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Thursday, March 18, 2010

Tears and laughter.

Two years ago, my mother was dying. I lived with her through the end. All the following year was a nightmare of two houses - both under construction - probate, both daughters off to college, husband with failing health, bank accounts with failing economy.

Then one day, it was all over. I was over losing my mother (as much as one ever is.) The daughters were happy at their respective colleges, and I was (sort of) over the upset of having them move out. The husband was apparently healthy. The estate was settled. The construction was over. (The bank account hadn't recovered, but at least it had stopped losing money.)

Then things slowly, slowly started heading downhill again, gathering momentum. The roof started leaking in mysterious places. We had six (*six*) cars on the insurance policy, and not a one of them was roadworthy. Barn tried to fall down. We began positively hemorrhaging money. And husband took a major turn for the worse and was apparently beyond medical help.

But now, after much maneuvering, husband is properly diagnosed and is once again on the mend. One daughter is graduating this year and will be moving back home (just in case I had plans for her room...) for a year before grad school. My mother's house is being rented out and will bring us a nice steady income.

I realize that the tides will likely turn again some day... good times will fall into a slump, bad ones crawl out of the ditch... but sometimes I wonder if it's all in my approach. Are the good times *really* so different from the bad? Sure, some of the markers - health, finances - are up and/or down, but maybe the rest is "good" or "bad" because of how I squint my eyes when I look at it.

I read an interesting thing the other day - a rating of the fifty states in terms of the happiness of the inhabitants. The state with the highest happiness rating was Louisiana, she of the Katrina devastation, low per capita income and general bad doings. (This was before the Saints SuperBowl win, too.) Makes you wonder if money, houses, even jobs are all that important in the long run. A friend of mine was in New Orleans a year or so ago and returned to tell me that, "Those people still don't have nothin'." Yet they're *happy*.

Maybe it really is all in the playing.

  Member Comments About This Blog Post:

HIPPICHICK1 3/20/2010 10:25AM

    Sounds like life has thrown you for more than one loop lately. The way I see it is that the Universe (or God or Buddha or Allah...they're all the same to me) never puts more on your plate than you can handle. You handled all of that stuff on the recent past, no? Maybe you could ask for a smaller serving in the future?

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Dear Medical Profession: what are you thinking??

Friday, March 12, 2010

This has been going around in my head for some time now - let me know what you guys think.

When my husband was first diagnosed with hepatitis, our family doctor decided she was out of her depth and sent him to a gastroenterologist. He's asymptomatic, so when the gastroenterologist (henceforth known as Dr. B) offers him a two year drug protocol with heavy-duty side effects and a poor chance of success, he passes on it.

Husband also had small raised dots on his shins and arms - doctor (not Dr. B, but another gastroenterologist in his group) said that he didn't know what it was exactly, but he guaranteed that it wasn't connected with the hepatitis.

Time passes....

His hepatitis starts to catch up to him last summer - he has a major weight loss, massive fatigue, slightly jaundiced, the whole deal. Back we go to Dr. B, who says (and this is close to a direct quote), "I could have cured you five years ago, but I can't cure you now. The most we can do for you is try to manage your symptoms." Dr. B then gave him 4-6 months to live and sent us home. (Please note the language here - not "you could have been cured", but "*I* could have cured you.")

A month or two later (after a couple of nasty events involving brief hospitalizations), we go back to Dr. B who offers the same drug protocol as several years ago, but with a reduced dosage of only one of the drugs, explaining that this would hold off further cirrhotic damage and let DH hold on until later this year when some snazzy new drug combo would be available.

Meanwhile, back at the ranch, we have, well, me. I have a history of what I like to think of as social activism - other people have been less complimentary, using terms like "loose cannon." At any rate, I was unwilling to accept the prognosis and through a series of events chronicled here in earlier posts, found a hepatologist (and as many times as I've written that, I still keep writing "herpetologist" ) at Mt Sinai Hospital in NYC. We took the train down there, saw the new doctor (Dr. D) and got an entirely different diagnosis, prognosis, and treatment.

Turns out 1) husband isn't likely to die momnentarily, 2) the new drug won't be available until at least next year (awaiting FDA approval), and 3) the drug treatment recommended by Dr. B would likely have made the cirrhosis *worse* and the virus stronger rather than weaker. Oh, and remember that skin problem? Turns out it's something called lichen planus, and it is 100% associated with hepatitis.

So here's the question: what about all the other people? The ones who don't have a hardhead like me who'll hunt up a specialist, and are lucky enough to have the time and financial wherewithal to drop everything and go to NYC for two days? The ones that are stuck with Dr. B and his friends - after all, he was recommended by the family practitioner and is reputed to be one of the better gastroenterologists in the Syracuse area.

