MRSA Support Group

Kathy,

You are surely correct about who they have gone to before that they can bring me other things and right in the fact that I do not have any immune system to fight anything else and it takes me forever to get rid of it..

They got upset with me for complaining about an CNA who worked with me and had fake nails..She also had a young child..All of a sudden with all else I had going on I then picked up Ecoli..They still say it had nothing to do with it..I think it did she was preparing my foods..and none want to wear gloves...

I also have had strep pnemonia this year and mentigitis..This MRSA is slowly killing me and when I see how things are done and others are treated that I talk to on these forums it scares the fire out of me...

So many times they will not take the necessary precautions but yet if I have to be took to the doctor I will wear a mask and cover up everything just incase..Even if I dont have a cough at the time..I will not even let any family come to see me with childern..Really no one comes..

Doctors are the hardest they take a really lax attitude with this.I just reacted this week to the last medicine that showed it would treat mine which was Zyvox..I was into the second bag when I had a bad reaction..Now I am dealing with hives and allergies all over..That is something I know of that has happened to many other MRSA people that I have talked to on many forums but the doctors doesnt seem to put this all together..

As long as the Lord allows me to have strenght to type and try to get the word out that is what I do..Been doing it for since last Nov. when I finally got a computer..I may not can go out in public but I can help tell someone here that may not know how to get the help they need..

I was messed up in the very beginning by being given a bunch of different antibiotics without any cultures to know what it was resistant too and I find many deal with this the doctor just calls it MRSA and gives out medicine..Which then makes it only grow stronger..Plus have been told I have CA-MRSA cause I had been in a nursing home for 3 months when it showed up in my lungs..Only to learn recently the only way they can find out it is CA-MRSA they would have to do a DNA test to see so I know I didn't have that done..So I am sure mine is HA-MRSA and has been this whole entire time..

It is good to know that they are fighting to clean up the hospitals..And they surely need to train the RN CNAs and who else has to deal with it...They get aggravated at me when I point things out but I am the one here in TN who will end up dieing with it and certainly do not want to pass it on to anyone else If I can prevent it at all..

Your concerns for your caretakers and how they mishandle precautions prove that you are a caring and generous person.

Have you considered writing some of these things in a letter and CC it to the director of the home health agency that cares for you, the nursing home AND the hospital. Let them know that you are fully aware of where your MRSA came from and what you think will help them to stop the spread of the infections. Sometimes it takes hearing it from a victim for them to wake up!!

I would even go so far as to send copies of those letters to the boards of directors for all of those organizations,,,home heath agency, nursing home and hospital. It is likely that NONE of those directors even know there is a problem with MRSA in their organizations.

I did exactly that. I contacted the Local representative of my fathers town and coincidently he was also a member of the hospital board of directors. He knew absolutely nothing about the MRSA problem in his own hospital, even though he attends every single board meeting. Dad's infection was the third one in a month to result in death. So, he took Dad's story and my concerns to the board. It made a lot of people very uncomfortable. and within a few weeks, they had started doing some MRSA screening in their facility. I know this seems insignificant, but it is the start of dealing with the spread of disease there. They had never done any screening prior to this action.

You are very good at expressing your concerns. If you are well enough, try some of these things. It may help others.

PS...Dad had allergic reactions to VAnco and he also got thrush. That was the end of him eating anything. He never got his appetite back. Please, keep eating and if you are unable to eat, drink supplemental meals, even if you have no appetite.

Take care.

Seems like a lot of MRSA victims and thats what we are...Getting it and not being aware it even existed..Have allergic reaction problems..I have already reacted to Vanco and cant take it..Bactrim..Only one that culture showed will work was Zyvox and now I have reacted to it to the point I cannot try it anymore..Covered from head to toe in what looks like hives..Plus it caused swelling to the throat and lips..So its out and they really don't have anything else to offer..

Thats the only reason I am on the boards trying to spread the word of how bad this can be..

Guess you saw yesterday MRSA is the second leading killer in the United States right now..So someone better take notice..

