Discussions By Condition: I cannot get a diagnosis.

Sepsis over a year ago, still not right

Posted In: I cannot get a diagnosis. 36 Replies
  • Posted By: kinyeah
  • January 7, 2009
  • 04:26 PM

Hi everyone... I will try to make this brief, In June of 2007 I had routine hernia surgery with a diagnostic laproscope also being done on my intestines. The surgery seemed to go fine, I went home the same day. The next day I woke up in severe pain, I was pretty sick. By 9 pm I was in an ambulance because I was feverish, hallucinating and lathargic. I was in the emergency room over night and moved to CCU the next morning because I was in renal failure, had severe heart palpitations and pneumonia. Sunday they took me back into surgery where they discovered my bowel had been cut during the original surgery. I was totally septic, woke up with a temporary colostomy and on a ventillator. Was on the respirator for about a week, moved into a regular room for a little over another week and sent home with oxygen etc etc. Had the colostomy reversed August 18th. Never felt good once in that time. I got another hernia which they proceeded to operate on in Novemeber. I was still on disability still very sick never feeling good yet. IN December my inscision burst and leaked massive amounts of fluid thru a hole in it. turns out i was allergic to the screen they put in to repair that hernia. Still at this time running fevers on and off, very weak, dizzy etc. They replaced that screen surgically in January. (somewhere in there I had surgery to remove a stitch that was hitting a nerve) I still kept getting an abcess under my inscision that would leak and hurt. In Feb they put a drain in which fell out the next day. I then switched doctors (doesnt take a brick to hit me..lol) When I first went to a new doctor they sent me to a surgeon, who said no way would he do surgery on me again (much to my delight) who sent me to another specialist and so on and so on all these doctors only agreed on one thing...that my body had been thru ***l and I just was not recovered yet....Fast forward to today,I can not work more then two to three hours at a time, I lose my concentration easily, I have trouble breathing, I get extremely exhausted after being up for a few hours. I have a new primary care doctor that did an ekg and found that he thinks my heart may be damaged from all I went thru, I am going to a cardiologist who is doing a bunch of tests. My primary care doctor is saying that I am so weak and sick because I have gained 50 pounds and I have a new hernia and its the pain and weight gain causing me to be so sick and tired. I can not seem to make any doctor understand that this sickness has not stopped, I have not felt better one day since this happened. Does anyone know if there is a condition I should be looking at? Or a specific doctor I should be going to. I can not really find anything concrete on the long term effects of sepsis. I am so sick of being sick and of not knowing the right questions to answer or how to explain myself clearly to doctors. Any information you can provide will be a help. Thank You

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36 Replies:

