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  1. #61
    Posting Addict SparkleMomma's Avatar
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    I am back. My energy is actually rather good today! I can keep my head up without getting dizzy & it has been a few hours since I had to lie down

    I want to make this story an informative one. An awareness. Although it is very hard to prevent sepsis, there are some things that can be done to help to not get it.

    I've not posted my story here yet, haven't really felt like it. But it is scarey & one that should raise awareness. I think I am part cat. Seriously though, I am not sure how "may lives" I do have, but I really don't want to find out anymore. I never would have thought after Liam's birth that I would be "near death" again. But I was. 7 years, 5 months and 8 days later.

    Many of you know that I have been "sick" battling Group A Strep since my pelvic node removal on Feb 12th. On March 19th, I began my new cycle with IV antibiotics to fight it. I went home that night & proceded to get violently ill. I mean so ill that I can still remember the inside of my head going cold when I would stand up. Then I would pass out. This went on from about 7PM on the 19th until I finally called my Mom to bring me to the hospital at 6AM on the 20th.

    I remember SO bringing me out to the truck because I couldn't fully stand. I didn't want the boys to see me like that. I laid in the back seat of the truck & could talk to my parents. At the ER, they got me a wheelchair. We went in & my Mom started talking to the Triage nurse because I had made a friend in an old ice cream pail. I remember the nurse was trying to ask me questions, then I said I wasn't feeling right and that my head was going cold again. They took my blood pressure and found that it was only 74 over something. I got put into a room right away. At this point no one knew what was going on, only that I was very very sick. I had to get lifted out of the wheelchair by 2 men because I was deadweight.

    The subject of sepsis came up quickly, in light of my leg complications. My blood pressure continued to drop & so did my conscienceness. I got put quickly into a Trauma room. I don't remember much more beyond this, other than what I have since been told. I do remember a swarm of tons of people, respiratory, ICU docs, my OB, Internalists, nurses, radiologists being in there at any given time. It was packed. In all this, I still did not have a fever, and didn't get one until a few hours later.

    Sepsis did get confirmed, but added to the mystery. I had a Staph infection. Not the GAS that my leg had. Then I had XRays done in trauma {not sure why}. I had to have an ART {arterial} line put into my right wrist. That hurt. Never had an IV put in before needing a scalpel and stictches. Then I remember them telling me they needed to put a central line in. I said "OK", not knowing what that was. Next thing I knew, my face was draped and I was being numbed in my neck. It consisted of an IV into my jugular. Quite the thing I saw a few days later. It hurt so bad & actually my neck is still sore from it. However, it saved my life, no doubt.

    Then talk of transfering me to ICU came up. All the bloodwork they were taking from my ART line showed that I was already having liver failure and my kidneys were not too far behind. My platlets were also pretty bad off. I did go to ICU fairly quickly & I remember how wonderful the nurses there are. In my moments of consciecness, they helped to try and let me know what was happening. I had 2 bad bouts of attacks. I only remember one though, the second, that happened on my second day in ICU. They were doing vital checks on me and I had one of those stupid paper thermometers in my mouth, when I tensed up completely. I curled almost fetal like. And felt like stone. I could talk through my clentched teeth however. I had a major bout of Tachcardia and they had to shoot me full of meds and sedatives through the central line. I woke up a few hours later. My liver was very angry. Not happy at all. My blood pressure was still all over the place and very low, 43's, 54's, that sort of thing, so they would pump me full of BP meds through the CL & I remember how much that stuff literally hurt my heart, like a huge jolt.