It is pitiful when your so worried about spreading it and the hospital is fully aware you have it already had been admitted several times over last year..Here I was in a double bed room with it active in my lungs and they bring a small older lady in who had came down from surgery...I had an absolute fit..Director of nursing tried to tell me not to worry there was no danger in it..I told her relative what I had and if they did not want her to end up with it to get her out of the room or me one...Half the time I have to ask them to gown and glove and they never think about bringing the blood pressure cuff in that they go from room to room with..So no wonder it spreads like wildfire from the hospitals..

I don't get how they cannot be aware..Its like I have been told this whole time I have CA-MRSA was told that from the beinging when they found it in my lungs..Turns out I have now found out they could not tell if I did unless I had a DNA test to tell which I know I never did have..So I know it has to Be HA-MRSA.

But I am sure it is in the nursing homes also because I have been in at least one that I was positive with it and put in with a dailysis patient. I had a fit but was never moved until I came home..So have I left a trail of distruction..I don't know but it is never been from me not telling...I always do..The director assured me they were taking the precautions they were required..What taking me in the same shower care they use on so many people I guess they think running water will take care of it but when its running over an open wound that is gapped open and leaking like mine was how much MRSA was left behind?

SO yes Kathy I have many concerns and writing them might help but I am doubting it it seems us MRSA patients and people tend to get lost along the way and swept under a rug somewhere..How long before this superbug is a complete epidemic..?

I haven't been able to eat well in a long while..I have MRSA in my mouth and gums and on my face that turned to gangrene..

Blessings be with you!

How frustrating this all must be for you. You have tried as hard as you can to protect others while suffering horribly yourself.

It seems you have taken your concerns as far as you can within the hospitals and nursing home you have been in, but their boards of directors may sing a different tune. My guess is that their boards of directors do not have a clue about how they are spreading disease within their own hospital walls. It's worth a try contacting them.

It seems you have come into contact with some extremely ignorant and uncaring health care workers. Unless they are aliens, they KNOW how MRSA is spread. Nursing homes are not held to the same preventative standards as hospitals, but if you have MRSA in your lungs, even in a nursing home, you should be on isolation as long as you are coughing and producing.

What the hell is wrong with these nurses and doctors? It is like they are willing it to happen...the spread of MRSA. None of the people you have spoken of are following CDC recommendations....and those recommendations are not the best. Anyone infected or colonized with MRSA must be isolated or cohorted with another MRSA patient. If an acute hospital is doing less, then they are out of compliance.

I'm so sorry you are suffering the way you are. I wish there was something I could suggest or offer that would help. All I can do is keep working toward prevention in hospitals and State and Federal legislation to help others from contracting this horrible illness. I'm sure this is not much comfort to you at this point, but it is all I have to offer. I will keep you in my thoughts as I go about this work.

Kathy,

Thank you for taking time to come and respond to me..There is only one hospital here in Town and this is happening..Maybe I need to go deeper to someone who will listen...I just dont want others to suffer like this..It is unessary if they would take better precautions..

I dont know whats wrong with them Kathy been trying to figure that one out for a long time now..Wow if someone would get them to understand this..I am glad you are working towards this..

If there is anything I can do as long as I can still type I certainly will still be trying to spread the word on how bad MRSA is and how quickly someone you know and love can contract it without even being aware it is a problem..

Kathy I honestly dont know how many CNA's I have heard say what is MRSA..They don't have a clue so you tell me someone is not educating someone well and I have had so many hospitalizations and ER visits and home health I know many..Of course all that know me surely knows what it is but others dont...

No it is comfort to know someone is willing to work towards this..Anyway I can help from TN I will..This is a mess here if you read some other post here you will see so many talk about the spreading of this..Snuffy is from TN too and like me hasn't been treated well or told all he needed to know..Thanks for always taking time to answer me..

Appreciate your reply.

You are right.. the facilities aren't doing their part in keeping MRSA out of the healthcare settings. More needs to be done to enforce rules. I don't see where there are strict rules that fines can be imposed if they are broken or licensure is lost in case they braek the rules. Why have rulse if one can break them with no repercussion??? Makes no sense. Will write more later. Tired and closing eyes as I type.

