New here.....

[FLgirl0722]

Hi. I'm from the U.S.. Not xpat, just looking for ascites forums and came across BLT.

Just found out about my ascites a couple months ago. Got banded then they tried TIPS which failed. I have to get drained almost weekly and yield around 8-9 litres. I don't know what's next as have not seen doc yet. Apt in another 1 1/2 weeks. Asked for drain in meantime and tells me to go to hosp. I'm pretty sure that hosp almost killed me during the TIPS procedure. Afraid they would admit me. The other hosp does it outpatient but no mention of that from doc. His front desk girls are like hell hounds. Calls never returned.

I have my husband only for support. No immediate family left except for bro who disowned me. Nobody to talk to and hubby doesn't really get it. Don't get around well. I look like skeletor with full term triplets. I don't even like to get the mail. Last time I did every neighbor either drove by or emerged from their home.

I REALLY want to buy the farm right now. I don't feel this is a life. I need a diaper to walk across the room n hubby wants to go on a cruise. Leave the diapers home and leave room finding trail instead! No more favorite restaurants or recipes. I don't even know what I'm supposed to be eating except no salt and watch the water intake. I get kidney stones and used to watch how much water I could drink. I guess now i will get to watch stones form.

Wow this is long. Just needed to vent a little to peeps who might understand. Any thoughts or advice welcome.

[Str8jacket]

Sorry to hear what you are going through. How long have you been ill? How did you find out? The American Liver Foundation also has a forum with many people with liver disease, you may get some good responses there with US specific advice, you should be able to find it through Google.

I share your frustration with our medical system by the way--it's generally awful except for a lucky few.

As far as food, you can find cirrhosis diet guides online, including from the British Liver Trust. In short, your liver cannot store energy, so you should eat every couple of hours. No added sugar or salt. Mediterranean diet is the general guide--lots of fresh veg and fruit, plenty of protein (mainly plant based, lean meats like chicken breast, etc.). No processed meals. You will also want to snack right before bed, as the body cannot store enough energy to keep you going all night. If you don't keep your energy levels up, your muscles will waste away.

Advice I have seen in the states is to schedule a referral with a hepatologist ASAP if you aren't being seen by one. Primary care docs and even gastroenterologists are simply not qualified to treat advanced cirrhosis.

Aside from that, there are many folks here who know tons more about liver disease than I do, look around and reach out, you will find a lot of good info and support here.

[FLgirl0722 in reply to Str8jacket]

Thanks. I just found the site but no forums that I could see. I will look more for an American place. Ty

[Hidden]

Yes l feel for you. In the US you are definately treated as customers rather than patients. Thank goodness we have our amazing NHS taking care of us in the UK 💙💙💙

[Str8jacket in reply to Hidden]

It's usually worse than being a customer, who in traditional settings is always right.

In the states, if insured (critical point), we patients are often seen as cash cows to be poked, prodded, scanned, bled, and milked with endless tests and consults. Reimbursement from insurance companies is the business model, so doctors have every incentive to order procedures and tests as long as they are minimally justifiable. There is less financial incentive to try to immediately address the underlying cause of illness, or god forbid, prevent that revenue stream in the first place with high quality preventive care. There are many wonderful docs here, as everywhere, who care sincerely about each patient. But as a whole, the financial incentive structure for medical care providers is not aligned with patient outcomes. And that's just bizarre.

And if you don't have insurance, you wait until you're dying, then crawl to an ER (A&E) for whatever patches the on-duty doc feels may be appropriate.

[Katewaj]

So sorry things aren't going well. I'm from Wisconsin and know firsthand how hard ascites can be. For about 8 months I was getting drained every 2 weeks, a total of about 300lbs of fluid. Please don't give up!!! I was diagnosed about 2 1/2 years ago and just had my check up for which my labs were very close to normal and was told I can now look forward to a long normal life span. I too had wanted to give up but am glad I fought. Try to have positive thinking and believe in yourself! As far as your husband, I would tell him to take a cruise by himself. Lol. He needs to have more compassion for what you are going through.

[classicalgas]

Hi FLgirl0722

I see that you have had some excellent responses to your post and I cant elaborate on the advice given except to say , Hold on Girl. Things wont always be like this and you have so much to look forward to in the near future. It is very hard , I know , to stay positive when you are being assaulted by your body on all sides but as soon as you get this condition under control, and you will, you will come out on the other side of this a stronger person. This condition, with all of its different implications and complications tries to rob us of our dignity, self image and control but it doesnt define who we are. Sharing your experience on forums like this is the only way you will find kindred spirits who understand what you are living with and going through. Our families, even the best of them, cant really grasp the true implications of the day to day complexities of how this condition affects our bodys and our minds. With the best will in the world, they can only empathize to a point and as they are not specialists, they dont have all the answers either. They too have days where they are overwhelmed with worry and anxiety and perhaps wonder if life will ever go back to the way it used to be. They too get frustrated and feel helpless as they cant change things and make you better. I speak from my own experience here as I am living with my own partner (an American man) and we have been able to sit down together and discuss the changes that are happening. Sure, our life has changed and our original plans have been put on hold, but if you sit down and speak to each other , you can make a new plan for the future together which may or may not include cruises, sky diving and bungee jumping. The point is, nothing stays the same and things will get better so dont buy any farms just yet.

Best wishes and sending you a big virtual hug from Ireland

M

[FLgirl0722 in reply to classicalgas]

Thank you, loved the reply. I didn't think this was something that you brought under control. I thought it just ended you. You've given me a little hope.