  • oops, that was "not knowing the right questions to ASK" not answer... also wanted to add that I have severe muscle spasms. I get them all over my body but mostly in my stomach and back.
    kinyeah 31 Replies
    • January 8, 2009
    • 02:32 AM
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  • Hi - my name is Janet, and I need to tell you up front that I am SO SORRY for all you've been through!! OMG - you must feel like you're losing your mind! I, too, have been on the medical treadwheel for over 20 years. My problems are somewhat different than yours, but I am battling an issue (G.I./rectal bleeding) which has been ongoing for 3 years, with no answer in sight. I have spent over 3 months in the hospital (separate stays), had so many "oscopies" (colon, endo, etc.), nuclear med scans, etc. that I could scream. I bleed so much that I have to have almost monthly blood transfusions, which are not pleasant and can be dangerous. NONE of the 8 specialists I've been to can find anything wrong!! I would suggest for you, however, depending on insurance, etc., that you seek the advice of a gastroenterologist (even though they've done me no good), and then perhaps ask whether you are able to either get into the Mayo Clinic/Hospital or the UofA teaching hospital in Tucson. Since Tucson is a "training hospital" - they are always looking for strange and unidentified medical problems. Either of those places are going to be MY next stop if I can get in. You really need a good G.P. - and mine is EXCELLENT!! I trust this man with my entire family's lives. He fought a long, hard fight to get me into doctors who were not on my insurance, and still battles for me every day. His name is James Beach, in Phoenix, AZ, and he is by far the best doctor EVER. If you are not in Arizona, perhaps you could call his office (623-931-9201), and ask for a referral for a physician in your area. I wish you the best of luck, and urge you to seriously rest as much as possible, and DO NOT do things you are not up to doing, it will harm you worse in the long run. Please feel free to contact me anytime, and I will also be seeking advice and information for you . . . Best wishes, Janet
    Anonymous 42789 Replies
    • January 8, 2009
    • 02:49 AM
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  • What are your current lab results?Has your thyroid been checked?You undoubtedly have deconditioning syndrome,which could account for many of your symptoms.
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 00:28 PM
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  • What type of hernia do you have?
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 00:29 PM
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  • Thyroid has been checked -everything normal there.White count was 10.2 three weeks ago is up to 11.7 last week -Dr does not think I need to check it this week.Sed rate and C reactive protein have been up and down this whole time. I have a hiatal hernia that is new and the same umbilical hernia I had the original surgery on..:eek:.What is deconditioning syndrome?Thank you very much for your reply.
    kinyeah 31 Replies
    • January 8, 2009
    • 00:35 PM
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  • ok, assuming I am correct and deconditioning syndrome is just what it sounds like, and not some major medical term that means something else..lol -I have been back to work on and off this whole time. I have not been on bedrest or anything since the beginning. There were some days that I was able to work a full 8 hour shift or even a few weeks where I would work a 40 hour week. Usually I would end up flat on my back for days afterward tho. I also forgot to mention that I go to a pain center for a trapped nerve in the colostomy scar...(what i call the little inscision..) and underneath that scar occasinally turns purple and blotchy..looks a lot like rigor mortis ..lol..but it goes away. It is so nice to beable to ask these question and talk openly without worrying about feeling stupid because my descriptions are silly. I am an intellegent person who just gets confused with trying to explain all the different things that go on on a daily basis. So being able to write them out and sort them out slowly helps.! Thank you again
    kinyeah 31 Replies
    • January 8, 2009
    • 01:17 PM
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  • Deconditioning syndrome is a fancy way of saying you're out of shape.Why do you still have the umbilical hernia?
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 03:20 PM
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  • What meds does the pain center have you on?
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 03:23 PM
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  • No meds at all, the gave me a round of shots which stopped the pain for about a week then i had radio frequency which stopped it for almost three weeks.....sigh. They say they can operate next... Well to find out what was wrong with me they gave me a 6 inch vertical cut, the hernia is about an inch above that, they went thru that same cut to put in a screen to fix this hernia then i rejected the screening they put in.... they again went thru the same inscision to remove that screening and put in another screen. I was told the reason it came back was....that layer of my stomch was "like hamburger meat" and just not holding so it came back again. SO would getting back to work and ignoring the dizziness and weakness etc etc just pushing thru it be best if my doctor agrees its deconditioning syndrome or is there soemthing I could do to just build back my strength..what does one do for that? You don't think this is in response the poisons that were in my body when I was septic?
    kinyeah 31 Replies
    • January 8, 2009
    • 05:05 PM
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  • First,are you in pain?If so,where?If not,why the pain center?Certainly there's recovery time for what you've been through,but I can't say how long that is or was.You might have something like posttraumatic stress disorder,but as for the deconditioning,it can take several weeks to get back into good shape.
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 08:18 PM
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  • the pain is in the scar where the colostomy was, sometimes it burns other times it spasms, generally it is a constant bruise tpye pain. They say it is entrapped nerves. Ahh ok several weeks...the orginal surgery was June of 2007 with the several other surgeries ( i did not mention that they had to go in and remove a stitch that was hitting a nerve or they operated (very minor) to put in a jackson pratt) with the last being the porcine screening in Feb 08. So I should be totally recovered by this time if it was just that ! Is it possible that something was damged due to the sepsis???? And I just cant heal because of that?
    kinyeah 31 Replies
    • January 8, 2009
    • 08:42 PM
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  • the pain is in the scar where the colostomy was, sometimes it burns other times it spasms, generally it is a constant bruise tpye pain. They say it is entrapped nerves. Ahh ok several weeks...the orginal surgery was June of 2007 with the several other surgeries ( i did not mention that they had to go in and remove a stitch that was hitting a nerve or they operated (very minor) to put in a jackson pratt) with the last being the porcine screening in Feb 08. So I should be totally recovered by this time if it was just that ! Is it possible that something was damged due to the sepsis???? And I just cant heal because of that? Hi Kinyeah, It's possible that the physical stress and surgery has depleted your body of the b12 and other cofactors needed to heal. This is how it happens for many folks, some sort of injury, illness, surgery or vaccination is enough to put somebody on the borderline over the edge in which they just can't form new cells fast enough to heal and as the b12 is depleted also their energy is gone. http://forums.wrongdiagnosis.com/showthread.php?p=137492&posted=1#post137492. Come on over and talk about it if you want to try some vitamins on the chance that they could help you heal.
