Sunfish Posted November 20, 2007 Report Share Posted November 20, 2007 as most of you know i've been battling recurrent fevers as of late, 8 weeks now as of yesterday wherein i've had at least a low grade fever all but about 5 of those days. all in all the thought has been - for various reasons - that it was a new part of my autonomic craziness and for the past few weeks we've been keeping tylenol in me during all waking hours. this has reduced the frequency of the higher fevers but about once a week i'll still get one in the 103-104 range. this past thursday it hit 104.6. on other days when it tops out at 100 it's tiring but tolerable; the higher ones are pretty bad. if anyone is really bored & wants to read more, my initial ramblings about the fevers (a few weeks back) are here: http://dinet.ipbhost.com/index.php?showtopic=9230i had an appointment with dr. grubb on thursday & was interested to talk further with him about the supposed "autonomic fevers". in what ended up being a good thing my horrific chills started just before we were to leave the house (we're only about 10 min from him) so once the chills/ shakes calmed down enough to get me into the car we got there & i was still pretty miserable at 104. he had the lab run stat blood work on me to see what was up DURING a fever. the CBC came back pretty much right away and wasn't anything exciting as my white cell count was only a smidgen above normal...nothing anyone would bat an eye at. cultures can't be sped up but no one really thought they'd show anything so we were surprised to get a phone call on friday saying they were growing. again. so technically i have sepsis again, though obviously no where near as sick as the past stints. and what we know of the cultures so far points to it being one of the same GI bugs that have a been a problem for me before. ugh. dr. g & my PCP are trying to keep me out of the hospital if at all possible but there's a chance i may have to go in if we have to start an IV antibiotic that i haven't been on before (there are some left?!) or if it's one that requires more frequent monitoring initially. i should find out tonight or at the latest in the morning what the plan is. for now i'm on the hardest hitting abx that's doable via my J tube; haven't had a high fever since thursday but that's been the pattern lately so it doesn't really mean much either way, though obviously it's good things aren't any worse. the drug susceptibility testing on the cultures will dictate if we can get away with continuing this one or which IVs need to be added to the mix. right now i just want to KNOW one way or the other.obviously it's good to have an answer. and it's grand that it came without my first ending up in ICU as has always been the case previously. but it's disconcerning that the bacteria are still getting into my system. while knowing nothing was certain, we were hoping that getting me on enteral feeding (and off of TPN) might help with my intestinal integrity, i've been doing probiotics, etc. but obviously there's still something amiss that has just been kept more at bay.my biggest immediate concern (which is objectively a real issue) is the possibility of losing my port. while i'm doing okay on the tube feeding our attempts to increase the fluid volume haven't gone well so i'm still very dependent on IV fluids/ electrolytes to the point that i couldn't be sustained without IV access. we know from the last hospital stay that my access options for central lines are dwindling rapidly so it's not a good situation in that regard. i'm hoping & praying that there's a way to keep this line/ port but i know it's not a certainty & obviously if removal is necessary to get rid of the infection it's not optional. (the port isn't the source of the infection but rather an easy place for infection to settle/ hide once in the bloodstream).and....in case that's not enough rambling, i've got something else going on with my lungs that is pretty horribly painful. my doc wanted to wait to see if i had to head to the hospital anyway before sending me for a separate x-ray but the suspician is a partial lung collapse and/or pleurisy. i told my PCP yesterday that i've never had this specific type of pain before & her response was "no, you just don't REMEMBER it" as i've had similar issues during times where i've been too ill to be aware of or remember specifics. i've figured out one position in my recliner wherein - with lots of narcotics and shallow breathing i can tolerate it, get some sleep, etc - but it's pretty bad. i have some pain regularly but nothing even close to this degree. and ah yes, just found out that the pharmacy is out of the pain meds so i will be cutting it close until they come in the morning. yes there are other options but with the other craziness in the house (brother & grandma arriving for holidays, broken oven, etc) i'd rather not add something else to the mix as i should (just barely) be able to manage. and to think i used to completely refuse to take any pain meds!the infection & the pleural pain may or may not be related. the one is worse on paper but the other feels a lot worse in the moment. i can't even imagine what will happen if i get a high fever - or more aptly the preceeding shakes/ chills - while this pain is going on so i'm REALLY hoping that can be avoided. and who knows what will happen with thanksgiving as i was going to try to be heading to columbus with the fam to park on a new couch for a change of scenery for two days at the end of the week . obviously i'd rather not have to add on to my frequent flyer points at the hospital but at the moment i just want to know WHAT the plan is either way.okay...ramblings over. and i'm blaming any errors or more rambling than my normal on the drugs as we've almost tripled my dosage in the past 48 hours (WITH doc's blessing). of course all prayers & good thoughts are appreciated. i'll post or let someone know if i have to get locked up for a bit.last but not least, i know i haven't been nearly as active in posting on the board (though i still obcessively read EVERYTHING!)and i'm behind in replying to a good number of PMs from some of you & for that i'm sorry. i haven't forgotten & will write back as i'm able. and if i've missed something urgent don't hesitate to bug me again.love to all from the once again dirty fishbowl, melissa Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 20, 2007 Report Share Posted November 20, 2007 Hi Melissa,I hope that you can get rid of the infection at home. I know how difficult it is to be in the hospital. I will be sending you good vibes. Quote Link to comment Share on other sites More sharing options...
