Depression, balance and exaustion issues

After taking the shots for Hep C for approxc. 3 -3 1.2 or 4 months....  I was nearly Jaundiced beyond compare, had potentially no potassium in my system, low white blood cell count and a problem with my bone marrow.  I could not do anything for myself.....   I couldn't feed myself, I couldn't even put on a buttonless nightie... I'd just spin it above my head....   couldn't find the arm holes....   I couldn't walk...  I had to crawl to the bathroom, or the Kitchren if I needed a drink....I kept a bucket or trash can by my bed for puking for 3-4 days after the shot (along with six pills a day everyday) ....    I finally recieved a stint in my liver (I think that's what it's called) I had no balance and was literally retarded for 2 years.....   at about a 5th grade mentality level with no motor skills.  At First I thought It had something to do with the anbestiesia.  NO ONE TOLD ME NOT TO EAT A LOT OF PROTEIN BECAUSE OF THE NITROGEN THAT WOULD GET INTO MY BRAIN.............  I researced and researched....   and finally discovered the truth about the nitrogen, etc...

I haven't been the same since 1999 or 2000.....   I'm more depressed than before... have no drive, no will, am exausted all the time... can't even stand at the sink and scrub a pan for more than 10 min. or so... Can't Vaccume for too long. Can't work, my sleep patterns are topsy turvey............    Am I the only one?

I feel lost.

I hear there is a cure in Canada and the UK... Does anyone know if this is true?  If so please contact me at ***@****
and I'd be so appreciative.

Thanks!!

[TheCreatress]

No but I am seriously concerned because I've never been so screwed up in my mind.  I had issues beore and depression for about 15 yrs....   I'm totally lost and don't know what to tell psychiatrists - even though I'm seeing them _ cuz- I don't feel I'll be belived.

[new-sojourn]

You sound like me 4 yrs ago.

What I did for 6 mos pre tx was to learn about my 'new diet' for liver failure.  Low protein, low fat, low salt, no junk, no artificial ingrediants, etc.  About a yr ago I cut out dairy b/c it converts to ammonia right away and ammonia is the cause of the encephalopathy-the retard thing.

Remember, if you are sick enuf for a stint, you have the probs of hep c, the probs of tx and the probs of a failing liver.

I found it hard to even google 'cirhosis' for 3 yrs b/c of the 'alcoholic' stigma attached to it.  B/ google cirhosis and nutrition and you will see even more restrictions.

I do a daily protein drink w/rice protein since all our limited protein shouldn't be animal.  On top of that, I'm also in the minority w/gout so my diet is evne more restricted than just a cirrhotic liver diet.  Lightly steaming veggies are best b/juicing is even better.  The goal is to get all the nutrients in the most easily digestible form w/the least work for the liver.

I use a 'joint juice' liquid-in my smoothie-and SAMe-lots and lots of SAMe.  For sleep I used melotine-a natural herbal product.  It can interfer w/sex drive b/my partner and I agreed I needed to rest soundly and deeply more than we needed to be screwing like bunnies.  (Surprisingly, he became much more huggy, the kisses were deeper and my love and admiration for him grew.)

As to mental images, I had a near death experience and decided to pass and come back and fight.  Now I don't suggest going to those extremes.  B/if you have the energy and money to consider Canada, then you have the energy to do what you have to do where you are.

[TheCreatress]

Baby....that is so encouraging.... cuz I was VERY, VERY NEAR DEATH also.   My Dr. kept telling me to go to the hosp. and get a potassuum injection and kept telling me I was dying in front of his eyes, but I didn't belive him.  I was yellower than cornbread and the hostpital collapsed my veins worse than they were.....  they collapsed them to flat pancakes.

I told my doctor's nurse/practictioner at MCV in Ricbmond that I was loosing all my hair and she didn't belive me about that!  I get so pissed when they don't listen.....   in my state... that's supposed to be the best place to go for this.... but it is a learning institute and they don't tell you alot about your condition.  They just do what they need to do for a minimum it seems and don't really monitor you....  

I wish I would've found this site sooner

[v eggie dip]

"I hear there is a cure in Canada and the UK... Does anyone know if this is true?"

I live in Canada and I am HCV active, there is the same therapy combo here as in the States...

In order to be on the Canadian Health Care System, if you are not a Canadian, you need to go through the immigration process...This is a very long and costly process and you need a Canadian citizen to sponsor you...They blood test you now during the immigration process for HIV/HCV so you would not pass the physical and be turned down...

Sorry you are having such horrible sx's...Stories like yours sure do make people like me not want to even consider threatment unless it is a life or death question...

Beth

[TheCreatress]

To tell the truth... I was working for the government and much more stable before this....   I can't even work now because of many factors.  It sucks.   Wish I never tried it.   but oh well
...

[cuteus]

I communicated with a couple of Canadians that treated up there. They do not get intervention with Procrit, so if you treat, you might need to fork the $ yourself. ONe of the folks only had 6 months to do tx, so she dragged on and deliberately skipped bloodwork so that she would not get pull off tx. Brain damage can occur from prolonged anemia in some people.

[dammitjanet]

I am so sorry to hear of your difficulties.  Honestly, it scares me to read about it.  Why did you not go to the hospital if your doctor told you to?  I am also in Richmond and have an appt at MCV in a couple of months.  (I'm not yet treating.)Could you tell me more about your treatment & experience there?  Thanks  DJ

[v eggie dip]

My husband is a government employee and we both share the benefit of a wonderful government drug plan coverage...If I tx I won't have to fork any CD$ out of pocket, not even for cell "boosters" thank God!!

