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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:

WRITERGIRLMEL 3/7/2010 9:44PM

    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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Who dat?! Lessons learned from the oddest sources.

Monday, February 08, 2010

Warning: this is more about football than weight loss.

As I mentioned the other day, I've been a Saints fan longer than a lot of SparkPeople have been alive, through all those years of paper bags on the head and generally being a laughingstock. Last night went beyond vindication. I cried. (Okay, I cried when The Who played, too - no lip synching for those guys and they still sound amazing.) Brees crying, holding his son - that was the real deal. I think Peyton Manning had an off game because he felt that hand of Fate, too. The Saints, more than any other team, I think, play for their city. God knows Louisiana has suffered, but last night might help the rebuilding just a bit. Lesson one: you can't fake some things - the genuine article is soul deep. Emotion and togetherness is a good thing.

I grew up in Philadelphia...well, yeah, sure I love the Eagles, although they have that chronic disease called fumble-itis. And they have a tendency to blame the quarterback, even though it's damned hard to throw the ball while lying on your back. I've got to hand it to the Eagles fans though - when the team took on Michael Vick, the word across the football boards was that the city would reject him completely and probably pelt him with unspeakable stuff the mionute he came out onto the field. Those sportswriters have obviously never spent much time in Philly, because, honestly, they'd embrace the devil himself if he could drop a long ball right on the numbers. Boo your own guys, sure - throw snowballs at Santa Claus, hey, why not? But let Michael Vick put his past behind him, and let's see what he can do. Lesson two: "Like my buddy Timon says, you've gotta put your behind in your past."

Bill Cowher is a relative, and when the Steelers won the Super Bowl in Detroit, it was a fine, *fine* moment for Cowhers everywhere. My second daughter lives in the 'burgh, and it's a wonderful city. Very alive and vibrant. The residents love their sports teams (granted, it's easier when the teams are doing well...) and being downtown for a game is worth the traffic debacle. The population of the city is amazingly young - I'm not sure of the exact demographics, and I'm too lazy to look it up, but as I recall the downtown population is something like 75% under 40. Lots of colleges and an urban redevelopment plan that's working to draw in young professionals, and a thriving and exciting climate for the arts. Lesson three: don't rule things out because you think you're "too old for that stuff" or it's too much bother. You might just have fun. If you look silly, well, there are worse fates.

One last football acknowledgment: the New York Jets. They took the national anthem (which remains The Star Spangled Banner, despite Ray Charles' and my own attempts to get it changed to America The Beautiful...but we'll talk about that another day) and changed it a little, so it went, "...O'er the land of the freeee - and the home of the JETS!" Lesson four: it really doesn't do any harm to have a little fun with elite people and sacred institutions. As many wiser than I have noted, "F*** 'em if they can't take a joke."

But maybe that's why Mum remains an anarchist.

  


Friday, then on to the weekend! And a Saints Super Bowl!!

Friday, February 05, 2010

I don't know about you all, but even though I don't work outside the house anymore, I still find it much easier to stick with The Plan during the work week. Weekends, even with the best of intentions (and we all know right where that pavement leads) it's tougher. This weekend, with my beloved Saints in the Super Bowl, it's going to take one hell of a lot of planning not to slip.

(SIDE NOTE: I've been a Saints fan a long, LONG time. Before the famous "Playoffs? PLAYOFFS? Mora days, back to the bag-on-the-head times. Including the days of speculation about voodoo curses, Cajun quarterbacks and a host of other ... memories. All of you Johnny-come-latelys are welcome aboard, but you'll have to forgive those of us who wonder, just a little, if perhaps this is a sign that the end of the world is at hand...)

Anyway... where were we? Ah, yes. Planning for the weekend. Keep reciting "Failure to plan = planning to fail." I never used to believe that and refused to spend the time necessary to plan, shop, and prepare - I had so many other important things to do! Yeah, right. But fitness won't fit in my day unless I make it its own special little spot, and it seems healthy food is only convenient if I prepare it and stash it in the refrig where I can get it easily.

I have one of those PlannerPad thingees that breaks the day up into hour slots, with note space and places for daily, weekly and monthly goals, and this is really helping me get a handle on not just my diet but my life in general. I had no idea how much extra time there was, tucked in here and there in my day, until I started to block it out. Now I have time to meditate, to clean up (yeah, well, it can't all be good news), to read without guilt, and to play around with new art and ideas, like SoulCollage.

So right now, I think I'll start to lay out the weekend on paper, including searching in the SP recipes for some healthy Super Bowl snacking ideas.

Have a great weekend!

  
  Member Comments About This Blog Post:

MARLOU4 2/5/2010 12:48PM

    Who Dat Who Dat. Rooting for the Saints.

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MYMONSTERSX3 2/5/2010 12:24PM

    Have a fun weekend. Good luck to the Saints. Not normally a fan but since my team is not playing I go for the underdogs

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BEMYDREAM 2/5/2010 12:24PM

    I agree - weekends are harder! Keep up the good work and Go Saints!

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File under: it never hurts to ask

Thursday, February 04, 2010

My husband is dealing with some serious health challenges, and since we'd pretty much played out what the medical community had to offer, decided to try some alternative therapies. Thanks to a suggestion from someone I met here on SparkPeople, he started receiving acupuncture and has been making real improvement. (Thank you, Victoria!) His acupuncturist is also certified in Chinese medicine and herbs (with something like 3200 hours training, some of it in China) and he was interested in trying that as well.

Misha Cohen is to the world of Chinese medicine in the US (particularly as pertains to hepatic problems) what, I dunno ... Dr. Phil is to the world of talk therapy. On a whim, the acupuncturist called Dr. Cohen, got through (a feat in itself), discovered that she would be interested in handling John's case and had a cancellation *next week*. We don't even have to go to San Francisco, thanks to fax machines, digital photography and tele-conferencing.

Sometimes the hand of God is subtle, and sometimes S/he really grabs you by the collar and sets you on your path.

Stay tuned for updates, and keep your fingers crossed!

  


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