There are only about a handful of iv antibiotics used for Cystic Fibrosis infections and infections of people w Bronchiectasis like me.
I am now having back to back lung infections of Pseudomonas, Ralston Picketti and many more. I believe i am no longer sensitive to any of the iv drugs in the Cefta... class. several there.. and Cipro is not working that well either, and have taken Meropenum several times.
My pulmonary dr. actually threw up her hands and said she needs help as she does not know what else to do for me as I am now gettting back to back lung in fections with not even a day or two in between it seems.
IF she doesn't know what to do then what will happen to me. My immunologist is now. saying the same thing and he suggested may UCSF or Stanfordk or. the Jewish Hospital in Denver for lungs but i have an old car and am 78 on ss and my car would not make those long trips. 2 hrs or more and the Denver hospital requires a hotel and air fair at least.
But it seems no one in Sacramento, cA. can help me and I am afraid i will soon be immune to the antibiotics they r giving me and then they will give me nothing and what happens to u. then w a raging lung infection. I have a PORT and got it so it would be easier all around but now I don
t know what will happen to me.. this. not a good prognosis.
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Lapis5
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Sorry to hear this but 1. If you were in England as opposed to America you could get free transport to hospital. Worth investigating? And 2 it’s all very well that your gp etc say can’t do more but why can’t they liaise with consultant in another hospital. Can give consultant all your test results etc.
Finally I know from this site that your condition really requires a Bronc specialist but again I would argue there MUST be some way of getting the right specialist without you travelling for miles!!
I have a Bronc specialist. I have a Pulmonary Dr and an Infectious D dr and an immunologist and none of them have any an swers.. Stanford is over 100 miles so no trans to that ..same for UCSF in San Francisco.. denver is 1000 of miless so no trans there. I dont think either of my current specialists r reaching out to sf or Stanford and never to Denver. So feel very stuck and sick one infection back to back.. for 2 yrs.
I am sorry to hear of your situation and what a terrible position to be in. If I lived in your region I would be happy to drive you to Stanford so feel there must be willing volunteers there that would be willing to drive you. I’m not sure how you find them but would hope the main hospital there would have a list of people who would volunteer their time to drive you or others in your situation. The other option would be for one of your doctors to consult with one of the specialists at Stanford or the hospital in Denver you are referring to. Surely they could suggest trying the same treatments they would try in you were at their facility and your medical team could carry them out.
Anyway again I am sorry to hear of the situation you are in and pray they will find a solution to your situation.
Agree.. So worrying.I feel as if I may fall into the same category soon. Are you on 'Bronchiectasis r us' site? Worth joining to seek answers. LHave you had nebulised colomycin? Seems popular & good if it is tolerated.
Also watched a programme on Phages a while ago. Very successful treatment but not widely available.
This must be a worrying time for you Lapis5. Do you have any charitable organisations in the States that perhaps could help with transport. I cant advise on your condition and wonder if you could look at emailing one of the cystic fibrosis foundations and ask for their advice they may be able to point you in the right direction x
Sounds like a horrible place to be but never give up hope. There are new ideas and drugs coming on board all the time. Sending positive thoughts. Maybe someone you know or a charity woukd take you .
I was told it’s not me that has become immune to the antibiotics but the bugs that become resistant to them. As your in the states it’s difficult for us to come up with useful suggestions. It does seem the best way forward would be for your doctor to reach out for help from the other hospitals rather g than expecting you to make the journey. You must be exhausted as this has been going on for far too long.
It must be very difficult to hear what your providers are saying. Would it be possible to do a virtual visit with one of their suggested providers? I know Mass General/Brigham Hospitals do them where I am seen. This may not help, but I was given the choice between being on azithromycin or antibody replacement, as I have low antibodies against infections. I have non-cystic fibrosis bronchiectasis and precursors to lymphoma. I have said a prayer for you.
I hope they find a drug for you. I was in hospital for 17 days with pseudomonas infection and when I went back for review they said you are running out of options!! My consultant has kept going on about a new drug that they have , not sure what it is but I will find out. When I asked about it in hospital, I was told it is too expensive. My thought was, well why develop the drug.
I had Amakacin and Meroperem when I was in hospital, but it was only sensitive to Amakacin, which you have to be given in hospital as it can affect your kidneys!
No mine is colonised as well. It just slaps it down a bit. I always feel I am fighting an infection so I just try to keep my chest as clear as possible. A never ending job, without any days off! But there are people out there worse off so just keep positive. Let's hope they find more antibiotics out there which don't cost the earth to treat us.Linda
Hello Lapis. What a frustrating situation to be in. Unfortunately we can indeed form a resistance to antibiotics. Bacteria are such clever little buggers because they change to survive so antibiotics can't kill them. It's the same with fungi and viruses. So, bacterial infections become harder to treat.
By rights your doctors ought to be reaching out to Stanford for you with a referral. I think you need to push them to do so. America is so huge. I can imagine the transport is a nightmare. 😔 Do you have a social worker at your hospital? Surely they can advise about transport etc. I wish I could be more helpful. Please do keep us updated. I really hope you can work something out. Thinking of you.
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Oh to be in Spain now the COPD is here....
Missing in Action Minister for Common Sense !
Advise /any help greatly appreciated 
Lost!!