    ETA 04Apr08:
    I really don't remembe much of my time in ICU, only that the nurses and docs were wonderful. I had to go for another CT and it still showed a bunch of kidney stones in my right kidney. Some were trapped by one of my "residual" ureters & they figure that this is/was the culprit. I do still have them in and not sure what they are going to do with them. I went to the regular ward on Saturday. I know that the doctor who transferred my care to him I kinda told off! For the millionth time he was asking me what happened, where I was at that moment, what year blah blah blah. I remember that I told him I was too tired to talk anymore and he could go read the chart!!! When I awoke in the ward, and remember what I said, I felt so bad & was actually embarassed! i did apologize to him, but he told me no worries! I swera though, he was younger than me!! I had to have daily EKG's and bloodwork and Heparin and all sorts of fun. I remember my docs from work coming to visit me and kind of explaining things. I was put on a trial drug {or maybe a placebo} called ART-123 that they give in dying patients with sepsis and DIC to try and help the progression of organ failure. Without a doubt, I know I did get the drug. I am alive. They tell me I am alive really, only because of my age. Severe sepsis is deadly. Severe sepsis with DIC is even deadlier. Finally on Saturday, the Invensivist told my Mom that he does not think "she is going to die today". That is when things started to look up.

    Here are some pics for now. There is a graphic one, my central line uncovered. If needles bother you, please skip, as this one is in my jugular.

    I am also waiting for PB to resize these..

    Central Line Covered:


    Central Line Uncovered:
























    Nice bruising from my arterial line:


    And once I was in the regular ward, I was bored with my Heparin shots, so thought maybe I could do "connect the dots"!!
    Last edited by SparkleMomma; 04-18-2008 at 07:15 PM.

  2. #62
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    I've got to finish the story, but really, I have not had the energy still to do much. I can't believe that this long later & I am still not well. All the docs tell me this is normal & that it could take months for my system to be "normal" again. Seriously? Does it NOT know that I do have a life to continue living?!! You get sick, you get better, no? No is right I guess.

    I have a bleeding disorder. You think? Did it really take all these years & all that happened to figure it out? You would think that after getting cartledge in my nose cauterized {at 9YO}for nosebleeds that would happen if I moved my head too fast {since EARLY childhood}. No, it took me getting hit in the face by an Oiler's hockey puck to cause hematomas in my cheek to get that done. Then, it didn't take nearly bleeding to death after the birth of my first born. Wasn't that supposed to be a special time? Why am I not allowed to remember it? Did it take my many "unexplained" MC's, or my horrible AF's? NO WAY. von Willebrand Disease and Factor VIII

    What did it take? A BLOOD TEST. A simple poke in ICU for unexplained blood pressure loss {lowest 83/32}. Hemoglobin 91, MCV 84, Platelets 93, WBC 8.3, ESR 4, Bilirubin 32, AST & ALT 875 & 461. Moderate anemia, moderate thrombocytopenia and neutrophilic leukocytosis with toxic change. Blood cultures showed Stenotrophomonas maltophilia. Not to mention sinus tachycardia at 124 BPM, boarderline T-wave abnormalities diffusely {non specific}. CT shows stone disease, obsrtruction and mild hydronephrosis and duplicated collecting system of right kidney.

    And if thatwasn't enough, because of the "kindness" of the Central line, I was blessed with the gift of bilateral pleural effusions and atelectatic changes in both lungs that I am still dealing with. OMG, that pain is horrible. I would not wish it on my worst enemy.

    Then, CT of my neck showed disc space narrowing at C5-6 associated with a posterior osteophyte to the left midline at C6. plus moderate-sized disc protrusion central and to the left of midline.

    I had abnormal liver transaminases secondary to septic shock and hypoperfusion. I had renal insufficiency secondary to hypotension. I had thrombocytopenia and elevation of INR secondary to DIC.

    Basically the "final" diagnosis is, I had sepsis DIC of unknown origin, possibly secondary to infected L groin node biopsy or Urosepsis. Shock liver, renal insufficiency, secondary to hypoperfusion, Disseminated Intravascular Coagulation.

    But, I am alive.

  3. #63
    Posting Addict SparkleMomma's Avatar
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    Now for sepsis information.

    Q: What is sepsis?
    A: It is a systemic response to infection - usually serious. Sepsis usually leads to multi-organ failure and hence needs critical care at an ICU [Intensive Care Unit].

    Q: What are the symptoms of sepsis:
    A: Systemic problems such as rapid heart and respiratory rates, altered mineral status when the brain does not work properly, unstable blood pressure and so on. The symptoms are not found where the infection is - it is elsewhere. It is not the spread, but the reaction to the infection.

