Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

@colleenyoung

Welcome to Connect, @shiell. You’ve found a great group of people here in the MAC & Bronchiectasis group. Kudos to you for having read everything the members have written!
Let me introduce you to @pamelasc1 and @jentaylor who also have or had pseudomonas. @windwalker has experience with tobramycin.

You may wish to also join the main MAC/bronchiectasis discussion here: http://mayocl.in/2cwX36M
We look forward to getting to know more about you.

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Gosh, I hope it wasn’t the tobramycin that caused that. I don’t see how that would be likely.

REPLY

Just checking in.
Posted by @windwalker in MAC & Bronchiectasis, 2 minutes ago
Hello everybody. I have not posted in a while, so I am just checking in. I will be missing in action for the next month as I will have a steady stream of visitors until mid April. I am still doing exceptionally well. Still active and making lots of jewelry. Still on my alternating antibiotics of Cipro & Tobramycin. Just working at staying healthy. Go back to the Mayo June 20. I hope that each and every one of you are doing well also. I read the posts and it seems like you all are on top of things. Hugs! – Terri M.
++++++++++++++++++++++++++++++++++++
@windwalker Terri, moved you also to the Pseudomonas Page .. we NEED such good news on the Pseudomonas Page! SOOOO Happy to hear from you that your Pseudomonas is doing so well! Enjoy your visitors and let us know how your June appointment goes! Hugs to you! Katherine

REPLY

As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain fog/rapid weight loss of 6# .. I am small anyway so 6# was a lot/terrible coughing. Was in bed or a chair for essentially TWO months! I was then diagnosed with Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi 4/5/17.

I was prescribed: 4/5/17 -28 DAYS CIPRO 2X PER DAY resulting in zero affect .. 4/26/17 I STARTED INHALED TOBRAMYACIN for 28 days on then 28 days off .. for 3 cycles .. a total of 6 months.

Things I’ve learned so far on this journey that I felt I had to share so another Connect Member might profit and avoid what has happened to me. Hugs and greetings to all. I am with you in spirit! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
*REQUEST AN APPOINTMENT ASAP WITH A GOOD RESPIRATORY THERAPIST FOR:
a. proper use of inhalers that would be best for you
b. proper use of inhaler spacers (for YEARS I was NEVER advised to use a spacer with my two inhalers!!)
c. proper use of saline solutions inhalation to help with mucus
d. proper use of Aerobika with saline inhalation

*KNOW THE PROCEDURE WHEN SICK:
a. At Mayo Clinic when sick you are to call the NURSE rather than the Appointment Secy. Having never been so sick before I did not know the procedure and called the Appt Secy
b. I waited a full month for an appt meanwhile getting sicker and sicker.

*IMPORTANCE OF LUNG CLEARANCE IN USE OF TOBRAYACIN (and THE ENTIRE JOURNEY OF YOUR LUNG HEALTH!)
a. use Aerobika® Oscillating Positive Expiratory Pressure Therapy with Sodium Chloride Neb Solution
IMPORTANT THAT I WAS NOT TOLD.. only read about: Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.

(you will need prescription for Sodium .. using with Neb) (AEROECLIPSE XLBAN 6 MONTH REUSABLE Nebs) (good prices @ http://www.aerobika-therapy.com/order-today http://www.shopnebulizer.com/p-26249-monaghan-aeroeclipse-reusable-breath-actuated-nebulizer.html)

b. use Aerobika ALONE for good lung clearance .. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
c. prepare Tobramycin antibiotic then use recommended Pari LC Plus and Nebulizer Pari LC
https://www.healthproductsforyou.com/p-pari-vios-lc-plus-adult-aerosol-delivery-system.html
IMPORTANT THAT I WAS NOT TOLD.. only read about:
Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.
d. use Aerobika ALONE for good lung clearance.. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
e. rinsing well with Colgate Peroxyl Mouth Sore Rinse after each Inhaled Tobramycin antibiotic session to take away the taste and then using Arm&Hammer PeroxiCare Toothpaste to ward off oral thrush.

I personally believe (and I will never be convinced otherwise) that the reason I got the 3 bacteria Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi is that NO ONE EVER stressed to the point of getting it into my head .. the true importance of LUNG CLEARANCE .. SO I feel I did not spend enough time and energy doing proper lung clearance .. allowing my mucus to accumulate!!

