Guest ANCY Posted December 1, 2016 Report Share Posted December 1, 2016 Hello all and thanks in advance for any thoughts or ideas. Almost 6 months ago I had an open J tube placement with abut a 4 inch midline incision. Long story short it opened completely a couple days after surgery and what we thought were 3 separate times of it being infected is actually a constant infection. The site has never completely healed and now has ulcerated. After seeing infections disease we were disheartened to hear that antibiotics will not clear this infection it will have to be surgically cut away in order to irradicate the infection. As always it has also affected my underlying issues, especially my gut motility, leading to acute kidney failure from severe dehydration, necessitating a PICC line and iv fluids, another high risk of infection for me since I've already had 5 sepsis events. So not the best situation to be in.. Are there any related conditions to dysautonomia that cause you to be infection prone that I could look into? it's been on the back burner with my medical team and obviously now something more urgent to be figure out. Thanks! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 1, 2016 Report Share Posted December 1, 2016 Ancy sorry I don't have anything useful to post but just wanted to say how sorry to hear your are having such a rotten time . Sending best wishes to you Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 1, 2016 Report Share Posted December 1, 2016 Thanks dancer65. It has been rough with this decline after such an improvement earlier this year. This to shall pass. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted December 2, 2016 Report Share Posted December 2, 2016 Hi, there, Ancy! I was thinking of you a few weeks ago and wondered how you were doing. I'm in the same boat with Dancer and don't have any medical suggestions atm, but I just wanted to let you know hearing this made me sad. I'm sorry your having these complications, I hope your pain is not terrible? Hang in there and sending you hugs. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 2, 2016 Report Share Posted December 2, 2016 Well that's sweet of you to think of me! I've been a silent part to the forum the last couple months because of how things have been going... pain is a part of it all but right now fever aches that will not let up are at the forefront... keep spiking fevers over 104 and can't seem to recover between. hoping I can hold out till my appointment with the surgeon Tuesday, really don't want to be in the hospital this weekend... would kind of ruin the plans for my twin's birthday. mine is just to stay out of the hospital but my sis was going to go on a trail ride through Garden of the Gods. Sorry for blubbering on, my mind is kind of spacey with the fevers... Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted December 2, 2016 Report Share Posted December 2, 2016 You aren't blabbering, don't worry I didn't know you had twins! Gosh, that must be challenging some days with how yucky you feel. Sepsis is horrible. You don't think you have a kidney infection or uti right?. I was hospitalized about 6 months ago from sepsis due to a kidney infection. It was awful, so I can't imagine how you've felt going through this 5 times. Once was way more than enough! Please be careful that you don't push yourself too hard this weekend, or try to hold out too long until your appointment. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 2, 2016 Report Share Posted December 2, 2016 Just to clarify, I am a twin. ?I do have twin nieces on the way though. ☺So not really a challenge in fact rather the oposite, she's my main caregiver. She's so awesome I don't want to mess up her plans although of course she would understand, we're really close. Sorry to hear of your trouble 6 months ago, I can only imagine! kidney infections are terrible. I hope you're fully recovered by now? As of last week no uti or kidney infection, most likely cause for me would be the abdominal infection which is about 2 inches deep if it travels the full depth of the scar tissue seen on CT or a complication of the hernia, another gift of this surgery... Our prayer is that it's not sepsis because it could potentially infect the pacemaker which would be devastating, as you well know, I'm very dependent on it. Last check was pacing 89% of the time so life would be, well, not good... I do have a palliative care NP coming out tomorrow so maybe she can help us decide what to do with all this drama. My family has been awesome, going the extra mile to cheer me up. Today they brought in my littlest goat (considering training her as a therapy goat) and she sat on my bed and visited for almost an hour. Sweet little thing! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted December 2, 2016 Report Share Posted December 2, 2016 Oh OK, gotcha! Your sister sounds just as wonderful as you are, and I'm sure would understand if you guys had a detour in your plans. Serious things seem to happen at the most inconvenient times, don't they? Like before a big event, or on a weekend, lol. When my local pots dr. goes on vacation, I tell him I hope he has a great time but because he's gone something terrible will strike. It never fails haha I recovered fully from the sepsis and rather quickly fortunately. Probably because it was identified and treated quickly, the kidney infection caused a stabbing jolt through my back every time I took a breath. I didn't put up with that for more than a couple of hours. AND, my dr. was on vaca during that issue also, lol! I was wondering how you were making out with the pacemaker. Pacing at 89% is just great. It must have been a total game changer for you! Hopefully the nurse coming in tomorrow can shed some light on what your next step should be, putting the pacemaker in jeopardy has to be terrifying! So glad you have a great support system in your family, that's so important. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 2, 2016 Report Share Posted December 2, 2016 That's for sure lol! Your story is so relatable to me and I'm sure many others. I always seem to have problems over the weekend, ugh... Just got back from getting blood cultures drawn so will wait and see... to many indications to ignore. Yes truly don't like the thought of the pacemaker being affected, partly why went ahead and got the labs drawn even though my fevers not super high right now. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 3, 2016 Report Share Posted December 3, 2016 (edited) I'm very ill so this will be short. To your question, some have found they have CVID, chronic variable immune deficiency. To test, total Ig, plus all Ig subtypes, IgA, IgE, IgG, IgM need to tested. It's rare but at least 2 or 3 of our members have been diagnosed. Edited December 3, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 3, 2016 Report Share Posted December 3, 2016 Sorry to hear you are having a hard time, thanks for being willing to comment anyway. CVID definitely sounds like something worth looking in to. thanks so much! Quote Link to comment Share on other sites More sharing options...