Obviously, this doctor and his buddies should stick to what they know - acid reflux, colonoscopies and the like. (And believe me, I'm not belittling those things.) But why would they present themselves as doctors who not only know the score on liver disease, but know it so well that they can tell someone they'll never see another birthday? Are they so cock-sure of themselves that they don't know what they don't know?

And what about those other people... that's what I keep coming back to. Hepatitis is one of the fastest-growing major health issues in the world, so do those people just go see Dr. B and company, get their poor prognosis and/or drugs of little value, then just go home and die like good patients?

What about those people?

  Member Comments About This Blog Post:

HIPPICHICK1 3/20/2010 10:44AM

    WOW! Just wow. Dr B. needs his license revoked. What a poor excuse for a doctor.
I'm with you on the social activism thing and I too have been called names for it, like steamroller and $hit disturber, but I don't really care. If my health or the health of a loved one is a stake, then I'll be steamroller, baby....gonna roll all ovah yoooooo!!
emoticon emoticon emoticon emoticon emoticon emoticon
Oh great. I just gave myself an ear worm.

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WRITERGIRLMEL 3/14/2010 11:17AM

    In my opinion, the number one thing patients can do to improve the quality of their own care is to be a "hardhead." The problem is, as you've pointed out so nicely, it really does take resources many people simply don't have to be one. Far too many patients are stuck seeing the only doctor their insurance covers or are unable to seek second opinions because of financial limitations. I'm so glad you were able to be a hardhead. Everyone else: ask questions, do your research, and use your brain. A doctor's word isn't infallible.

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BUTRFNGRZ 3/13/2010 9:03AM

    Thank goodness for people like you who are able to track down the truth! Just keep spreading the word and getting the info out to as many people as you can.

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STARLASUE 3/13/2010 9:02AM

    The sad part is that more people than not blindly follow what their doctor says. They either do not have the smarts or inclination to speak up when something isn't right. We really MUST be our own advocates and advocates for those we love.

Good blog. Sorry you had to have those experiences to write about.

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SHERYLDS 3/13/2010 8:51AM

    We need to remember that the health profession is a business, and the insurance companies have become the executive managers of that corporation. It's a sad state of affairs but reality. Luck is on the side of people like you who have the intelligence to delve further and the will to pursue better answers. Wishing you and your Husband, good health.

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YARELL 3/13/2010 7:05AM

    I too am a patient activist... but it is up to us, not the Dr's. They only do what they do and get away with what they do... (am NOT belittling them at all) because we let them. Most people take what they say as gospel, believe the myth that they aren't suppose to bother the Dr with all those questions... when in fact ethical Dr's want to hear them, they want to hear about all the symptoms, it makes their job easier! Ask them, they will tell you.
They want you to bug and bother them, write down, in detail what you want to go over with them and take it, and someone else with you.
Ask MrsFixit about that! She took pages of questions when she went to Roswell. That way no one forgets something. Amd you can never tell when something is important, like that rash!
Way to go, stepping out and making someone listen. Sounds like you need to NOT got back to Dr B again. He sounds like a demigod, or thinks he is.

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ADEVORES 3/13/2010 6:57AM

    I complete agree with you. I think you should write a letter - similar to this blog and send it to both the family practitioner and the first gastroenterologist you saw. Sounds like they both could use to hear about your experience. And even if it doesn't work on Dr. B, it might give the FP doctor a second thought about where he refers his patients.

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WANDAC2013 3/13/2010 12:53AM shows that we all need to get informed and be willing to stand up for ourselves. No one doctor or group of doctors can know everything about all things are always being learned. You're husband is lucky to have you! And, for all the others....God help them.

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South Beach Diet (excuse me, "lifestyle")

Wednesday, March 10, 2010

I never realized how much of my diet was composed of carbohydrates until I started the South Beach thing. Since my husband pretty much has to do this diet (or Sugar Busters) for health reasons, and since I'm not an enthusiastic cook to begin with, let alone one who would make two separate meals each time, I'm doing it along with him. (Hey, why not? It can only help, right?)

As a mostly-vegetarian, my meat repertoire is somewhat limited, but I'm great with the veggie sides - and I'm learning the meat deal. The thing that surprised me, though, was the realization of how dependent upon grains and starchy vegetables I've become when planning meals. The concept of meat+non-starchy veg was pretty foreign. Spring is coming soon (I hope), and that always makes eating lightly more appealing, too.

DH is shocked at how many vegetables there are besides potatoes, corn and carrots. I've discovered that when it comes to a lot of vegetables, dips and all, a sort of "Don't ask, don't tell" works best. Tonight I made a dip for the crudites that was basically avocado and ricotta, plus garlic, onion and cilantro - he liked it, but we both knew better than to discuss the ingredients, since he "knows" he doesn't like avocado or ricotta!

