No longer newcomer to HW.com Part 3

Great title Mitzi......thanks for the laugh. So glad you are a member.

Thoughts and prayers......

Hi Mitzi,
Hep C is a terminal disease - it's not a matter of if you need treatment - you do. Not only is it destroying your liver, you are in some degree contagious. Not as contagious as HIV - but all the same you are. Pegasus program has meetings in almost all the major cities in the US to help answer your questions. They are very good - if you listen to them. They work with the Dr.'s to do just that.
First see your primary care Dr. for a referral to see a specialist. You will get a million blood tests, and a biopsy. The specialist will then treat you as needed. The people at Pegasus have no other agenda other than to stop the spreading of Hep. They will help you as much as you will need - even help you find the funding, or direct you to your local hep. assn. contact, who can.
I have noticed that you are thinking like I do - I have to worry about everything before it happens. I am not sure that when I do this that I am thinking clearly because of the toxins that have built up in my system from the liver. It's a scary thing to be unsure of things that I knew to be what I thought to be truths. Relax, you will get what you need - when you need it. First things first.
Have the people at Social Security called you yet? One of the first things they will ask you is do you need food, or medical help.

Hi Mitzi,
Please call me Jim. I tried all the Jim's when I got here but all that applied were taken. Then I was thinking pin cushion - but duh, it too was taken.
For the time being if you need to see the Dr. the state is covering that for you - yes? You let your case worker know that you are applying for SSI, and she has a federal form for you to sign that allows you to be covered on a state bond that they have with the federal SSI program that allows the state to be reimbursed from the time that you file. This will cover your medications for the time lapse for Medicare and if you qualify for it the program will also carry you through to make sure that you have the proper medical needs taken care of. This will also let Medicare know that you need the treatments.
I also thought about that when I first saw the Dr. as I was told that they would look at my biopsy to decide if they were going to treat me. They told me this line about it being "a quality of life issue". I thought well - hells bells - who's quality of life are we talking about here? Mine - or the other people that I may infect? When I told the Pegasus instructor about this - she told me to find another Dr. that the one I had wasn't looking at anything but the bottom line, and even though I didn't want to believe that it could be true - it was. Such a nice guy too. She even gave me the name of another Dr. close by me to contact. It all worked out just fine. You see Mitzi we don't even realize that we are sick until AFTER the treatments are over most of the time. I hear that you feel so good that you are in shock as to how bad you were really doing before, and didn't realize it. I didn't feel bad - so I thought - when it was diagnosed that I have Hep C. My dermatologist caught it on a routine blood test that my liver counts were up. Just the tone in her voice told me to check out what it could be - even before I saw the primary care Dr., and when I went online to read up on liver counts I found out that there was only a couple things it could be. I had many of the symptoms listed with hep. I was told by my Dr. that it was just a "fatty" liver, and nothing to worry about. I contacted my skin Dr. and told her what was said, and she asked me to go get another blood test, and that she would order it tested for hep if I wanted. I did, and she was right - I went back to my primary care Dr. who told me to go home and wait for him to call me if he decided to treat me. Medicare came through the next week for me - and it released me from having to go to the primary care Dr. as directed by the state, and I was then allowed to pick my own primary care Dr. - I had my records transferred by the end of that week. My treatments start on July 14th, my wife wants me to push the date - but I have loose ends to wrap up that will take me right up to that date anyway. I am relieved to have it all set up to start. I feel confident that I will respond well to the new medication now available (which is why the Dr. wanted me to wait till the 14th), and even though I know that it will be a real test of my inner strength to finish - I will.

Dear Jim, much better than Dear Pinhead!

