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im not sure where to start.new to a forum could use all the help i can get.

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Posted 5/25/2013 9:30 AM (GMT 0)
I was diagnosed in 05 with hep c genotype 1 and cirrhoses. I was accepted on the tranplant list at mayo in rochester. I was on the list fot 3 yrs and lost my job and ins. I was dropped from the list. I could not afford any specialist but i have had on going ailments thst keep me in close with my family dr.last year i was prescribed an antibiotic for sore throat and upper respitory and rx gave me wrond med. Causing a mild stroke. Since then it has been one ailment after another.dr has run labs ammonia levels are high. I have a new job w/ins. Pre existing not covered til sept.. but fam Dr insists on appt w/Gastrointerologist. So that is set for july. New job is physically demanding and is draining me daily. Can due the lactolose and work. I have been suffering with so many different painful issues.i cant really think clear. I'm drained and tired.
Posted 5/25/2013 12:36 PM (GMT 0)
Welcome Betty,
I am really glad you have insurance with your new job. That is a positive, even though your pre-existing is not covered until Sept. I had a mild stroke in 2000. It resolved, other than a bit of hearing loss and some minor weakness on one side. Hang in there, others will be along to welcome you and offer more support. I am the caregiver for my husband. I hope you have supportive folks in your life. Take care, and again...welcome. themiz
Posted 5/25/2013 1:26 PM (GMT 0)
Thank you Themz, I do have a supportive family. I do not want them to be nursemaid for me. I have seen a few friend go through the hep c treatment. Not a pretty sight, plus Drs. think I should have transplant first. I am jumping ahead of myself though since I haven't seen a Gastrointerologist and I don't really know where I stand. Since last seen at Mayo I have quit drinking and quit smoking and have lost 40lbs. I have to break here. Neck.arm and hand hurting sorry.
Posted 5/25/2013 3:39 PM (GMT 0)
Betty,

Welcome to the forum. You are in a rough place. And with Hep C and Cirrhosis you may or may not be able to continue working.

My partner, Mike, was in your spot some years ago and eventually qualified for a transplant. He lost his insurance, lost his house, savings, etc. and eventually qualified for Medicaid. Medicaid paid for his transplant and his medical appointments along the way. He still cannot work after transplant, though he is feeling much better.

After transplant, those with liver disease caused by Hep C are not cured. The Hep C, a blood borne virus, just starts up on the new liver in most cases.

There is good information at the top of this forum in the Resources post. And there are many posts by long time members that have walked in your shoes.

The fog you talk about is quite typical and overwhelming fatigue is the disease moving forward.

I'm not sure, long term, you will be able to work. Look into SS Disability on the Net and see if you might qualify if you can't keep up with the work routine.

Best to you,

Mama Lama from Florida
--------------------------------------------------------------------------------
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Posted 5/25/2013 5:20 PM (GMT 0)
Betty, welcome to the forum. I also have hep C (diagnosed in '93) and had a transplant at Mayo FL 18 mos. ago. I've had some complications since then, and they keep delaying hep C treatment.

The dangerous thing about hep C is that it not only causes cirrhosis, but also hepatocellular carcinoma (HCC/liver cancer.) I had it twice, the 2nd time requiring transplant. I never did decompensate, thank goodness, so never had all the symptoms that others have had, though fatigue is ongoing and gets worse all the time. I was approved for SS Disability (based on work record) in 2005, after a 2-year wait. Since there is a 2-year wait for Medicare, I had already fulfilled that requirement and received Medicare at the time I was approved for SSD. This came right after diagnosis of the first HCC, so "someone" was looking out for me. That's when I went to Mayo. (I received SSD based on another medical problem.)

I found it strange that you were accepted on Mayo's waiting list if you were still drinking and smoking. Did I misunderstand? Or is it that you continued to be alcohol and nicotine free after you were removed from the list? Smart move!!

Also, I thought that the law had changed and that pre-existing conditions are no longer denied by insurance. Or is it that there is a waiting period?

I greatly admire you for working. I know I couldn't do it, even now, though I could certainly use some extra money. (The Moderators here are volunteers.) Try to hang in with it, but if you can't, I strongly suggest that you apply for Medicaid, even though Mayo does not accept it as primary insurance. They also don't accept HMOs, though there are some exceptions and some PPOs are accepted. You need to get some excellent care. Is the insurance that you expect to receive in Sept. accepted by Mayo? I would love to see you get back there. They have a short wait time for transplant, at least in FL, but I believe all of them combined have the shortest wait time in the country. All transplant centers in FL have shorter wait times than in other states (no helmet law.)

