Beyond frustrated with health care today....

[KarenN]

The saga continues *SIGH*

Mom had cancer - then she didn't have cancer - then she had "infection" at the biopsy site three months after the biopsy - NO ONE can seem to cure the infection. The round after round of antibiotics and surgeries to try to fix the "infection" have possibly left her with c-diff

The heart surgeon said it was time to try a whole different set of surgeons and set her up with a breast surgery specialist for Thursday (tomorrow) and we were hopeful that we were on a new and better track.

On Monday she went to see her oncologist for a routine follow-up that has been scheduled for months. HE says that the "infection" is not just infection, but that it is cancer that was missed back in April when she had the original biopsy He was glad she was going to see the breast surgeon on Thursday, but ordered a PET scan for today and the result sent immediately to the breast surgeon so she would have that for the appt tomorrow.

Mom didn't eat last night preparing for the PET today as per instructions. Ted took her to the appointment set for early this morning. They get to the hospital, and the hospital says, oh, yes, we have you on our list but we forgot to get you a time and the materials ready, you'll have to come back Friday. REALLY??? What is going on here? Why can't they get it right?

Poor mom. The heart surgeon has already told her back in June that she had to have the heart surgery ASAP because the aneurysm was already beyond the max, and she would not last 12-18 months. She now just assumes that with all the botched procedures from the other doctors that she is in her final few months. Today's frustration was NOT something she needed.

I am just heartbroken for her.

The even more infuriating part is that she has Medicare and TriCare for Life - and they (we) just keep paying for all this nonsense. And she keeps getting bills for parts they won't cover that have just made her worse. We are thinking lawsuit....

And they think health care is going to improve and be more affordable after Obamacare??

[Hasha]

No, it's only gonna get worse.

I've seen several people that I know die because the DR's can't get their shit together and do their jobs. One woman died from an infection that she got in the hospital after breaking a hip. It was really horrible and very sad.. she was severely mentally handicapped and couldn't speak.

Our insurance is going to cover less, the deductible is going up and we are going to have to pay more. They are dragging their feet telling us how much the price increase will be.... they also are dropping our vision insurance on the first of the year, I just ordered new glasses, my cost this year was $240, they told me that without my insurance they will be $650.

[Yip]

I am SO sorry to hear this. I can understand how your mil has about given up hope for medical help.

Karen, just lately I have heard MANY tales of infections being unable to be cleared up after many tries and courses of different antibiotics. It is unreal the widespread incompetence of medical practitioners lately.

Has anyone actually cultured the infection site? That is the only way to find the pathogen and effective cure.

It also makes me wonder if we have unleashed many new resistant steains of bacteria and fungi, and they're being spread at hospitals. Honestly, being hospitalized is one of my biggest fears. We totally lose control of our care, and infections and malpractice is rampant. I would have to invoke my greatest faith in God's hedge of protection around me, because I have no faith in the medical industry now.

As far as Tricare is concerned, does your mil have it from a past military or gov. career? If so, get all your Congressional reps. involved. They can make things happen quickly. My elder dd who has MS had horrid problems with Tricare for about 2 years. Now she has a personal laison who has proved invaluable in cutting through the red tape and bs. I will ask Shannon what finally made that come about and get back to you.

[Idaho Linda]

Karen, you have a MEDICARE problem, not a TRICARE-FOR-LIFE problem. Tricare for Life pays everything that Medicare APPROVED, but did not pay. It pays all the co-pays, deductibles, etc. Tricare-for-Life isn't part of the decision-making process.

Yip, your daughter has a different program--it is TRICARE for active-duty. Your daughter chose the correct avenue for dealing with that agency.

Hospital-acquired infections are a huge problem. Since hospitals are where people who are really sick go, so that is where the bad bugs live. Here is another website--www.cms.gov Here is a link to get you started, Karen.
www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/HospitalAcqCond/Hospital-Acquired_Conditions.html

IF I remember correctly, Medicare will not pay the hospital for re-admission for a hospital-acquired infection. The hospital has to eat the bill.

For things that Medicare will not pay, the hospital was required to get an Advance Beneficiary Notice of Noncoverage (ABN). This notice says Medicare probably (or certainly) won't pay for some services in certain situations. If Medicare doesn't pay, then Tricare for Life won't pay--and neither will Supplemental insurance plans. Look at page 118 and 119 in the new Medicare and You book. Notice on page 119--"What if I didn't Get an ABN?" Then read the paragraph below that to see how to appeal. If the hospital has a copy of the ABN that your mother signed, then you need to pay the bill. If they can't produce the copy..... Here is your link for info on the form and a PDF copy. www.cms.gov/Medicare/Medicare-General-Information/BNI/ABN.html The hospitals give you a whole stack of things to sign---watch for this one.

