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Should we let Narure run its course?????????

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Posted 12/12/2008 4:26 AM (GMT 0)

Windover

I wanted to tell you my husband has had a MELD of 10 for quite some time.  Last year when his MELD was 18 he had kidney functions problems but no HCT problems  In fact he was in the hospital as much as he was out.  Had to be drained at least once a week sometimes twice.  One week they got 30 liters.  It was a nightmare.  WE have had the fluid problem under control since June until last week.  When his MELD went down to a 10 he started needing transfusions.  At first they said it was because his body just wasn't making the cells fast enough.  He would need a transfusion about every 6 weeks.  They ususally want to tranfuse when his HCT gets down to a 25.  Most recently his HCT has been as low as 23.  He has been getting transfusions every three weeks then another in a week then three weeks again.  They don't want to get the HCT any higher then a 30.  Something to do with volume.  I'm sure you understand that more then I do.  Also the blood results I ask for them immediately.  Thanks to PinK Gramma.  She tought me that right off the bat.  Now I can calculate his MELD as soon as I get home so I don't have to wait for days for the Dr. to call.  HOpe this helps.   Congrats on the appointment.  I remember how good it feld when we got to that point.  Get ready for a long hard road.  But as some of the members on this forum can tell you it was so worth. 
JoAnn

Posted 12/13/2008 12:08 AM (GMT 0)
Exhausted,
Thanks for the post.....Were exhausted ourselves. Been at hospitals 14 hours today. Started out at 700 at my hospital getting 2 units of blood,then drove 40miles to the gastroenterologist for her upper endo....The found 2 areas if Varices and did banding procedures on esophagus to stop any future hemorrage. A biopsy was done on the stomach also on an inflamed area. he put her on a liquid to help the varices heal for a month..Carafate...$216.00 for one month..........Whew...
This GE doc says that the Iron supplement that the hepatoligst started her on isnt gonna raise her hemaglobin an hematacrit. Does anyone have exp with any supplements or diets that will help the Anemia......We sure dont wanna keep needing transfusions........
Posted 12/13/2008 1:33 AM (GMT 0)

Windhover

I do not know of any supplement that will help the HCT.  If there is anything my husband would be taking it.  He started getting transfusions every 6 weeks then went to 3 weeks.  Now he can only make it three weeks if he has two transfusions one week apart.  They are goiing to do a scope next week to see if they can find anything.  Its not easy I'm telling you.  But if we can see a light at the end of the tunnel it makes it all work it.  That light being a transplant.  Just hang in there your journey is just beginning.

JoAnn

Posted 12/13/2008 5:50 AM (GMT 0)

Windhover, I'm so glad that your wife was finally able to be seen at UNC!  That's a start!  As to the hematocrit, etc., all I can tell you is that with this disease, something always seems to be out of whack.  It takes a lot of experimentation to see what will work...and transfusions are sometimes necessary, just as paracentesis is.  All part of the "liver game."

Hang in there!

Posted 12/13/2008 8:40 PM (GMT 0)
A good sign,
I fprgot to tell you all we did have a good thing happen last week....Weve been trying for disability since early summer. I friend said to write our congressman Walter B Jones. We did and last week his office called an said fax him the Dr's dictation saying we were reffered to UNC for a liver transplant.
We were told that he woluld deliver the report to the proper Judge and that our disability claim would be approved by Xmas..........If this is true its a godsend...
Posted 12/13/2008 8:43 PM (GMT 0)
Admemdum,

 Sad thing is   even  though we  made  the  Disability  happen  the  laywer  will still probbally  want  his  25 percent  even though  he never  got us  a hearing..........

 

Posted 12/14/2008 12:39 AM (GMT 0)

Windhover, you are right.  Unless you can "fire" the lawyer now, before anything has happened...but I imagine you signed a contract, so that might be tricky.  The SS Admin. takes that 25% for the lawyer off the top, out of your wife's lump payment check.  I can tell you that I did all the work of providing my lawyer with medical reports, including radiology reports from scans, etc.  Part of it, he never even forwarded to SS...which, I believe, is the reason it took me 2 years to be approved (they didn't have all the info.)  It was only when that lawyer was fired by his firm, and I got the one I had wanted in the first place (at the same law firm), that I got approved about a month later.

That was a good move, contacting your congressman.  I hope you will indeed get the approval before Christmas!  Once you get approved, the check comes quickly...sometimes even before the approval letter!