The wrong med that caused the stroke--was it prescribed by the doctor or an error at the pharmacy? Either way, I would sue. It changed your life and you lost income and insurance. If it was the doctor's fault, I would absolutely not see him/her again!

I hope you can clear up some of my questions.

All the best to you. My thoughts and prayers are with you, both as a human being and as a fellow hep C sufferer.

Hugs,
Connie
Posted 5/25/2013 6:56 PM (GMT 0)
Betty I live in MN, Mayo is bad for insurance around here. Are you north orsouth of Rochester.

I see doctors that from MN Gastro. Very good ones and have good payment options for non-insured. I can recommend one that has been awesome, and even though I do not have hep C that is what his speciality is.
Posted 5/25/2013 7:03 PM (GMT 0)
welcome to our forum Betty.. you are amazing!! Glad you found us. Sandia
Posted 5/25/2013 8:08 PM (GMT 0)
Wow! Gosh! That's a lot. Thank you! The strength in all of you its awesome to see and well needed. The best medicine I could get today. This is a bit difficult to do on my phone, but I'll give it my best. Yes I did the smoking cessation and alcohol abstanence while i was on the list. I had an alcohol relaps on one of my mayo visits, it wasn't pretty i was vomiting blood. Somehow manage to call 911. My doctors were not happy and put me in a hold on the list for a year until i proved i was serious, had to attend OP drug/alcohol dep. Program. The thing was that relaps was the best thing i could have done. I started doing all i needed to for me. Prior i was doing it for the Drs. for family,etc but in the back of my head i didn't want to quit. So i was back in an active status on the list until i lost my job. I don't know how your guy handled all he went through when he lost his. Wll i do know. It's definitely a "God thing". Lately its been hard to stay in that consciencness. I thought i would have no problem finding a job but w/unemp.rate as it was i was also finding that the job force wanted to hire young fresh out of college. Not the seasoned withjob experience. So i kept my Cobra for a lng as i could. And unemployment evenually ran out. Family and friends helped.I took all temp jobs i could. Finally took on a custodial position. In which iam at and very grateful for the job and benifits. I have not spoke to my emp.regarding my health issues. Last Nov. I came down with upper respiratory infection.i have allergies or sensitivities to most antibiotics, i went through steroid shot a dode pack and 4 diff. antibiotics which each created other issues and i still had to work. I am still dealing with a dandy case of thrush and ugly throat and tonsils. I am sure that if i could not show for work they would let me go. Advantage is that most days iwork eves and by myself. It is getting harder to keep to my self. I get dehydrated easily, i get over heated and have nose bleeds most nights. So far i have been able to get them to quit. The script that i received that caused the stroke was an error by the pharmacy. They will be paying medical bills not sure at this time of any more. I was very fortuate that i did not suffer with more than half of your questions but i need a short break i did. Yours was much more serious. And you hang in there. Are you always so strong? I know i haven't answered half your questions but i need a short break and i will try and get my computer up. I am really glad i have found all of you. I do so appreciate your gifts. Be back shortly. Thanx
Posted 5/25/2013 8:10 PM (GMT 0)
I am back. I am so technically challenged it is horrible. I put in one of my other posts that I could handle that lactolose and work. what I meant was that I could not take it and work. So my ammonia level is still high.

I had gone for a while from time off list that I was doing well and chose to ignore what was quietly going on inside me. I still want to do that but the truth is getting louder and louder. With the mild stroke of course tests and scans were done and it seemed that with each test or scan they would find something new, and with the physicality of this job. All of my arthritis and degeneration aches and pain have also gotten louder. I have also been newly diagnosed with severe carpal tunnel. I thought was a pinched nerve in my neck. I now have a list of conditions, diseases, pains, ailments, etc. that is so long its unbelievable. I just can't see at my age using all the cost and resources that it will take to extend my life for (how many years?) and in (what kind of condition?) and in (what quality?) I don't want to sound insensitive or ugly or depressed. I just keep asking myself this. Is it really worth it? I put it to my Dr. as I feel like an old car. You can put lots of money into fixing what is under the hood, but it is still only going to go a few more miles. A lot of you have been through it. Please tell me is all of the pain and all really worth it? I am tired! Sick and tired of being sick and tired. And I am only going on a few hours sleep since work last night. I think a little dinner and shut eye is needed right now.