I have some further suggestions for you. Identify one other person in the family--perhaps Ian--to double-check on all appointments. He can say that he is the "driver" and he wants to confirm the information that he was given by his grandparents. Ian sounds very professional on the phone and this is something he could handle for everyone to get this stuff straight and avoid unnecessary trips. Give him a calendar to write on and have him record the NAME, time and date of the person he spoke with that assured him everything was in order.

Read the information on CSM.gov and Medicare.gov on how to lodge/file a complaint. It is extremely important that the first few words are, "I want to file a complaint." You do not want to bury that information in the verbal or written message. That needs to be the FIRST thing that they see.

Go here www.cms.gov/cciio/Resources/consumer-assistance-grants/ok.html They should be able to point you towards someone who can help you.

Here is a list of Senior Health Insurance Assistance Programs for all states www.doi.idaho.gov/shiba/help.aspx

Here is the Oklahoma contacts: Oklahoma [phone]

AND, you always have my phone number and e-mail. Use it.

[KarenN]

It is through dad's military service - 32 years - and they are actually very good, but still paying for incompetence just doesn't seem good to me.

[dawnh]

Linda shares excellent advice, couldn't give you any more than that. I know here at my job (billing for an anesthesia group) it seems we have to deal with more paperwork and red tape than anything that does our patients any good and that's not looking to get any better with upcoming changes. But of course it isn't direct patient care. I am blessed to be at a "good" hospital I guess. Only yesterday spoke to two patients who just gushed over their care here and both named other "local" hospitals (nothings totally local but closest by ones) that they will no longer set foot in after being here. They felt that the doctors and nursing care was over and beyond what those others do. Always good to hear, and both had to tell me how much they adored "my" doctors... just not "my" bill to them LOL. Well can't fix everything I guess.
But if we hear a complaint like yours scheduling issues or care we are to take it over and above to try to get the issues resolved and find out why things didn't go the way that could have been easier or more beneficial to the patient etc. Similar to the Disney model of always providing the best service possible. I have to believe there are folks in quality control or a person who specifically can deal with your issues where your mom is going and hopefully at least make things somewhat easier. A call to the administration office of your hospital network could get you that name. Here at least our administrative secretary who answers the phone is extremely knowledgeable on who does what.

[Yip]

Linda, you oughta write a book for "the rest of us!"

[Idaho Linda]

The "book" is there, you just need to know where to look. The two main websites are www.medicare.gov and www.cms.gov (Center for Medicare and Medicaid Services.) Technical stuff--like the law--is on the CMS site. They have great search engines on both sites.

It IS horribly complicated. I guess that is why I enjoy it. You guys can always reach me with questions and many of you already have my phone number. And, thank goodness, I have people to call when I don't know which direction to head to look for an answer.

If you folks who live where riding isn't a good option in the winter, I would suggest searching out your local SHIP/SHIBA office and becoming a volunteer. You will learn how the system works--expect the learning process to take about 2 years. You will be shocked at how many people you can help and how much they appreciate it. The best part about this volunteer program is that all the action is basically October through the first part of December. The rest of the year, when you want to go play with your horses, is pretty slow--just an occasional phone call.

Medicare WORKS. You just need to understand it and watch for those ABNs and other little details and know what they mean. You need to know how to lodge a complaint and understand the leverage you actually have to get decisions changed and get exceptions to policy.

[Vicki]

How frustrating! Your poor mom! Health care coverage is so complicated. My Dad has Medicare and Blue Cross/Shield with an upcoming hip replacement. I am going to watch for the ABN. I never would have thought not to sign it. Can they refuse service if the ABNs are not signed? My Dad did sign one for lab work. Luckily it was for only $25 of out of pocket cost.

[Frostym]

I heard an NPR report yesterday on the problem of these infections that are antibiotic resistant. According to the reporter, the fault lies not with the hospitals or docs but with the pharmaceutical industry which refuses
to research and develop new antibiotics for these bugs that are resistant to the old antibiotics. Why? Because it's the free market way. The profit for antibiotics is too low. It costs a billion dollars to develop a new drug. According to the report, people get sick, take an antibiotic for a few days then get well. There's no profit in that. The golden ring for Big Pharm is a cholesterol drug that people will have to take for the rest of their lives. That's profitable.

