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Let’s talk about MRSA victims I know

January 29th, 2010 Leave a comment Go to comments

My work with my MRSA bill , activism and advocacy has taken me all over Maine, to Chicago and to Washington DC twice with another trip coming up soon.  I meet with other advocates, our senators and representatives, the Consumers union, and victims regularly to help stop this scourge.   I have met many of the families in person and online.

Let me introduce you to a few.

Two of my new acquaintances  are military veterans.  One got a new hip then MRSA.  Another got a new knee, then MRSA.  The second one had to have his new knee removed and will soon have his leg bones fused and have an unbend-able knee.  If he makes it through this surgery, he will have to learn to walk again using a shoe lift and a walker.  The alternative to that was amputation and a prosthesis.  He wouldn’t hear of that.   He is 86 years old.

I met a young mother in Washington DC in November.  She got MRSA when she went into the hospital to have her baby.  She suffers with it herself, but the worst of it is her baby has it.  They have had continuous outbreaks since her baby was born 9 months ago.  She talked with me in the hotel hallway and literally cried on my wide shoulders.  Her heart is broken.  She has another child and a husband that she worries sick over. Her worry is that they will get MRSA too.  She is a very young woman who is now on SSI disability because of MRSA.

Another friend, a mutual friend of my husbands and mine, had a colonoscopy.   He had a polyp too far up to remove through the scope.  His doc said it will be a piece of cake to remove that polyp through his abdomen.  So, he did.  He got MRSA.  He had to have a long section of bowel removed and now has a colostomy.  After being treated for the MRSA, he got C Diff and spent a lot of time in the VA home locally and got treated for that with IV antibiotics.  A weeks worth was around $7000 he said, but “thankfully”  his insurance covered it. 

A mentor of mine who is also a MRSA victim, injured her ankle years ago.  She had surgery and got MRSA.  She went into sepsis and nearly died and still they were not telling her about her infection….what it was.  She has fought with the legislators in Illinois to get the first MRSA bill passed into law with mandatory Active Detection and Isolation .

I didn’t personally  know the latest victim I have become aware of, but the cause of her death was published in the local paper.  She was a beautiful 67 year old wife of a prominent local pathologist.  She at one time climbed Mount Kilimanjaro.  She was the secretary at the local medical center’s chaplains desk.  What a tragedy.

Another is an ICU RN by profession.  She contracted MRSA at work.  She has had repeated bouts of MRSA related infections.  Currently she lingering illness from recent flu and is seriously ill.  She will go to the ER this morning and we hope she gets the treatment she needs.  She had MRSA pneumonia with sepsis several years ago and she is very frightened of a recurrence. 

I could go on and on.  The stories are incredible.  These people are all intelligent, trusting and until MRSA, healthy people.   Too often the argument regarding MRSA prevention isn’t about all of these suffering patients or their families.  It is all about money and a lot about saving face.  Savings lives and stopping unnecessary suffering rarely comes into the conversation. 

MRSA is brutal, no matter how old you are or in what medical condition you are in.  We have to break the chain of infections by getting hospital screening right and educating everyone on the dangers of MRSA and how to stop the spread of the disease.

  1. Lana
    January 30th, 2010 at 01:19 | #1

    And you met me! In DC at the pres conference on Capitol Hill…. I almost lost my life to this disease 2 years ago after gallbladder removal. I went undiagnosed for 2 weeks, and at that time had become septic, had multiple abdominal abscesses, liver failure, kidneys were going, lungs collapsed, heart was going wonky, plural effusions, Disseminated Inter-vascular Coagulopathy (DIC), and on and on….

    Life still isn’t the same. I’m in chronic pain from the damage that was done to my abdominal wall. My liver isn’t right. My feet – well they have neuropathy…. I catch every bug that I encounter now. I can’t keep any food in my stomach, and it hurts a lot even when I do…. I can’t work anymore and my partner lost her job, she we rented our house and moved to a place where we don’t have to pay as much a month. We are on the brink of financial disaster…. My life isn’t the same, and I don’t believe that it will ever be “normal” again.