Hugs,

Post edited by: RGValleyGal, at: 07/25/2009 04:22 PM

Unfortunately, the CDC recommendations are just that...recommendations. Hospitals can choose to use them, or not. There are no mandates in most states. Legislative mandates change the picture. If hospitals are our of compliance with a mandate, there are steps that can be taken to make them accountable.

The CDC has a voluminous MRSA control recommendation. Screening for MRSA comes close to the end of the recommendation. It comes only after a "cluster" of patients have become infected and or died because of MRSA. Then it is recommended that hospitals analyse the data and consider screening just that particular population of patients.

My State proposal and the Federal proposal 2739 both put screening FIRST in the policy. That way all patients who have MRSA on admission either in the form of an infection or colonization, can be diagnosed, isolated and contact precautions used. Also, decolonization can begin to protect both the patient themselves and other patients and staff. Education of all staff, from the cleaning staff on up was included in my state proposal as well, but the only part of my proposal that passed was the high risk MRSA screening part.

BUT...if Congresswoman Jackie Speier's bill passes, it includes screening, Isolation, precautions, education, funding, etc. It is a strong comprehensive bill that will have a huge impact nationwide on the prevention and control of MRSA.

As it stands presently, most states do not have any mandates for the control of MRSA. Hospitals have been allowed to pick and choose from the existing CDC recommendations or not. And even if they are 100% compliance with the CDC, those recommendations are not effective in preventing MRSA, in their current order.

Until a Federal bill is passed to force hospitals into prevention, it takes people like the ones on this board calling and or writing every day to hospital CEOs, board members, local representatives, State representatives, etc, to force them to be aware of this epidemic. More people will die of MRSA this year than AIDS/HIV, motor vehicle accidents and breast cancer combined. And certainly many thousands more will die of MRSA this year that H1N1 FLU! The Hoopla over this flu really fries my butt...when so many thousands of people are becoming infected and dying every day with MRSA.

Keep up the fight. It is the only way we will stop MRSA.

Well since my mouth is so messed up writing is easier than calling..I certainly am going to write to the CEO's at and board members at the hospital and nursing home..I need to wrote to the State representive too..Let them know how one MRSA patient here in TN has no doubt at some point spread it to someone else..That part drives me crazy...

It is too bad that all the did pass was testing when they come into the facitly...That sure is a start but they surely needed to pass the part about educating the staff..yes and even the cleaning staff that sure would help to make a difference..That part surely should have been passed..

I surely hope that Congresswoman Jackie Speier's is able to get her bill passed..That would surely be a start on all of this and how not to spread the MRSA...Even though I feel I will never be cured I do want to help it from spreading it is a horrible thing..

I know it really ticks me off that they made such a big to do about the swine flu but then they have anything about MRSA it is just a brief story like it is no big deal...When like you said MRSA will kill many thousands more with that swine flu thing...Go figure...

And Kathy no one seems to worry about them wearing scrubs out in public..When those same scrubs were in here leaning over me and me with MRSA active..Don't they think when they go to pick up their Kids at daycares or Walmart that they might just have my MRSA on them when they have leaned all over me showering me and stuff with me active with MRSA and some places draining...They never wear covers over them and I am sure leave my home only to go somewhere else to another patients even perhaps..If they can find it living on grocery carts and things then why not them scrubs? They should be mad cover them espceially when dealing with active MRSA not to mention what they may have on them when they get here an me with no immune system now catching everything...It is just Nasty..

Yeah when us fighters are gone and the ones that are so afraid that someone will find out that they have it that will be a mess....I always encouraging people with it to keep talking about this and spreading the word..But so many only want to say a thing or two then they don't do anymore..Keep fighting is the only what this doesnt get spread and be vigilant on not spreading what we already have...Stay away from babies and elderly and surgery patient Esp.with this stuff..

Its good to talk to you again..I am glad you take time to post here so others can read about this and see how important all of this is..It is not just about getting over it..Sure that is a part but in the process Please try not to spread it around...And don't be afraid to tell someone who works on you if they are not using good precautions..It doesn't matter if it is a Doctor Nurse Or CNA..Speak up about not spreading this around..