YES, on one level I was aware that the mucus in our lungs become a breeding ground for “nasty critters” .. BUT frankly the process of lung clearance for me is physically exhausting and VERY time consuming. PLUS not ONE doctor sent me to a GOOD respiratory therapist who explained/demonstrated the importance NOR the process of GOOD lung clearance! AND how did I learn about good lung clearance .. AND about the Aerobika .. AND about using Saline Solution?? You got it!! On our beloved Mayo Clinic Connect!! NOT from my doctor .. LATER after I ASKED about it I was able to get more information .. BUT thank heavens for our Connect! Hope the above .. detailed as it is might help someone else avoid what I am dealing with.

REPLY
@katemn

As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain fog/rapid weight loss of 6# .. I am small anyway so 6# was a lot/terrible coughing. Was in bed or a chair for essentially TWO months! I was then diagnosed with Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi 4/5/17.

I was prescribed: 4/5/17 -28 DAYS CIPRO 2X PER DAY resulting in zero affect .. 4/26/17 I STARTED INHALED TOBRAMYACIN for 28 days on then 28 days off .. for 3 cycles .. a total of 6 months.

Things I’ve learned so far on this journey that I felt I had to share so another Connect Member might profit and avoid what has happened to me. Hugs and greetings to all. I am with you in spirit! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
*REQUEST AN APPOINTMENT ASAP WITH A GOOD RESPIRATORY THERAPIST FOR:
a. proper use of inhalers that would be best for you
b. proper use of inhaler spacers (for YEARS I was NEVER advised to use a spacer with my two inhalers!!)
c. proper use of saline solutions inhalation to help with mucus
d. proper use of Aerobika with saline inhalation

*KNOW THE PROCEDURE WHEN SICK:
a. At Mayo Clinic when sick you are to call the NURSE rather than the Appointment Secy. Having never been so sick before I did not know the procedure and called the Appt Secy
b. I waited a full month for an appt meanwhile getting sicker and sicker.

*IMPORTANCE OF LUNG CLEARANCE IN USE OF TOBRAYACIN (and THE ENTIRE JOURNEY OF YOUR LUNG HEALTH!)
a. use Aerobika® Oscillating Positive Expiratory Pressure Therapy with Sodium Chloride Neb Solution
IMPORTANT THAT I WAS NOT TOLD.. only read about: Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.

(you will need prescription for Sodium .. using with Neb) (AEROECLIPSE XLBAN 6 MONTH REUSABLE Nebs) (good prices @ http://www.aerobika-therapy.com/order-today http://www.shopnebulizer.com/p-26249-monaghan-aeroeclipse-reusable-breath-actuated-nebulizer.html)

b. use Aerobika ALONE for good lung clearance .. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
c. prepare Tobramycin antibiotic then use recommended Pari LC Plus and Nebulizer Pari LC
https://www.healthproductsforyou.com/p-pari-vios-lc-plus-adult-aerosol-delivery-system.html
IMPORTANT THAT I WAS NOT TOLD.. only read about:
Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.
d. use Aerobika ALONE for good lung clearance.. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
e. rinsing well with Colgate Peroxyl Mouth Sore Rinse after each Inhaled Tobramycin antibiotic session to take away the taste and then using Arm&Hammer PeroxiCare Toothpaste to ward off oral thrush.

I personally believe (and I will never be convinced otherwise) that the reason I got the 3 bacteria Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi is that NO ONE EVER stressed to the point of getting it into my head .. the true importance of LUNG CLEARANCE .. SO I feel I did not spend enough time and energy doing proper lung clearance .. allowing my mucus to accumulate!!

YES, on one level I was aware that the mucus in our lungs become a breeding ground for “nasty critters” .. BUT frankly the process of lung clearance for me is physically exhausting and VERY time consuming. PLUS not ONE doctor sent me to a GOOD respiratory therapist who explained/demonstrated the importance NOR the process of GOOD lung clearance! AND how did I learn about good lung clearance .. AND about the Aerobika .. AND about using Saline Solution?? You got it!! On our beloved Mayo Clinic Connect!! NOT from my doctor .. LATER after I ASKED about it I was able to get more information .. BUT thank heavens for our Connect! Hope the above .. detailed as it is might help someone else avoid what I am dealing with.

