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hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/9/2008 8:28 PM (GMT -7)   
Thanks for the info, I drank socially but stopped when diagnosed in 2005, I have changed diet alot, & try to excersise I was a very active person(rollerbladeed, played hockey, golf) but now not much on anything, I also have 2 herniated discs in back that limit movement as well it is very frustrating as I am only 43 & feel 83 some days. I had real hard time with treatment back in 06 & 07, but now feel worse that when was on treatment??? I lost job because calling in sick to much & have not worked or been able to work, have applied for disability still waiting for hearing.. I just take 1 day at a time, having hard time trusting Dr's this is my 3rd Gastro Dr. he seems to be better than others. 1st Dr told me my pain in my side was all in my head!!! I walked out that day & never went back to him. anyway thanks for support god bless.....

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/9/2008 8:39 PM (GMT -7)   
Hello Hockeygal and welcome to HealingWell.
Hope you get your disability. If possible when you are able to, get a referral to a Hepatologist. They are the experts on the liver and it's diseases and the treatments and diets.

Have a good evening...........thoughts and prayers..........

smurf
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.


hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/9/2008 8:51 PM (GMT -7)   
Thank you ,  I was referred to a hepatologist from my gastro Dr but only to monitor treatment, which now cannot do due to cobra insurance is going to stop. should I see both? my Gastro Dr only deals with Hep c patients, he seems to be pretty good. My family having hard time dealing with this, due to I was always very active and sometimes they dont help by telling me to get up & get moving when I just cant some days it stresses me out! thanks for the thoughts & prayers I am glad I found this forum..

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2008 9:07 PM (GMT -7)   

Hockey Gal, I don't think it's necessary to see both a GI doc and a hepatologist.  If your GI doc only deals with hep C, that's a big plus.  I hear you on the "used to be active, now not up to doing much."  People just did not understand when I went from working full time to part time (and eventually going on SSD.)  It was necessary for me to take afternoon naps, and I had one friend who actually laughed at me.  That truly offended me and I let her know it wasn't funny--that it was a result of hep C.  Needless to say, some friends drifted away, as I could not keep up with them.  I was very active, also, prior to this disease.

I will tell you that it took 2 years for me to get approved for SSD.  And it wasn't a result of liver cancer, as that had not yet been diagnosed, nor was it on hep C alone.  It was basically because I had bilateral hip replacements with two revisions on the left.  I also had some depression.  The fact that you have herniated disks, in addition to hep C, will go in your favor.  If you are also on antidepressants or have any other mental or emotional illness, that will also be in your favor.  Expect to get turned down the first time.  At that point, I recommend getting a good lawyer.

Hugs,

Connie


hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 7:58 AM (GMT -7)   

Connie, Finally another person who deaing with someone not understanding & making u feel like your lazy!!... it is not a friend but my only sister(younger) she thinks that I have given up & have no ambition anymore. I am not speaking to her & havent for about 2 months.. I miss her & my neice but I cant handle the stress she makes me feel right now. I think she is in denial that something is really wrong due to I was the one who kept on top of things & kept family on their toes. now I am taking it easy & trying to get better. I had to move in with mom due to job issue, its working out ok she is alone when my step dad dies in 2006 of lung cancer & cirrosis. I just pray she(sis) will understand and see that all I want and need from her is to be my sister.. anyway enough of that. I was denied 1st & 2nd time now on hearing level, I have a company called Allsup helping me with case, I applied in 8/07, they are great, doing all the paperwork etc. I have a ton of medical records & also info from mental drs as well I have been told by most of Dr's I am depressed as well I was on Lexapro but had to ween off due to cant pay for & did not like effects of meds.. I am doing pretty good without, my kids & grandchild keep me going & I need to be here for them. I thank you for the input & thanks for listening.. god bless

      Leslie


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 9/10/2008 10:49 AM (GMT -7)   
Dear Hockeygal,

I wouldn't be able to deal with my depression without Lexapro. I also take Xanax for panic attacks & the ocassional Ambien as I'm worthless without rest. I have had Hep C for 9 years and done treatment twice unsuccessfully. My intent is not to push drugs on you - especially if you don't like the side effects, however, if there is any way you can help to pay for these drugs (Montel program?) I would suggest you give them another try. In addition to batttling Hep C you don't need to also battle depression and anxiety. For me its vital I keep up my "spirits" and support group.

Just my $ .02 worth.

Best, Cary

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/10/2008 10:59 AM (GMT -7)   
Leslie

Just wanted to welcome you to the forum. It is a really wonderful to talk to others that are experiencing the same thing that you are and truly understand how you feel. Good Luck on getting your disablity. I have just started that frustrating process and undrstand that "hurry up and wait" attitude that seems to happen in that red tape system.

