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Hello. New Member With Two Deadly Diseases

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IamTheArm78

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Joined
Feb 25, 2017
Messages
8
Hi, everyone. I'm age 39 & I have Wilson's disease, a rare genetic disease that can only rear its ugly head if both of your parents are carriers of the mutated ATP7B genes. The gene is inside every liver & works to expel excess copper from the body unless you have this disease, in which case the excess copper spreads throughout the body. I was diagnosed only a few years ago & began chelation treatment, but my liver didn't respond & now I have cirrhosis & need a transplant. Wilson's also affects my nervous & GI symptoms, eyes, kidneys, & brain.
Probably a long shot, but I'm wondering if there's anyone on this board who's in my shoes. I'm also up for talking to liver transplant candidates & recipients...or what the heck, anybody.
My support system is not huge, which is too bad since I try to help others when I can. Many people I know, some family even, have chastised, scolded, persecuted, misunderstood, deceived, shamed and basically have been treating me more & more like crap the sicker I become. People just do not understand Wilson's disease--I have copper in my nervous system & brain & it's harshly affected my short-term memory & gives me wicked mood swings. If I can manage a block or two I have to use my walker because if I don't I could get wrongly arrested for "public drunkenness," since many WD patients have balance issues.
Anyway, before I got this sick I was a filmmaker & a writer; after I fell ill I became a jewelry designer/maker. I also did philanthropic charity volunteering for the environment.
Hope you're all doing well!
 
I'm so sorry to hear about this. Whilst I haven't personally heard of anybody round here having this (though there may well be), I think that most of us can definitely relate to situations whereby family members and friends have not recognised/understood/displayed compassion about many various health ailments and/or life style choices. It took my parents/sister witnessing me heavily abusing benzos for a good few months before they actually believed that I had been chronically depressed, anxious and fatigued and that it was actually a very serious predicament, and not in anyway made up (I mean why the fuck would I do that?). People can just be really shitty like that.

Why are your family being so hateful towards you regarding this?
 
hope your ok and sorry to hear that too...this place is fine if you need to talk or advice ,all the best.
 
I can't believe you are treated harshly for having a disease that's out of your control. I'm an addict and I can wrap my head around the stigma associated with it, but your disease you literally had no say in. Man people can be shitty. I don't have Wilson's but my liver is over 3/4 scarred from hep c, which after many years of misery my insurance finally approved the treatment. I have been hep free for almost a year but still feel like shit so I can't even imagine the horror you have to live with. Honestly the only thing I know about Wilson's is what I've seen on house lol. But it certainly didn't look pleasant. Thoughts and prayers with you, keep fighting the good fight.
 
Im sorry to hear about the Wilsons. Is a partial liver donation from a matched relative possible?

Do you have a medical bracelet to help explain your condition?

People are arseholes. Most wouldnt know what Wilsons disease is.

A lot if people live with illness here. Some have moved on and check in every now and then.

I hope you find comfort here mate. Theres nothing like being in the company of decent people to feel better.
 
Tranced, thank you for your comment (and sorry my reply came so late, as I've been feeling physically awful lately). It's not all my family, but one cousin in particular who obviously had the problem who was so rude to me...my father, although it hurts more, I can understand because he has to take care of me & he's not so healthy, himself. Still, aside from a few other family members, no one has offered to stand up & help, and we have a large extended family.
I've actually had people who I thought were my friends for years turn on me for no good reason. I had to start a GFM page to raise cash to get down to Mayo Clinic in Jacksonville FL, & was rejected for reasons that my Primary doc & I found unethical. They treated me like a druggie & a criminal just because I legally had been using medicinal cannabis in my state. They created bullcrap, vague reasons for my rejection & then lied to my doctor by saying no, it was substance abuse. I'm taking only what im prescribed, and I had only found out about their cannabis rule a month before going. I was set to go & even put medicinal cannabis on my list of prescribed meds, so they knew, yet they decided to say nothing, make me go through the whole evaluation when they knew they weren't gonna accept me early on just to get the insurance $$, and made us waste $10,000 for normal expenses like lodging & food. It was incredibly disheartening.
At least my father finally believes me when I tell him those doctors at Newark UH are going to end up killing me.
 
Oxlong27, I heard there are two episodes about Wilson's on House...I saw the first one with the mother & son, where the mother was acting schizo but it was actually copper in her brain. It wasn't exactly realistic, because if she had that much copper in her brain for that long it's hard to believe she didn't develop liver disease. The crazy thing is, the Scrubs episode about it was more realistic, although the episode was based on The Princess Bride! The girl in that ep only had the hepatic aspect of WD, & not the neurological aspect, which happens, and she had been misdiagnosed or undiagnosed, which happens to us often. I was lucky enough to have a good neurologist who caught it. Started treatment & it helped with a couple of neuro issues, but it was too late for my liver.
 
Zephyr, that's why I'm here--to find decent people. And thank you.
Only one relative has offered besides my mother, who is willing to risk her own life with her heart disease to save mine, but I refuse to let her do it. I want her to see me transplanted & get better. I could never sacrifice my mother. The only other offer was from one of my many cousins, but her doctor won't allow it due to a health issue. I had a friend who asked his doctor, but his doc said no because he has high blood pressure.
All I get is family members saying they're praying for me, but is that REALLY productive? I did have some family members donate money towards that Mayo debacle, and I feel horrible about that.
We're going to Miami Transplant Institute this summer. I'm trying to find a way to have a jewelry party to raise extra money. A wonderful relative on my mother's side of the family is going to get me a free ticket to get there so that cuts our flight cost. One way if they accept me (and I have a good feeling they will--I have a friend who had a liver transplant there. She had liver cancer & needed to use marijuana. They didn't turn her away. She said they'll most likely latch onto me due to the Wilson's. She's coming with me on my first day. It's funny when you get to really know people on social media you've never met, yet THEY care! She's helped other patients, as well) because I'll have to stick around.
I don't have an ID bracelet yet...they can run expensive!
 