It's been years since I've been on a diet with planned menus and recipes and the like. I'm pretty excited about this, though, as so many people seem to have such success with lower carb diets.

I don't really miss the sugar (although I did enjoy honey in my tea and on my yogurt...) and it's nice to have a plan - I'm tired of thinking. (Fifteen years ago, I lost 20 lbs on NutriSystem, and that non-thinking was the appeal - just rip open a box, swallow the contents, and get back to what I was doing.) Mostly I miss my evening glass(es) of sherry - I'm such a creature of habit. Guess I'll just have to make some new habits!

  Member Comments About This Blog Post:

TDEMJANEC 3/11/2010 7:32AM

    Oh man, I totally know what you mean about not having to think! I often wish someone would just put it in front of me, tell me "But it's Good For You!", I'd say "OK", eat it up and be done with it. I'd still miss my evening toddy though, too. emoticon

Sounds like you're trying to make it fun; must be fun to have your partner on board.

Good luck!


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update: good news!

Saturday, March 06, 2010

First, a bit of background: my husband of 25 years was diagnosed with hepatitis C about fifteen years ago. (We think he must have contracted it from transfusions following a nasty car accident, back in the days before screening.) He had no symptoms - which is typical - and since there was no good treatment option, he decided to just "keep an eye on things."

That apparently worked well enough until late last summer, when he started to feel very fatigued and unwell. He lost forty pounds in the space of two months, developed encephalopathy (comes from too much ammonia in the blood, a result of poor protein metabolism in the liver, as I understand it), hand tremors and ascites (fluid build-up in the abdomen.) Testing indicated severe cirrhosis. Local gastroenterologist gave him lass than six months to live and nothing to do but "control the symptoms" - lay off the salt. He also offered a reduced dosage of Interferon, in the slim hope of holding off destruction until a new drug became available some time late this year. John should be evaluated for a transplant, but it probably wouldn't do any good even if he could get one.

A kind woman here on the Living with Hepatitis C Team offered a suggestion: she had a relative in a similar situation who had had remarkable success with acupuncture and Chinese herbal medicine. My husband and I are both drawn to alternative stuff anyway, and with virtually nothing to lose, went to a local acupuncturist. She, in turn, contacted Misha Cohen, a woman who is an authority on the use of Chinese medicine in hepatitis C treatment, and we had a long Skype consultation. Cohen gave us a long evaluation and treatment recommendation, and strongly suggested we see a board-certified hepatologist.

(Following a couple weeks of acupuncture and Chinese herbs, for the first time in six months John's complexion has lost its yellow tinge and he feels well enough to do some things. The ascites is under control and the encephalopathy is completely gone.)

So this week, armed with a folder full of test results, we took the train down to NYC to see Dr. Douglas Dieterich (someone Misha Cohen specifically recommended) at Mt. Sinai Hospital. Dr. Dieterich reviewed all the results, gave John an examination, and said that in fact he was *not* in particularly bad condition - yes, he has hepatitis C and ascites and cirrhosis, but there are things he (my husband) can do to help himself.

JOhn has always been a big sweet-eater - candy, cake, ice cream, you name it, if it's got sugar in it, he'll eat it. Apparently this has contributed heavily to non-alcoholic fatty liver disease (NAFLD), which in turn makes the hepatitis C progress more rapidly. Dr. Dieterich said that if John can just eliminate the sugar from his diet (in addition to the salt, for the ascites and edema), he should be able to maintain or improve his condition. Then, when the new drug combination becomes available next year (it's in FDA review now) he can take that and eradicate the virus. With no virus and no fatty liver, even though he has cirrhosis, the remaining "good" liver should be able to regenerate and he should be, if not "good as new", at least able to live a long and full life.

So after spending the last month trying to assimilate the fact that my husband was dying - having just lost my mother, fledged both daughters and had my husband (and myself) retire, this was supposed to be the start of lots of good times, not the end of times altogether. I started mentally eliminating a lot of plans we'd had, and figuring out just how I was going to run the 180 acre organic farm by myself (and the hell with any other plans or projects I'd had in mind.) Wrapping my brain around the concept of losing my husband was just overwhelming.

And now it looks like he's going to be around for a good while after all. He has some Western medicine drugs to take - mostly diuretics - and a host of Chinese herbal preparations and supplements, and he has to change his diet and get some exercise. If he does his part, it looks like he'll be okay. It's like God issued his recall, then changed His mind.

Dr. Dieterich recommended John start the South Beach Diet (or Sugar Busters) to help him avoid sugar, get his 80-100 grams of protein daily and start to rebuild his body a little. As a mostly-vegetarian, this diet - excuse me, Lifestyle - isn't something I was real familiar with, but I had Amazon overnight the book to me and read it last night. Since I basically refuse to cook two meals three times a day (hell, I'm doing real well to cook one!) guess who's going to be doing the South Beach Diet along with him?

