Tuesday, May 13, 2014

Hellurrr Again

Thank you all, who have responded to my first blog posting!!!  It was very encouraging.

Please don’t be upset if I haven't got back to some of you.  I'm still working on it.

Like everyone, I have my good and bad days.  I just don't see having many good days this summer.  I'm starting to retain fluids again.  It has not been as bad the last 2-3 months, but I have gained 20 pounds in just a couple of weeks.

This brings me back to my story I started earlier.  I finally had my first appointment with the “liver specialist” in November of 2012.  Turns out, there are no liver specialists in Springfield, Missouri, and this specialist is actually a G.I.

His purpose is to be a go-between me and the liver specialists in St. Louis, who are about a 4-hour drive away.  My doctor here orders all the tests (blood, MRI, ultrasounds, cat scans) and anything else they would need.  I sure didn't want to leave here at 2 AM, to have the tests done in St. Louis.

My first appointment in St. Louis was pretty disappointing after only getting to talk to that doctor maybe 20 minutes or so.  He did, however, concur with my Springfield “liver specialist” that I have non-alcoholiccirrhosis of the liver.  Not that this was something I wanted to hear, of course.

I have never been much of a drinker.  In fact, I can count on both hands the times I've been intoxicated.  Come to think of it, the last time was with my husband (who has always been such a good influence upon me) on the night of our second wedding ceremony over 20 years ago, which is another story for another time.

Now, if having cirrhosis of the liver is hereditary, I could understand, as my Daddy was a serious drinker.  I always had a fear of him because of his temper.  It was bad enough when he was sober, but if he'd been drinking…  Okay, that's enough of that.

Nonetheless, there is a hereditary factor to my illness.  For fatty liver disease runs in my family, and when combined with type-2 diabetes, non-alcoholic cirrhosis of the liver can result.  Of course, if it had not of taken the wonderful doctors I have seen here in Springfield over 10 years to connect the dots, I might not be as sick as I am now.

Anyway, back to the doctor in St. Louis.  He gave me 2-5 years to live without a liver transplant, and at that point, I wouldn't be placed on the transplant list until I had lost 50 pounds and quit smoking.  Goodness, I have a better chance of winning the lottery!  In any event, it couldn’t hurt to buy a ticket—huh?

I make the trip back to St. Louis every six months, and there is a group of doctors working together up there.  So, I may never see the first one again. Whoever is free (in regards to availability—not money) at the appointment time is the one I'll see.

I have quit smoking for the most part, but when I'm with my sister, I have to smoke.  Using an e-cig has proven helpful in reducing the amount of nicotine I ingest—not to mention being a lot less expensive.  I want to keep using it and wean down to 0 mg of nicotine before quitting altogether.

Instead of losing weight, I have gained, though.  Between the fluid and just plain ol’ overeating, I have gained over 50 pounds since first seeing the doctor in St. Louis.  I was so excited when the fluid started to come off from the paracentesis procedures and the diuretics starting to really work.  Hey, I even doubled the 50 pounds he wanted me to lose.  YIPPEE!!!  I felt so wonderful for about a month, and then the weight started piling on again.  Looks like salads are my new best friend.  I am scheduled to go back to St. Louis in August.  So, I have time to get it better under-control.

It's been well over a year since I was diagnosed with non-alcoholic cirrhosis of the liver, and I seem to be holding my own.  My liver is still functioning.  Not great, but it is working.

I am so sorry to drag you all through the cirrhosis drama, but I wanted to show you what I can do— despite being so sick.  To be perfectly honest about it, blogging is as much about our Heavenly Father showing me what He can do in and through me—despite my sickness, though.

I'm so tired, but I'll hang in there for a while longer.  Future posts won't be so gloomy, cuz I have good things going on, too!

See ya all later.

10 comments:

  1. Ending up with him, that's what I call sick!

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    1. What do what do you expect when I live in the state of Misery? Oh, I meant Missouri.

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  2. Don't beat up on yourself for having the odd cigarette now and then...boy...you've enough to contend with. I'm an ex-smoke, but I never o on about it...about other people smoking. Actually, when I walk past someone smoking outside of a building I quite enjoy the aroma of the tobacco still. I don't tell anyone what they should do. We all make our own choices. So, as far as I'm concerned, Arlynda...if having a ciggie makes you feel better for a time...go for it!

    You're kind of between a rock and a hard place; and I hope all that changes for you in the near future. :)

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    1. Hey, Lee! Well, when a transplant doctor tells you that he won't put you on the list to get a new liver until you have no detectable level of nicotine in your bloodstream...

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  3. giving up smoking isn't always easy. I quit a little over a year ago and don't miss it one bit.

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    1. Yeah, but Duke might, Ann. For Jerry has told me that it was around the time when you got serious about quitting smoking that you stopped frying bacon for Duke. On the other hand, the boy just ain't right in the head. (LOL?)

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  4. Gosh - you sound in rough shape - I just found out about this. I hope you are okay.

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    1. Sandie, yes, as teen and young adults we don't think about our health, and it creeps up on us and bites us in the tookis. lol

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  5. Arlynda my brother was diagnosed with cirrhosis of the liver but it's a hereditary genetic disease called alpha 1 antitryspin. He has had great help with the Liver Clinic of the Mayo Clinic. (He has had to travel to go to Mayo) Just wanted to let you know that they are one of the leading hospitals in the country working with Liver diseases and MELD scores and Transplants.

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    1. Thanks for stopping by, Angel Abbygrace! I hope your brother pulls through. The Mayo Clinic was where they caught that my husband had rheumatic fever before it caused any permanent damage when he was around five years-old. Thanks for the info!

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