Post Edited By Moderator (hep93) : 5/25/2013 6:49:31 PM (GMT-6)

Posted 5/26/2013 1:03 AM (GMT 0)
Betty, I can help you out with some of the computer stuff. I deleted what you repeated in your post and put the "I'm back" section in the post above...just added it on. Cut and paste is a wonderful tool.

First, I don't see how you are going to continue working much longer. Second, you need to take care of yourself, getting sufficient sleep and eating healthful meals. Third (or maybe it should be first!) something tells me you are not going to any AA meetings. You need to make it a priority. That will help with the emotional stuff.

I'm not strong. I just do what I have to do...the next thing, one day at a time. I have my moments when I'd like to just quit, but they don't last long. I'd like to live a little longer. Like you, I have a number of other issues, including artificial hips with 3 revisions, high BP (well controlled on med.), sleep problems, arthritis and osteoporosis, a knee that's going bad, a hole in my midriff at the moment and hooked up to a wound vac...the list goes on. Not to mention what I've gone through since TP. And I'm willing to bet that I'm older than you.

By the time I stopped working (and the last 6 years of it, I was able to work from home), I was down to 12 hours a week. I couldn't have made it if my aunt didn't dole out money from my inheritance to me a month at a time. At the time she died, I only had about $1600 left in the fund, but used most of it to move.

If you try for SSD and win, you will get back pay from the time you applied...or a 6-mo. wait, not sure about that...but I received $16,000. My lawyer got 25% of it off the top, before I got my 75%. I tell you this to let you know that if you have a family member who can help you out financially as a "loan," you can offer to pay them back when you get approved...as I'm certain you will be. Most people are initially turned down, but just appeal it. If they turn you down again, you might want to get a lawyer who will charge nothing until you are approved...and then it's legally set at 25%, no more.

Hugs,
Connie
Posted 5/26/2013 2:49 AM (GMT 0)
Dear Sweet Betty... OMG!! You are working and dealing with this!! alone?? wow... you are amazing. Don't be so hard on yourself. You have found a place where you can get answers and support. You would look at things differently if you weren't having to work so hard and deal with your health issues. Anyone in your situation would be wondering the same things that you are. You are young. You are valuable but you have to decided what you want in this life's journey and define how you want this to go. You also have the realities of your situation that will guide some of those decisions for you. My prayers are with you this night that you might find some rest.
Sandia
Posted 5/26/2013 3:04 AM (GMT 0)
Hi Betty,
A lot of what you are going to need is "wanna," as in I "wanna" live. I did the 2 part cocktail in 2004, was undetectable and 3 months after finishing the treatment had a cerebral hemorrhage. It wasn't so bad, was out of hospital and rehab in 2 weeks. Then, a seizure and another hemorrhage. This one almost killed me and the trauma trashed my liver. I then spent 4 years drinking lactulose, xifaxin, occasional trips to the local hospital and my pcp. My partner of 15 years decided she didn't want to have to nurse me, so asked me to move out. I always knew I'd be all right. If you can't think positively about what's to come, it probably won't. I refused to let any of this stuff get me down. You have to fight, no matter how bad things look. I had 9 years of "bad phone calls," and on July 22, 2009 I got the "call." There have been a few setbacks after the transplant, but in my case they were fairly minor. Every day when I wake up and see the sun, it's a great day.
Posted 5/26/2013 3:21 AM (GMT 0)
Thank you connie & sandia
Yes i just had a home cooked meal. Definitely one think i miss working my hours. I have just crawled into my comfy bed with clean sheets and a cat to cuddle with. You all have given me a lot to think about & to consider and to pray on. You all are in my prayers tonight that you always have the strength and the compassion and acceptance you have shown me today. May i be given that strength tomorrow that i may help one of you. May Gods will be done. Amen
Posted 5/26/2013 3:31 AM (GMT 0)
Betty, SO good to hear that you ate well and are getting into a comfy bed. Put those on your gratitude list. Those lists are great things...takes you out of the "doldrums." I'd suggest antidepressants on a short term basis, but I think you need rest above all. Hep C wipes us out. How you are continuing to work just amazes me.

You are a cat person, so you're okay in my book! I adopted a rescue cat in Aug. He lays with me in bed and sleeps during the day, but at night he's too frisky and I have to shut him out of the bedroom. He's very good about it. He is one spoiled cat and knows he has a good thing here.

I hope you don't have to work this weekend and can get some rest.

Hugs,
Connie
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