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This post by Katherine is greatly appreciated..filled with important information. Thank you Katherine! … and I hope with each day you will be feeling stronger. I am glad I found it, as the last few days of Connect have been hard to navigate. Is anyone else having the same problems I am having? For instance, I got to Katherine’s email today for the first time ( did not see it yesterday as I tried to find emails). But today when I clicked, I only had the option of “1” or “2” – then with her email were only 2 other emails, dated March 10, and March 31. In the past we were able to click on “Last” and read from the bottom up, in sequence, starting from the most recent and going backwards. That was a good system. Could we go back to that system?! Pamela

REPLY
@katemn

As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain fog/rapid weight loss of 6# .. I am small anyway so 6# was a lot/terrible coughing. Was in bed or a chair for essentially TWO months! I was then diagnosed with Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi 4/5/17.

I was prescribed: 4/5/17 -28 DAYS CIPRO 2X PER DAY resulting in zero affect .. 4/26/17 I STARTED INHALED TOBRAMYACIN for 28 days on then 28 days off .. for 3 cycles .. a total of 6 months.

Things I’ve learned so far on this journey that I felt I had to share so another Connect Member might profit and avoid what has happened to me. Hugs and greetings to all. I am with you in spirit! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
*REQUEST AN APPOINTMENT ASAP WITH A GOOD RESPIRATORY THERAPIST FOR:
a. proper use of inhalers that would be best for you
b. proper use of inhaler spacers (for YEARS I was NEVER advised to use a spacer with my two inhalers!!)
c. proper use of saline solutions inhalation to help with mucus
d. proper use of Aerobika with saline inhalation

*KNOW THE PROCEDURE WHEN SICK:
a. At Mayo Clinic when sick you are to call the NURSE rather than the Appointment Secy. Having never been so sick before I did not know the procedure and called the Appt Secy
b. I waited a full month for an appt meanwhile getting sicker and sicker.

*IMPORTANCE OF LUNG CLEARANCE IN USE OF TOBRAYACIN (and THE ENTIRE JOURNEY OF YOUR LUNG HEALTH!)
a. use Aerobika® Oscillating Positive Expiratory Pressure Therapy with Sodium Chloride Neb Solution
IMPORTANT THAT I WAS NOT TOLD.. only read about: Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.

(you will need prescription for Sodium .. using with Neb) (AEROECLIPSE XLBAN 6 MONTH REUSABLE Nebs) (good prices @ http://www.aerobika-therapy.com/order-today http://www.shopnebulizer.com/p-26249-monaghan-aeroeclipse-reusable-breath-actuated-nebulizer.html)

b. use Aerobika ALONE for good lung clearance .. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
c. prepare Tobramycin antibiotic then use recommended Pari LC Plus and Nebulizer Pari LC
https://www.healthproductsforyou.com/p-pari-vios-lc-plus-adult-aerosol-delivery-system.html
IMPORTANT THAT I WAS NOT TOLD.. only read about:
Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.
d. use Aerobika ALONE for good lung clearance.. DEFINITELY using the “HUFF’ cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
e. rinsing well with Colgate Peroxyl Mouth Sore Rinse after each Inhaled Tobramycin antibiotic session to take away the taste and then using Arm&Hammer PeroxiCare Toothpaste to ward off oral thrush.

I personally believe (and I will never be convinced otherwise) that the reason I got the 3 bacteria Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi is that NO ONE EVER stressed to the point of getting it into my head .. the true importance of LUNG CLEARANCE .. SO I feel I did not spend enough time and energy doing proper lung clearance .. allowing my mucus to accumulate!!

YES, on one level I was aware that the mucus in our lungs become a breeding ground for “nasty critters” .. BUT frankly the process of lung clearance for me is physically exhausting and VERY time consuming. PLUS not ONE doctor sent me to a GOOD respiratory therapist who explained/demonstrated the importance NOR the process of GOOD lung clearance! AND how did I learn about good lung clearance .. AND about the Aerobika .. AND about using Saline Solution?? You got it!! On our beloved Mayo Clinic Connect!! NOT from my doctor .. LATER after I ASKED about it I was able to get more information .. BUT thank heavens for our Connect! Hope the above .. detailed as it is might help someone else avoid what I am dealing with.

