Wednesday, May 27, 2009

Brain Dump

Upper respiratory infections are the bane of our existence. We've learned to manage them better by utilizing more breathing treatments, antibiotics (early), and the torture known as deep suctioning (trust me, you don't want to know). It's just something you have to work, constantly.

We have discovered that the particular infections Marty gets are multi-fold, either MRSA (big yuck, but we have antibiotics for it), strep pneumonia, and pseudomonas aeruginosa. Then there are the variants of the bacteria, particularly with the pesudo a.. Today we can make a decision on which antibiotic to use based on a sputum culture (see torture above). Today, we can give an antibiotic that deals with the infection. I hope that continues. Today Marty is doing okay and we are treating the latest in a series of infections. Today.

Speaking of today -- If you are particularly averse to center left rantings and viewpoints -- Caution ahead:

Torture -- We don't, or at least shouldn't ever, never. We are the good guys and the good guys don't torture. We just don't. I remember as a young man seeing the photos of how our people were treated by North Vietnam. I remember thinking how awful the Viet Cong must have been to treat their captives as they did. I remember how what they did led me to think these people had no sense of morality. I don't want others to think the same of us. If water boarding would be torture for our people. It's torture for others. And yes, some of our military personnel go through programs that include water boarding, but guess what, it's to prepare them for torture. To quote Fox's Shepard Smith, "This is America, we don't fxxxxxxx, torture".

Economy -- We do need to cut spending. I don't want to pay more taxes. But, until I hear anyone start talking about cutting defense spending, just keep it to yourself. Defense, Medicare, Social Security, Medicaid, and VA Benefits account for over 70% of our budget. If you really want to get the deficit in line -- you have to start here. We spend the largest percentage of our GDP on defense (or offense in the case of Iraq) than any of the industrialized nations -- Tell me where else are you going to get the savings to balance the budget?

Health Care -- The only people currently saying our system is fine are the people with health care supplied by their employers. When they loose this -- their minds will change -- mine did. When I had to start trying to get health insurance on my own, on the open market, I was confronted with how powerful the insurance companies were. This is not a free market, this is a complete monopoly and consumer choice or any power of the consumer is non existent. Free markets work when businesses have to respond to consumer needs. You won't find this in health care. We must have change starting with control of health care insurance companies.

There --all better. I've had that stuff backed up in my brain for about three weeks. I feel so much better.

Monday, May 25, 2009

Changes

I got an Ipod for my birthday from my children, a year ago. I finally, finally have it up and working. Obviously I'm one of the world's great procrastinators. I wanted to get it working so I could download some audio books. I got hooked on audio books when I was driving back and forth to Dallas from Waco all of the time at the turn of the century (love to say that).

Anyway, I'm listening to a book by Stephan King called Duma Key. In the book the main character has a devastating accident at the start of the book and he keeps referring to his old self and his new self. Man, I got that. I completely understand how events in our lives are so impactful they completely change how we think, how we act and how we interact.

Marty's stroke did that for both of us.

Pre-stroke Marty was brilliant. She truly was one of the smartest people I have ever known. She was a world class problem solver, consequently she always had a lot of advise and recommendations for anyone about anything. It was more than a bit irritating, especially since the advise was mostly good. One of the many things Marty and I argued about was who was smarter. We completely agreed that one of us was smarter. We couldn't ever agree on which one. Now, I can honestly say she was.

Pre-stroke Marty was what you might politely call a rule breaker. Even today if you ask her who are rules for, "for someone else" is her answer. Marty was never encumbered by schedules, time, traffic rules, social mores or conventional wisdom. She did what she thought was best, what was most direct and what would be most effective.

Pre-stroke Marty was funny, witty, sarcastic and could be very critical. She was not what anyone would call compliant, about anything. See the rule breaker above. She just was going to do her thing, her way, in her time. It was refreshing and incredibly irritating all at the same time. Marty basically told everyone what to do. It's just what she did. Amazingly, I miss that.

Marty was generous with her heart, she loved mightily, she was compassionate, she was involved with her time and her talents, and she was a wonderful, wonderful Mother. She was fantastic in caring for her family and children when they were sick or injured. She knew what to do and how to get it down. She was in charge, period....