pat57 Posted November 20, 2007 Report Share Posted November 20, 2007 thankyou for taking the time and using the energy to fill us in.(((((((((Melissa)))))))) Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted November 20, 2007 Report Share Posted November 20, 2007 Melissa ~I hope the doctors can resolve this situation for you. You have been through so much. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 20, 2007 Report Share Posted November 20, 2007 Prayers and good thoughts coming your way!I'm glad there might be an answer to your fevers besides just general ANS weirdness, though sorry that you are still having to fight so hard!A change of scenery might be nice ... especially if you have nice people around you! Either way, I hope you have a blessed Thanksgiving!Amy Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 20, 2007 Report Share Posted November 20, 2007 Oh Dear, Melissa-As if another round of "mystery" sepsis isn't enough- a problem with your lungs too???? You will be in my prayers big time over this holiday. I recently found a photo of you on this site, (maybe the Summer Newsletter?) I've been meaning to tell you,YOU are as cute as a bug's ear!!!! Rest. heal, and let your immune system & meds clean out that fishbowl.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 20, 2007 Report Share Posted November 20, 2007 Hey Melissa,I've been thinking about you and wondering how you were doing. Thanks for giving an update. That's good that they found an answer to the fevers, but I'm sorry that answer has to be sepsis. I wish I could make all of this go away. I'll be keeping you in my prayers. I hope that the fevers and pain subside enough that you're able to travel for Thanksgiving and enjoy a different place to lay your head.Gentle hugs,Rachel Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 20, 2007 Report Share Posted November 20, 2007 I hope this all gets cleared up soon and while at home. I'm sending you well wishes and plenty of hugs. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 20, 2007 Report Share Posted November 20, 2007 Good luck missy girl....be a good fishy and don't lose that port....you know how I feel sweetie, words don't do it. mamamorgan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 20, 2007 Author Report Share Posted November 20, 2007 thanks all. back with the current update.just got off the phone with my doc & it definitely is a GI bug again but - yippee! - is sensitive to the antibiotics they already started on (levaquin) so i at least won't have to go the hospital for that piece of things. and not even extra IVs. just ten days of meds through the J tube. so good on that front. the fact that it's only one bug (rather than 4, 5 or 6 as in the past) may be why i'm not deathly ill this time around but who knows. we'll have to have more discussion at some point about different possibilities going forward but 9pm when i'm hurting & extra drugged & my doc is at the end of a long day herself isn't the time. i'm glad i have an appointment coming up in a few weeks with the ID doc too as i'll be eager to get his thoughts on things.we didn't have any discussion about the port so - knowing my doctor - we're just not going to go there even in discussion unless things get worse and/or the infection doesn't clear, the fevers don't subside, etc. she & dr. g know as well as i do that it needs to stay in unless there's absolutely no other option. so i'm keeping the prayers, finger crossing, good thoughts, etc up in that regard. normally i like to discuss all options, what-ifs, etc up front but with this one i'm entirely fine with letting sleeping dogs lie unless/ until something dictates otherwise.i have to get a chest x-ray tomorrow & then stick around until she looks at it as there's a chance that it will bring l'hopital back into the equation. when i said to her "at least no hospital" on the phone after the bacteria/ abx news she was like "well, we'll see". she's going to give me a toradol injection while i'm there too which - if it is the suspected lung/ pleuritic inflammatory issue - should help the pain substantially. and if it does help & things aren't bad enough to dictate l'hopital she's going to give me some IV toradol for home too. for inflammatory stuff toradol is magic...it's essentially really hard core motrin/ advil. it doesn't have the icky aspects of narcotics but is WAY stronger than motrin/ advil so, at the risk of sounding like a druggie, i'm looking forward to getting some it in my system ASAP. unfortunately it can only be used for a few days at a time but hopefully the issue - whatever it is - will be resolved by then. melissa Quote Link to comment Share on other sites More sharing options...