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Hi Pamela,
The system to which you refer “Clicking Last” and going back through the most recent messages still exists. However, I think you were surprised to see that the latests messages on this particular discussion thread were from March. That is because Katherine posted this information about pseumonas to this discussion specific to pseumonas called “Have Bronchiectasis, recently diagnosed with pseumonas.” This was a good idea from her because then anyone looking for info about pseumonas can find it here.

The discussion thread where members post almost everyday can be found here: http://mayocl.in/2cwX36M
It is called: “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” and has almost 3000 messages. Can you believe it? What an incredibly connected community. Simply click “Last” on this discussion and you will see all the recent messages as you are used to doing.

Of course, with 3000 messages important info gets buried too. So members are also starting new discussion specific to particular topics like travelling with MAC, collecting articles, etc. See all the topics when you go to the MAC & Bronchiectasis group here:
http://mayocl.in/2ouP4e8
Pamela, I see that you are following the group, so you won’t miss any messages. Happy Connecting!

REPLY

Dear All, I can ONLY speak from personal experience. When testing was done for my Pseudomonas .. it came back that the prescription I was given for Cipro was a TOTAL waste of time as my Pseudomonas was “RESISTANT” to CIPRO!! Becky, I would suggest you do your OWN research. I did my OWN because I got so very sick. I am now on 28 days of inhaled Tobramycin .. off 28 days .. for 3 cycles for a total of 6 months. I am NOT a doctor .. all I can say is I have learned from my personal experience that I was NOT my own BEST advocate .. DESPITE telling all of you to do so! So Becky .. educate yourself .. make SURE you have a GOOD Infectious Disease doctor who will LISTEN to your concerns .. discuss your concerns with you UNTIL you understand WHY/WHEN you will/will NOT receive treatment for the Pseudomonas .. if THAT happens .. THEN let go .. relax .. do all you can to be healthy and HAPPY! Hugs to you! Katherine

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
**some of my notes:
**Dr. Aksamit said that Pseudomonas Aeruginosa can be treated but like MAC cannot be cured. In my case that the Pseudomonas Aeruginosa bacteria had probably been in my lungs long before it showed up on my 11/9/16 report but just like MAC shows up on a culture report from “MAC FEW” to “MANY” to “COLONIES” (depends on where in the lungs that particular sputum culture came from!) the Pseudomonas Aeruginosa bacteria is the same. The Pseudomonas Aeruginosa can lay low until it shows up enough in a culture to be considered “PROMINENT” and should be treated.

**The effect of Pseudomonas aeruginosa on pulmonary function in patients with bronchiectasis http://erj.ersjournals.com/content/28/5/974 It is not known whether infection by P. aeruginosa is a marker of disease severity or contributes to disease progression. Although P. aeruginosa can be isolated intermittently in bronchiectasis, once it becomes a chronic infection it is rarely eradicated, despite intensive intravenous antibiotic therapy 1, 9. Chronic infection is associated with more extensive lung disease and more severe airflow obstruction 10, but it is not known whether P. aeruginosa is simply a marker of severe disease that has occurred due to another cause or whether it contributes to disease progression. ** However, in bronchiectasis, the severity of the airflow obstruction is not as severe as seen in COPD, where cases usually have FEV1 <30% pred. P. aeruginosa has a high affinity for mucus, and it is possible that impairment of mucociliary clearance and cough clearance, which occurs in bronchiectatic airways due to mucus hypersecretion, increased mucus viscosity and loss of cilia, predisposes to the colonisation 2. Another possible factor is antibiotic treatment, which may be given more frequently in bronchiectasis and drive the airway bacterial flora towards the more antibiotic-resistant P. aeruginosa.

