C-Diff: My Heartfelt Warning to All of You

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• November 30, 2008 at 10:19 am #21655
  sugarwhale

  Member

  Dear Forum Friends,
  It has been a very long time since I felt I could write this letter. My dear mom died of C-diff on July 13, 2008. She didn’t have to die in the way she did. I am writing this letter to all of you in the hope that I might save someone from going through what my mom and I went through.
  Clostridium difficile (C-diff) is a very bad bacterium which lives in the colon; when a person with a compromised immune system (like MDS and leukemia patients)develops any infection, antibiotics are often prescribed. Antibiotics can wipe out the GOOD bacteria, enabling the C-diff bacteria to proliferate. C-diff is now often a virulent infection and can kill elderly and immune-compromised individuals.
  My mom was a patient at the UNM Cancer Research and Treatment Center here. Her doctor saw her very often and was very attentive to her needs UNTIL she developed cellulitis last March. This was her third case of cellulitis, and it did not immediately respond to antibiotics. Her doctor told her (on a Friday) to be sure to come in Monday if the cellulitis was not markedly better. Although he did not have hours then, he said that he could be reached. We went back to the clinic on Monday. We were only able to see a different doctor who told us to wait and come in the next day. That delay cost us. We went to the clinic on the Tuesday and saw my mom’s doctor. He promptly put her in the hospital. My mom received antibiotic IVs in the hospital for about 6 days. Before they sent her home, she was given two IVs of vancomycin, an antibiotic specifically for C-diff. After my mom came home, she was put on antibiotics yet again. Her doctor never saw her while she was in the hospital.
  The cellulitis was finally gone. My mom felt pretty well, and we left for Alaska. But my mom was far from well. She developed severe diarrhea. On July 11 I took her to an urgent care center. They said they “didn’t THINK” she had c-diff, since she had no fever (The elderly often don’t!). This was the very first time we had ever HEARD of C-diff! Later that night I took my mom to the ER of the Mat-Su Regional Medical Center. They DID diagnose C-diff. They gave my mom a prescription and released her rather quickly.
  On Sunday morning, July 13, my dear mom’s heart stopped suddenly. She could not be revived.
  No one ever told us about C-diff. We had no IDEA what it was. We had no idea what symptoms to look out for. We had no idea what CAUSED C-diff. From early March, when my mom developed cellulitis, to the time we left for Alaska, we hardly saw her doctor at all. He was always too busy; he’d send in his assistant instead. After my mom died, I asked her doctor if earlier medical attention might have saved her. He never answered.
  Now, here is my warning to all of you. If you are immune-compromised (and all MDS and leukemia patients ARE!) and a doctor needs to give you antibiotics, start asking some questions! Ask about C-diff, MRSA, cellulitis and these virulent superinfections. If, within six weeks of taking antibiotics, you or your loved ones develop ANY diarrhea, loss of appetite, gas pains or other symptoms, GET MEDICAL ATTENTION IMMEDIATELY. Insist on a stool culture to rule out C-diff.
  C-diff is highly contagious. It is spread in hospitals and nursing homes through unwashed hands and environmental surfaces. Alcohol will not kill it; only chlorine will kill it. The bacterium sends out spores, and the spores can live for MONTHS on doorknobs, telephones, clothing, etc.
  The story isn’t over yet either. The Alaska State Medical Examiner has not yet given the correct cause of death on my mom’s death certificate. Under “other conditions” he has listed “Chronic C.Dillicite Colitis.” I feel that the misspelling is deliberate. I have asked to have this corrected. They don’t even answer.
  Hospitals and doctors want to hide C-diff. They’re so afraid they might be sued because someone didn’t wash their hands or because the hospital room’s phone was not sterilized in chlorine bleach!
  Hospitals are filthy places. When my mom was in the hospital for cellulitis, a nurse’s aid coughed on her. She apologized, saying, “I’m sorry: I’ve got a sore throat and don’t feel well.” But no one cared. We told my mom’s doctor about this. Again, no one gave a DAMN.
  My sweet mom didn’t have to die. It’s true that no doctor or hospital killed her. But it’s also true that they could have saved her and failed to.
  Neither I nor my mom had ever HEARD of C-diff, until two days before she died of it. But UNM Hospital KNEW. That’s why they gave her vancomycin. They KNEW, but no one told US. When we went to Alaska, no one told us to be aware of symptoms. They knew, too. They ALL knew. But we didn’t.
  If this letter saves just one person, I will have done a good thing. Why didn’t my mom’s doctor see more of her after she got cellulitis? Why did he always send his assistant in? Why didn’t the hospital WARN us that the antibiotics were LIKELY to cause C-diff? Why didn’t someone tell us what to look out for when we left for Alaska? They KNEW. They ALL KNEW. But we…didn’t.
  Please, please, my friends, take this warning seriously. If a doctor gives you antibiotics, ask some pointed questions about C-diff. Learn the symptoms and get medical attention immediately if you have even the slightest sign. No one told us anything. They didn’t kill my mom, but they let her die.
  My best wishes go out to all of you, and I wish all of you good health and long life.
  Your friend,
  Janet Grooms

