I'm ANGRY... Really ANGRY... | Episode #49
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- Опубликовано: 1 янв 2024
- International Liver Disease & Cirrhosis Support
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Twitter Handle: @fortressfarms82#
angry #hangry #upset #tickedoff #healthinsurance #disability #ssdi #mentalhealth #cirrhosis #lawyer #amazon #packagedelivery #unfairness #confused #unfairness #usps #fedex #insurance
My son just died jan 1, from liver disease.
I cry everyday. I am devastated.
Best wishes ❤️
Hugs
My husband was on both xifaxan and lactose but couldn’t tolerate the lactose so the doctor switched it to another laxative which he tolerated better. The gastro worked with some specialty pharmacy to get his xifaxan and it was delivered via courier. He was only on it July and August since he died in August but he literally got a delivery that the pharmacy came and picked up unopened after he died when I called to cancel his prescription after his passing. Because it was so expensive and I was going to have to dispose of the left over meds he had. He also had HE and other major brain related damage from his cirrhosis. He also wasn’t obviously yellow except his color was odd the last few days of his life so jaundice was not a big clue to the extent of his illness prior to his first hospitalization (which was about 7 weeks before he died). Hang in there Nick. Your channel will do great. It’s a shame how difficult insurance companies and the government make it when you really need help.
Ain't that the truth! I'm sorry to hear about your late husband. It sounds like you are a great caregiver to him, especially during his last days. I just want to help people in my spot because I know how hard it is to even get someone to listen. Sending much love to you and I hope 2024 treats you well!
Man I hate that you’re going through this with SSI. I don’t know why they make it so dang complicated. Good to see your face. Keep pushing my friend!
Coconut oil is digestible without needing the liver to process it or the pancreas.
A blunt question but you have liver cirrhosis and how is it you never look yellow? My doctor points this out to me that I'm looking pale quite often when I have my monthly appointment.
I was pale and yellow for over a year. Biggest thing was getting my kidneys back and getting them to function. Changing my diet and stopping drinking immediately held as well. I've been very fortunate but I haven't gotten jaundice in the last year. It's always possible. I had a battle with encephalopathy just a couple of weeks ago because I was off of my normal liver meds for just a few days. It's a very delicate balance for sure.
wondering the same thing...
Nick genuinely looked like Homer Simpson. Terrifying.
My son turned yellow one month before he died. I was horrified and terrified.
Oh boy, America really rips off sick people. Here in Ireland all that would be free. I wish you well with your new youtube career xx
Thank you so much! You live in a beautiful country that I would love to visit. Maybe one day 😄
They sure do! I'm not a conspiracy theorist per se, but it sure makes you think they want to kill the sickest of people quicker to save $$$. It's always about the money...
Yes very lucky here in Ireland. Three week hospital stay with MRI scans chest x-rays several attempts at paracentesis. Every three months visits to GP for blood tests and update on the progress of the disease. Plus appointments with orthopaedic surgeons for arthritis of spine and hips. Free physiotherapy sessions for as long as needed and surgery will be free. This is available to me as I now have a medical card. I am very grateful for all the help I am receiving in Ireland I was diagnosed with end stage liver disease last February.
@@AnnetteHennessy
I Annette,
when, u refer to end stage do u mean ur on a transplant list. Reason I am wondering cuz i was was diagnosed in feb,2023. What stage? Im kind of confused. The dr. Told me to eat light foods in 2019, which I usually did and do. Now i have liver failure, lik God....
@@twinkle533 what was the cause of your liver problems
Being awarded / approved for SSD is very difficult for those who have terminal illnesses. There are very few illnesses that qualify. Kidney failure requires dialysis is an automatic qualifier with no wait. I applied but never got approved. Many attorneys will review a persons medical records and then turn down the case because they know if won’t qualify. It’s sad but the government doesn’t make it easy to get benefits. Additionally when you appeal it throws in some wicked twist that you down know about until you read some fine print.
But try!
End stage liver disease with history of HE and paracentesis for ascites is a likely qualifier.