gackedo Posted December 4, 2016 Report Share Posted December 4, 2016 I have been diagnosed with CVID and have been giving myself SQ immunoglobulin infusions every week for about a year. Maybe it's something you could check out with your doctor. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 7, 2016 Report Share Posted December 7, 2016 Thank you gackedo I think I would like to since at one point I had ivig and it was very helpful. In the hospital right now with sepsis and possible meningitis, waiting on csf cultures... Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted December 8, 2016 Report Share Posted December 8, 2016 ANCY, So, so sorry to hear that you are so very ill. You will be in my prayers. Hang in there, sweetie! Sending you a short DM. Quote Link to comment Share on other sites More sharing options...
corina Posted December 9, 2016 Report Share Posted December 9, 2016 So sorry Ancy! Hope things will get better real soon. Sending healing thoughts your way! Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 10, 2016 Report Share Posted December 10, 2016 I'm so sorry to hear how I'll you are, Ancy! I hope those tests brought some answers and they are getting the acute infection under control. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 11, 2016 Report Share Posted December 11, 2016 Thank you all for the prayers, thoughts, and well wishes. Concluding day 6 in the hospital and am starting to feel much better. I was diagnosed with sepsis and 3 different bacteria grew out in the blood cultures. They said I have aseptic meningitis, so not a huge concern there since the CF culture never grew anything and the antibiotics I'm on would cover it anyway. Thankfully the 3 IV antibiotics they have me on seem to be working real well and the plan is to send me home Monday. As long as they can get a new PICC in and set up iv antibiotics at home. One unexpected blessing is that they have been able to bring my whacky electrolytes back into more of a balance. Unfortunately they can't continue those at home so malnutrition is getting to be a problem all its own.... After I'm home and healed from the infection the plan is to fix the very large hernia they visualized on the CT. Surgeon said it would be a complicated repair so needs to be doNE by the original surgeon, who practices at another hospital. Not what I wanted to do but... don't have the health or time to wait and fight that battle. Thank you all for you well wishes. welcome any advice. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 11, 2016 Report Share Posted December 11, 2016 Good to hear your feeling better wishing you all the best for a speedy recovery ! Hugs ! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 11, 2016 Report Share Posted December 11, 2016 Thank you dancer! things are still looking pretty good, just dropped several of my electrolytes this morning.... so more replacement today I guess... MD wants my potassium over 4 but not sure we will ever get there lol! They are already maxing out on how much they can suplementing in a day but theN I drop again by morning labs... anyone else have trouble keeping their potassium balanced? What about other electrolytes? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted December 11, 2016 Report Share Posted December 11, 2016 Ancy - you poor thing, so sorry you had this set back. My potassium has been high the last 2 times it's been checked - and I'm taking Florinef, which is known to deplete potassium, so no idea why I'm high, but hoping this was the cause of the bradycardia I was experiencing for a while. My chloride was wonky too but normalized on it's own. Is your bicarbonate abnormal because of the sepsis? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 12, 2016 Report Share Posted December 12, 2016 That has to be frustrating! what are they doing about it? Bicarbonate, phosphorus, sodium, chloride, calcium, Potassium have all been off in varying degrees and they seem to get one up and another drops, especially potassium... Interestingly sepsis seems to have messed with all my blood counts bringing me back into anemic levels as well as an almost too low wbc. Today they are up a little so hopefully just a temporary problem. My prothrombin and INR have also been higher than normal all week for some reason and they've been checking it every day. Plan is to get a new PICC this AM and discharge in the afternoon with iv antibiotics and fluids, maybe with added potassium. Looking forward to being home! My own bed and no middle of the night checks lol! Also to follow up with the surgeon outpatient about the hernia repair. Quote Link to comment Share on other sites More sharing options...
corina Posted December 12, 2016 Report Share Posted December 12, 2016 Hope things will go according to plan and you will be home real soon Ancy! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 12, 2016 Report Share Posted December 12, 2016 Lol! things go according to planned? does it ever with us lol! I'm pretty sure I'll still be going home but now my feeding tube is falling out so a little hiccup in the plan lol! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted December 12, 2016 Report Share Posted December 12, 2016 Sorry to hear that...My fiance tells me to play the lottery because I always seem to be included in that 1 in a million category. Haha! To lower my potassium, I took an Rx, kionex in solution form. I haven't experienced bradycardia so it appeared to have worked. I will have more labs this wed to see how my electrolytes look. I hope you get to go home, being back in your own space with your pets and family is priceless. I'm sure your goat misses you! Did they put you on iron for the anemia? Since your in the hospital w/germs, maybe you picked up a little virus or something that could've lowered your WBC? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted December 12, 2016 Report Share Posted December 12, 2016 Yes lol! maybe we'd all be winners lol! just got bumped to tomorrow, I guess they have an emergent case in IR so they are keeping me another night... bummer! so ready to go home... I hope your labs check out! curious what they will do for mine, dropping more and they're running more IV potassium but you can't do that at home... They are not wanting to treat the anemia, they are referring me back to the hematologist I saw outpatient for iron infusions. not sure about the bug, it's a little strange because in my spinal fluid they're elevated but my blood wbc is low... idk... Quote Link to comment Share on other sites More sharing options...
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