Lucy

hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 1:20 PM (GMT -7)   

Lucy& Cary, thanks for the imput. yes it is good to talk to others who are going thru same things. I cant tell you how much I appreciate it.  this has taught me to be patient and that every day is a blessing & that we will all be ok. I have had alot of obstacles thru my 43yrs of life & got thru all of them but this one is the scariest, just knowing a virus is destroying by body.. sometimes I wish I had never found out, but I did so I am dealing with it I just wish my family could be more understanding.. I try to educate them so they can but they dont want to hear it ( what stage 3 is, why so fatigued, hurt all over, sick etc) I think they are afraid to accept it, deal with & move on.. I now am focusing on spending time with my kids and grandson they are my life, dont have many friends but thank you for listening... Is it obsessing about it to do research on disease? that is one of things my Sis has said to me.I dont feel it is I just want to be educated & 1 step ahead..

Leslie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/10/2008 3:19 PM (GMT -7)   

Leslie, your sister sounds like she is in denial that you have a chronic condition.  It is necessary for you to learn all you can about the disease.  Knowledge is power.  How can you fight a disease you know nothing about?  I hope in time she will be willing to listen to you and to learn more about this disease.  You are not "obsessing."  You are learning, and you also need support from those of us going through the same thing.  I do suggest you stick to reputable sites, such as this one, and the American Liver Foundation, etc.  Mayo and other hospitals also have good info on hep C on their web sites.

Leslie, I got approved for SSD just before it was going to a hearing.  My lawyer said they often do that.  It's good that you have a lot of medical records.

I also wanted to mention that my b.f. of 13 years broke up with me last Dec., just prior to my first hernia repair.  I think it all became too much for him.  We are still good friends, but don't have the relationship we once did.  This disease robs us of relationships, jobs, and an active life.

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/10/2008 3:28 PM (GMT -7)   
Hi Leslie, I agree with Connie. Wanting knowledge is never obsessing. When I learned about my husband's cirrhosis, I immediately started researching it. That was 2 years ago, and I still research it when I have the time. Learning about the disease has only given me the strength to deal with the problems that come along with it.
Butterflythree
 
There is always hope!


hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/10/2008 7:36 PM (GMT -7)   

Connie I am sorry about your b.f. I have not have serious relationship for a while I have been divorced since 98 & had boyfriend in 2000 but he decided to go back to wife... but since I was diagnosed in 2005 I have been afraid to get into a relationship because of hep c I am the type of person that goes right to the truth & would probably tell them on the 1st date so its just easier not to. & really I am not in any hurry to get with someone I would not want to put all my issues on someone else & make them feel like they have to take care of me, after divorce I am more independent than I have ever been. I know some day will happen but not right now.

butterflythree thanks for the reasurance of doing research I am continuing that & I have my mom who is very supportive & helping me alot, she is learning too.

Connie thats great about ssd, my atty rep told me that I may get approved b4 a hearing, they send all my info to judge & sometimes get approval without hearing should know in about 6 to 8 mo is what she said so just a waiting game,,,,, as Joyce Meyer always says "Keep on Keepin on"

My favorite one is "I may not be where I want to be but Thank God I am not where I used to be"

thanks for support

Leslie


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/13/2008 9:40 PM (GMT -7)   
Leslie,

Hang in there! I know it is hard to being able to do the things you used to because of this dreaded disease!! My hubby has Hep C and cirrhosis and it has been so hard for him to not do all the things he used to . On the SS thing....keep appealing and re-applying. We were denied 3 times before he finally got accepted and got medicaid (for the insurance). It is such a battle trying to get the SS, I guess they figure if you are willing to fight for it, then you really need it...HA HA!! I know here in TX it was quite a long time to get it. He was diagnosed in 2004 and we finally got the SSI in 11/2007.....hang in there, girl!!

Mary (Mer)

hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/15/2008 8:00 AM (GMT -7)   

Thanks Mary I applied in 8/07 & now on hearing level I am company called Allsup heliping me. they do all the paperwork. ? once your husband got approved did he automatically get medicare/medicaide? on the SS web site it states that you have to be on disability for 2 yrs b4 getting? I am 43yrs old does that matter?

Leslie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2008 2:34 PM (GMT -7)   

Leslie, they consider the two years to be from the date you first applied for SSD.  In my case, Medicare kicked in right away, as they took two years to finally approve my claim.  I don't believe your age matters.  You may be able to get Medicaid in the interim and/or in addition to Medicare, if your income is low enough.  Medicaid pays my Medicare Part B premium and my drug plan premium, which is a big help.