  November 30, 2008 at 1:54 pm #21656
  eve

  Member

  dear janet

  sorry for your loss and pain

  thank you for the information

  my girlfriend who is in her 50’s and in good health – she is a runner – had c-diff and was extremely ill – i can only imagine how it must effect someone with a compromised immune system

  eve

  November 30, 2008 at 10:07 pm #21657
  jaxem

  Member

  Hi, Janet
  So Sorry for your loss. I’m a little confused as I read your discussion. Vanco is an antibiotic & was given to my wife over 15 days after she was diagnosed with MRSA which was probably contracted from the hospital. It knocked out the MRSA. Are you saying that the vanco knocked out your mom’s cellulitis but other IV’s given prior made her condition worse?

  November 30, 2008 at 10:40 pm #21658
  sugarwhale

  Member
  November 30, 2008 at 10:43 pm #21659
  sugarwhale

  Member

  Dear Jack,
  My letter to you posted before I was finished. I wanted to express my sympathy to you on losing your wife. I am so very sorry. You know what this is like!
  Your friend,
  Janet

  December 1, 2008 at 8:11 pm #21660
  jaxem

  Member
  December 1, 2008 at 9:13 pm #21661
  sugarwhale

  Member

  Dear Jack,
  Again, I am so very sorry for your loss. I found that our “Center of Excellence” wasn’t really very…excellent. C-diff is quickly becoming a major, major health problem. Increasingly, doctors and patients are finding the more virulent strains; there are very few drugs which will kill these horrible C-diff bacteria.
  The symptoms in my mom developed very slowly over a two-week period. She first noticed a “touch” of diarrhea, so minimal that it could well have been attributed to anything else. As I recall, this went away for a few days. My mom was very tired in the week before she died; however, we had traipsed clear across the West Edmonton Mall, and I was tired too. So, we didn’t think anything of it. About 3 or 4 days before my mom died, the very violent diarrhea began. At that point we KNEW something was wrong. I immediately took her to get medical care, but I was too late. The big problem is that doctors need to STOP hiding C-diff and start informing vulnerable patients of the information which could save their lives. The original “Cause of Death” on my mom’s death certificate is: “arteriosclerotic cardiovascular disease.” She had NO evidence of this AT ALL. There’s a word for this: It’s called a LIE. I cannot get the Alaska Medical Examiner to change this “Cause of Death” either. Unfortunately, patients’ welfare takes a backseat to doctors’ reputations and motives. People like my mom don’t count, especially if they are elderly. The only thing that counts is the DOCTOR! This is NOT ACCEPTABLE, and it HAS to CHANGE. My sweet mom DID count.
  I am so sorry for your loss, also, Jack. Your WIFE counted, too. And the people we love count a great, great deal more than any corrupt doctor!
  Your friend, Janet

  December 1, 2008 at 9:18 pm #21662
  sugarwhale

  Member

  Dear Eve,
  Thank you also for your nice message. I’m glad your girlfriend survived her battle with C-diff, but I’m sorry you lost your dad. I have lost all of my family now, although my mom was the only one with MDS. Thank you for your kind note.
  Your friend, Janet

  December 2, 2008 at 6:34 pm #21663
  PupsRule

  Member

  Janet – C-diff is a growing problem in hospitals around this country. It can also be induced via antibiotics. My husband came down with it this spring as a result of an antibiotic he was taking for bronchitis — he was out of commission for 6 weeks and on vanco for 3. We had no idea how prevalent or deadly this infection is until doing the research.