So what about the new self, the new Marty. I still think she is brilliant. She may not have the same verbal skill she once did, but trust me on this, she understands what's going on, and if you work at it, you can get her opinion on almost anything.

The biggest change is Marty is amazingly compliant and agreeable. I have seen her eat some of worst looking things, and never blink. She had endured countless indignities and never complained once, not one time. She takes the medicine I give her, sometimes she asks what it is, and rarely balks. She allows people to touch and handle her in ways that are completely contrary to her pre-stroke self. She endures and allows me to run a catheter into her nose and into her lungs daily, it's horrible, and she never whines, cries or bitches, she just says, do it. She is an incredible patient.

She still passionately loves her children and her husband. She still recognizes and cares deeply about her friends and their lives. Anytime I tell her about the kids or her friends she is clearly interested and asks about what they are doing.

Post-stroke Marty is one of the sweetest, most agreeable women you will ever meet. I know, those who have known Marty for years are saying, yeah right. But it's true. It's never the way I would have described my wife, but it is what her new self is. She is still funny, she still really loves a good, dirty joke. She loves to laugh out loud and works very hard at coming up with just the right "smart ass" rejoinder.

Marty is an amazing woman who is living an amazing journey. It is not one she wanted, it is not one anyone would want. But, she is living, she is happy, most of the time and she is still affecting lives every day in a most amazing way. Who knew??

Sunday, May 24, 2009

Graduation


We went to Austin for the weekend to see our youngest, the baby of our family, Erin, graduate, again. This time she completed her Masters in Social Work. We are all extremely happy and proud of our girl. It hasn't always been easy, but it's been done and done well. Erin, like her Mother, and like her brother Matt, is a great academic. While it didn't always come easy, in most cases it took a great deal of hard work, Erin finished and finished in style and we are all cheering on her job search, go E go. She is interested medical Social Work (fancy that), preferably in the DFW area, and I know will be a wonderful asset to any organization.

While in Austin Marty spent a lot of time at Erin's house as Matt and I went and purchased adult beverages for Erin's party hosted by her ex-bosses at AmeriCorp. Marty went to the party and I think had a really good time. She was on her best behavior, no poop or fart jokes, got to meet Lyle's really cool parents and generally experienced a somewhat normal evening out with people we don't know too well. She did great.

After we got back to the motel, she rested a bit and then Matt and Sarah (our impregnated daughter-in-law) came up to the room and we got to listen to the heart beat of our growing grand child. This is way cool and Marty is really into it, asking questions and put in her two cents worth. Her eyes were wide and she listened intently at the electronic whooshing sound of the babies heartbeat. What an absolutely wonderful and clarifying sound and experience.

We all talked briefly about what, as Grandparents, we wanted to be called and then moved to names for the baby. I think the growing child is a boy, Marty, thinks it's a girl. I have named the boy, Larry-Bob, in honor of the two Grandfathers, if it's a girl, we will call her Larry-Bob too, it seems okay in today's world. Matt just sort of patiently smiles at this, Sarah is a bit more, "no you won't call this child Larry-Bob". I figure if I can get Bob, Sarah's Dad, to go along we can do this very quietly and in secret. So, when you meet my Grandchild, you can call them Larry-Bob.

Thursday, May 21, 2009

Strident and Affection

A couple of things came to pass yesterday.

Marty and I exercise her legs several times each week. It largely consists of her lifting her right leg and moving it around right to left, up and down, that sort of thing. Then I work the left leg as she can't move it at all. The other relevant detail is that I'm not a particularly patient fellow. I'm much better than I used to be, but I still think standing in line or waiting in traffic basically sucks. Yesterday, when Marty was raising her leg up, I'm saying to her, move it, move faster. I keep at her and she gives me "the look". You know the one, the one that says, "look ass.. bite me". I asked Marty if I was being a jerk and she said yes, that I was being too strident. Now keep in mind some days she doesn't remember her birthday and says she used to live in LaMarque (we still don't get that one) but she can sit there and tell me I'm being strident. I don't know where she gets the vocabulary, but she still zings me with it from time to time, and yes, I am too strident at times.

I don't know how we got to talking about it but we started talking about showing affection. Marty likes to have people close to her, not to handle, but to hold her hand and she really appreciates it when people show affection to her. She, like all of us, really likes to know she is loved. I told her I really liked that too. She then asked how can she do that and I remembered an event that occurred in July 2005 (is it scary I remember this stuff)....

