New to ESLD and scared

C_2017

I am the caregiver, not the liver patient. I have different problems, have a different support group.

BUT, I get horrible maigraines.

The otc stuff like Migraine X has aspirin and tylenol and caffeine. I am not recommending that product, rather pointing out the ingredient caffeine. I have an RX called Butalbutol...it has tylenol, a barbituate, and CAFFEINE. When I was looking for a remedy before my doc prescribed the above, I used a caffeinated beverage, like coke aput ice on my neck. I still use the ice back on the back of my neck. My headache is always the same...it starts in the back of my head and zooms out my right eye. Horrible. Also have a sleep mask to cut out the light. I find a quite place to lie in the darkness for about an hour and I'm fine.

The trick is to find your triggers...the usual for me..chocolate, red wine, aged cheese and nuts. Oh and prednasone...every darn time.

Feel better soon.

Headaches you get over, liver disease, not so easily.

Mama Lama

Some updates:

1. Headaches - My PCP said it is ok to take 1,000mg of Tylenol 2x/day or 500mg 4x/day. She also had some other advice like using ice or even biofeeeze and eye masks too. And she said to take the Tylenol early on so the headache doesn't get worse. But I think I'm still gonna try to avoid taking it if I don't have to.

2. It seem like my Hep is waiting for more results to make a total diagnosis other than cryptogenic Cirrhosis, but I did get another perspective from another Dr. about the various feedback I've gotten from different Drs. He said they could both be right, that my liver enzymes may be decreasing because I lost weight and I'm eating better. Or else they could be decreasing because there are not enough healthy liver cells to be inflamed. But he added that in either case I am doing the right things - diet, exercise, no alcohol, dealing with anxiety, and am in the care of great Drs that will be able to help me if I happen to be in the second group. And if I'm in the first group then my disease may just stop right here. He also said I'm doing the right things to protect my other organs which will make a transplant better on me if I do get to that point. And he also said that making these healthy choices will also pay off 25-30 years down the road. That gave me a lot of hope. Most Drs, this one included, seem baffled that I have this diagnosis at just age 40, but it does give me hope that they are going to keep a close watch on me and will know what to do to keep me healthy and alive.

I still have the anxious thoughts enter into my head but I just tell myself that I'll deal with whatever comes if and when it comes instead of thinking about what may or may not happen to me. And I'm going to be thankful each day for what I do have, not for what I don't.

Thanks for the help!

sounds great!!!
We have another member with cryptogenic liver disease. Has had cirrhosis for many years, and was on the transplant list.. she was taken off the list recently ,because her meld has remained stable. Losing weight also contributed.

Glad to hear your positive remarks about your drs, and your positive attitude.
keep it up, and stay in touch

Things have been going pretty well for me. I'm still working to control my anxiety, but no sleepless nights so that is huge progress and way better quality of life. My next Hep appointment is in Jan so I don't expect much or anything until then. My mind occasionally wanders to thoughts of how soon I will need a transplant and if a liver will be available at that time...I am still a work in progress and the positive stories on here are very helpful.

I do have sort of a practical question. Now that I am settling back into the routine of daily living, does anyone have advice on how to continue to eat healthy on business trips? I really want to keep eating right and I guess I can pack some foods, but I've found that 99% of restaurant food is unhealthy from a sodium and processing standpoint. Plus, how do I order healthy food at a steak restauaunt when I am dining with customers or suppliers or bankers? Do I ask for chicken without any seasoning and salad without cheese, croutons, or dressing? I know it's an odd question, but maybe someone has advice on how they make it work.

Thanks! I hope everyone is having a great Friday and getting ready for the weekend! My parents are coming down for the weekend and we are going to a mushroom festival!

Yup

They will prep if you ask.

However you want.

Salad asnd protien is how we do dinners.

And only fizzyvwater with fruit...in a wibe glass of course, less obvious you are not sharing in adult beverages.

I was asking my Hep Dr about the follow on the elevated copper found in my biopsy and a PA sent the biopsy report or at least a part of it. This one phrase stuck out to me.

mild macrovesicular steatosis (5%) without hepatocellular ballooning or prominent lobular inflammation

Is 5% good? I'm not sure exactly what this is saying but it looks like this means lower inflammation which is good. But not sure if it means 95% of my liver is good or not. Maybe it's 5% of the healthy cells or 5% of the total cells.

Any thoughts?

Thanks!

Thanks for the reply...and nice to hear good news about the low inflammation. I asked my Hep the same question and he has yet to respond.

Here is what one of his PAs wrote to me about the copper in my biopsy:

In regards to the copper in your biopsy, our pathologist here felt this was a "non-specific" finding, you can see their comment regarding this issue below:

"Rhodanine stain for copper shows rare periportal hepatocytes with positive
intracytoplasmic granules, which is likely a non-specific finding
especially in the setting of cirrhosis."

My anxiety has been a bit high lately.

I guess it's just hard for me to trust the Drs because of all the bad info I received in the past about my fatty liver not being a big deal and not even doing a biopsy on me 4 years ago when my enzymes were high and my platelets were low but my ultrasound only showed fatty liver. Now they tell me that you cannot always see Cirrhosis on an ultrasound.

I've gotten emails from PAs but nothing from my Hep. I doubt I will hear from him until my next appointment in January.

I'm still confused over how bad I am. MELD 10 seems pretty good I think. Also class A is good. Plus no ascites or varicies and a fibroscan of 14 (I think). However, platelets of 44 seem crazy low and not sure if low enzymes are good or bad.

Plus I'm hearing that liver transplants are really hard to get and that the people that get them are basically in hospice on their final days. Is this true? Is it that hard to get a transplant?

Plus I'm not sure how to prepare my family for this. I don't know anything about how much my care is going to cost or how or when to file for disability. Is there someone hat can help with that stuff?

On the good side, I'm still eating very well. I'm down to 198 pounds and size 34 pants now. My arms and legs look so thin. I guess I had fat there too making them look bigger. They look so thin that my wife thinks I look unhealthy. But I'm still technically overweight at 198 pounds so I still need to lose some weight.

That's good info and advice. Thank you. I have an annual physical with PCP on Oct 9, MRI on Nov 3, and next Hep appointment on Jan 29. I guess I have 4 months until I can ask my Hep those questions but I will certainly ask him at that time. I've asked those questions over email but never got a response. I only get responses to questions I have asked about what foods I can and cannot eat.

Good advice!!! Limiting meat will lower your protein and help food digestion. Have they discussed salt restriction?

The spleen is usually enlarged when platelets are low.. my hep dr. Used to say, the spleen eats platelets. Try googling spleen and low platelets.
You have a ultrasound coming up...How often they check your platalets?
Well let us know

Most with liver disease have enlarged speen and low platelets...it is part of the disease.

One Google search explained it this way:

Splenomegaly. Portal hypertension may cause the spleen to enlarge and retain white blood cells and platelets, reducing the numbers of these cells and platelets in the blood. A low platelet count may be the first evidence that a person has developed cirrhosis.

My experience with protein and liver disease

A PA from my Heps office emailed me that my platelettes and MELD will be checked every 6 months.

No worries. Humor is good. My emotions are pretty much 2 steps forward and 1 step back right now. I get to a good place emotionally but then any negative info has me spiraling to the worst thing that could possibly happen to me. I know this is going to take time to get used to. And I also understand that I likely have a decent amount of time left too. I just need to keep reminding myself.