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bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/3/2008 5:55 PM (GMT -7)   
Hi Everyone,

Well I saw my/a Hep Dr on the 24th. He says my blood work looks really good but he wants me to lose 35 pounds. I asked if he was going to treat the dragon and he said not until I lose weight. My normal before I found out i was sick weight is 145 and i am 5'6. I now weigh 176. He was glad that I have continued not to smoke but said that substituting ice cream for cigarettes could kill me too.(fatty liver disease) I told him I had contacted a foundation that helps with fundraising for transplants and that I needed a letter that said I was on the list. I told him that the committee wanted me 1yr alcohol free , at least 3 months smoke free and to meet financial obligations that my insurance (medicaid) would not pay as well as the temporary housing relocation and food for thirty days plus anything else. He said for me to lose the 30 pounds and we would talk again.
OK here is my situation. I am filling out the fundraising campaign paperwork. I don't know how many of you know about the paperwork but there are alot of obligations that need to be filled before sending in.(Campaign manager, co chair, publicity person, treasurer, and 20 volunteers in writing) . OK so I got everyone I need and that was really hard on me to ask people to do this, especially in my small town.You also need to send in the status of your transplant. OK lets say the committee says to wait another 6 months. Do I go ahead with the fundraising? Is it possible that I might not need a transplant if my bloodwork looks good??? My MELD is 11 and viral load is lower than its ever been,. Have light to moderate brain fog, major muscle aches, take lactulose 3 times a day but still only go 1 time, my spleen is very enlarged, liver still very enlarged, Dr lowered spirolacton down from 300mg to 200mg a day.
Also lets say I started to get funds and don't need transplant for a long time, is this fair or right to the people that donated??? Can ESLD with HepC (told to get my affairs in order a year ago) actually get better. I take milk thistle but have taken that for years
I am so confused now and I can honestly say its not brain fog right now
HELP....opinions please
Karen in Nevada

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 11/3/2008 6:21 PM (GMT -7)   

I say go ahead with fundraising as things can change very fast. If by some miracle you dont need a transplant maybe then the funds can be moved to another person in need. Raising that kind of money takes alot of time so you wouldnt want to wait to long.

Sue


When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/3/2008 7:13 PM (GMT -7)   
Hi Karen, Hope you are feeling okay tonight. I agree with Sue. Go ahead with the fundraising. She absolutely right. Things can change quickly. Better safe than sorry.

Good luck with it and thoughts and prayers for you.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/3/2008 8:21 PM (GMT -7)   
THANKS PG AND SUE

HOPE ALL IS WELL WITH YOU ALL TONIGHT

KAREN

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/3/2008 8:28 PM (GMT -7)   
Karen,

I agree with PG and Sue.....go forward with the fundraising, because if you wait, then it will be even harder. Start now while you can, because all that does take time.

Good luck w/ the fundraising!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/3/2008 9:35 PM (GMT -7)   

I think that Sue also had a good idea to make the funds available to another needy person, preferably a transplant candidate, if by some miracle you don't need a transplant.

I gave up cigarettes nearly 6 yrs. ago, and replaced them with ice cream and sweets for a long time.  Then I got ascites and really blew up.  At one point I was 135--5 lbs. more than I was at 9 mos. pregnant.  I am only 5 ft., so that is a lot of weight for me.  Once I was placed on Lasix, I dropped weight fast.  I had always felt that a lot of it was fluid retention, but it wasn't until my feet and legs started swelling that I was given a diuretic.  In addition, after my hernia surgeries, my tastes changed.  I have been eating fresh fruit in place of sweets.  Also fresh veggies and little meat.  I lost 18 lbs. altogether, but gained a few back and am now trying to lose those.  I can only blame it on eating too much of the good stuff, plus not getting enough exercise.  about the only thing I can do with artificial hips is to walk.  Lately, my rt. hip is giving me pain, so I'm still not able to walk much.  All I can do is really watch my calorie intake.

It sounds like your doctor wants you to be as healthy as possible prior to surgery.  Abdominal surgery is made more difficult if there is a lot of fat to cut through.  It also elevates blood pressure.  So look at your diet, and perhaps you can see ways that you can exchange certain foods for more healthful ones.  wink   When I get a sweet attack, I have sugar-free Jello with fresh strawberries sliced in it and topped with some light whipped topping.  Fresh fruit usually does it for me, though.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/4/2008 12:06 PM (GMT -7)   
Connie, I have 3 hernias, 2 in abdomen and 1 very painful groin one. Will they fix them before TP/ Do you know

Karen

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 11/4/2008 12:35 PM (GMT -7)   
Hi Karen,

In my experience - you will be absolutely amazed at what dropping those 30 pounds will do. Hep C LOVES fat. In my case my normal weight has kept me healthy.
I think you're getting way ahead of yourself.

I'd say keep fundraising & drop the weight at the same time. You might not even need to do treatment after its gone. Carrying extra weight with Hep C is like encouraging the virus to multiply. I'm trying to remain slightly underweight so my Hep C has no place to hide.

Best, Cary

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/4/2008 4:26 PM (GMT -7)   

Karen, since my hernias were incisional hernias that developed after the right lobe of my liver was removed, I can't answer your question.  There was an incision made in a frown shape from one side to another, and a separate incision made in my midriff that met with the main incision.  It was this midline incision that developed hernias.

You would need to ask your hepatologist about the hernias in relation to a transplant.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/4/2008 5:03 PM (GMT -7)   
Thanks
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