When Marty had the anyerusm they opened her skull and removed the bone plate on the left front of her skull. Because of the swelling and bleeding they had to leave the bone plate out leaving Marty with a significant indention in her head. Thanks to a wonderful nurse in rehab who gave her a pink ball cap and Sue and Gail who gave us an "under construction" hat we kept the indent under wraps. In July Marty went back for surgery in Dallas to have a prosthetic piece placed in her skull. This is pretty big surgery, but based on where we had been, it figured to be a cake walk.

The surgery went according to plan and we came home very quickly. I remember talking with Marty right after we got home and I was completely dismayed by the cognitive ground we had lost. The general anesthetic and the shock of the surgery seemed to have knocked us back weeks on recovery. Marty was confused, very tired and couldn't really focus.

When we got home I was emotionally and intellectually exhausted and scared it would never end. I left Marty lying on our bed and sat on the edge of the tub in our bathroom and started crying. I just couldn't stop what was going on and on and on. Then my bride, with the bandage on her head came shuffling in and put her hand on my back and moved it back and forth, and all she said was, "It's going to be okay".

I related this story to her and she laughed at me. She then wanted to know how she can show her love now. (Everyone relax -- this is not X rated) I told her she did it everyday when she tells me she loves me, when she reaches out to take my hand, when she takes her medicine without complaint, when she puts up with all of the stuff we have to do to her without arguing, and when she pats me on the back when I hug her. This is our life.

Monday, May 18, 2009

Staying Out of the Hospital

In our life we sort of mark the days by how long it has been since the last doctor's visit, or last trip to the emergency room or the last hospitalization. Of late, we've done pretty well. We spend a lot of time with the good Dr. Martindale and his crack staff, but we haven't seen the inside of Providence since November (I'm knocking on wood even as we speak).

Marty has suffered from a number of bouts with upper respiratory infections but we have managed to stay on top of them and keep them in check. Every day we are not in the hospital is a good day to me. Marty has a really good friend, we will call her Dr. LB to preserve her reputation, always told her, "stay out of hospitals, bad stuff happens there". Good advise, lots of nasty bugs running around all those sick people.

And yes, I think I did break her ribs or at least tear some cartilage in her rib wall. We went to see the good Dr this afternoon where they managed once more to squeeze us into their really busy day at Providence Family Medicine. And no, I didn't crush my bride. I was trying to get her into the back seat of the car and we got stuck, so being the "bull in the china closet kind of guy" I thought I would just gently lift her up and move he about six inches. I lifted and things kind of popped and it hurt her. I really hate that. Marty gets "handled" so often, and I know she really doesn't like that and then I go and break her rib, genius.

So one more bullet in the old guilt gun. Marty has become such a sweet person, she always says the right thing. I say, "I'm sorry", she always says, "It's okay, I'm fine". Then I say, "I hate it when I hurt you like that", she then looks at me with those sweet blue eyes and says, "so do I". Got to love her.

Saturday, May 16, 2009

Raining


This afternoon I was standing in the garage watching the rain. You can't take the West Texas out of a guy and I still like to listen, watch and smell the rain. It really reminded me of a long time ago, in Lubbock, sitting in my garage of our rent house, I think on 6th Street. It was late in the evening and I was sitting with Marty just watching and smelling the rain. What I remember the most was how content and perfect it all felt and how I wanted that feeling to never go away. Well, it does go away, but it comes back again to visit from time to time. That's about all we can ask for really. Nikki brought Marty out to the garage and for a minute we got to sit in the garage and watch the rain, just like 35 years ago. It's a small thing -- but it was pretty cool. And then I think I may have cracked Marty's ribs trying to get her in the car. It comes and goes.

Thursday, May 14, 2009

The Great Debate Begins

The great debate over health care in the United States on like “Donkey Kong”. All sides are teeing up their best talking points and will probably fill the air with so much smoke and smog real facts and real issues for real people will be obscured.

Progressives will remind everyone there are 50 million people without insurance of any kind and bankruptcies are rampant because of health care costs. They will point to the fact the USA, along with Turkey and Mexico (two countries I know we want to emulate), is the only industrialized nation without some form of national health care. What they won’t talk about is the potential cost of changing our health care system and what some of the potential unintended consequences could be for the average American.