:) Hello Iam...Welcome, though I'm sorry for your suffering.

I'm not familiar with your disease, but I'm no stranger to suffering. Sometimes it helps just to share with folks who understand.

It touches my heart to read of people who help others in their time of need.
 
I just tested positive last year for help c. There's hope? Please give me info. Please.
 
Hi, Zephyr. A partial donor match from either a living or dead donor will cure me since the mutated gene is inside the liver. Only cure, unfortunately. Only one person in my entire huge family offered, but wasn't a match. Sadly, that's it. And you're right--most people actually have no clue what Wilson's is. Another cousin actually planned a one-woman intervention with me which I did not appreciate: she thought I could control my MELD score & said I have a negative attitude & that's why people don't want to be around me. Funny thing is, she sulked earlier that one of the bracelets I created for her (I create & make jewelry. Also a filmmaker & writer) broke, but I seal all the knots closing the stretch bracelets with krazy glue. As far as nobody wanting to be around me, my cousin who tried being my live donor invited me to dinner in my honor after my father & I returned from a transplant evaluation at Mayo Clinic in Jacksonville. The next week, another cousin invited me to dinner. If she didn't have five kids I know she would've tried to be my donor. So yeah--nobody wants to be around me? Two good friends of mine invited me for New Years (they're married with two great kids), but felt too sick. Super Bowl? Too sick. One of the kids' birthdays, & too sick.
I appreciate your warm welcome--so many people just don't know about or understand Wilson's disease.
I have a friend in Utah who recently received a liver transplant with a hep C compromised liver (she had NASH, a certain type of fatty liver disease). At first she went into rejection, but she's much better now & on Harvoni as well as her immunosuppressants. I'd take a compromised liver if it meant I didn't have to suffer through Wilson's disease so long. I can't even eat chocolate! Loaded with copper. You could probably sell me for...with my copper count? About $3000, I'd say. Of course, there are cuteness fees, which renders more money.?????
 
KimDid, you haven't heard of Harvoni, the cure for Hep C? Ask your doc about it--it's worked in over 95% of patients, who are now able to avoid transplantation. So yes! There is hope!??
 
Oxlong, Wilson's disease patients won one of the world's crappiest lotteries on Earth. It's different for each one, but many of us share the common thread concerning symptoms, such as the fact that some of us it affects only hepatically. The really "lucky" ones of us have hepatic plus neurological issues. I used to have head & hand tremors which, thank goodness, eventually went away with treatment (Syprine, a chelation med that gets the excess copper out of our bodies) & my neuropathy got a little better, but my short-term memory is shot & I get mood swings, insomnia, anxiety, balance issues, & maybe a couple more things I can't remember at the moment.
I'm very glad I'm finally getting out of that death trap (UMDNJ/Newark UH) & going to Mt. Sinai. My next appointment there is on the 26th & I'll be seeing the transplant team, and then they're beginning the evaluation THAT afternoon!
Tranced, to be honest, I really am not at all surprised at the way some people have been ignorant blabbermouths who say how much they love me, but if they have time to go on Caribbean cruises yet tell me constantly how much you think about & pray for me, what kind of help is that, really? How about she takes a little time to help my father, her brother, take care of me, since she knows he has health issues of his own? Same goes about any other family member (besides those two cousins) who have time but say they don't? Yup, that's love right there. It's ok. I have a couple of people I barely know who are willing to be my donor. The first one & I have the same blood type, so that's a plus.
You're so very right--People CAN be very shitty, and the fricking plethora of family members & friends who supposedly care about me or say they love me aren't as concerned about me as you'd think. I have a great uncle in CA who has actually helped me, and some of my cousins did donate on my GFM page. The money helped very much when my father & I went to Mayo in Jacksonville, FL, but because of a nasty transplant hepotologist & a jerk shrink they rejected me..all because I use medicinal marijuana legally in NJ. Plus, I abstained from it for two months already by the time the evaluation was over. They will accept transplant candidates with alcoholic cirrhosis and cirrhosis from illicit drug use & give them six months to abstain; Wilson's Disease is what gave me cirrhosis--I didn't give it to myself, as you pointed out. I was a social drinker--I went out to my favorite bar on Saturday nights because many friends hung there, sing karaoke, and had two or three beers or a couple glasses of red wine. When I was diagnosed with Wilson's, I stopped drinking. All I do is use weed legally statewide (and Mt. Sinai allows its use for transplant patients).
It really is hard dealing with my abdominal issues, but Mt. Sinai has one of the best GI departments in the country. I'm hoping they can figure out what's causing my GI issues & help me treat it. The team at UMDNJ/Newark is doing absolutely nothing.
 
I wish you best of luck in your journey, it sounds like you've had a rough patch. Hoping to hear back from you soon.
 
I would suggest you do what it takes to get your quest for a partial live donor out to as wide an audience as possible. Also submit your story to the local newspapers.

Sometimes strangers are kinder than family.

Partial liver donations are not that dangerous to be honest. Of course the surgery can be risky depending on what the liver looks like. Some have weirdly located hepatic arteries and valves so some might be hard to snip off. Most though are ok.

They just make a 3D Mould of the donor liver and wirk it out first before surgery.
 
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