Bile duct cancer

As someone who has an immune system intent on making everything worse, this is just the latest. I don't have insurance, have applied for assistance but haven't anything yet approved. I can't afford surgery, and until I can get on the transplant list (which can't happen until I get SS disability and Medicaid)...I've had lots of the other symptoms associated with other autoimmune disorders I've managed to contract, iincluding this, and understand ascites, itching, jaundice, fevers, and too many other icky things to get into.

I'm just wondering if anyone has had this bile duct surgery...(from what I hear, it may cause more problems than it fixes). They need to do more testing to find out if the surgery would even work. Do I go into massive debt (well, that's not really an option, as they won't treat you unless you come up with some kind of payment) .

They only diagnosed the PSC a year ago, but from blood tests taken for the last few years due to the UC and other disorders, it most likely (according to the docs) has been present for more than 7 years.

I'm a little stressed now. It was hard enough to learn about the PSC diagnosis, but bile duct cancer? I think it has a fancy name, but I don't recall it at this point.

Once again, if anyone has any info on this, I would really appreciate it. Thanks.

Dear Waterleaf,

Most states have a high risk pool for those hard to insure. This has been mandated by Obamacare. In my state, Missouri, for instance: for a 50 year old high risk person, the premium was, a few years ago, a little over a thousand per month. This might get you on the list and hold you over until you could make the other arrangements.

It may also be possible to get on the transplant list in more than one state,with potentially different requirements.

Stay Healthy!


Cholangiocarcinoma is the fancy name for bile duct cancer.

I really hear you on the financial woes of this situation. If this helps at all, you can apply for Medicaid at any time and they have new programs now, some requiring a small monthly payment (as low as $25 or even zero dollars) if you qualify at certain levels of income. And that can come through fairly quickly. Certainly more quickly than the Social Security Disability which can take months. You need to act now for this diagnosis. Google Medicaid for your area and find an office and go there. You can also apply online, which is really helpful if you already don't feel well. I would recommend that you call and talk to someone as well, though.

I don't know that much about cholangiocarcinoma except that it's a dreaded diagnosis. Maybe someone else can fill you in on surgery details and followup treatment.

Best of luck to you, Waterleaf. My heart truly goes out to you and I'm supporting your search for financial assistance. I'd ask the doctors what their recommendation is timewise for this surgery and get a letter from them stating this. It could be helpful to you with Medicaid. -Danabee

P.S. Just read EAD3's comment and in Colorado they have a last-resort insurance if you're not coverable by other insurance cos. (Although with Obamacare and no pre-existing conditions, you may qualify for other insurances.) This is what I had to do when I needed to be on the transplant list following an internal bleed. It cost about $350 a month and somehow I was able to pull that off. With SSDI you get Medicare - 2 years AFTER the SSDI is effective. But you qualify for Medicaid during that waiting period. But if you're in financial trouble now, go ahead and go for the Medicaid now. You definitely do NOT need SSDI to be able to do that.

great post!

I’m sorry but I do not have any information for you. Simply sending good thoughts and prayers. Take care.

Thank you.

GloriaCaldas said:

I'm sorry but I do not have any information for you. Simply sending good thoughts and prayers. Take care.

i am sorry to hear about your struggles. i would be interested to hear what kind of lifestyle changes you have made to help with your autoimmune disorders.

I have tried diet changes; I could give you the whole list, but for me, nothing seemed to make a difference, so I just went back to eating the "regular healthy diet". I do take probiotics; have tried many other things, but as nothing seemed to make a difference, gave most of it up. After the first year or so after being diagnosed with UC and then Crohns, I was actually able to run a marathon (with high doses of predisone, got things under control for a bit, but never go that route...leads to more problems, and eventuallly doesn't work). Since then, hasn't been as great. I think that dealing with stress issues is important. Being able to hike, or take pictures, or things like that used to help, but I'm not able to do that at this point. I think that was an important thing for me at least to deal with all the rest of the stuff. I still try to take time each day to look at the beauty around me. Fall is a wonderful season, and with its this disease, one just has to look fot the best.

bubba29 said:

i am sorry to hear about your struggles. i would be interested to hear what kind of lifestyle changes you have made to help with your autoimmune disorders.

Dear Waterleaf, I hear your frustration. And I think it's the first time I've seen someone on a support list mention stress and how dealing with it is important. When I am awakened at 2 am and my thought is immediately about money, I know why I woke up. Stress. There are lots of ways to deal with it, and everybody has to find their own way. It takes energy and thought to figure out what is stressing you and then to address the issues. And find solutions. I think this is at the top of my list every day. Because I want to sleep, I want to feel better, and I know you want to feel better, and all of us do. But there's no mention in the public stream of things to address how to do this with illnesses like PSC and Crohns nipping at your heels constantly.

What kind of support system do you have? Family members, friends you can talk honestly and openly with? You may think you don't want to burden them, but a lot of times they are waiting for the cues from you as to what exactly they could do to help. I believe lots of people want to help, want to know what you're going through, but they are either feeling too helpless or embarrassed to just ask! Does pride keep you from asking for help? Or, do you actually have all the help you need?

I think Bubba makes a good focus on lifestyle changes. Are we all just adapting to lifestyle changes thrust upon us by diagnoses? Or are we actively choosing some change, however small, that can reduce stress just a little. You talk about enjoying natural beauty. Is there one tiny thing you can do to enhance that daily?

I support what you're going through, Waterleaf. I have terrible financial concerns weighing me down. But at least once a day I just put them to one side and try to forget about them for awhile. Just because I owe money doesn't mean I have to be thinking about it all the time. Nor losing sleep over it. If there is anything else I can do to support you, please let me know. Seriously. -Dana