Reply #90: I learned the hard way too...

[gleaner]

Last year my husband was hospitalized with MRSA. It was in his blood and all through his body. MRSA is a super bug, a Staph infection which used to be mostly contracted in hospitals and medical settings where the bacteria became antibiotic resistant. It is now "in the wild" as the hospital put it. This means that it is everywhere and as easy to catch as a cold by hand to hand contact or sneezing in someone's face. The doctors described it to me as aggressive and quick to mutate. In the meantime they were dumping every antibiotic they knew of into my husband that would possibly kill it. Each one would work for a short time and then they would have to try something new.

While they were attempting to help my husband he was running a fever of 105 or higher which they could not keep down no matter what they did, and they did try. The day he was taken to the hospital he lost his ability to walk and the use of his left arm. To this day no one knows why.

In the ER he began having a heart attack which they could do little to stop because any acute intervention would have introduced MRSA bacteria into other organs and they were afraid that would kill my husband outright. They happened to have a very good cardiologist on hand who was able to mitigate the severity of the attack while they kept trying to kill the bacteria in ICU. My husband lived, but barely and he has no memory of his time in the hospital. This is very long, I know, so please bear with me. There is a point I'm coming to.

While the MRSA raged unchecked the following happened:

1. It destroyed the heart valve below the Aorta rendering my husband virtually unable to breathe even with oxygen. It inflamed the heart muscle causing endocarditis. There was also an infarct at the apex of the heart itself. He had blood clots in his legs.

2. His lungs were damaged by the bacteria. There is an area at the base of each lung which is scarred and dead. No treatment was able to be given.

3. The doctors had to risk open heart surgery to save my husband's life. Without a valve replacement he would have died. There was a very good chance he could have died during surgery, but he did survive. The heart surgery was only a partial success. The valve was replaced, the infarct could not be bypassed because of its position and the heart rhythm was so out of sync that an ICD which is a combination pacemaker and defibrillator had to be installed to restore the rhythm and fibrillate the heart if it went severely out of rhythm. My husband has had to modify his life activities even more to accommodate the restrictions it brings with it, but he is grateful to be alive.

4. The MRSA attacked my husband's bone marrow. It reduced red counts, white count and platelet count. For a time his white count was so low that in addition to wearing contagion garments when we visited him, we had to wear masks to protect him. His food had to be irradiated before he could eat and he could not have raw food of any kind. His mouth filled with lesions and yeast overgrowth which could be treated only topically because the Hematologist had to protect the bone marrow so that it could return to normal one day. It has improved, but the counts are still low across the board after a year. He had five transfusions during this period in an attempt to restore at least part of his blood count, but they were not successful.

5. After the heart surgery, the pathologist who examined the destroyed heart valve which had been removed found "a few" live MRSA cells on it. The doctors explained that caution dictated that they put my husband on Vancomycin because the fact that the bacteria were not showing in the blood cultures did not guarantee that it would not return. Vancomycin for six weeks was the required and specific protocol. My husband was given Vancomycin.

6. After barely a month my husband had an anaphylactic reaction to the Vancomycin. His whole body swelled. His kidneys were damaged to the point that the doctors were discussing dialasis. Fortunately, the toxicity declined to the point where that was not necessary. There is still some residual kidney damage, but the doctors tell us it may resolve itself in time.

7. My husband's liver was damaged by either the Vancomycin or the MRSA. Some doctors say one thing, and some another. His reality is that ammonia from kidney wastes and liver function is not metabolized properly which resulted in a severe intoxication which resembled dementia. He will have to take medicine three times a day for this for the rest of his life. No one knows for sure if the damage to the liver will restore itself.

8. My husband can now walk a little, but barely. He needs the help of a walker and he can't get very far. He can't stand or sit very long and still spends many hours in a hospital bed. I'm just grateful that he is alive.

Now the point of this. He is a retired federal employee who is only 55 years old and who was robustly healthy before the MRSA. He has private health insurance through the Office of Personnel Management. Throughout this ordeal which lasted for months they kept refusing to pay for the acute care he needed. They wanted him to go to a convalescent hospital, even though they do not pay for that kind of facility, and the reduction of care probably would have resulted in his death. When I asked them if they had considered the lack of this coverage before making the decision their reply was, "We never consider the coverage when we make our decisions."

I was able to get the hospital which is a "non-profit" to help me with this. They appealed for us twice and won so that he was able to get most of the care that he needed and a hospital bed at home and a machine to help him breathe while he is asleep to keep some of the strain off his heart. His doctors wanted him to have home health care with a nurse to check on him once a week and physical therapy as needed. The insurance company has steadfastly refused to authorize this, even though these benefits are covered. Nothing I can do or say will change this, and I have been fighting them as hard as I can.

We have also been left with a huge residue of debt from deductibles and co-payments which we can't even begin to address. We were going to refinance our home under the existing 30 year mortgage which we thought had left us a tidy equity. Unfortunately the Bush economic polices have reduced the value of our home until there is no equity and no way even to sell it. In essence we are paying rent to the mortgage holder.

My husband has to take a lot of new and expensive medications and he has to eat a special diet to stay alive which is expensive, so we are incurring more debt. There seems to be no way out. All we can do is try to catch up, hope that we can continue to pay the mortgage so we don't lose our home because we have nowhere else to go, and let the people we owe money to ruin our credit or whatever they feel they have to do to sufficiently punish us because one of us got desperately ill.

That, I guess is my point. Under the present health care system even if you think you are protected you are not. We need universal health care. This is not a new revelation for me. I thought so even before this happened, but sometimes it is hard to get the people with the power to change things to listen, much less act. If you read with me through this whole post, thanks for your patience and kindness and please realize that you are vulnerable too. Even with the help of an epidemiologist the hospital could not determine where or how my husband was infected. Somewhere out there in "the wild" as the ICU nurse said, but no one knows exactly where or how.