Posted 12/14/2008 1:42 AM (GMT 0)
Windhover, A family member of mine had something like that happen with Social Security. The lawyer was dragging his butt, so he started calling Social Security and getting everything in order but was told he still had to pay the attorney since he had signed the contract. I will be praying that yours comes in quickly. I know how frustrating that can be to wait for. My husbands took over two years.
Posted 12/15/2008 4:49 PM (GMT 0)

Windhover,

Once your wife gets SSI you will have to re-apply for medicaid.  (That's if you are using it.)   It used to be an automatic change that Medicaid benefits continued once you went on SSI, but in 1998 the law changed and now you must re apply.   I tell you this, because you may be charged for drs. visits, etc. and you won't realize that the Medicaid coverage has stopped.    My friend and I had to re apply at our local Social Services Dept.   They have the forms.   It wasn't much paperwork, but it HAD to be done!    Good luck to you. 

Joan

  

Posted 12/15/2008 8:06 PM (GMT 0)

Joan, he may have applied for SSD for his wife.  That is a bit different.  One has to wait 2 years from the time of application for Medicare to kick in.  Meanwhile, if she qualifies for Medicaid (or already has it), that can help with medical bills until Medicare starts.  If she applied for SSI, she will only qualify for Medicaid.  As to whether she would have to reapply, here in FL I don't think so.  When they take application for SSD, they also evaluate for SSI at the same time, and depending on income will give Medicaid benefits while still waiting for approval, as well as some cash...again depending on income.  Every state has different Medicaid policies, as Medicaid gets funding from both state and federal govt., whereas Medicare is a federal program.

Medicaid normally sends a letter when it's time to be reevaluated for Medicaid.  I don't qualify for regular Medicaid, but they do pay my Medicare premiums and premiums on my drug plan (Medicare Part D.)

Posted 12/18/2008 9:48 PM (GMT 0)
We are aware of all these delays in medicare medicaid........some suggested we get a divorce on paper as I make too much money to qualify.
Posted 12/18/2008 9:55 PM (GMT 0)
Now we add another Dr.......
UNC called today... they have an appointment set up with a Pulmanary Specialist....our hepatologist wants her evaluated for Pulmanary hypertension...... And the dr is in Chapel hill 250miles away..........more money....Also got a letter today setting us up for a colonoscopy in Jan.....were gonna be in deep debt very soon...........
Posted 12/19/2008 12:40 AM (GMT 0)
Windhover, read my reply to your other post today.  I had forgotten about the Medicaid.  I've known of couples divorcing or not marrying because the two incomes combined would be too much to qualify for help.

Posted 12/19/2008 4:28 AM (GMT 0)

Windover, We are not married for financial reasons. Doug gets SSD medicare and medicaid my insurance deductables would kill us too. I also know a couple that got divorced for the same reasons then remarried later, she lost her SSI but got to keep the insurance cause here they dont cancel you if you have a terminal illness. Sometimes you have to work the system.

Sue

Posted 12/19/2008 4:48 AM (GMT 0)

"Sometimes you have to work the system."

Ain't that the truth?  It's a shame, but necessary at times.

Posted 12/21/2008 7:18 AM (GMT 0)
IM SORRY FOR YOUR CONDITION. MY BOUGHT WITH INTERFERON FAILED. IM NOW DOIND MILK THISTLE AND OTHER THINGS/LIFE IS NOT OVER UNLESS YOU SAY IT IS. QUIT DOING THE DRUG S AND START DOWNING THE ANTIOXDENTS/IT WAR TIME.LETS KICK SOME BUTT. FIND A DR THAT WILL STAND WITH YOU. FIND A GOOD CHURCH THAT BELIVE JESUS /WHERE THE PEOPLE LOVE YOU AND LIFT YOU UP IN PRAYER AN USE WHAT YOU CAN TO STAY HEALTHY :)
Posted 12/21/2008 8:44 AM (GMT 0)
hi jeff,

  Ar  first  I  thought   you  were  a raving guy  full of amonia  build  up// Then  I see  ya  say  start downing  antioxidants..........I see  you  did  ya  research.......we  have  just  started a  nutrition supplement program  on our  own due  to my  research..BCAA supplement.... Branch Chain Amino Acids.........Studies  in  Europe  an USA  have  shown  that 14g a  day improves  all lft ......... for  those  who  dont  know BCAA  can  be  bought  in  any  health  food  store.........do  ya  own  research......I  beleieve  what  Ive  read  about  it.

Posted 12/21/2008 7:41 PM (GMT 0)
I totally agree about the antioxidants.  I get most of mine through fresh fruit and fresh veggies.  Most of my grocery money is spent on those.  I also drink green tea (there are some flavored varieties out now that are really good--I like Orange Spice) and spring water, as the water in this area has a VERY high content of minerals.

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