  Thank you for your informative post, and my heart goes out to you.

  December 2, 2008 at 9:36 pm #21664
  sugarwhale

  Member

  Dear Judith,
  I’m not sure from your post whether YOU are Judith; ‘sorry if I called you by an incorrect name. Thank you for your entry. I’m glad your husband survived C-diff. You were wise to do the research. My mom and I were traveling, and we had no access to a computer. We figured that her doctor would inform us of anything we needed to know. Ironically, when we left on the trip, he provided her with a new prescription for Levaquin, an antibiotic which often CAUSES C-diff in immune-compromised patients.
  I hope you and your husband are doing fine. Thank you again for your kind entry.
  Your friend, Janet

  December 5, 2008 at 2:05 am #21665
  Bini wife

  Member

  My husband had a great infectious disease specialist help him get over a very dangerous infection. He gave us a very important tip that many may have heard before, but it can really save you a lot of grief and maybe even you life. Anytime you are taking antibiotics, include yogurt in your daily diet for the duration. Yogurt replaces the good bacteria that the drugs kill and it helps restore the bacterial balance in the digestive system. I don’t know why all doctors don’t mention this to their patients. This is a very easy way of avoiding some very nasty side effects.

  Carmen

  December 5, 2008 at 2:58 am #21666
  Mary4Mike

  Participant

  Carmen,

  They don’t mention taking yogurt (or acidophillus, probiotics, etc. that are found in a health food store) because it is a natural remedy and it can’t be patented. If there is no patent, there is no potential for making big money off it. They could write a prescription for Nystatin that has a similar effect, but with nasty side effects.

  Unfortunately, the major medical universities are funded for the most part by the pharmaceutical companies so you can believe that there is very little education on nutrition, vitamins, or natural preventive measures. It would cut into their profits.

  December 5, 2008 at 5:34 am #21667
  CarolineG

  Member

  Sugarwhale….

  I am so very sorry that your Mom died. Having had the pleasure of getting to know her I can truly say that the world is a lonelier place with her gone.

  Carmen….

  Your doctor is correct. Our family doctor told us that the yogurt idea was nothing more than a fairy tale but we know differently.

  3 years ago my Dad had a 4-month bout with C-diff. He was hospitalized 4 times and each time we were told that he would not live to go home again. He is still with us. During his last hospital stay I was told by a young lady on this Forum to start Dad eating Activia Yogurt each day. In the US you call it DanActive. We suggested it to the hospital nurses and they gave Dad a similar brand daily during the remainder of his hospital stay. After Dad got home he ate Activia everyday for 2 years. The C-diff never returned. Since that time, besides having CMML, Dad has developed End Stage Renal Failure for which we take him for Dialysis treatments 3 times each week and he has also developed Alzheimer’s Disease. He eventually had enough of the yogurt and doesn’t want to eat it anymore but we always keep a fresh supply in the fridge and we have a prescription for Flagyl in the drawer just in case C-diff rears its ugly head again. Sometimes the simplest ideas can go very far.