    Q: What is the survival rate for patients with sepsis?
    A: One-third die, even if they were healthy before.

    Q: What is the incidence of sepsis?
    A: In the U.S., it is estimated to be around 750,000 cases a year. And, mortality is about a third. So, some 250,000-300,000 die every year of sepsis. About half to two-thirds of patients in the ICU die because of severe sepsis. Also, several cases of death after surgery, due to complications arising from pneumonia, or due to extended illness are all terms that usually describe severe sepsis. The root cause may be an infection that had happened two to three weeks before death. That infection may have been treated but the patients may go in for multi-organ failure and it sounds complicated.

    Q: How do you diagnose a person with sepsis?
    A: when he does not have enough oxygen in the blood - when he has an unstable blood pressure, when his urine output starts to fall... all these lead to organ failures or dysfunction. If one or more of these symptoms occur, then that is diagnosed as sepsis.

    Q: Is there no way to detect sepsis before it strikes the patient?
    A: If you just read about sepsis you feel that it is a progression that has a window of time between the infection and multi-organ failure. But most often it happens all at once, or at least within a matter of hours.

    Q: Can precautions be taken against sepsis?
    A: Once you have the infection the risk is pretty much all there. So, the way to deal with sepsis is not to get infected in the first place. And certainly in a hospital environment there is a lot we can do to reduce the chances of infection though we cannot get rid of them altogether. On the patient side, what is expected of him/her is to do away with predispositions such as smoking, alcoholism, obesity, and so on. So, what a normal person can do is just to practise common sense and lead a healthy lifestyle. And if one gets infected, it is going to be the job of the medical system to figure out how to minimise the infection and treat it as soon as possible so that it does not lapse into a severe sepsis. But it does not necessarily happen that way as, at times, particularly in the case of meningitis, it happens within a few hours - from going to bed at night and waking up at midnight. In the case of meningitis, people who are perfectly healthy in the morning can be nearly dead by night time.

    {Information taken from Prof. Gordon R. Bernard http://www.thehindu.com/fline/fl2120...8001708600.htm}

    Information from: SEVERE SEPSIS

    What are sepsis and severe sepsis?

    Sepsis is a complex illness involving both infection and inflammation. Normally, the body's response to an infection is targeted to the site of the infection. With sepsis, the body's response, instead of being localized to the site of infection, causes symptoms to occur throughout the body (this is known as a systemic response).

    As a result of this systemic response, a patient with sepsis often has a fever, and a faster than normal heart rate and breathing rate. Because "germs" may be found in the blood of patients with sepsis, doctors and nurses sometimes refer to the condition as a "blood infection" or "blood poisoning." While it may be difficult to tell when someone is developing sepsis, tests can be conducted at the hospital to detect the disease.

    In some patients, the systemic response to infection may spin out of control, upsetting the body's state of balance and damaging one or more vital organs (heart, lungs, kidneys, or liver). This systemic response or "overreaction" to the infection and resulting organ damage is called severe sepsis and is often more dangerous than the initial infection itself. Sepsis can turn into severe sepsis very quickly, sometimes in a matter of hours. Between 28% and 50% of patients who develop severe sepsis die from the condition.
    Severe sepsis is one of the most significant challenges in critical care. Each year, more than 750,000 people in the U.S. will develop severe sepsis, and more than 215,000 will die from the condition. Treating patients with severe sepsis costs U.S. hospitals nearly $17 billion a year.

    With standard supportive care alone, mortality remains unacceptably high, at 28-50%.