    I want to see a victim’s compensation fund to help people like me deal with the financial fallout of MRSA. I helped get more money appropriated for infection prevention in my State, which I am happy about because it will save lives. But I also want to see something done to help the survivors and the families of those who don’t survive. Tort reform has almost killed any chance of recovering through a medical malpractice suit, and often victims are too sick to go through a lengthy legal process after the infection. Hospitals will only clean up their act when they have to pay for these mistakes.

    Thank you for all that you do. You make a big difference in the lives of so many people and I am personally grateful.

    Also, please keep Etta James, the legendary blues singer, in your thoughts and prayers – she is hospitalized with MRSA.

  2. Kathy
    January 30th, 2010 at 09:40 | #2

    I haven’t heard from you for a long time. Of course I remember you. I am so sorry to hear that you continue to have chronic MRSA related problems. It is a despicable, tenacious and pervasive illness that never quits.
    I have met so many victims, all ages, all backgrounds, from all over the country. I received a letter just last night from the frightened mother of a young adult who has serious MRSA. I spent yesterday afternoon in the ER with a nurse friend who has it and is sick.
    I am adding a link to a an article about the Vinalhaven, ME outbreak. I just love how the powers that be (CDC) minimize the impact of MRSA. I do understand that it is important to avoid panic, but a certain level of panic is important so people educate themselves about the seriousness of the infection. Those victims may suffer terribly if they have to go into the hospital for an invasive procedure. Nobody tells them that part.
    My husband saw Etta James in concert in DC. I will keep her in my thoughts.
    I have forgotten your partner’s name but please give send my regards. Perhaps we will meet again at another MRSA Prevention event. Are you part of the Consumers Union?

  3. Stephanie
    June 4th, 2010 at 17:55 | #3

    My mother had her knee replacement removed do to a Septic infection that the Dr. in Chicago said she shouldnt of even lived through. She has the unbendable knee replacement that she recieved in April then she ended u with the same flesh eating infection in that knee again. Had to return to Chicago to once again have surgery 5 weeks later. Again they removed the dead tissue and sent her home 5 days after surgery and they used disolvable stitches and steri-strips and guess what here we ago again 4 weeks later it is oening at the site and is currently tunneling again and is at 1cm deep. She still can’t walk and is still bedridden since the surgery. All this time with Physical Therapy and still nowhere. That specific limb isnt the easiest to work with as it is the bendable. So good luck to the fellow you met as it has been a long haul and still is.

  4. February 10th, 2013 at 13:56 | #4

    My dad had a valve replacement in 2009. 13months later skin was tender and red in one spot of the incision. It opened and started draining. Had debrement done. Left open to heal. It tunneled 4″ deep. It actually ate the bottom sternum wire. It closed up completely. 5 months later same thing about an inch above last place, basically ate the next titanium wire, had debrement again, same thing 3 months later. Ate 3rd from bottom wire, then again, 4 months , wire gone and actually tunneled back behind sternum also had debrement done again. These were all on the initial scar from heart surgery with each moving upward about a inch in between each other. 3 months later the tunnel open up to the right of his scar, which it basically followed the other wire until it came out. Doctors where we live basically have said as long as it drains (greenish/yellow) he will be fine. It’s going on 11 months and has not had it debreed

  5. February 10th, 2013 at 14:04 | #5

    We have went to md Anderson, and they are very interested in looking at it. Also has prostate cancer that has shoed up in lymph nodes and spine. It’s been so frustrating watching my dad go thru this which was all unnecessary. OH. But they still want to charge u n expect to be paid when he caught this at the hospital after heart surgery. His sternum was bleeding so bad they had to take him back in within a few hours ,open him back up, cartorize his veins. That’s where I believe the staph started. Don’t know if he used the same wires r new ones.

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