MightyMouse Posted October 16, 2007 Report Share Posted October 16, 2007 how're ya doing on the abx? nina Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 16, 2007 Author Report Share Posted October 16, 2007 super quick update as i have a 1pm appointment....three days fever free. yippee!!! a bad tummy day yesterday, but still fever free. i knew they were wearing me out but didn't even realize how badly until a day or two without. so the abx are doing their stuff, whether in the lungs or in some other hidden locale. the pathetic thing is that this whole fever ordeal was pretty much the least exciting medical event of my past year.i'll come back to answer the few questions later but wanted to quickly share the good news... melissa Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 16, 2007 Report Share Posted October 16, 2007 good to "see" you Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 17, 2007 Report Share Posted October 17, 2007 It's good to hear from you, Melissa. I'm glad you've had 3 fever free days in a row. I'll pray that they continue and that the antibiotics keep working for you. Rachel Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 17, 2007 Report Share Posted October 17, 2007 glad the fevers are banished--hope that's a permanent solution! Nina Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 17, 2007 Report Share Posted October 17, 2007 Yay! I'm glad you're feeling a bit better. Let's hope it continues!Amy Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted October 17, 2007 Report Share Posted October 17, 2007 HooRAY!!! for Fever-Free!! I've been thinking about you and praying for you. It's wonderful that there is a definite cause and an apparent solution! no witty words to offer-- just happy for you Kristen Quote Link to comment Share on other sites More sharing options...
corina Posted October 17, 2007 Report Share Posted October 17, 2007 hurray for you melissa!!!!now, i?ve been thinking, as we now have a new pond in our (newly decorated) garden, i will save a special place for you to come over for a swim!!! i will take VERY good care of you (as will all my boys ) and make sure that you will be spoiled rotten. wouldn't it be nice to swim in a different bowl now and then??? (and NOT a hospital bowl this time!!!).i hope you continue doing better, you deserve it!!!love,corina Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 19, 2007 Author Report Share Posted October 19, 2007 gggggggggggrrrrrrrrrrrrrrrrrrr. time to rev the prayers & good thoughts back up. the fevers - though thankfully none of the higher ones - are back. yesterday & today. to say the least i'm a bit frustrated. i have an appt with my PCP next week & then my assortment of specialists in the coming weeks/ months that may or may not be pertinant to the fever (pulmonologist to follow up re: the pneumonia/ lung collapse issues, grubb wherein we can discuss the possibility of the fevers "just" being an autonomic issue, & infectious disease doc for MRSA follow-up, though unfortunately that one isn't until mid december). i will be honest that with all the MRSA headlines these past few days i'm wondering if there's any way that has flared back up in my system, though i would think i'd be sicker if that were the case. i've heard/ read/ been told a lot of conflicting info re: MRSA in general though so don't feel that i have a good understanding on certain aspects of it. and while some docs during my hospital stay mentioned doing follow-up blood cultures when my antibiotic course was completed (from the hospital stay, not those i'm on now) at discharge the decision was made that it wasn't necessary. (i had clean cultures in the hospital prior to discharge but was still on abx at that point).pooh - unfortunately i can relate to the nasty lung stuff you went through as both of lungs were partially collapsed, i had pneumonia in every lobe, pleural effusions on both sides, etc. i was pretty out of it at the time but the few things i do recall were the unpleasant procedures (drainage, tubes, scopes, etc). so sorry that you've had to deal with much of the same & you're certainly right that i would much prefer to avoid any more of the same moving forward. regarding the port access, in all honesty it hasn't happened yet for a variety of reasons, though barring any craziness i'll be giving it a go when my nurse comes tomorrow. at this point i need access continuously so the nurse has done the access weekly; my regular nurse was away my first few weeks home & the fill-in was skeptical of my being able to do it so rather than convincing her i opted to wait for my regular nurse to be back who, as i expected, is all for my accessing on my own. the past two weeks though i've been spiking high fevers &/or been in the midst of the pre-fever chills (with accompanying shakes) so haven't been in any shape to give it a try. i do have a double port which makes access a bit trickier but we're still sure i'll be able to do it; i theorectically already know how but up until now things just haven't worked out for me to start