    Freddd 3576 Replies
    • January 8, 2009
    • 11:36 PM
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  • I suppose so,butI wish I had more definitive answers for you.
    richard wayne2b 1232 Replies
    • January 9, 2009
    • 00:45 AM
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  • Janet, I am so sorry for all you have been thru also. I am frustrated after a year and a half (give or take). I can not imagine it going on much longer! Keep your chin up!Thank you for the advice, I am about 10 minutes from New York and some of the better hospitals there may be my next stop...Feel free to seek me out to talk to me!!!!!
    kinyeah 31 Replies
    • January 9, 2009
    • 02:44 AM
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  • The stress test and holter monitor came back normal. They did the echo now. I will not have those results for a few days. They also decided that I have RAD? from the ventilator
    kinyeah 31 Replies
    • January 10, 2009
    • 02:56 PM
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  • What is RAD?
    richard wayne2b 1232 Replies
    • January 10, 2009
    • 04:58 PM
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  • Reactive airway Disease....I get bronchitis or an upper respitory infection if I even walk passed someone with a cold..lol I did not know that being on a respirator for that short of a time could have lasting effects!
    kinyeah 31 Replies
    • January 10, 2009
    • 06:23 PM
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  • Realize that based upon the description of the events that unfolded subsequent to your initial surgery, the systemic inflammatory response syndrome that, when coupled with infection produces sepsis, can be prolonged and sometimes represent the underlying progenitor of systemic inflammation capable of causing a host of problems. While I do agree that some of your symptomatology is representative of decontitioning, it might be wise to have some labs performed. Anytime the body undergoes prolonged insult from trauma, in this case surgery, proinflammatory cytokines are produced that circulate and in some cases, be secondarily destructive. The Renin-Angiotensin system, responsible for blood pressure regularion and water balance, plays a role in the mediation of cytokine production and since your history reveals impaired kidney function secondary to the sepsis, I would be concerned whether serum cytokines are somewhat responsible for the persistent inflammation that would normally be overcome by the body. Also realize that in certain instances, cytokine-mediated inflammation can cause lung injury and I would question whether your symptoms are the merely the consequence of reactive airway disease secondary to ventilator use at this late stage. In addition, based upon your description, there seems to potentially be a problem in the healing process which even in the presence of repeated surgical intervention, should be more progressive at this stage. Understand that in cases such as this, there is a potential for cytokine production to remain stimulated due to a molecule that is produced by T-cells known as OX40. OX40 is produced when T-cells are stimulated by factors that suggest survivability may be at risk and therefore the OX40 binds to T-cell receptors and causes the T-cells to continue working at a very elevated and prolonged level at the site of inflammation. While it might be conjectured that this process would speed healing, it can have the rather paradoxical effect of damaging or thwarting the body's ability to heal by elevated proinflammatory cytokine production. Furthermore, the notation that your cardiologist believes you may have suffered heart damage makes me even more suspect that we have a problem associated with T-cell and cytokine mediation. My suggestion is have your doctors perform laboratory studies to determine cytokine and T-cell production. There are several ways to approach treatment if indeed cytokines are responsible here. Use of ACE inhibitors and Angiotensin II blockers have demonstrated success in mediating cytokine activity. Also, X40 immunoglobulin therapy can suppress T-cell activity and subsequently thwart cytokine production. TNF-alpha is the particular inflammatory cytokine implicated in damage to the epitheleal cells of the lungs and airway that requires the presence of angiotensin II, again which can be mediated by the use of angiotensin receptor blocking drugs that can demonstrate improvement in symptoms. Although under normal circumstances your constellation of symptoms would be waived as factors unrelated to the circumstances, I'm going to strongly suggest that because of your particular history you have your doctors look into the potential for cytokine dysregulation here due to the fact that continuation of its presence can result in permanent damage to the heart, lungs, etc. While most cases of this type of response by the body is observed in the acute stage, there are numerous examples of sub-threshold presence of cytokine dysregulation that produces the unwanted results and does require treatment. Keep us posted on any results. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 10, 2009
    • 11:23 PM
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  • While I do admit that I had to break your post down into smaller sentences (ha ha....there were some terms that I have never heard before) I think I have an idea of what specifically to ask my doctor to test!I will call first thing Monday morning because as of now I am supposed to be once again attempting to return to work (I have been in and out of work this whole time, basicallly before I have been ready, which causes me to work a few days and be flat on my butt again) on 2-1 and my appointment that I have scheduled now is approx 2 days before that. So I would not have any results from any labs before I returned to work. I assume that it would be much better to get them done sooner and maybe start treating me so that I can start to be a productive member of society again. And possible remain at work when I go back, even if I would have to prolong my return a little bit. I am attemtping to attache my health time line in case I forgot anything on here....please excuse the spelling and format thsi is only for my personal use so that i could try to remember everything
    kinyeah 31 Replies
    • January 11, 2009
    • 00:14 PM
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  • I got all the results from my cardiologist and everything came back normal Thank God. So I am finished with that doctor. One down! The only bad thing about that is that he is the only doctor I felt comfortable talking to. I still do not know how to approach my primary about testing for the things I got information about on here. I am nervous to say "oh yea I know you can't find what is wrong with me but there is this website that gave me some good ideas?????" Any suggestiongs on how to bring this up without insulting him.
    kinyeah 31 Replies
    • January 14, 2009
    • 06:58 PM
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