I was diagnosed with Pseudomonas pneumonia 3 weeks ago, I don't have cystic fibrosis or Bronchiectasis, I was misdiagnosed with Asthma and was doing asthma treatment that didn't help me at all and I kept getting worse so I went to a lung specialist and I had a lung biopsy done and I was told I had Pseudomonas pneumonia and I didn't have Asthma, I am 60 years old and I am on Tobermyacin inhaled solution every 12 hours, I am seeking information from people that are like me, any information on living with this, like if I go on vacation can I swim in a public pool or go in a hot tub? If a family member is in the hospital can I go to the Hospital? I am doing immune support but any information on what you should avoid and what you should do? I don't know how I got this, I can't cough up mucus and maybe I got Pseudomonas pneumonia because I can't cough up mucus, or maybe I got Pseudomonas pneumonia from my breathing machine, how long can someone live with Pseudomonas pneumonia? Does it depend on the person immune system? Any information will be greatly appreciated!!!
You don’t have to gave bronchiectasis or cystic fibrosis to get pseudomonas pneumonia.
The trobramycin hopefully will help cure the pneumonia. Pseudomonas is difficult to eradicate. No one knows how we get these things. Follow your Doctors plan. Perhaps he could give you some airway clearance tools. That should help bring up mucus. I use the vest and inhaled sodium 2 times a day.
Good luck. Chin up
Hi, I am using the acapella and that helps
You mentioned a breathing machine which apparently was in use prior to this diagnosis. I don't know what you're using, but for my nebulizer i was told to rinse after each use during the day then soak all kits in a vinegar-water bath for 30 minutes after final use every day. If you use a face mask, don't put the mask in the solution, just the part which holds the medicine. Change filter as soon as it shows any color change/dirt. Discard all tubing & used kits every 6 months -- that's for people without infections like yours. Ask how often you should clean & replace your kits. Once weekly i wash everything in mild dish detergent.
Yes. I attach my nebuluzer o an aerobika
I wash my 2 nebulizers and aerobika
In hot soapy water afterveach use and sterilize every couple of weeks in microwave or boiling water
Hi Debra:
Yes, it is easy to get a pseudonomas infection in the lungs and hard to get rid of it. I have had several during my 25 or so years with Bronchiectasis. Luckily the antibiotics my pulmonologist prescribed eliminated the infection each time after a few weeks. But the antibiotic itself (Cipro) has a lot of side effects. Usually a sputum test will tell whether the pseudonomas is gone or not. The infection is not dangerous to people with healthy lungs and, when I am not too sick or tired, I go about my business as usual. Of course I am careful about hygiene in public places and around friends. What kind of a breathing machine do you use?
I hope you get rid of the peudonomas soon and feel much better.
Louise
Hi everyone, the kind of machine I use is the PARI VIOS PRO Areosol Delivery System, Designed for heavy use, my Doctor said I would never completely get rid of the Pseudomonas, that I will alway have to stay on antibiotics, right now I am on Tobramycin 300 mg inhalation solution every 12 hours for 28 days on and then 28 days off, I have been on this since August 9th so I hope when I am off the Tobramycin for 28 days I don't get sick and have to take an oral antibiotic, my Doctor said I will have this forever and I will have to stay on antibiotics to keep it at bay and I need to keep my immune system high to fight this.
Hi, I sanitized my medication cup in a microwave bottle warmer after each use and I was told to replace the tubing every month
Hi, I sanitized my medication cup in a bottle warmer in the microwave and I was told to replace my tubing once a month but before I was diagnosed with Pseudomonas pneumonia and I thought I had Asthma I only used soap and warm water and I didn't replace my tubing at all, I didn't know I was suppose to replace the tubing or boil my medication cup
Thank you
Hi Debra:
There must be some difference between the pseudonomas aeruginosa infection I have had and pseudonoma pneumonia that you have. I certainly never had such a dire prognosis. No wonder you are feeling confused and depressed. Should you go for a second opinion? Have you searched the internet? You have a lot of valid questions. Maybe someone else on this forum has more experience with this. I hope you are functioning better and getting some answers.
Louise
I kept getting pneumonia over and over and once Pseudomonas gets in your lungs you can never completely get rid of it, you can only keep it at bay with antibiotics and immune support, if you look up Pseudomonas pneumonia on the internet you will find a lot of dum and glum about how deadly this is
Hi again Debra:
The difference must be that in the case of bronchiectasis the infection is limited to the bronchii whereas in your case it must be in other parts of the lungs. Very sorry to hear how difficult this is but keep fighting and working on strengthening your immune system. Also you may want to research phage therapy. This is not practiced widely in the US (only in case of dire emergencies) but in Holland people are going to Georgia for this type of treatment. Wish you the best.
