My sortness of breach is getting worse.

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I am new to this forum but I have been living with Bronchiectasis for more than 15 years.  I have been on occasional courses of Cipro for pseudonomas but mostly I have managed by eating healthy food, exercising and taking supplements plus using nebulized sodium chloride to bring up muscus.  Gradually I have been having more difficulty breathing and now I may have to start supplemental oxygen at night.  This depresses me because these things never get better.  I have been looking into stem cell therapy but it is expensive and I don't know if it would help.  Has anyone tried this or does anyone else have experience with chronic shortness of breath?

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  • Posted

    Hi louise. I  live in the uk and was diagnosed with Bronchiectasis 6 years ago. I was told it was very mild and not to worry. I can now feel tightness in my chest and I struggle more to walk the dogs. I get very depressed because I, like you know its not going to get any better.

    ?I have constantly researched treatment to if not cure, then slow down the progression of the disease. I was told when I was first diagnosed that it was good that I had my diagnosis early, but when I asked what I could do was told "nothing you just have to wait until it gets worse"!

    ?Anyway I registered with Bronchiectasis news weekly, and get weekly updates on research. There has recently been a study (with very limited numbers) of COPD patients including those with Bronchiectasis, and stem cell studies showed that there was actually new healthy Broncial cells replacing the damaged cells.

    As I say the study was only small.

    There is a lady on Health unlocked who had stem cell therapy in the US. Initially she felt no improvement but now feels much better and reports that the doctors are amazed as her lung function tests keep improving.

    ?I am considering the same therapy, my reasoning being that if you go earlier the progression may slow?

    ?The Lung institute in the US do this therapy for $10000. I am seriously considering going. The only problem is you have more therapy 3 and six months after the initial treatment, and the cost of flying to the US twice more is a little daunting. I am considering getting a private Consultant over here who may administer the other treatments. Don't know if this is a viable option but I am really feeling that I need to try this now.

    ?Register with Bronchiectasis weekly and search stem cell therapy. There have been other stem cell studies  I think one is in North Carolina with good results. I do realise that stem cell therapy is in its infancy, but just pray that this kind of therapy wil buy us some time, while further studies are carried out.

    ?Anytime you want to chat I am here.

     

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    • Posted

      Hi Sue,  How wonderful to hear from you that you are struggling with the same problems and are thinking about stem cell therapy too.  I have been in touch with the Lung Institute as well.  They have 3 clinics in different cities in the US.  I was not aware that they recommend followup treatment in 3 and 6 months.  I thought it was just the one treatment.  They quoted me a price of $800.  My doctor said not to trust any private clinic but regular medicine does not offer an alternative yet and it may be too late for me by the time they do. I looked into a clinical trial by the University of Miami.  They just filled the last slot of the first segment when I called.  The next one is not for another year.  Also, they use bone marrow from donors rather than your own blood as the Lung Institue does.  I was wondering whether there are not any stem cell treatments out of Germany.  They are supposed to be in the forefront of alternative treatments.  I am actually from Holland but I have lived in the US for most of my life.

      Again, good to hear from you but I've got to run.  I'm meeting some friends for dinner.

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    • Posted

      Hi Louise. I just wonder can anyone recommend a flutter device. I seen one from Amazon which costs £96? Seems a bit on the pricey side. Are they all as good as each other?

       

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    • Posted

      Hi Sue: I could not answer before because the internet provider I use said it was an unsafe connection but today it worked again.  I use an Acapella flutter valve as well - the green one.  I do not have a dish washer so clean it under the tap after I use it.  I put a small drop of dish soap and rinse it under running hot water and then shake it out and air dry it.  I have had it for years and it still works well.  The person who taught me to use it thought the manufacturers instructions for cleaning were a bit exaggerated.  The most important thing is to air dry it.  The Lung Institute sent me a new research paper.  I have not read it yet,  Still thinking about doing their treatment.

      Best.

      Louise

      Let me know how you do. 

       

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  • Posted

    Sounds like you’re a well seasoned vet in this war, but my doctor at Stanford will recommend inhaler for dysnea. So sorry it’s sounds like you are struggling and with good reason. Hang on and keep praying for stem cell funding breakthroughs!
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  • Posted

    Louise,

    I am the one that Sue was referring to. I had the stem cell treatment two years ago this past Dec. The first year after having it done, I really did not notice an improvement. It have been only in the past year that I have noticed a big improvement. A year after the treatment, I received a call from the Lung Institute asking about my health and if I wanted to have another treatment. I declined, because at that time, I wasn't feeling much improvement and, or course, the cost.

    As Sue stated, it's been this past year that I have felt so much better. I have very little shortness of breath, I've been able to decrease my prednisone (I was on 40mg per day for years, and still feeling miserable, now I'm down to 5mg per day). I use my nebulizer twice a day for maintenance, and rarely use my emergency inhaler.

    I'm a 69 yr old female and was diagnosed with BX about 7 yrs ago, but I have had breathing issues for the past 30 yrs.

    I retired from a stressful job 3 yrs ago. I enjoyed my job and they were very understanding of my health issues, but there were times that I put my job before my health.  Two years ago, we moved to an area of the states that has a lot less air pollution. So I don't know if these factor into the improvement of my health.

