Pseudomonas pneumonia
Posted , 5 users are following.
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!!!
0 likes, 21 replies
mary_ann_0313 debra_28257
Posted
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
aitarg35939 mary_ann_0313
Posted
Maryann, I am the one who knows A LOT about the history of pharma research in this country. I understand if you do not and choose to ignore reality. There is a very good reason why only deathbed candidates get in on certain research: because the chances are good that the investigational treatment will kill them. That's true of all pharma research here not because drug companies care about us but because they don't want to get sued by the surviving families of people who die during research. Courts here won't give awards to those families if the patient was certified near death. So be careful what you wish for.
Drug research here is also a dollars game: why spend money developing a drug that fewer than a million people/year will use? i'm not saying that that's a correct number in this circumstance. I don't know but i suspect the number is lower. Regardless, if I own a company am i going to spend $1B researching a drug that fewer than a million MIGHT use or am i going to spend that same billion dollars researching a drug that up to 20,000,000 might use? Capitalist country that we are, the answer's always going to be to go for the 2d drug because they will make so much more money overcharging 20M people than they ever could by overcharging 1M folks.
So capitalism and sexism get us going and coming in drug research in the States. As to sexism aside from my valid point about Viagra & its cousins versus women-only actual diseases (i.e , something other than middle-aged men's need to try and compete with young men for the young girls), even tho my mom was 15 years past menopause, in 1968 it took 2 years of daily lobbying to get my mom into a Parkinson's drug study here. She was the ONLY woman in the study, and there was excellent BC by then, plus PD tends to hit women after menopause. Zero women got into drug studies before the pill came along because pharma didn't want lawsuits over gestational injuries. Thalidomide damage reinforced this position. So virtually all drugs and dosages developed before about 1980 were tested only on men. This is why for everything from antibiotics to steroids to tylenol, women have many more adverse reactions: dosages are not set for our smaller frames with less inborn muscle & bone mass. To ignore these realities is to bury the proverbial head, IMHO.
Just FYI, I have a juris doctorate from a Top 20 law school, almost half a century of legal experience, and I happen to live in a city that has had many major drug testing companies since at least 1955. We are very familiar with drug research here. I wish that women as a group would rise up and demand that research & dosing be geared to us. I try to explain to my 4'11" goddaughter that she should never take the full dose of any OTC med to start with, and that she should always ask to talk to a pharmacist on prescriptions, look them in the eye & ask if the dose is correct for her body size.
debra_28257
Posted
I was diagnosed 1 year ago with Pseudomonas pneumonia and when I got that diagnosis I really thought I was going to die soon but 1 year later I am still here. I take very good care of myself by doing a lot of immune support and my Pulmonologist has me on the Tobramycin breathing treatments for 28 days on 2 times a day and then I take a break for 28 days off. Since I've been on Tobermyacin I haven't had a respiratory infection, I'm feeling Great!!!