    Who is at risk for severe sepsis?
    Severe sepsis can result from any type of infection, even those initially considered minor, such as influenza or urinary tract infections. More than 750,000 people in the U.S. develop severe sepsis every year—exceeding the number of new cases of lung, breast, and colon cancer combined. Severe sepsis is more likely in people who:
    • Have been admitted to the hospital with a serious disease
    • Are very young or old
    • Have a compromised (weak) immune system
    • Have had a wound or injury, such as a surgical wound, a burn, or a gunshot injury
    • Have an IV (intravenous) line for infusion of medications ("IV drip")
    • Have a catheter to drain the bladder
    • Are addicted to alcohol or drugs
    What are the short-term and long-term effects of severe sepsis?
    Severe sepsis is a very serious, life-threatening condition. In severe sepsis, organs may not receive enough oxygen and they may fail or "shut down." When organs shut down, important functions of the body cannot occur. The more organs that shut down, the greater a patient's risk of dying.

    Patients who survive severe sepsis are likely to stay in the intensive care unit (ICU) until their organs begin working properly. The amount of time spent in the ICU varies greatly, and can range from one day to more than one month. From the ICU, a patient may be sent to another area of the hospital or to another facility to recuperate. The condition of the patient after the severe sepsis episode varies depending on many factors. These factors may include the patient's health before severe sepsis and how severe their disease was. Some of the areas that may be affected are:
    • Physical activity
    • Communication
    • Energy level
    Long-term effects of severe sepsis may include organ damage. Depending on many factors, this organ damage may be temporary or it may be permanent. For example, a patient whose kidneys fail due to severe sepsis may need dialysis (filtering help from a machine).

    Despite these challenges, many people who survive can make a full recovery from severe sepsis and return to their normal daily activities. Early treatment of severe sepsis may minimize the amount of permanent organ damage.

    Severe sepsis affects people of all ages, whether they are healthy or chronically ill. But certain patients are predisposed to developing severe sepsis. Screening these at-risk patients is highly recommended to diagnose and treat the condition early.

    Patients at risk of developing severe sepsis
    Screening of the following at-risk patient types receiving anti-infective therapy and organ support can aid in early diagnosis of severe sepsis:
    • All critically ill patients
    • Severe CAP (community-acquired pneumonia)
    • Intra-abdominal surgery
    • Meningitis
    • Chronic diseases (including diabetes, heart failure, chronic renal failure, and COPD)
    • Compromised immune status (HIV/AIDS, use of cytotoxic and immunosuppressive agents, malignant neoplasms, and alcoholism)
    • Cellulitis
    • Urinary tract infection
    WHAT IS DIC? {Information from Wikipedia

    Disseminated intravascular coagulation (DIC), also called consumptive coagulopathy, is a pathological process in the body where the blood starts to coagulate throughout the whole body. This depletes the body of its platelets and coagulation factors, and resulting in the paradoxic situation in which there is a high risk for simultaneous catastrophic thrombosis as well as massive hemorrhage. It occurs in critically ill patients in fulminant sepsis as well those with malignancy. It is more commonly seen in Gram-negative sepsis (particularly meningococcal sepsis) than in Gram-positive sepsis. In the past, it was a common consequence of treatment of acute promyelocytic leukemia, and may occur in other hematogenic malignancies, but can occur in solid tumors as well as a paraneoplastic syndrome.

  4. #64
    Posting Addict SparkleMomma's Avatar
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    One month. One month already. And my boys aren't home with me. Tomorrow AM I see the doc about the neck tumor and herniation caused be it. Then another appt in the PM which I forget what for right now

  5. #65
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    Well! great news! I meet with a urologist on May 30th!! I have seen him in the past, 2.5 years ago when I DID pass kideny stones, so that is good! I am hoping we can talk surgery & the possibility of removing the kidney outright. What a relief that will be!!!

    I also see the OB June 10th about removal of the tumors that are still in both sides of my groin & are growing. I hate that word "tumor", so from here on out, I will refer to them as masses. Not much better, but it is better.

  6. #66
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    I talked with mikey's Uro & surgery is looking real good! Because of the location of the extra ureter, most likely they will go through my back & remove the stones. I so can't wait to be pain free!

    I also got a nice letter in the mail from the Critical Care Team thanking me for taking part in the ART-123 Study {the DIC med}. The study is about 2 years long & worldwide, however, I know that without it, I would have died. Forsure. The drug is already readily used in Japan & seriously would count down the days till it is approved here in North America.

