Help for Healing

Bitter & Sweet, living daily with grief


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The Mighty Dollar

I hate to be cynical but…

We have laws/legislature that supposedly protects people. While that might be true, there is no doubt in my mind that a big factor (perhaps the biggest factor?) comes down to money. Almost always does.

I was at a big conference in Albany this week where we were talking about some of these issues. The example I used was my dad. I know there are assisted living facilities that don’t have nurses on staff. However, his did. Not allowing his family to provide medication was undoubtedly for money, not for his protection. How do I know? The literal first words out of their mouths at our meeting were: Now that your dad can no longer take his own medication, you need to pay our medical staff to do so. Let’s see, that is $750 more a month.

Bite me.

Yesterday, I finally got a second opinion on my foot. After 5 1/2 months of post-surgery pain, I am now told I need a nerve shot. (Ouch!) Why can’t I get it while I am already here? You guessed it, money.

DAMN THEM. Insurance won’t pay for two appointments on the same day at the same facility. I have to live in pain for another 24 hours then return to the exact same place to get the treatment I need. How is that is any way, shape or form for the benefit of the patient? If they aren’t going to get paid, they aren’t going to do it. Why shouldn’t they get paid? And why should I be in pain for a longer period of time for no good reason? No common sense. I’m right in the office but get sent home untreated.

Ticks me off. Broken systems again. Makes me sound like a broken record.

Anyway, got the shot today. We will see what happens. The opinion is though, that most likely problems will come back and I will need a second surgery. Guess what? That’s what dumb ‘ol me said four months ago. Five months of PT twice a week, all kinds of contraptions and creams that cost money, and consistent pain with no relief. For what? To end up in the same place. At least I could have had the second surgery back in December and already been recovered by now.

Sigh.

Imperfect world. Thanks for listening to the rant.


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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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More on Genetic Markers

Thanks to all of you who did some research after last week’s blog. You guys rock! It wasn’t even an issue I had thought about asking for help with and yet you jumped in anyway.

At the end of last week, I was able to locate the woman I needed to speak with who had approached me at the conference. It was a combined effort with a couple of agencies, but I found her. I went to meet with her this week and came home with that same mixture of intense emotions – excitement and energy, mixed with a sick stomach all at the same time.

Truthfully, it’s a bit overwhelming. I don’t really have a scientific mind so it’s a bit out of my comfort zone just to wade through articles and learn new terms and jargon. And I have my moments where I just plain get angry and say out loud to no one, “I don’t WANT to talk and think about cancer anymore.” At least not when it’s personal like this.

I wasn’t expecting the first big piece of information. It is best to start with testing Tim’s tissues. They recommend a “tumor panel” vs. just looking for one thing or another. Unfortunately, the hospital did not suggest we do a DNA bank when Tim was a patient there. Supposedly, anyone under 50 that is terminally diagnosed is supposed to be flagged for this but we obviously were not. If we had been, Tim’s insurance at the time would have covered the expenses. Now I could be looking at a $4,000 bill. This is a good reason for me to blog because I’m sure most other people aren’t aware. IF YOU ARE UNDER 50 AND HAVE A TERMINAL DIAGNOSIS, REQUEST YOUR DNA BE STORED AND STUDIED. That should be standard procedure, but it is not.

Generally, hospitals and labs keep samples for seven years. It’s hard to believe, but it has been over six years already since Tim’s initial tests were done. That gives me less than a year to track it down, if it is even still available. I am starting that process this week as it is the first step to all of this.

Second step is family history. I will be researching some programs that can be distributed to Tim’s family with the help of his brother. People will be able to add information they have (you never know who has the scoop on how Aunt Gertrude died type of thing) and then the program spits out the results in an organized fashion. Tim’s brother has been very kind and willing to help with this. The results could be very important to his family as well.

After all of that, we start talking about “germline” testing with 1st, 2nd, and 3rd degree relatives. How effective that is will depend on the results of the first two steps. It will most likely be covered by health insurance because being related to Tim meets the criteria. From there, a positive or negative result will have a domino effect on what happens after that.

Phew.

I’m already exhausted and all I have done is take the information I have and map out a plan of action. Part of me is glad to have my brain stimulated with something new. Part of me is scared to death for my kids. It is bad enough to watch your spouse suffer. The only thing worse than that is to watch your kids suffer.

This totally makes sense to me though. It is very unfortunate there is little emphasis placed on this. I hadn’t even thought about it until now. I just looked at this doctor and said it so makes sense to try to cure cancer. But doesn’t it make even more to prevent it before it even happens? That look passed over her face. The look that said, “Welcome to my world. I think that exactly so why doesn’t the rest of the world? It just makes sense.”

Wish me luck. And energy. I need both 🙂