I don't understand why you're complaining the insurance companies are at fault. They are doing their job and surely your MIL and you as family are better off not having to worry about crippling bills. I hope so, anyway.

Karen, if your MIL does have c-dif that needs to be diagnosed for sure and treated right away. Jim could have survived his heart problems. C-dif killed him.

I'm so sorry for your and your family's troubles. Don't forget the old story- when you can't see Jesus' footprints beside you as you go through the sands of hardship , it doesn't mean He has deserted you. That's when He is carrying you. Love, prayers, and BIG ((((HUGS))).

[Newfygirl]

That's great information Linda. Thank you for the education. I an printing it out and putting it in my folder labeled "things I might need to know" (I really do have this folder)

[Newfygirl]

That's great information Linda. Thank you for the education. I an printing it out and putting it in my folder labeled "things I might need to know" (I really do have this folder)

[Idaho Linda]

The ABNs usually are for small things. Like, for instance, a pump that circulates cold through a knee during surgery. You can chose to pay for that out of pocket once you know the price, or choose to go without. The information is all there on the ABN, you just need to know that it exists and actually read it. There also are ABNs for procedures that are not approved by Medicare. Anything considered "cosmetic" is not approved by Medicare (generally.) For instance, say you go to the surgeon and demand to get a tattoo removed surgically. You will be given an ABN. It is not approved and since you signed the ABN saying you would pay for it..... There just are lots of little things that cause ABNs to be generated. You need to watch for them and make sure you understand. Sick patients need an advocate. They aren't going to understand and lots of times, they may not have their glasses and are just signing without reading.

MRSA is not "new". It just has a fancy new name. It used to be part of what was called "catalase positive, coagulase- positive staph aureus". There wasn't much "catchy" about that. We used to do a sensitivity test for this gram-positive cocci in order to see what antibiotics might be effective. Some of the strains were much more resistant than others. Our reports gave the name of the bacteria, and about 2 days later, a follow-up report with the sensitivities (that took more time.)

This is a good article with lots of information. en.wikipedia.org/wiki/Staphylococcus_aureus Our overuse of antibiotics--especially in the food chain--is really starting to turn around and bite us.

[Yip]

Frosty, I understood Karen to say that the family IS paying many of the bills.

Linda, I copied and pasted to my Noteboook app. Thank you!

[Mary Ann]

I so agree with Linda that patients need advocates.

When my hubby got so sick last month, and the oncology nurses we called said to take him to the hospital because they feared he had a bowel obstruction, I did exactly that. But I also specified that he have his own room in emergency, as he was in the last days of his oral chemo cycle and I knew his immune function was extremely impaired. They started to put him in with a child, and I asked that he be moved, again citing the chemo cycle. I could tell that these very well-meaning people were thinking *bowelobstructionbowelobstruction* and forgetting that he's also a cancer patient. He got his xrays and was found to have no obstruction, but was admitted for the fever and bad CBC. I asked that, since his immune system was poor and these folks are treating some very sick people, could they please wear masks? They agreed, and set up a reverse isolation protocol for his room.

After a day or so with steadily worsening CBCs, I asked them to contact his oncologist (who is not on staff at that hospital) to find out if he should continue his oral chemo. I knew that the drug depresses his immune system function, and the oncologist needed to be brought into the loop. It was a holiday weekend and our GP was out of town, and it was clear that the very kind doctor taking his place had no idea what to do. I got there one day and found out he had taken his chemo drug that morning, and they were arranging for transfusions later that day; and I'm thinking these nurses have no idea what's in that chemo drug or what it does; they do car wrecks and wounds, not cancer patients. So I insisted that they call the oncologist while I waited. They very kindly did, and he said STOP IT NOW.

We're so lucky to have the internet. We can educate ourselves on some of the most obscure things, and we are empowered.

Karen, I so feel for your frustration and worry. It sounds like perhaps the folks at the hospital in your area are forgetting that they work for you, not the other way around. I don't think a person has to be bossy or abrasive to be a good advocate, just assertive and very, very persistent. I know I ruffled a feather or two with one young nurse with poor self-esteem, but OH WELL. She'll get over it or she won't, but my hubby would have had to live (or die) with the consequences of her tunnel vision.

Cancer is such a scary thing, shame on those folks with the PET scans for leaving your mom waiting like that! They should have inconvenienced themselves instead of her, stayed later and done the prep work with some compassion in their hearts. I know forgetting happens, but geez, really?!?

Perhaps a letter to their director would facilitate better preparation and treatment for everyone.

You're still in my prayers, girlfriend. (((((HUGS)))))