the self-stabbing. by this time tomorrow i'll should be a pro .friday - i'm sorry that you're dealing with some fevers yourself. though i don't have a set "normal" temp i too tend to run below 98.6, generally between 97-98. in reality a lot of people have temps that are a bit lower/ higher than the textbook norm; you're right that it can change what constitutes a fever, though in general most docs still won't be too concerned until someone's in triple digits, especially if there isn't official documentation (not just from the patient) of lower norms. low fevers are often a wait & watch situation if there aren't other presenting symptoms &/ or obvious risk factors (urinary catheterization, central line, etc.). but anyhoo...'ll try to answer your questions but feel free to let me know if i don't do so fully. in regard to the bloodwork i had done, my PCP first ran only CBC (complete blood count), metabolic panel (electrolytes, proteins, liver & kidney functions, etc) & pancreatic functions (as i've had several bouts of pancreatitis in past months). she actually chose not to do blood cultures initially but rather wait on the white cell count; if it had been up or down (either of which can indicate infection) we would have done them then. the results were essentially all "beautiful" though, with the exception of my chronic anemia, so at that point we thought the fevers were a reaction to a particular antibiotic i was on & were relieved that there didn't seem to be an infection brewing. when i see her next week though i'm guessing we'll be repeating all of that & then some, likely including cultures, since we've now established that the suspected antibiotic wasn't the culprit. my pulmonologist then unexpectedly found the partially collapsed lung/ pneumonia when i had my follow-up x-ray/ appointment from my last hospitalization (wherein i had severe pneumonia/ pleural effusions/ collapses). she then got me in for an immediate CT scan and after seeing the results started me back on antibiotics, though was honest with me that she wasn't confident the fevers were b/c of the lung issues. there's a chance that the lung findings aren't infectious, particularly with a normal white cell count, but with the recurrent fevers & my history of sepsis she didn't want to take any chances and is in fact hoping that it IS an infection b/c if not it will mean further invasive testing to determine what is in fact going on in my lungs.i'm not sure if you read this entire thread, but one thing that may be a possibility for you (and is still on the table for me) is temperature dysregulation due to autonomic dysfunction. from what i've been told this is more likely with lower fevers (such as you're having) than higher, but it's always a possibility. it's not common though & thus would never be settled on until any/ all other causes are ruled out (infection, inflammation, autoimmune, med reaction, etc).corina - the pond (and your garden) sound beautiful! i would love to spend time there & have no doubt that you & your family would take EXCELLENT care of me! now we'd just need to figure out how to get me from here to there, right? i used to be a long-distance swimmer but even then don't think i could have quite made it across the ocean!seriously, though, it would be wonderful to be able to meet you someday, whether in here or there. but until then i'd love to see pictures of the new garden & pond, as i'm sure others would. i hope that it brings you a lot of enjoyment.so while i'm far from happy about it, that's the current scoop.... melissa Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 19, 2007 Report Share Posted October 19, 2007 That's too bad, Melissa. I was hoping that you'd licked it!Well, we'll just have to keep the good thoughts and prayers coming!Amy Quote Link to comment Share on other sites More sharing options...
Madwife Posted October 19, 2007 Report Share Posted October 19, 2007 Melissa so sorry to hear your not feeling great, keeping you in my thoughts and prayers x Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 19, 2007 Report Share Posted October 19, 2007 I'm so sorry to hear the fevers have returned, Melissa. We'll keep those prayers coming. Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 20, 2007 Report Share Posted October 20, 2007 MelissaI am sorry I missed the good days update only to hear you are back with the &@#^@&$^@&$^& fever stuff again.It sounds so trite but I am sending thoughts and prayers to you.and maybe I need to send a pint of Graeters ice cream to you to just pour on your neck and cool you off. Not funny, as you have so many things going on....Hope the tests point to something and you get a break SOON.Soph Quote Link to comment Share on other sites More sharing options...
lalalisa Posted October 20, 2007 Report Share Posted October 20, 2007 Melissa,Wow, I'm sorry to hear that the fevers are back. I will continue to pray for you and that the dr's will have wisdom as to how to care for you.Praying!Love,Lisa Quote Link to comment Share on other sites More sharing options...