  Caroline

  December 5, 2008 at 8:21 am #21668
  sugarwhale

  Member

  Dear Carmen, Mary and Caroline,
  Sometimes this Forum surprises me. When I allowed my anger and bitterness against UNM Hospital and my mom’s doctor to spill out above, I half expected that Forum members would rally to the defense of the medical establishment. I figured that someone would tell me that I was wrong and that no doctor would exhibit such a lack of caring. Well, I stand corrected! I have to give each of you above my debt of gratitude. You sent me your sympathy, your empathy, your knowledge. I can’t thank you enough.
  Like I told Jack above, MY MOM COUNTED. Her doctor didn’t think she did. He was far, far too busy to put his efforts into saving a 90-year-old. Jack’s wife counted too, and so did Eve’s dad. Mary’s and Carmen’s husbands count, too. And Caroline’s dad counts. Yet our doctors seem to feel that THEY count more than anyone else. Doctors think they are gods. Well, they’re NOT.
  My mom and I always loved to travel together. When we first met her doctor, we had been in the midst of planning a very long vacation (about a month). At the time, my mom was very well. Now, had the doctor told us that there was a degree of risk in having my mom away from the UNM Hospital and the Cancer Research and Treatment Center for any length of time, we’d have appreciated his wise counsel. But, ‘know why he squashed one of our very last trips together? He told us that he would ALLOW her only 2 weeks, because “that is all the vacation I get, and I AM THE DOCTOR!” We could NOT have a longer vacation than THE DOCTOR. We didn’t COUNT enough for that!
  I must thank everyone above with all my heart. You understood. You REALLY understood, and you came through for me.
  Carmen and Mary, you are absolutely correct about the yogurt. No, our doctor didn’t recommend yogurt at anytime for my mom. Gee, that would have taken 30 seconds of his important time! During the MONTHS of taking antibiotics for the cellulitis, no one mentioned yogurt. When we traveled to Alaska and my mom did begin having the symptoms of C-diff, I saw to it that she ate Activia yogurt twice per day. This just wasn’t done quickly enough to save her. Had she been eating yogurt twice a day for the 4 previous months, she might now still be alive.
  And Caroline mentioned something too that’s really important. She says above that “we have a prescription for Flagyl in the drawer just in case….” That’s how it should be. My mom’s doctor never gave us a prescription for C-diff or even mentioned c-diff or its symptoms to us. However, he was quick to give her an expensive prescription refill for the Levoquin, a drug KNOWN to cause C-diff.
  When my mom’s C-diff was diagnosed in Alaska, the doctor gave us a prescription for Vancomycin. Even WITH my mom’s fine insurance, the Vanco cost nearly $400 IN CASH. It was 2 a.m. when we were released. We couldn’t get the prescription filled until 9 hours later. It was too late.
  If my mom’s doctor had done the RIGHT thing, he’d have TOLD her about C-diff and given her a supply of Flagyl or Vancomycin to take WITH us.
  Interestingly, the two Vanco IVs that were given to my mom at the UNM Hospital are far inferior to the vancomycin CAPSULES. The drug needs to reach the COLON, and the caps work more efficiently than the IVs. My guess is that the doctors and hospital got more money for the IVs.
  The UNM Hospital is a public hospital. To my knowledge, they turn NO ONE down, even if the person has no health insurance. My mom’s doctor once told her that patients WITH insurance (like my mom) more than make up for the patients lacking it. UNM Hospital now has a brand new building, and they’re building more and more. I feel that my mom paid for a great deal of this building boom.
  By the way, when the doctor didn’t bother seeing my mom anymore and sent his assistant instead, I should tell you that this lady was a nurse. She was NOT a doctor. My mom didn’t count enough to be seen by a doctor.
  I just want to say one more thing, then I’ll end this message. I want to say THANKS, to all of you, for supporting me. All of you above make me feel somehow that I count and that my mom counted. I cannot thank you enough.
  Yours in friendship, Janet

  February 21, 2009 at 12:02 am #21841
  Jo L.

  Member

  I remembered this thread the other day when John was prescribed 21 days of Levaquin, so I asked the doctor about taking a probiotic at the same time. John is currently receiving all meds, food (formula) & water through a ‘PEG’ feeding tube, so I didn’t know how to introduce yogurt into the diet. He said we should use Florajen3, which is an over the counter product, but kept in the pharmacy because it needs to be refrigerated. A box of 30 capsules was about $15. Doc agreed it was always a good idea to use probiotics when on antibiotics.

  Jo L.

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