**
http://www.medicinenet.com/script/main/art.asp?articlekey=20161
Pseudomonas aeruginosa has become an important cause of gram-negative infection, especially in patients with compromised host defense mechanisms. It is the most common pathogen isolated from patients who have been hospitalized longer than 1 week, and it is a frequent cause of nosocomial infections. Pseudomonal infections are complicated and can be life-threatening. Signs and symptoms Pseudomonal infections can involve the following parts of the body, with corresponding symptoms and signs: Respiratory tract (eg, pneumonia). http://emedicine.medscape.com/article/226748-overview
https://www.cdc.gov/hai/organisms/pseudomonas.html How are Pseudomonas infections treated? Pseudomonas infections are generally treated with antibiotics. Unfortunately, Pseudomonas infections, like those caused by many other hospital bacteria, are becoming more difficult to treat because of increasing antibiotic resistance. Selecting the right antibiotic usually requires that a specimen from a patient be sent to a laboratory to test to see which antibiotics might still be effective for treating the infection. Multidrug-resistant Pseudomonas can be deadly for patients in critical care. An estimated 51,000 healthcare-associated P. aeruginosa infections occur in the United States each year. More than 6,000 (13%) of these are multidrug-resistant, with roughly 400 deaths per year attributed to these infections. Multidrug-resistant Pseudomonas was given a threat level of serious threat in the CDC AR Threat report.
NOTE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4243435/ ** infection development, P. aeruginosa gradually shifts from an acute virulent pathogen of early infection to a host-adapted pathogen of chronic infection. ** in particular ciprofloxacin, are the most used. However, ciprofloxacin usage is somewhat limited due to the rapid emergence of resistance. As a solution, ciprofloxacin is frequently combined with other antibiotics through other routes of administration. Combination of inhaled colistin or inhaled tobramycin with oral ciprofloxacin has been used successfully. ** The biofilm-lifestyle represents a reservoir of high phenotypic diversity and it is considered one of the most important adaptive mechanisms of P. aeruginosa within sputum. ** Until now, it is not clear what time bacteria after airway colonization switch to sessile lifestyle, but it is known that biofilm formation enables bacteria to successfully establish chronic infections. Presumably, P. aeruginosa form biofilms in response to stressful conditions including microaerophily and/or antibiotic treatments.

http://www.bbc.com/news/health-16645957 Pseudomonas is a common bacteria that’s found in soil and water. Because this condition is rare, it may take some time to get a diagnosis. How is it spread? The usual route is through contaminated hands or medical equipment such as catheters and feeding tubes. (or Salt Induced Sputum Cultures?)
While mortality from the infection varies depending on where the infection is, how soon it is treated and the underlying weakness of the patient, some studies suggest a third of infected patients may die. The bacterium appears to have an inbuilt resistance to antibiotics, as well as the ability to mutate into new, even more resistant forms.
It is difficult to treat people with Pseudomonas infections. The bacteria have long been notorious for their resistance to antibiotics. More recently, scientists have discovered that individual Pseudomonas bacteria differ considerably from one another, meaning we are not necessarily fighting a single foe. The bacteria’s genetic make-up differs, as does their virulence – their ability to cause disease. Some strains seem particularly good at spreading from one person to another, resisting antibiotics, surviving in the environment, or even causing death. They are also constantly evolving. In this project, researchers are studying the genetic differences between a wide spectrum of different Pseudomonas aeruginosa bacteria. They are identifying and sequencing sets of genes that enable the bacteria to cause serious infections in man, and studying the role of these genes. They aim to emphasise the enormous genetic diversity between different Pseudomonas bacteria by studying strains collected. https://www.action.org.uk/our-research/secrets-superbug-what-makes-pseudomonas-bacteria-so-deadly

REPLY

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

REPLY
@katemn

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

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@katemn The
instructions that came with the toby was to never use it in a nebulizer that was
just used for another solution. I have a neb cup that I use ONLY for the
toby. The toby should be last on the nebulizing list (per dr instructions) I
first OPEN lungs with Levabuterol, second -CLEANSE lungs with Saline, last
MEDICATE with Toby. Makes sense, you don't want to do the Toby and then do a
cleanse and possibly cough up the medicine you just put in there. Also, makes
sense to OPEN your lungs to clean them and then medicate them. Right? As for
sterilizing my neb cups and mouthpieces. I have never done it except by putting
them in the dishwasher. My lazy butt admittedly will use the same mouthpiece
several times before putting into the dishwasher. I do not currently have an
infection, my treatment now is as a prophylactic measure. Hope this info helps.
Terri M.
 