    What was once a major setback in my day to day life, is now only a minor issue. Since I had the treatment, I have not had an ER visit and/or hospital stay. I have not had pneumonia or a bronchoscopy (the 2 yrs before the treatment, I had from 4-5 bronchoscopies per year to clean out my lungs).

    I exercise, try to eat healthy and take my meds.

    Please let me know if you have any questions, Beth

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    • Posted

      Hi Beth. Hope you don't mind me using you as a ray of hope. I am so pleased you remain well. To say this awful disease  ahs gone from a major problem to a minor one is absolutely fabulous. Hope you remain well. God bles. Sue.

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    • Posted

      Hi Beth.  I just wrote you a long reply and suddenly it vanished.  I must have clicked something wrong.  Anyway, thanks so much for your long reply.  How wonderful you are feeling better.  But as you say, it may be from your change in circumstances rather than the treatment.  Did you ever hear of such a delayed response before?  Which of their clinics did you go to and did they use blood or connective tissue. I am 75 and have been retired for 10 years.  Apart from the BX I am pretty healthy.  I manage getting out mucus with the nebulizer, the flutter value and exercise.   Just now my doctor ordered this "vest" that should help too.  Do any of you have experience with this?  My main hobby is birdwatching and get a lot of fresh air doing this.   It is hard to not be able to do the things you used to like walking at a good pace or being in the mountains.  I feel stem cell treatment is my best hope.  You must have been pretty disappointed when it seemed not to have worked.  Keep enjoying your improvement.

      Louise

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    • Posted

      Louise,

      Good to hear from you.  I went to The Lung Institute in Nashville, TN. We were on our way to Florida and this was on our way.  They use your own stem cells. They remove blood and bone marrow from you. Then remove the stem cells and inject the stem cells back into your body. The theory is that the extra stem cells go to the areas of the body, the lungs, that need repair. You can sign up for a free webinar that explains it all.

      I also have a percussion vest. I've had it for about 10 yrs. It does help to loosen the mucus. 

      I can walk and go about my daily activities with little or no shortness of breath. But, if I'm really active (we were removing sod and carting rocks in our yard today), I notice that I have to stop every so often to catch my breath. But, I'm soon to be 69, so age may have something to do with it. I started quilting a few months ago. I can be on my feet cutting for several hours and then walk from the sewing machine to the iron for several more hours without any problems.

      We just came back from a trip, did a lot of walking. I was able to keep up.

      I'm just enjoying each day as it comes, not knowing how long I'll feel this good.

      Beth (I also take Turmeric w/pepper each day for it's anti-inflammatory properties). 

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    • Posted

      Sue,

      As I mentioned before, I don't know if the stem cell treatment helped or not. 

      I do know that every person responds to different meds differently. If you feel that what the doctor is having you take is not helping. Let him know. There are dozens of meds and it's a matter of finding the right mix.

      Because of this forum, I started questioning my specialist. He tried me on several different meds, some didn't help and some did. Also, I take Turmeric w/pepper every day for it's anti-inflammatory properties.

      Beth

       

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    • Posted

      Sue,

      As I mentioned before, I don't know if the stem cell treatment helped or not. 

      I do know that every person responds to different meds differently. If you feel that what the doctor is having you take is not helping. Let him know. There are dozens of meds and it's a matter of finding the right mix.

      Because of this forum, I started questioning my specialist. He tried me on several different meds, some didn't help and some did. Also, I take Turmeric w/pepper every day for it's anti-inflammatory properties.

      Beth

       

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  • Posted

    If you contact Beth on this website, she can tell you about stem cell therapy because she has had it.

    Do you use nebulized saline at will?  I take it with albuterol, but my doctor limits it to two times a day.  My mucus is getting very think and it concerns me.  I was hoping to try saline alone to get the mucus going.  No sure if it is helpful or not. Let me know your experience with it.

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    • Posted

      Hi Mary Ann.  Thick mucus is sometimes a problem for me too.  I take nebulized saline once a day and do postural drainage through yoga and the flutter value also. I am not sure which one specifically helps to thin the mucus.  In the past I used glutathione inhalation in the nebulizer but the alternative doctor I obtained it from no longer sells it.  That was a few years ago when my symptoms were much less.   I read that the Smart Vest, which my doctor just ordered for me also helps to make the mucus less thick.  AditionallyI use an herbal tea to thin phlegm but it takes bitter and consists of several herbs which I have made up in a herb shop.  If you are interested I can tell you the 7 ingredients. 

      Yes, I heard from Beth.  Her experience is interesting.  By the way, can you read Beth's reply to me or are all the forum responses just for the person one is addressing?

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    • Posted

      I did see something from Beth to you, but I didn't read. I think she said that she wasn't sure if it really helped or not. She is very active and I am sure that has made a big difference in her Bx stability.

      Blessings,

      Mary Ann

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    • Posted

      Hi Mary Ann.  My pulmo prescribes a 7% saline solution but I also use a .9% saline solution I get on the internet.  I combine this with glutathione, which is a supplement that is especially beneficial for the lungs.  Check it out.  I can give more details if you are interested. Anyway, both seem adequate in thinning and bringing up the mucus. In the past I just used the glutathione inhalation but my supply dried up. I was much better then but also younger.  Who knows.

      Louise

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