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Thank you everyone for your support and prayers whenever I have need. You are a great part of my motivation to fight to get well. I just got home yesterday from a several day stay in the hospital due to pneumonia. I am sorry that I did not post a message then, but many of you, unfortunately, know how tiring being in the hospital can be. I do think I am feeling better although I still have a cough, but that may be because my body is trying to get the pneumonia completely out, at least I hope so. This pneumonia had been previously treated by my PCP with ten days of an oral antibiotic, Levofloxacin, but it did not work because 4-6 days after I finished that antibiotic treatment I developed the fever which led to me going to the hospital. As may be the case with you, because of being on an immunosuppressant due to my transplant, I have to go to the ER even if I have a mild fever. I have been put on two oral antibiotics, Augmentin and Azithromycin. I just feel very fortunate that I did not have any other problems as sometimes happens when I have to go to the hospital for treatment of an infection. I will be seeing my PCP on Friday as a follow up to see if I am doing okay.
I am curious if anyone has experienced something similar in that whenever I get sick with an infection, I always seem to have few symptoms. This time, my only symptom was an occasional but persistent wet cough until the day I developed a fever, that is this past Saturday. I also felt a little more tired and out of sorts that day. However, before this, it was mainly just the cough which I first noticed in late December 2015. It took awhile for me to go in and get looked at because sometimes I would think the cough was getting less, and what came up was mostly clear and not a whole lot. The very first time I developed pneumonia, several years ago, the only symptom I had was the fever that notified me I needed to go to the hospital. I did not start to cough until after the antibiotic treatment began. Does anyone else find that he or she does not manifest lots of symptoms when ill with an infection perhaps because of being on an immunosuppressant?  
Again thank you for always being so kind to me. May all find new reasons for hope to spring up before them. I keep this whole group in my thoughts and prayers. Many hugs are being flown your way.
Warm regards,
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  • I am always the last person to know if there is a problem developing.  Perhaps this is due to my prednisone, which interferes the body reaction to some issues.  I hope you get better soon.

  • I find that the sign that I am not well seems to always be to be cranky, or angry, a low fever which is 100 degress and I am tired where I could actually nap. So yes, I agree with you I dont get huge red flag symptoms, and by time I do its time hospital or doctor demanding bed rest for me. I hope you feel well soon, praying for you.

    • Thank you for sharing and letting me know that I am not alone in this. It is somewhat frustrating how deceiving this can be, but it just goes to show how important it is to monitor oneself for even small changes. I hope you may not experience another episode like this for as long as possible. I appreciate your prayers tremendously. I am doing much better, hardly coughing at all now, so I have hope that the antibiotics finally did their job. May you have a hope-filled and uplifting week. 

      Warm regards,

  • Have you received both the pneumovax and prevnar vaccines?  If not, talk to your team about them.

    • Are the pneumovax and prevnar vaccines different from the usual pneumonia vaccine? I know I have gotten a pneumonia vaccine every five years since my transplant, but I am not sure if it had a specific name. Thank you for mentioning these.

      Warm regards,

      • There are at least 36 different strains of pneumonia.  Probably more.  Your "usual" is probably the older Pneumovax, designed to control 23 strains.  Then, along came Prevnar, designed to control an additional 13 strains.  I was told to get both vaccines by my lung transplant team.

        • Thank you for informing me of this. I will have to ask my transplant team about it. May you have a blessed week.

          Warm regards,

  • Hi Bobbiejo

    Glad to hear from you -so sorry to hear you are struggling.  All germs have various pathways when entering their body. When I notice any ill symptoms even the slightest I always attribute to eating more fruit and going to bed later than usual.  I try and stick to a routine and when I do, I usually feel really good. 

    As a double lung transplant recipient, I find if I irrigate my sinuses, my lungs stay very clear.  You might want to look into washing your sinuses with a Netti pot because if your infection originated in your sinuses this treatment will help.

    Sending you my love


    • Your remarks about sinus irrigation made me wonder, again, about the relationship between my IPF and a lifelong sinus problem.  I wake up every morning feeling like I have a head cold, with lots of congestion and hacking.  Occasional headache.  However, if I take a Sudafed the night before, I feel fine, and will continue feeling fine for another day or so.   Obviously the antihistamines are beneficial.  My pulmonogist doesn't agree though that regular Sudafed usage would be a good idea.  I guess because continuous use might reduce their efficacy? Too bad.

  • Glad you posted this. For me it just reinforces a lesson I just can't seem to learn. Once or maybe twice a year I get a little hacking cough that just gets a little worse for 2-3 days and then plateaus with no fever. I keep thinking that I can fight it off so I just wait until about Day 5, I start to get a little fever and feel weepy, stressed and exhausted. Finally, I call for help. One round of Azizthromycin and I am better. Moral of the story: I can no longer shake these things off. Don't wait to get help.
    I am assuming you get the pneumonia vaccine. It doesn't help?
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