At this point, I'm just exhausted - I realized I've been basically holding my breath for a month or two, and organizing my life around my husband losing his. I haven't been able to focus on anything, let alone my own weight loss/fitness /house renovation/book/art projects/etc. and I haven't really slept much. Last night I went to bed at 7:30 and slept until my usual getting-up time of 5:30/6:00 this morning, and I'm still wiped out. It's actually sunny out (rare in Central New York) this weekend, but I may well squander the opportunity to get something done and just rest. Read the South Beach book again. Make some plans (plans for the future that include my husband! Wow!)

Heartfelt thanks to any and all who have offered support along the way here - especially Katrina, who held my hand during two John-is-dying scares - and for anyone facing a similar challenge, the lesson is that, truly, where there's life, there's hope.

  Member Comments About This Blog Post:


    That is wonderful, wonderful news!

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GAILRUU 3/6/2010 10:08AM

    What wonderful news! I wish you a long and healthy life with him!

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STARLASUE 3/6/2010 10:02AM

    Great news! Sending lots of prayers and energy for healing.

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CARRIE1948 3/6/2010 8:34AM

    Your husband might try getting some protein in the form of soy rocks (a bar form) or protein powders. There are some with about 20 - 25 grams of protein with little sugar.

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RSSSLHB 3/6/2010 8:34AM

    emoticonI will be praying emoticon

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GROEDER 3/6/2010 8:19AM

    What a roller coaster you have been on!!! I pray that it is all smooth from here. Try to keep a positive attitude and know that there are a lot of folks, like me, here in Sparkland praying for you both!!!

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THERAPIST2 3/6/2010 8:15AM

    How wonderful! Wishing you all the best!

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From now on everything will be exactly the same.

Friday, February 26, 2010

I first heard that in a writing course I took a few years back - forget the source now, but the quote stuck with me.

I'm not sure if it's my admittedly short attention span, a lack of consistent motivation, or just feeling overwhelmed by the mundane, but I have real trouble keeping with the Plan here. I mean, doesn't almost everyone feel overwhelmed by their responsibilities, at least part of the time - it just seems like a regular part of life.

I just can't keep all the balls in the air at the same time - I can concentrate on working to get my husband well - or at least better - again, *or* I can work on the book I've been plugging away at for a year, *or* I can try to get the house in some sort of livable condition (after my mother died, we brought everything here, and it's still in boxes everywhere - plus the ongoing restoration projects with little details like putting in electricity), *or* I can work on any one of several ongoing art projects, *or* I can concentrate on the diet and exercise deal. And that's not mentioning the regular stuff like shopping and cooking and laundry.

If I concentrate on any one of those for more than a couple days, everything else goes to hell in the proverbial handbasket, but if I try to keep an eye on all - or most - of them at the same time, there's no significant progress on any front. When you throw in the small zoo (just the usual housepets, but ...let's see...three dogs, four cats, miscellaneous small stuff) and the "horticultural garden" - the legion of houseplants and things sprouting for spring planting - I feel like I may as well just get up in the morning, slam my head into the wall five or six times, and go back to bed.

Plus my stupid feet. My mother called them "typical Pisces feet." I was the first kid on my block to have a joint replaced - at 38 years old, I had the left big toe's first joint replaced with a synthetic one, the result of a bunionectomy gone wrong a few years before that. Add in a couple stress fractures, the odd broken toe and having spent a couple decades working on my feet all day, and they are not happy family members. Now the right one is complaining mightily about something - it hurts like the devil on the outside, about an inch below the ankle bone. I have no memory of injuring it. Actually, it only hurts when I wear shoes, but since it's winter that's not much consolation.

I'm not really whining - just sort of thinking out loud. I suspect I'm simply overtired - I have as one of my "other goals" getting 8 hours of sleep a night, and I see that I haven't met that goal in a good while. In fact, this week I seem to be averaging about four hours.

That's all for now - duty calls (actually bellows, from the bottom of the stairs.) Thanks for listening.

  Member Comments About This Blog Post:

YARELL 2/27/2010 6:43AM

    Take a deep breath and decide what you cannot ignore, I suspect husband's health is one. Then pick 2, maybe 3 others and work on them. To heck with the rest. At night, sort a box or too, and toss ALOT, while ya watch tv. Rests your feet and gets you a little closer to cleaning out.
and yes, you need more sleep. That is alot of what can overwhelm us.
Good luck with it all.

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JENSHAWN 2/26/2010 8:43PM

    Totally understand...I concentrated on getting the finishing touches done on my newly remodeled bath and absolutely nothing else got done all week! My husband and son "forgot" how to do clothes and dishes. I feel like sometimes I live with animals but any hooo I still love them! Good luck and remember just to take one day at a time:)

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