Hugs,

Connie



shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 9/15/2008 2:56 PM (GMT -7)   
Leslie, Welcome to an awesome site! You know I got my S/O medicaid before he got approved for SSD and some states have programs that allow your cobra to continue and the state pays the premiums. It takes alot of calls and research also some Drug companies will give you your meds for free or very low cost till you get things worked out. A social worker can sometimes be your best friend....... so hang in there and keep asking and learning and pushing!
Sue
When I started counting my blessings my whole world turned around.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/15/2008 7:04 PM (GMT -7)   
Leslie,

When my hubby got approved for medicaid, it was immediate that he started getting that benefit. They did not back date it for him, but from the date he got approved, it was there for him to use. He is also in his 40's. In TX we would not be eligible for medicare, just medicaid....but it has helped tremendously. Also, shadowghost is right.....get in touch with a social worker at the hospital you treat at most of the time, because they have all kinds of information at their fingertips. Most drug companies have a patient assistance program and we have been on the receiving end of that from time to time as well......hang in there!!

hockeygal
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/15/2008 7:54 PM (GMT -7)   

Thanks for all the good info. I have sent a letter to my Cobra insurance asking for extention since runs out 1/09 & also included letter from dr stating how important treatment is & need to do for full year but only have 5 mo of insurance so we shall see.. today i met a gal from a support group locally, awsome gal!! she has been thru alot of treatment & helped me a great deal , she also stated may be able to get meds for little or no costs & gave me info but I need to have med ins to be monitored by Dr so I pray will work out due to I have no income & family does not have means to pay for expensive medical care, I will check info state aid etc. I have faith will work out. we had chinese food tonight & fortune cookie said my image will inspire others.. that tells me I am to get more involved with fighting this disease & help others, so having this illness is a curse but also a blessing to help with what I canVIEW IMAGE.. I pray for each & everyone out there fighting this uphill battle  god bless

LeslieVIEW IMAGE


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2008 9:24 PM (GMT -7)   

Mer, why was your hubby not eligible for Medicare?  Age?  I didn't realize that Medicare has state guidelines.  I know that Medicaid does and that, if eligible, it will kick in right away.  I didn't get it because there was no gap between the time I was approved and when I got Medicare.  However, as I said, they do pay my premiums. 

You are right, all pharmaceutical companies have what is called "indigent drug programs."  Your doctor would need to fill out the specific drug manufacturer's form, or write a letter and enclose a prescription for what you need.  Basically, it says that the particular drug is medically necessary, but that you are unable to afford it.  When I worked in a doctor's office, I wrote these letters for the doc to sign.  Some companies provide coupons that you present at the drug store.  Other companies will send a 3-month supply to your doctor's office, where you can pick it up.  Here's a link to more info:

http://www.top5plus5.com/Indigent%20Drug%20Programs.html

Hugs,

Connie


Post Edited (hep93) : 9/15/2008 10:27:48 PM (GMT-6)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/16/2008 5:58 PM (GMT -7)   
Mer, Could it be possible that you are confusing Medicare with Medicaid? Medicare is a federal program that is paid in by the employee(your husband) and his employer while he was able to work. The employee pays in 1.45 percent of their wages and the employer has to match it. Medicaid is a program that is run by each state for low income, disabled persons, pregnant women and children. If a person is disabled they are entitled to Medicare two years after the person is determined disabled. Since it took three years for my husband to be approved for Social Security they back dated his Medicare one year.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2008 9:21 PM (GMT -7)   

Butterfly, you are correct about Medicare except that it's from the date he applied, not from the date approved, assuming one is approved, of course.  As you said, that's why you got it retroactively for the previous year, since it took them 3 years to approve.

My ex b.f. got approved for SSD within 9 mos., so he had to wait for over a year for Medicare to kick in.  During the time he was w/o insurance, he got his care free through a teaching hospital.

Hugs,

Connie


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/17/2008 8:55 PM (GMT -7)   
We have medicaid, not Medicare.....they like to do things differently here in TX.....basically, we were not approved for SSI Disability benefits, because he had not paid enough into it in the last 5 years, so we applied for SSI (the one based on lowerr income). In TX, you are able to "buy down" based on # of people in household, total income, expenses, etc.....we were approved on that basis and with that approval came the medicaid based on him being disabled, medically needy, etc. He is only 47 and not eligible for medicare....just the medicaid. It is all so very confusing, but to sum it up, I am SOOOOO glad we finally got approved!!! It was quite a process! And, the end result is that we were accepted into the transplant program, his meds are covered and not limited to 3 per month, etc.....truly a blessing!!
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