REPLY

@windwalker, Terri, thank you so much .. YEAH for Connect! That is the routine I have used also except I do my two inhalers first .. then the Saline. I use a baby sterilizer for all the equipment .. started that back when I was doing the inhaled Amikacin. BUT I still didn’t quite get it .. you have a Toby ONLY neb cup .. BUT do you sterilize it daily? Wash and Sterilize 100% of the items daily? I ask because of : ” Member advice from Conference: They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers. ”

That SOUNDED like DAILY washing and sterilizing!! Can’t remember who posted that .. whoever did please jump in and tell us if it mentioned DAILY .. OR??? Sure makes a difference in effort and energy!! Hugs! Katherine

REPLY
@katemn

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

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@windwalker, Terri, also .. when you say you do not “currently have an infection” .. be careful .. when I was diagnosed I was told .. just like the MAC .. Pseudomonas can be “stabilized” but not “cured” .. so the darn thing is still there in our lungs waiting to colonize EVEN when we don’t have an active infection .. DARN! .. OR like me .. get a couple MORE bacteria that we’ve never heard of! Hmmm! Hugs! Katherine

REPLY
@katemn

@windwalker, Terri, thank you so much .. YEAH for Connect! That is the routine I have used also except I do my two inhalers first .. then the Saline. I use a baby sterilizer for all the equipment .. started that back when I was doing the inhaled Amikacin. BUT I still didn’t quite get it .. you have a Toby ONLY neb cup .. BUT do you sterilize it daily? Wash and Sterilize 100% of the items daily? I ask because of : ” Member advice from Conference: They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers. ”

That SOUNDED like DAILY washing and sterilizing!! Can’t remember who posted that .. whoever did please jump in and tell us if it mentioned DAILY .. OR??? Sure makes a difference in effort and energy!! Hugs! Katherine

Jump to this post

@katemn
I have two neb cups. One I use only for my Toby. The other I squirt the
levabuterol into and do a treatment. Then I immediately squirt in the saline and
do a treatment. It is ok to do that. The Toby cup cannot be shared. I know I
should sterilize everything, but I don't, I put it in the dishwasher. I plan to
get a bottle sterilizer, just have not yet. 
 

REPLY
@katemn

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

Jump to this post

@katemn Yes,
I am aware that we will never be cured of these bugs. What I was inferring
was that I have no active infection or colonizing bugs at the
moment.
 

REPLY
@katemn

@windwalker, Terri, thank you so much .. YEAH for Connect! That is the routine I have used also except I do my two inhalers first .. then the Saline. I use a baby sterilizer for all the equipment .. started that back when I was doing the inhaled Amikacin. BUT I still didn’t quite get it .. you have a Toby ONLY neb cup .. BUT do you sterilize it daily? Wash and Sterilize 100% of the items daily? I ask because of : ” Member advice from Conference: They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers. ”

That SOUNDED like DAILY washing and sterilizing!! Can’t remember who posted that .. whoever did please jump in and tell us if it mentioned DAILY .. OR??? Sure makes a difference in effort and energy!! Hugs! Katherine

Jump to this post

@katemn also
wanted to add that my Dr and I both suspect I have been suffering from
pseudomonas infection for years prior to testing. I got a definitive on
the toby too. It kills pseudomonas, but NOT MAC. I asked because I was
surprised that all of my coughing stopped after my first month on Toby.
Mind you, I have been coughing my head off constantly for the last 12 yrs
at least!
 

REPLY
@colleenyoung

Welcome to Connect, @shiell. You’ve found a great group of people here in the MAC & Bronchiectasis group. Kudos to you for having read everything the members have written!
Let me introduce you to @pamelasc1 and @jentaylor who also have or had pseudomonas. @windwalker has experience with tobramycin.

You may wish to also join the main MAC/bronchiectasis discussion here: http://mayocl.in/2cwX36M
We look forward to getting to know more about you.

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I wish I could be on it. I am allergic to it.

REPLY
@luvocean

I am new to this site but it is helpful to hear of others that are experiencing the same thing.
I have pseudomonis too but am unable to use the tobramycin as I am apparently allergic to it. It causes
tightness in my chest which makes it harder to breath. I hope they come up with something new soon.

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Thank you. I will mention it to my dr.

REPLY
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