[v eggie dip]

I hoped you wouldn't see that post...I immediately thought about you and your upcoming appoitnment...Remember, this is internet Janet...Teaching Hospitals seem to have the best and latest technology for the treatment of HCV....

[go-girl]

Most Canadians have what we call "extended medical" everything is covered in that case, I think Veggie has that coverage. Our other alternative is "Pharmacare" where they go by your income, in most cases after you have paid a small percentage at the beginning the rest is covered for that year.

[jmjm530]

Sorry about your bad experience. With your complex set of symptons and history, self-diagnosis is very tricky. I don't know much about nitrogen and the brain but a lot of us eat a protein rich diet -- both on and off treatment -- and don't have some of the ill effects you describe. Do you live near a large medical center where you can get a full medical workup including being seen by a hepatologist. I know you are probably fed up with the medical system by now, but sometimes you have to kiss a whole lot of frogs (doctors) before you find Mr. or Ms Prince. If it were me, I'd do some research as to who are the best and start puckering up. All the best with your health.

-- Jim

[cuteus]

that sounds like a terrible journey through hell for you. It sounds as if you became severely anemic during tx and did not get Procrit for it, did you?  It seems as if the oxygen deprivation damaged your nervous system and things might have been compounded by the interferon also.  A combination of factors made it possible for a permanent condition to have developed.  In the two yrs I have been reading here and other boards, I have not heard of many long term effects.
Have you seen an neurologist and an autoimmune disorders specialist?

[dammitjanet]

I believe that.  And I believe that from what I've read about my new doctor at MCV that he most certainly has more exprience and knowledge about treating HCV than my GI.  Also, as with any doctor, and as we have certainly seen here, you MUST be proactive with your healthcare!  DJ

[couldn't think of a nickname]

I read the comments about limiting protein intake, and I know that has always been recommended. My doctor says (and I quote) " patients with cirrhosis were always advised to decrease protein intake due to too much protein --ammonina synthesis-- and subsequent developing encephalopathic changes."

He said that in response to an abstract I sent him from the upcoming AASLD meeting that I thought he would find interesting on protein intake and cirrhotic patients. He found it interesting that in this new study, they actually recommended protein supplementation in the PM.

I can't cut and paste the abstract, but it is found on the AASLD web site. The title is "Nocturnal Nutritional Supplementation improves total protein status of patients with liver cirrhosis: results of a randomised controlled trial.
Abstract no. 65578
Category LO1:Public Policy ,Epidemiology, and Decision Anaylsis.

I don't know anything about this issue, I am just pointing out what I found. There are a ton of interesting abstracts on that web site, including controlled studies that show that herbs used in Chinese medicine work, data on Schering's new PI in patients, which looks to be the second best drug in development, and also data on VX-950 which still looks best in class.
I would encourage anyone interested to go to the web site and look around. All you have to do is register with an email address and create a password.

I am truly sorry about your severe problems. I hope there is a combination of something that can help you. Dr. Zhang practices traditional Chinese Medicine and does phone consultations. He is in New York. I wish I could think of something else to tell you that would help.

[v eggie dip]

I live in Ontario, and I believe extended care is for seniors...I am not familiar with it..We have OHIP here (ontario health insurance plan) which covers all medical, no up front costs and for meds like I said earlier, we are on a drug plan that will cover all meds...This plan will remain with us for the rest of our lives because it is part of the retirement plan my husband has...

[Micabo]

I live in British Columbia, Canada, finished treatment 8 months ago, successfully (geno1b).  The Pegintron was paid for but the Procrit was not.  (It is for every other disease but not for HepC!!!!!), I had to pay for it myself as I was extremely anemic and my doctor wanted to reduce/stop treatment.  It got me in the poorhouse almost, because I am self-employed and could not work.  I did the Procrit every two weeks instead of every week, so the ups and downs were horrible.

Thankfully, I am SVR but I am still writing the government and taking part in every possible action to make it better for other people.  I have health insurance but they did not pay for it either.  HepC people are second-class citizens here as compared to cancer people.  Also, you can only be treated if you have never had treatment before.  So, the people who fail or have to stop cannot do it again...

So, forget Canada, it's the same treatment and from what I read, it is more difficult financially.  A lot of people fail because they cannot afford Procrit and that is so unfair.

Good luck to you!

[v eggie dip]

I have never stated that there is good quality Health Care here, only that in my case the insurance we have for meds is excellent...Having something for free does not always mean it is good quality!!  I will still hold my position on the sub standard care here in comparison with the States...But I guess you can also have state of the art medical technology, and if you can't afford it you are no better off...

[cuteus]

lol! it was not too long ago you were posting about the substandard care in Canada, I did a double take on your post!
glad you are seeing some positives.

[v eggie dip]

I don't think you should label "Canada" as not paying for your meds...I live in Ontario and the cost of meds is or is not covered by indiviual drug plan coverage...Fortunatley I have excedllent drug coverage and it will pay for all meds, including cell boosters...People that do not have drug plans always have the option of seeking assistance through the pharmaceutical companies and I believe if you have the Procrit (or Canadian equivelant) administered through a Hospital instead of injecting yourself it will be covered under the Health Plan of the Province...I could be wrong on that one, but I don't think so...

Sorry you had to spend money on your health, that's not right!

Beth

[aroro]

ihave hepatitis c but iam healthy and my liver function are normal
iapplied for canada immigration under skill worker programe
iam waiting for my medical tests
do they conduct hepatitis c at the tests ? at their website they mention that they do tests for hiv and sephilis only is that true? should itell the doctor ihave hepatitis c or not?
will hepatitis c be acouse of refusal of my aplecation? pls help ireally need answers .