Wow! what a post. That was great. You answered a lot of questions for me and implemented more questions I have. It was good that your dermatologist had you tested. I often tell people that were in the hippie generation to get tested. Fortunately, in 1998 I was having too many symptoms and knew instinctively that something was wrong. The biggest symptom was no energy. I didn't feel like doing anything. It's not that I was neglectful Jim of my condition. I guess I will go ahead and share this with the forum. In 1999 I got arrested for Traf Pres Drugs. I received a thirteen year sentence. I did 11.5 years. I am home now. Needless to say, the medical care left a lot to be desired. You can't get treatment easily. As far as the doctor was concerned, I didn't warrant treatment. My viral load was 10 units. That's it. The next year it was 200 units, and the following year it was 30 units. Not 30,000, but 30. My ALT and ASTwas normal. The only bloodmarker that was low were my platelets at 159,000. Now they are 133,000. I just had a viral load done and haven't gotten the results yet. I am thankful that I remained healthy through that journey. And believe me, it was a journey. My life has taken a different direction, I have restored my life, my relationship with my entire family and I have a lot to live for. It is because of being MIA for ten years that I haven't had treatment yet. Now I am fearful that I may have cirrhosis, fibrosis, or worse, cancer. I also need to have my gall bladder taken out so I don't know if the elevated LFT's are because of this or the Hep C. I am getting ready just in case. As for Social Security, I hired an attorney to file for SSI. I haven't applied for Medicaid yet. I have been going through the county and getting vouchers for bloodwork and the Gastro. I live in Naples, Florida. This county does not have a Health Management Plan. Go figure. I just got Food Stamps and will apply for medicaid shortly. If you have any additional advice or suggestions, I would greatly appreciate the information. It is because of what happened I am the person I am today. I will be right behind you when they start treatment. It is good to have someone to brainstorm and network with. Thanks, Jim. Oh, and by the way. It does not bother me for people to know about my past. I am a walking testimony and strong advocate against drugs and how they destroy your life. Thanks
Hugs
Mitzi

Dear Jim,

Thanks for the heads up on Social Security. I will contact my attorney to see if they have filed my claim yet and get the ball rolling. I sure appreciate the info you have provided. It always helps to have input from someone who has traveled the same road. Every case is different but the guidelines are the same. Yes, I know what you mean about it being tough to go into the Social Security office. I have never depended on the government in the past. I have always had health insurance and find it difficult to ask for help. I am grateful I now have access to get treatment and see a competent doctor.
From what I have read and heard, the treatment is Chemo in nature. I went through that with my Mom who had Breast Cancer metastasized to Bone. Liver Disease is no joke and it is not something I have looked forward to experiencing. I will use the three words that got me through other rough times. ADJUST.........ACCEPT............OVERCOME. Another area I am confused about is diet. I have baby gallstones..........there are foods I should eat and foods I should not eat. With Hep C the same thing applies. There are conflicts between the two. Another area is Herbal Treatment. Lot's of warnings to be careful. Will Milk thistle improve the condition of my liver? In between all of this I am looking for a job which has proven difficult with a record. I am reluctant to start a job if offered one in the event I need treatment. Do you know if they consider treatment a valid reason to not work? It is good you have five weeks to get things in order before your treatment begins. I think I will keep a journal to keep track of everything. It is a good feeling being part of this forum. Connie is a wealth of information and voice of reason. 60 years ago we did not have the means to communicate this way. I do not take it for granted. It is a blessing, a source of tremendous support, and a comfort to all of us. I have been paying attention to a lot of blogs that advised not to go to Shands in Gainesville, Florida.........to go to Mayo Clinic. Do you have access to good clinic? I hope so. This is a work in progress. Just count me in being thrilled to have this forum to turn to along with common sense and a degree of intelligence. One question about filing for SSI...Did you take the paperwork after you had seen the doctor and he had ordered treatment or before? I am thinking I may need to wait to see the Gastro before asking for help with Hep Specialist. Thanks
Mitzi

Jim you are so absolutely right about the State bond... and I completely forgot about that... yes thats how Mike was covered Medicaid kicked in...
Mitzi... I have worked extensively in prison re-entry...the first thing I always say is.. its over done... lets get on about building a life... I work in housing and employment... over the past 10 years... after working at a temp agency... I saw people go back to prison in despair over not being able to find housing... I was appalled that we would pay 60000 dollars to house that person in prison and not provide even a room outside... I worked with people living under bridges... with addresses the same...and I decided to make a difference if I could...after five years of doing street advocacy... I started working with the local community action.... and continued until I moved... I just havent connected yet with the local community action...and the employment just kinda followed... I found that with Social Security... and I have worked with a few prisoners coming out... and with Social Security... I went in and advocated very strongly... it helped... to focus on the person... the other thing was to get medical records from the prison system also... I worked both ND and MN ... both have central locations for medical records which can then be sent to SS... having copies of the medical records already helps speed the process also...anyways...glad ur looking at getting treatment... u did ur time... now live a new life... move on forward... u got Hep C how u got Hep C... end of story... u r a movin forward person... u have the right to have a life... ur not in prison anymore so dont make ur own mental prison out here... coatin ur present and future with guilt... its over... welcome to ur new life... God dont make no trash and ur a pretty cool piece of wonder woman...ok.. Sandia...