lalalisa Posted November 20, 2007 Report Share Posted November 20, 2007 Melissa,Thanks so much for the update. Wow, I'm so sorry to hear about everything that's going on with you. I will definitely be praying that your body will fight off the infections and that you heal quickly and fully. Thanks again for keeping us posted. =)Praying for you,Lisa Quote Link to comment Share on other sites More sharing options...
Maxine Posted November 20, 2007 Report Share Posted November 20, 2007 Sunfish,Have they investigated the possibility that any of your medications could be causing an overgrowth of bacteria? I have read that proton pump inhibitors can cause this by inhibiting the stomach's natural acids that protect the small intestine from bacteria.If acid reflux is secondary to the gastroparesis, maybe something else can be used to protect the esophagus from any backed up stomach acids. PPIs can also cause gastric atrophy----thus the possibility of aggravating gastroparesis.http://www.ptjournal.com/ptjournal/fulltex.../PTJ3103159.pdfJust a thought--- Thinking of you, and hoping things improve for you soon.HUGS,Max :0) Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 20, 2007 Report Share Posted November 20, 2007 MelissaI wondered what was going on with you as you had been pretty quiet. I do appreciate the long DETAILED post to give us a glimpse into what all you are dealing with.I am glad the antibiotic is the proper choice.I hope the lung situation can get fixed quickly and you be free of discomfort. I can only imagine how that adds to feeling like &*$*#(@! on top of the rest.And the holidays! Oy vey. I am such a bah humbug on holidays for a host of reasons...depression that they inspire (due to all the fun relatives being gone and Over the Rainbow to see Dorothy and Toto... for one) and I am not even DEALING with the plateful you have going on.Let me rephrase that...you have stacked plates on a pole, spinning!! Like the used to do on the Ed Sullivan show to the Sabre dance (sorry my age showing!!>??)I am sending thoughts and prayers north towards you as I type.I look forward to an update and continue to be stunned by your gentle spirit amidst the madness.Extra prayers to you.Oh, and my two black and whites say to send "purrs" from them, ok? Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 20, 2007 Report Share Posted November 20, 2007 Here is a link of an old Mill on a hill for you, Melissa. You know the old saying Feel like I have been run through the mill?Well, I am guessing you could write the book on THAT saying.This is an interesting photographer but he overdoes the saturation in some colors in landscapes..and I have no idea why the photos have 'streaks' through the sky except to annoy people like me. Some folks really PhotoCHOP their photos instead of letting nature just be nature, but I digress...http://www.imagezone.biz/ImagePages/crystal_mill_night.html Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 20, 2007 Report Share Posted November 20, 2007 I THINK it's the trails of the stars as the Earth rotates -- like a extended exposure (that's not the right word.) That would explain why the waterfall is so white and fuzzy, too.Nice picture anyway. I'd live there!amy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 20, 2007 Report Share Posted November 20, 2007 Good luck with everything! It sounds like it must be awful!I hope that they find the answer to the lung pain, and are able to help you soon!Hopefully the current antibiotics will kick the infection out soon!!! Wishing you luck!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted November 20, 2007 Report Share Posted November 20, 2007 Not again!You are very attractive to those bugs! We have to get those bacteria out of you!I am sorry you are dealing with another problem but you just fight hard and rest well and get better as fast as you can!With the med allergies and sensitivities and problems we have with drugs, I feel like it is such a challenge to find the right cocktail to keep us free from infection. Please stay away from germs from now on! take care,tearose Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 20, 2007 Report Share Posted November 20, 2007 Glad this one is responsive to antibiotics. I am thinking of you. Thanks for letting us know how you are doing. I know it takes a lot of your energy to keep us informed. Hope you can be comfortable soon. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 21, 2007 Author Report Share Posted November 21, 2007 thanks for your continued words of encouragement, prayers, pics, etc. thankfully i'm home and still avoiding the hospital. yippee!!!and tea, i'd love to stay germ free but unfortunately all the infections i have are coming from within my own body so short of an out-of-body experience it's not going to happen we just have to keep working on how to keep the bugs in the right spots within my body & NOT in my blood, lungs, etc. maxine, ultimately there's nothing more than my cruddy GI tract that's thought to be a problem in regard to the recurrent sepsis. while no one can guarantee that there's nothing else contributing, i'm on the lowest PPI dose possible to keep my throat safe; there really aren't any alternatives for my situation & i had gastroparesis/ motility issues long before i ever took PPIs so they definitely aren't the causative factor. while i am aware of some instances where they can compound digestive troubles, i've talked about it with docs and it's pretty unlikely that it could have anything to do with the severity of my dysfunction. the severity of my GI progression also correlates with the deterioration of numerous other body systems.but onto today's update...it's a good start when my doc walks in and starts with "you look like crap", although when feeling so bad i'd probably prefer that to the opposite. chest x-ray did show pneumonia/ inflammation in my lower left lung - where the significant pain is - but not fluid to the extent that it requires drainage and thus hospitalization at this point. it was a pretty efficient visit wherein just over the timespan of the hour i got the x-rays taken, my doc came down to look at the films with a toradol shot in hand & talked to us there, & we left with a plethera of meds from my doc's supply & the pharmacy in the building....toradol injections that i can give to myself (i am more than happy to poke myself for the relief they provide), the antibiotic that i need for another week, an inhaler, & narcotic/ cough med mix that i'm to take whether i think i need it or not in order to help loosen up the crud in my lungs.i'm still hurting but the toradol definitely helped a lot so that i don't need to be quite as drugged on higher narcotic doses AND can breath a bit easier and less painfully. my doc thinks the pneumonia is related to the sepsis and the reality is that i'm a lot more susceptible to anything lung-related b/c of the severity of the pneumonia/ effusions/ atelactisis this past august when i was in ICU. so chances are no matter what we do preventatively this won't be the last time.thanksgiving plans are still unknown b/c while i'm feeling a tad better there's still no way i could travel at this point so we'll see how much things improve in the next few days. melissa Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 21, 2007 Report Share Posted November 21, 2007 Melissa,I'm glad to hear that you are still out of the hospital. I hope the meds bring some relief so that you can get back to baseline soon. Hang in there. We're thinking of you and praying for you.Love,Rachel Quote Link to comment Share on other sites More sharing options...
deucykub Posted November 21, 2007 Report Share Posted November 21, 2007 Hi, Melissa:In light of all the bad news, I'm happy to hear that some relatively good news has come your way. Sometimes just a little ray of sunshine can make the world feel not quite so grim, so it must be quite a relief to know that the hospital does not seem to be necessary this time around and that the pain is manageable through the new meds. Lung pain really is the pits! You will continue to be in my thoughts and prayers, and I hope that enough relief comes your way to be able to spend Thanksgiving with your family.My husband and I are alone this Thanksgiving and last Thanksgiving as well. I can't leave town because I never know if or when work will let me come back, and my family are all in Florida. They pulled the small accommodations I had that allowed me to work at least some of the time, which has not made this or the last the best of holiday seasons. I was starting to spiral into a real sense of sadness this week.BUT I've decided heck with it all. POTS or no, somehow, I'm going to get a turkey in the oven, microwave all sorts of pre-prepared stuff and have a little Thanksgiving, even if it is just the two of us.I mention this to say - because I know my situation pales in comparison to yours - nevertheless, us Dysautonomia diagnosees can and WILL still have a wonderful Thanksgiving, sickness be DARNED.I wish you the happiest of Thanksgivings, Melissa. I will pray that the day is a good one for you and that the pain abates. Quote Link to comment Share on other sites More sharing options...
corina Posted November 22, 2007 Report Share Posted November 22, 2007 thinking of you melissa, and sending the best of thoughts to keep you out of hospital this time. i would like that to be my thanksgiving present for you (and the capability to go out to celebrate, but i don't even dare think that!)love,corina Quote Link to comment Share on other sites More sharing options...
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