posturing and the use of gravity to bring up the mucus. 

    Since she lives in Az and feels that her doctor is at a loss, there's the Mayo Clinic in Az that would be a great help in treating her. My doctor in Northern Indiana was at a loss and referred me to Mayo.  I went to the one in Minnesota (my daughter lives in Minneapolis, so I was able to commute to Rochester the three days).

    It will take months or even years to find the right mix of medications and exercises, so if her current treatment isn't working, have her specialist try something different.

    Also, there are alternatives to just taking medications: Essential oils, certain vitamins or minerals, check into food allergies that may increase the mucus. Some people on this forum, limit dairy products or grain products. Some limit processed foods.  I take tumeric, with pepper, every day for it's anti-inflammatory properies. Manuka honey for it's antibiotic properties.

    This forum and the internet are great resources for receiving ways to manage this illness.

    Beth

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    • Posted

      Thanks for the terrific input. We are going into action mode. She is not doing well at all. She also has chronic seizures from a brain tumor (it was removed several years ago) and is on lots of seizure medication. She gets tired of having problems, so sometimes she just ignores them. Her Bx condition is so bad right now, she can't ignore it. 

      In March she is seeing Dr. Walia in Phoenix. We are hoping he will be much more proactive than her current pulmo.

      Best to you,

      Jenny

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