Mitzi, I know of a place in Sebring.  In fact, I had a 3-yr. relationship with the male half...but don't want my name mentioned.  You may find some info here about job reentry or other info:  http://www.littlelambsinc.org/

Scroll down for lots of pics.

Hugs,

Connie

Well, I guess I am having Brain Fog this morning. Sandia, I emailed you thinking you sent me the link to LittleLamb. Sorry, Connie. Like my Mom use to say, "I have a good memory...it's just short."
I will be burning up the phone Monday to my attorney, Social Security. You are so right about the County. When I mentioned that I am having problems with gall bladder/liver and may need to file for SSI and medicaid, my case worker told me she doubted I would get medicaid. Glad I didn't listen.

I am very nervous about seeing the Gastro Specialist. I am fearful that going ten years without any treatment for Hep C has done grave damage. My Ultrasound done back in October of 2010 stated under FINDINGS: Liver echotexture is normal. No intrahepatic biliary ductal dilatation or mass. I thought if you have cirrhosis the finding would say: echotexture is rough. does anyone have input on this. It is the waiting and not knowing that makes me anxious. I also ponder on what came first, the chicken or the egg. Do I have gallstones because liver is bad, or are my enzymes elevated because of gallbladder. Don't have a clue. Glad I am seeing a doctor on June 9th.
Thanks Connie, Jim, and Sandia. You have given wonderful information, support, and advice. It's too late.....I've bonded.....y'all are adopted!!!
Hugs
mitzi22

Hey Connie,
No, I have never been diagnosed with Cirrhosis, Fibrosis. I had an ultrasound back in October when I went to the emergency room with a bad gallbladder attack. They did bloodwork, xray, and ultrasound. Was diagnosed with Cholelithiasis. Ultrasound revealed normal liver echotexture. Said I had baby gallstones. The ER dr never told me that my liver enzymes were high. And I told them I had Hep C. I didn't find out until I went to doctor last month that liver enzymes were high in October. They are coming down but on May 9th my Ast is 62(71 in October); My Alt is 115(257 in October; My GGT is 97(they did not test GGT in October). Prior to bloodwork in 10/2010, I had bloodwork in 11/2009, everything normal. I have never had a liver biopsy or fibroscan. The symptoms I am having now could be gallbladder related but I am suspicious: Dull pain in right side, sometimes through to the back; excessive burping, gas; sometimes light brown stools(normal now); some days excessive bowel movements, normal consistency. It's a case of the chicken or the egg I think. I will say that I am not happy with my platelet count of 133. It is the one bloodmarker that has decreased in the past ten years. It's funny, when I was thirty years old, I had a hyphema in my right eye 10 times. I had cataract in right eye and developed glaucoma. Had the surgery, can see fine now, but I remeber them telling me never to take aspirin. My blood was thin then. I didn't get diag. until 1998. Food for thought. Enough about me, how are you doing? You have had it rough in the past week. They should make Survivor shows from pre transplant patients. You would win!!! I am not one to try to diagnose myself....just speculating. Any thoughts, oh wise one?
Love and hugs
Mitzi22

****, Sandia. No....I am the real Sandi...."Will the real Sandi please stand up." Actually, you are Sandi #1, I am Sandi #2 or Sandi Junior!!!! That is why I started signing Mitzi22.
Hugs
Mitzi

Yeah, well okay, I'll be the old lady Sandi. But not the one with one of those red hats on from the Red Hat Club. I roll cool. No, second thought, I don't want to be the old lady Sandi. I'll stick to Mitzi. I concede, you can be #1, you've been here longer. I will answer email in a little while
Hugs
Mitzi

Thanks Connie. Could I be into ESLD? I don't know if you read my previous posts as to why I haven't gotten treatment yet. I got diagnosed in 1998. The symptoms I do have are abdominal pain, left and right side under ribs; tired; bruising very easily(Platelets 133); occasional dizziness; medium yellow urine. Symptoms I don't have are loss of appetitie; nausea; yellowing of eyes or skin; swelling of stomach or extremities;blood in stool or any vomiting. I am confused. The pain could be gall bladder but why on the left side which could be spleen or maybe pancreas. My right side is tender to the touch, right under ribs. I hope I am worrying for nothing. I've done a lot of reading, sometimes that can get you into trouble. I have read that liver disease can cause gallstones. Just call me clueless. I'm counting on you being right about it being gall bladder. What the doctors don't tell you is the increased risk for bowel cancer after having gall bladder removed; the added strain on the liver doing the work the gall bladder use to do. I'm hesitant to have it removed unless absolutely necessary. Penny for your thoughts?
Hugs
Mitzi