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  • Please tell me you had this happen to you!

    Hi, all,

    I am now finishing my second round of antibiotics for pneumonia - first Zithromax and then a new cephalosporin that is approved for use in Britain and Europe, but not the US. I am still pretty sick, so the doctor ordered a culture with drug sensitivity.

    The results came back today that I have pseudomonas pneumonia. This is REALLY rare except for people with severely compromised immune systems or who have been exposed to drug resistant hospital infections. It is, in the doctor's words, "a very nasty bug." Death rate is very high. The doctor here has no idea what to do. He says he wants me on another antibiotic or two by tomorrow morning, but he has to figure out what big gun antibiotics are available in Beijing. So, needless to say, I did a web search and found that this type of pneumonia virtually never occurs in the normal population. One source found 9 cases in 20 years, for example. However, among those rare cases, congestive heart failure is one predisposing condition.

    So I am turning to you for some reassurance. I would love to hear that some of you have had this, taken antibiotics, and gotten rid of it.

    Any experience or advice?
    Rhoda

    PS. I should add that I don't feel like I am going to die nor am I afraid of doing so, but I really would like to get better.

  • #2
    I'm sorry, but I can't say I've had that strain of pneumonia. However, I will add more prayers and thoughts for your quick and complete healing. I hope you're feeling much better soon. Please take care.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Rhonda

      I wish I could be of some help to you. Please know that you are in my prayers.

      Keep us updated.

      Take care
      Esther

      Comment


      • #4
        Rhoda, sorry I cant help you. I can keep you in my prayers though. Stay positive.
        Midge

        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
        ICD&Pacemaker 1996
        Heart transplant March 19, 2004 @ Mayo Rochester
        Mom of Kaye.

        Comment


        • #5
          Rhoda, I sure am sorry to hear this latest news!

          I did some quick research as well out of curiosity. By now you've already read every article you can get your hands on (Weingart, et al) so I'm sure you know everything there is to know about pseudomonas pneumonia. It does certainly sound like you picked yourself up a rare one. Yikes! HCM wasn't special enough?

          I glanced at the list of antipseudomonal antibiotics. I have experience with one in particular... Levofloxacin (brand name Levaquin here in the states). I can tell you that it worked very well for me on one particularly nasty bacteria, when nothing else would even touch it. The others I have not heard of, except for Cipro and I have no experience with that. Of course there is also the consideration of what is available to you there. You may very well have more choices than we do.

          Question: Do you think it is possible that the Pseudomonas aeruginosa is responsible for your persistent recurring bouts with pneumonia? This strain seems particularly opportunistic. Is it perhaps one of those bacteria that reside in the body once it's there, and kicks in only during your especially troublesome episodes of CHF? Just curious. Seems like it's rare enough that there is still much to learn about it.

          Please keep us posted on your progress and stay positive. If anyone can kick this bug's @ss, it's you Rhoda.

          Jim
          "Some days you're the dog... some days you're the hydrant."

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          • #6
            Rhoda,
            I was sorry to read that you have a rare pneumonia. I can't be of help with the antibiotics but I am keeping you in my prayers. I hope and pray the Dr. can find an antibiotic that will help you.

            Best Wishes,
            Joyce
            \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
            Pierre Teilhard de Chardin

            Comment


            • #7
              Rhoda - Sorry to hear that you are not well. My father who has HCM has had pneumonia, and once he had a rare type (I don't remember the name, but it was fungal). Anyway, it took him awhile, but he did recover.

              Also, I had bronchitis this summer for 6 weeks. I took 4 kinds of antibiotics before it went away, but it eventually did. I just think that our systems are weaker and take longer to fight stuff.

              Good luck. Keep the faith.

              Cynthia
              Daughter of Father with HCM
              Diagnosed with HCM 1999.
              Full term pregnancy - Son born 11/01
              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

              Comment


              • #8
                Rhoda.

                Do get well! I trust they will find the right kind of antibiotic soon. Be very careful. You will remain in my prayers.

                Peace,

                Leon
                God Squad co-moderator
                Nothing is as gentle as strength and nothing is as strong as gentleness

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                • #9
                  Cyn made a good point --you should get tested for fungal stuff too if you haven't already. and be sure to be taking acidophilus if you can for your stomach.

                  also, you will get well. i'm quite sure. don't forget that laughter (while it probably hurts right now) is the BEST medicine. watch all the funny movies and read all the funny books you can. there are comedy cds on itunes, too.

                  and maybe it is time to think about moving home.

                  best wishes,

                  s

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                  • #10
                    Rhoda

                    I hope you get over this, from what i have read it is a nasty pneumonia, keep your faith and it might be time for you to move home, i think you would have a better chance here at fighting it, I can't believe you are not in a hospital for this you would be here i think But i will keep you in my thoughts and prayers

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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                    • #11
                      Update: I am starting an injectible cephalosporin today. I will go to the hospital twice a day for 10 days to get it. I certainly hope it works!

                      I will try to answer at least some of your comments and questions here:
                      Yes, if I were in the US I would almost certainly be in the hospital on IV drugs, possibly in intensive care from what I have read. In addition if I were a Chinese national I would definitely be in the hospital getting the same. But most of us westerners here try to avoid that here as much as possible. Chinese give injectable drugs for everything, even colds, and sterilization is sometimes not all it should be, so the level of drug resistant bacteria and of Hep B and C are very high here. I certainly do not want to expose myself to a Chinese hospital unless I absolutely have NO choice. So I will get the antibiotic this afternoon (the doc found it at one hospital and will get it for me); I will also get a ten day supply of sterile disposable needles; and I will go to the local hospital and let them inject me twice a day.

                      I seriously considered coming home, but the doc does not seem to want me to. I gather he thinks my lungs cannot take it at this point.

                      I think the differential culture they did would have showed fungal pneumonia, if that were it. I find it amazing that they picked up pseudomonas, as it is so unusual.

                      The drug sensitivity test showed that Cipro would be good, but I once had a life-threatening reaction to it, so that is not an option.

                      The students are being really kind, as always! Today one of the teachers we teach brought me a scarf so my throat would not get cold (They are convinced I get sick because I do not have two pairs of long johns under my pants and four layers of clothes on my top.). Another brought me a case of instant noodles so I would not have to cook. Another brought beautiful cups so I could drink lots of hot water (the Chinese cure all). Best of all, one bought me a case of Dove chocolate bars! I have three bouquets of flowers squeezed into two containers, two pomelos (citrus fruit), two bags of pears (they are recommended for coughs), a bag of dried fungus to cook with the pears, a bag of huge Chinese persimmons and a bag of dried persimmons (supposed to be good for the heart), and who knows what all else! And my doctor has called me 4 or 5 times in the past 24 hours and told me that the more often he hears from me the better, since he considers my situation life threatening. But I do not feel like my life is threatened, so, I can't really complain. I am well taken care of. Now if only I can get well...

                      Rhoda

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                      • #12
                        Hi, Rhoda:

                        I just want to assure you of my prayers for a full and swift recovery.

                        Take care,

                        Abby

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                        • #13
                          R

                          Glad to hear you are being well taken care of. You are SO smart to avoid the hospital, too!

                          I meant come home once you are well. Obviously, you can't fly now.

                          Stay warm, get well, big hugs,

                          Sarah

                          Comment


                          • #14
                            Rhoda,

                            I am praying for you.


                            Many hugs to you,

                            Eve
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment


                            • #15
                              Rhonda

                              I am so glad that the dr's are trying a new antibiotic.

                              You are in my prayers for a full recovery.

                              Please keep us updated.
                              Esther

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