corina Posted October 20, 2007 Report Share Posted October 20, 2007 melissa, i am very sorry you're back with the fevers. luckily not as hygh as they were, still they shouldn't bother you (as a lot of us will agree, i'm sure!!!). my grandmum had mrsa and it never left her, it was stable and calm most of the time, but flared up now and then which made her very ill. of course she got it from a hospital stay (which must be so VERY frustrating as you're in hospital to get BETTER and NOT to get more ill ). i hope your medical team will be able to help you out.as the plants still have to be planted in our modest (town house) garden, we do have some plants in the pond. as soon as the plants are planted (within two weeks) i will try and make photos to send to katherine. for my birthday hubby gave me a GREAT new digital camera which made me SOOOOOOO happy as i love making photo's. we have plans to come to the usa next year (for our 25 years wedding anniversary) but do need to save more money as we spend a lot of money remodelling our home this last year. i do have this list of people i would love to meet . . . . . . . . . (which made my boys ask if i had planned on staying for a year or so )i'll keep on thinking about you melissa, and send you a big hug and the best of best wishes for you to feel a little better!!!love,corina Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 20, 2007 Report Share Posted October 20, 2007 Hope you get to feeling better again soon! Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 20, 2007 Report Share Posted October 20, 2007 Melissa, I'm sorry to hear your dealing with those nasty fevers again. I hope your future appointments give you and your Docs some insight on what's going on.The ANS cause for the fevers doesn't sound right, because like you said, the fevers are usually low grade. When I first crashed I had low grade fevers for a month. Just this week I've been struggling with low grade fevers.My POTS has been acting up as well----so hard to tell if it's the virus I've been struggling with for the last month, or the ANS issues.I sure hope the Docs can find the cause behind all this for you, and you can get back to being a bit more functional. Take care of yourself.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 20, 2007 Report Share Posted October 20, 2007 I'm sorry the recurrent fevers continue to be a problem with no good answers. I am thinking of you, Katherine Quote Link to comment Share on other sites More sharing options...
morgan617 Posted October 20, 2007 Report Share Posted October 20, 2007 Don't make me come there with my can of whip butt and beat those fevers out of you....your fish bowl needs cool Atlantic, not warm Pacific water, to keep you cooled down, girl....prayers and thoughts a comin your way...mamamorgan Quote Link to comment Share on other sites More sharing options...
Poohbear Posted October 20, 2007 Report Share Posted October 20, 2007 I wish I knew what to say.I'm thinking of you. Keep us posted as you feel up to it. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 24, 2007 Author Report Share Posted October 24, 2007 well, for better or for worse, the current thought is that the fevers are "just" an autonomic issue. i'm finished with my antibiotic tomorrow and have a follow-up CT scan on monday but after seeing my PCP today we both agree that after almost six weeks i'd be a lot sicker if it were an infection of any sort. i see dr. grubb in mid-november so combined with the pulmonary follow-up that will obviously round out the discussion but nothing else makes a lot of sense at this point. the fact that i haven't had anything over 102.7 may very well be b/c i'm treating the fevers sooner and thus possibly keeping them from spiking higher. i'm obviously not thrilled about the prospect of this being my new norm and am not totally settled on or accepting of this yet but if i haven't learned by now that i'm not the one in control of what goes on (or doesn't go on) in my body (nevermind anything else) then i'm a REALLY slow learner! so, if this ends up being the case i'll learn to deal with it the best i can. in this regard we're actually going to try pre-treating, i.e. taking tylenol constantly while awake rather than once i get the fevers. and if i need/ want to go out she gave me the okay to take motrin & tylenol together as needed as well. so we'll see. thankfully my liver is happy these days which gives us more room to play with this. at some point we'd obviously stop the meds and see if the fevers return (if they seem to subside) but if it brings a bit of relief i'll be glad to have it for now. though i think i may start crushing tylenol b/c i'm going to go broke with the liquid...it's almost a dollar a dose for an adult dose!! of course that's the least of my worries but i can certainly find better things to spend money on if it's not necessary.so...that's the scoop. i'm still curious to see what the chest CT shows but based on the report only (not the actual film) my PCP doesn't seem to think it's anything significant. and of course what dr. grubb has to add next month will be interesting as well but i'm starting to feel that this (my autonomic dysregulation) might be the issue.sigh... melissa Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 24, 2007 Report Share Posted October 24, 2007 Melissa Frustrating there is no final answer to the fevers and it's just part of the ANS issues. I realize anything is possible and also know, you have many layers of issues going on, besides the autonomic stuff. Thanks for taking the time and energy for an update.It's one thing to just post, but sometimes more tiring to post updates on one's own personal struggles. I continue to admire your ability to do so yet stay so kind, thoughtful and supportive of so many OTHERS!Take careSoph Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 24, 2007 Report Share Posted October 24, 2007 Ugh. That stinks Melissa--but I hope it means that sepsis is less likely... Nina Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 24, 2007 Report Share Posted October 24, 2007 I hate that there is no clear, reasolveable cause for the fevers. But the idea that it's probably not sepsis is fabulous! I will pray that this is NOT your "new normal" and this passes as one of many weird blips you've had to deal with, Melissa. Chin up.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 24, 2007 Report Share Posted October 24, 2007 Melissa,I'm sorry to hear that the fevers look to be a new norm for you. Yucky.Thank you for all you do for us even in the midst of your own trials.Hugs,Rachel Quote Link to comment Share on other sites More sharing options...
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