Louise
Thank You
They're doing phage work rel: CF in San Diego. A college friend's husband is on the team, tho i think from the computer science/research design side. If you're in the States, resarch it as related to CF, more apt to come up that way.
Ok, Thank You
I don't believe it is open to anyone. I have Pseudomonas and I live in SD. University of California at San Diego is the university that is taking only very special patients. There was a professor at the college who was dying from something he caught in another country. He was taken into the UCSD research center for biophage therapy. He is alive and well now. I would like to see my own state university provide some help for me rather than travel to Georgia (Russia) to get the therapy. However, I am thinking the way I feel today that I may never see this awful infection gone through biophage. I continue to read the latest Clinical Research being done on PA and so far, no one has made it through phase 4. Whatever is in the pipeline is taking far too long to bring to the marketplace. I am disappointed. When HIV was a major problem in this country, many celebrities and people in high places got together and put the funds together to make these pharma companies interested to research and find the cure. It is not happening for those of us who have become victims of this infection. I got it from a bronchoscopy. I know that the US gov't is extending many grants to Pharma companies to come up with a cure for the superbugs, like PA. However, it is a tough infection...... Please pray for a cure.
Sad to say but the reason Hollywood celebrities got involved in AIDS was because Hollywood celebs were contracting it, specifically male actors.
Whether we like it or not, more American med/pharma research is directed at men than at women. Just look at erectile dysfunction and endometriosis. Each directly afflicts only one sex. One might think that seeing women writhe on the floor in pain every month, sometimes for 2 weeks each month, might spur men to demand research into effective treatment, maybe even a cure. I have known women not related to me who were diagnosed with it in the 1930s. It takes longer now, 5-15 years, to get a confirmed diagnosis than in the '70s-'80s (3 years). Still there is no cure and treatments are still hit or miss and less effective than some '60s-'80s treatments.
Contrast that with the fragile male ego, their inordinate preoccupation with non-urinary excretions from their fave appendage, and erectile dysfunction. So many treatments! So many choices!
I can only conclude that pseudomonas will get short shrift until the day it afflicts the fave appendage of male Hollywood celebs.
I have no statistics to back up your statements about the males getting more attention from big Pharma. I only know that I will need to continue to research every new medicine in the pipeline with the hope that I take the plunge into a clinical trial that works for me and many after me. As much as I don't want to risk my life on a medicine that can give me renal failure, etc., I am in the position where if I don't get some cure soon, I will be getting all kinds of illnesses. The inflammation is causing several issues within my body, not just the damage to my lungs. My pulmonary doctor told me that I won't die from pseudomonas....I will die from the complications of the bacteria. I believe she was talking about wearing out other organs from inflammation. My bone health is not the same. My intestines are not the same and the lists go on... My heart is not the same. I have horrible anxiety, which is a byproduct of the antibiotics. It is a vicious cycle. I finally have the best pulmonary doctor within the Kaiser system. She is kind, knowing what I have ahead. Most of the other pulmo doctors are strictly pumping more meds. This doctor is taking things away that she says I don't need. PTL. I have asked her several times if I should go to Georgia, Russia for biophage and she absolutely says no. She says that UCSD is not open to patients like me at this time. I think you need to be in a near death condition. Pretty sad in the U.S. of A. I feel badly for all those people who have run out of time waiting for a cure. SAD! As the doctors were flashing antibiotics at us for every cold and flu, we were lessening our chances of their effectiveness when we really needed them. These pharmaceutical companies were happy making money on the excessive use of the antibiotics. So, that is where it is now. None of the old drugs work against these antibiotic resistant Superbugs! To any of you who have pseudomonas, please add your comments. We will get more accomplished if we research this stuff together, be more verbal about help on a cure as AIDS people did, etc. I read something about an Italian company that has something for superbugs like MRSA. They are working on PA. I also contacted a company called Armata today. They are in Marina Del Rey. They are partnered with Merck. Within 10 minutes of my email, I got a call which I didn't answer since I didn't recognize the number. He left a message that he will contact me again to discuss the upcoming trial. So, this is how we are going to help each other. Call companies, universities, and find out who is making progress in the fight against this infection. Keep in mind...the squeaky wheel gets the oil. Call your state representatives and put pressure on to open more of these state educational facilities with biophage and make them available to all patients, not just those on their deathbeds. Spend time on the internet researching newest meds in the pipeline, biophage locations, and pass it back to all of us. Go to Clinicaltrials.gov and look for trials in your area. Blessings to all of you. Mary Ann