Man. Sounds like a real poopy day hope you get things solved Nick. Take care 💚💚💚
Damn! If life/survival isn't hard enough!
I have heard if you get your doc to get ahold of the company that makes xifax you can get it at a lower cost. If your applying for disability id imagine youd qualify. I take it they dont have state insurance where you are?
FYI- It is virtually a given that your first application for SSD will be denied. They are cold as# motherf$&kers and do it in almost every case, hoping you’ll drop your claim. You will have better luck with an experienced disability attorney. They take attorneys a bit more serious than the average Joe (I am an attorney but retired from practice 6 years ago). I’m sorry you are being put through the ringer with this. Best of luck.
That medicine is 4.600 dlls here in cali… oh by the way your beard is crooked
HA HA HA!!! I guess I slept wrong. 🤣
Is there a form you can print from online? I am dealing with fighting what SSA is claiming was an overpayment to my daughter. I just got her back on SSI over the summer. She has Down Syndrome and had it when she was little,but cut off in 2009 when I went back to work full time. She is now an adult so I could reapply for her. She hasn't received any $$ for 14 or 15 years! Once approved in September then all of a sudden an overpayment. And they are taking almost $3000 from her. Their was an overpayment they claimed back on 2010 but I fought it and it was waived! So frustrating!
@fortressfarms82 Dude I've been living with cirrhosis for 18 years. Because of the cirrhosis I've had to have two surgeries for an umbilical hernia, a TIPS procedure (shunt in liver) and I've had a Meld score of up to 16. down to 13 now. Do you know what your ammonia level was when you had the case of HE? There are things you can do with diet to help your liver. Eat healthy foods, etc. Do you know what your MELD score is? By terminal illness are you talking about cirrhosis? It appears to me that your mental problems are different than HE but it could manifest itself in many ways. LACTULOSE is good for HE and Much cheaper than Xifaxan. Just my two cents. Best of luck.
Hello Ricktwofour. What does your usual liver-friendly diet look like? Do you take any supplements that have helped your liver cirrhosis? Best regards.
I eat a low-sodium diet, look at nutrition labels, avoid fast food at all costs, I don't eat pastries, I eat plenty of fresh greens and my meat is only poultry or seafood. No fried foods period. It takes some time to adjust to a healthy diet and I had to take it in steps. Pasta consists of lentil pasta or chickpea pasta for me. The most important thing for me though is low sodium. It helps keep fluid from building up in my legs, feet, and abdomen. The only supplements I take are vitamins, B-comples and C vitamins. A good thing to do is ask your doctor to see a dietician, and go over the diet that will benefit you the most. We are what we eat, and all fast food is loaded with sodium, when I eliminated fast food I started feeling so much better. Best regards@@AtheusMilitans
Hello, my meld score was 12. Specialists said im not to sick for a transplant.🤔 but on meds for ascites, beta blocker for blood clot. Always blood work, endoscopy 6 months i get confused, brain fog. Im on low sodium high protein diet, I should as dr about ammonia?
If you feel confused, yes ask your doctor about ammonia or other toxins. Unfortunately there's not a "test" they can do for hepatic encephalopathy, but ammonia level can be a good indicator. Also, at some point you may want to ask your doctor about a TIPS procedure. It is a bypass shunt that is placed in your liver to redirect blood flow, is done by a radiologist, they put you to sleep for it and it really helps with ascites and varices. It stopped my portal hypertension for the most part and I don't even have to have endoscopies any more. I used to have to have banding done on varices to keep them from bleeding. And no paracentisis any more. Before, they were draining 5+ litres of fluid from my abdomen each time. I had the TIPSs procedure about 2 years ago and it has really helped me. I think your MELD score has to be at least 15 to be listed for a transplant, but after listing it can go up or down and you stay on the list. Transplants are now done according to your sickness level, not according to time on the waiting list.I wish the best for you, and it looks like you are doing the right things.@@twinkle533
Thats a trillion, you have put me at ease. I will mention ur info to my GP.🙏