The conservatives are surely going to ring the “government can’t do anything right” bell and you will hear all about how the government will get in between you and your doctor. They will point out how Great Britain and Canada basically suck anyway so why in the world we would want to emulate those socialist jerks. What they won’t say is insurance companies are between you and your doctor (assuming you are healthy enough to get insurance) and the insurance company dictates your care. What will be glossed over is that “free market” insurance companies dictate who their customers will be, who they will serve and how they will serve them. It’s not a free market when market pressures don’t exist.

Change is coming. It’s coming soon. You know change is inevitable when health care industrial forces begin to agree that change is necessary. I’m not the sharpest knife in anyone’s drawer and I don’t know how we fix this very complicated issue. It comes down to whom you do you trust, the government or free markets. For me – I don’t really trust either one, I trust myself and I trust my doctors.

There are a lot of very bright people who know a lot of health care statistics, there are experts on our current health care delivery system, insurance math wizards who can do actuarial tables in their sleep and we probably don’t want to know what all the drug companies know. Me, I’m more of an experiential learner and due to significant life changes I have a somewhat unique perspective on health care.

I worked for a large corporation for 26 years and was swaddled in the cradle of corporate sponsored health care. I had no clue what it was like to try and find an insurance company to actually insure you. I had no concept of trying to really understand health insurance contracts, that’s what Human Resources did.

Then the first shoe dropped. I was down-sized. I had to face the reality of finding a job that provided insurance or an insurance company willing to take a gamble on my health, Then the 2nd shoe dropped (how many shoes are there??), my 50 year old wife had her first of two major strokes which left her permanently disabled and in need of 24 hour care and supervision. There goes the option of getting another job. My new job, professional caregiver, found me; only it had zero health benefits.

What I have discovered over the ensuing years is that you cannot take insurance for granted. I had to scramble and eventually found a policy for a 52 year old man who is too short for his weight, but other wise healthy. It’s called the really expensive plan with a really high deductable. My premiums started at a remarkably reasonable $250 per month. This year, for my 55th birthday, the insurance company sent me a Happy Birthday greeting with a notice that my premium would be over $400 per month. As for my wife of 30 years, first there was a high risk pool, yeah for that, and now Medicare, so far so good for that. All told our costs for insuring our medical care, even with Medicare, roughly $1000 per month. We are fortunate we can afford it; I don’t know how others do it.

Now we are facing the great possibility of badly needed real change and real reform in our health care system. And, trust me on this, the only ones who think our system doesn’t require change is the ones who have great insurance and the money to pay for it. I know, based on my experiences over the last years, change is not optional here, it’s an imperative. But, what does this uber-medical user hope comes for the health care reform? –

First, do no harm, be careful of unintended consequences. My wife has had miraculous and wonderful care through the most traumatic of circumstances. The innovation of our medical system saved her life. Quality health care providers have made her life safer and better. New and old antibiotics have been our life line. Her Family Doctor is patient, kind, thoughtful and circumspect about everything he does. This is the kind of treatment everyone should be able to get. Health care reform should not endanger what we do right, it should add to it, it should ensure there are more great doctors and make sure they are fairly compensated. It should guarantee the doctor and the patient make health care decisions. These decisions must be based on what is reasonable, not what the “free market” dictates.

Insurance companies must be controlled. Right now, they choose who they cover, they choose how they will cover you and ultimately what kind of care you will receive. They decide what medicine you will receive, they decide what tests you can have, they ultimately decide if you will have surgery. And, they do all of that for profit. I’m not against profit; I’m not against insurance companies. But, we have to realize, when profit motives and patient care are misaligned, the insurance company will always choose profit, that’s their job.

Patients with chronic illnesses need assistance in how to best manage their condition. My wife and I are lucky; we have the financial means which enables me to be a fulltime caregiver. Many people don’t have the same good fortune. Our goal, along with her doctors is to keep her out of the hospital, keep her out of emergency rooms and keep her away from intrusive, expensive procedures which do not add to the quality of our life. By coordinating her care and by being available her Doctors have been successful in saving money and keeping her safe. Full time case managers who work for the patient could save money and make life better.