I will keep fighting until I can't anymore..Thanks for answering~~

I remember my days of oblivion as a nurse. When I first started in nursing(in the late 60s), we never wore gloves unless it was for a sterile procedure like a catheterization or assisting a surgical procedure. I remember days when I got home, even after good handwashing, I would have blood and God knows what else under my nails. I also remember being vomited on, defecated on and other rather disgusting things happening while I cared for my patients. It used to be just a matter of getting through it....washing up, changing uniforms and scrubbing under the nails and we didn't think much of it. I make no excuses for nurses, I just remember being like that. Now in our current times, dirty hands are like loaded guns. All it takes is carrying mrsa to an unsuspecting vulnerable patient and it can end their life or dramatically change it.

Then I remember the early days of HIV/AIDS. The public paranoia about catching AIDS was outrageous. Nobody wanted to touch a gay man, because they might catch AIDS, or so they thought. It absolutely astounds me when Infection Control people compare MRSA prevention with AIDs prevention. This time around, being touched by someone who carries MRSA on their hands actually CAN cause you infection and yet they do not emphasize that to their staffs nearly enough. It is SO much harder to contract AIDS than MRSA. I remind them every time they bring up AIDs prevention and universal precautions. They KNOW that universal precautions and handwashing alone will not EVER stop the spread of MRSA. My father didn't have one single invasive procedure during the stay when he contracted MRSA. He was in for a simple ankle fracture that didn't even require a cast. He didn't have an IV, or a trach, or a catheter of any kind. He had NO surgery. But, he got MRSA in his lungs anyway. I still believe that he had a roommate with undiagnosed respiratory MRSA.

Why do you think hospitals are so reluctant to screen for MRSA. Because THEN they will be liable. They will then have to recognized colonized patients and isolate them because there will be lab results to prove colonization. They will be proven to be out of compliance if they are routinely rooming colonized or infected MRSA patients with patients who do not have MRSA. It will take a lot of effort to organize testing, organizing results and reacting appropriately to the results. The logistics of MRSA screening and appropriate preventative steps are daunting. But none of that hardship compares to even ONE infection such as yours and so many others. I have absolutely NO sympathy for hospitals. They have known this problem was growing by leaps and bounds for decades and yet the didn't do what needed to be done soon enough to avoid our current pandemic.

I'm proud of you for writing to those in control of your facilities and health care centers. And your representative ought to come to your home to see you and what you are going through becasue of a preventable infection. My fathers representative didn't visit Dad while he was alive, but he did attend his funeral. He couldn't have changed anything for Dad, but he did change something...after I told him about what was going on.....for future patients in that small community hospital.

You can do the same thing with your story and your concerns. You may find ears that are not deaf to your concerns and help untold numbers of others.

take care.

Wow you stated that on how I feel about what the nurses wear and get it on the uniforms and under their nails...Fake Fingernails really upset me now when I see them on an CNA or someone working in the medical field..No telling what could be under them....I am sure my Ecoli earlier this year came from CNA preparing food for me with no gloves on...There is no where else I could of gotten that I was to sick to get up and prepare myself anything..

Everyone needs to read that your dad had NO invasive procedure done..That a fractured ankle cost him his life with MRSA..and there is no telling if I gave it to someone before they knew what was in my lungs..While in the nursing home for three months I was treated off and on for upper respitory infections..It wasn't until I was out for awhile and kept having them that I was put in the hospital diagnoised with pnemonia and treated several times when to my knowledge I had never had pnemonia before..After several times the hospitalist told me it was MRSA in my lungs acted like it was no big deal gave me antibiotics through IV and acted like that would take care of it..It didn't and still hasn't..

I don't understand why people fear Aids when MRSA is so much earsier to contact and take it..

At least the represenative was able to do something even if it was after your dad had died...True they couldn't fix me now but might help someone else in the future...That is all I am out to do at this point and time..

Thanks for caring and listening and taking time to answer!!!!I will try!