    Here is some info on the study: Click Here for link

    About ART-123

    ART-123 is a novel, recombinant, soluble thrombomodulin for the treatment of DIC (disseminated intravascular coagulation) in sepsis. ART-123 uniquely targets both anti-coagulant and systemic anti-inflammatory pathways, and holds great promise as a self-regulating treatment of DIC in sepsis. Artisan licensed ART-123 from Asahi Kasei Pharma Corporation and holds all development and commercial rights for ART-123 outside of Japan, China, Taiwan and Korea.

    About DIC in Sepsis

    Almost 2 million patients in the United States and Europe suffer from sepsis annually, with up to 30% of them developing or being at high risk of developing DIC. For those that do, prognosis is poor. DIC is a severe condition in which widespread microthrombi formation ultimately contributes to organ dysfunction and death. This market is estimated at over $2 billion and is increasing due to the growing incidence of sepsis in the industrialized world.

    About Artisan's ART-123 Phase 2b Trial in DIC in Sepsis

    The Phase 2b study entitled "A Randomized, Double-Blind, Placebo-Controlled, Phase-2b Study to Assess the Safety and Efficacy Effects of ART-123 on Subjects with Sepsis and Disseminated Intravascular Coagulation" will enroll 800 subjects in over 140 sites worldwide.
    Just reading this again & remember that horror nightmare, still brings tears to my eyes. I don't think I will ever get over it.
    Last edited by SparkleMomma; 05-13-2008 at 09:13 PM.

  7. #67
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    It's been some time since I've updated. Not sone too much, except work, help the kids with the end of the school year, YEAH LIAM!! Grade 3 here he comes!! Mikey will be going to pre school again, and he is quite excited for that!

    He liked teasing Liam this AM by not sharing the mini Oreo's because apparently he bought them He is such a goofy guy!

    I had a doc appt on Friday, a call back actually, and gues what, another kidney infection. Only this time I have stumped my GP, because the culture came back with Group B strep, which is very rare for a kidney infection. Low and behold I would get it, huh? So yeah, here I am on mega antibio's waiting for the 10 days +2 to get tested again, & I am sure that will come back infected too. That's been the whole cycle since I've been out of ICU. Frustrating. It's to the point now tooo, that I am forving myself out of bed for work, or even to play with the boys. I can't shake my fever and it sucks. I hate this.

    Ahh well... Back to my boys!!

  8. #68
    Posting Addict SparkleMomma's Avatar
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    Crap. Found out today that an old neighbour was murdered last night. I saw him only about 4 hours earlier & I am in shock. I can not believe it. The whole situation is sad. I am angry at the situationand how it played out. No one deserves that, no matter. It was cold and inhumane.

    How can anyone do that. He was happy & laughing and joking and even though I didn't agree with his lifestyle, he still cared for his mom and sis and little boy. Now he's been cut down. Just Like t.h.a.t. Gone. How did he go from laughing in fours to d.e.a.d. So final. Gone???

    What is with this?

  9. #69
    Posting Addict SparkleMomma's Avatar
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    So I have my appt with the General Oncologist surgeon on Monday!! I can not believe it, but I am so scared at the same time. I know all will be fine though. Still, I don't know.

    The boys are great!! KDays is back for another year, so hopefully the weather will be nice this weekend. I am tired of tornado watch/warnings.

    Justin's leg is finally looking better & hopefully the burn left still raw will start to dry up soon.

  10. #70
    Posting Addict SparkleMomma's Avatar
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    I get to see my GP tonight! I can't take my back pain anymore. I hate this damn kidney.

    I went for lunch today & lost $10.00. I didn't even want to go back for it, because I figure that someone could use it more than me.

    Liam's been away for 2 nightds, so I am so excited to see him tomorrow. On Sunday will mark 1 year since Tom's stroke. One week from today will be 1 year since his death I am so bummed and upset. I have not forgotten him, but it is like the wounds are being ripped open again and it is all new. I miss him so much, that words can not explain. Biologically we were not even related, but in my heart, we were. I love him so much and I still feel at such a loss for him. My heart still feels empty

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