Hi everyone, hope you are all well. I am feeling a little hopeless today and maybe that's normal. For you that aren't new to this, how do you cope? How do you keep your attitude up? I have felt worse since my consult. My gastro made this sound like I have no way to monitor, there's no sumptoms just do what you can and try to keep quality of life going. I feel like a time bomb, I know right now I have a fully functioning liver but how do I know the injury has stopped? I read, I hear success stories but there's just something about your professional not sounding positive that spins your head. I'm sure most of you have gone through similar feelings, how have you learned to cope? Does time make it easier? Again, I am so thankful I found this place, I know of nobody going through this in my life that understands. I know people with illnesses but they also go in periodically, get tested and walk out knowing how they are doing in most cases. Again thank you, I am so appreciative.
Feeling down today: Hi everyone, hope... - Living with Fatty...
Feeling down today
They don't make it easy and there are no perfect tests, but I've monitored my status over the years looking at the totality of a variety of tests over time. The trends in routine blood tests are useful. Graph them over the years. I calculate Fib-4, I look for chances to have FibroScan tests (quite a few docs are doing occasional free ones), I volunteer for trials as I get tested and learn things even though I'm likely to be rejected. I use LIVERFASt from time to time to track broad measures. None of these are ideal but all provide some information. Weight loss is key and that will lower blood pressure which you can monitor. There are quite a few things one can do but the docs won't be proactive about it so if monitoring is important to you, it is your job to seek it and get educated. Action has a way of defeating despair.
Thank you for publicly expressing what so many of us feel. I also find it hard to live each day especially when thoughts about my liver take up some much of my time, I really have to reach deep and fortunately the antics of my grandkids (two under the age of 8) provide a distraction. My spouse is not helpful which forces me to keep my thoughts to myself. As for doctors, it seems that they are just waiting for you to become severely ill before they will have a conversation with you. I had a hepatologist tell me, “you live until you die.” That wasn’t very encouraging. I live in the U.S. and I’m also Black which adds additional pressure to get the medical community to provide quality care. When I was diagnosed with NASH, I was told the problem was “too much energy”, to drink coffee, and lose weight. Now, I’m told by the same doctor, “that doesn’t work for everybody.” With all that negativity, I still do what I can. Just came back from a three mile walk on a rare February sun shiny day,
Hi LieL, thank you for responding. We need each other through this that's for sure. Wayne gave some good ideas about monitoring. My gastro pretty much said the same thing, we all die of something. How profound! My primary (a woman) was much more encouraging. She said she has seen several of her patients live long lives with this and die of something altogether different. She held my hand and said you will get through this with our help and you will have a long life. I'm sorry about your husband not having your back, they just can't feel empathy. I am not married but have had a roommate for years, surprisingly he is trying to be supportive. I hate going to bed at night just to wake up to more BUT I wanna live too!! I am trying to get my mind to where I can only do my very best and that has to be enough. Plus, I need to be able to control my thoughts but as you indicated, that is so hard, thank God you have the little ones. I will be glad when Michigan weather breaks, get outside, I ride my stationary bike in my bedroom....not very uplifting lol..need some sun. Deb
Deb, I did have a Gastro to tell me that any lifestyle modifications you do won’t be reflected in the liver for at least six months. So don’t be so hard if you don’t see immediate changes.
On the other hand, I’ve also had a gastro to tell me “go live your life, you worry too much. You won’t need a transplant for another 15 years.” I don’t think that was encouraging. I believe my liver problems are associated with metabolic disease since I’ve had a total thyroidectomy.
My liver was pretty inflamed and if it still is I would think is not good but if it decreases that would be a good thing. Maybe the ultrasound in May will show that but he acted like they are only looking for cancer signs. I agree his transplant comment was gruff but then again 15 years is good but I hate that thought too. My best friend has blood cancer, her future could be rocky but she goes for testing and they know where she stands. I wish they would at least discover that type of testing for us but like Wayne said, we do have some tools we have to do it ourselves though.
Hi Deb, I can relate to your post as well. I am 67 F3/F4 on Fibrotest and F3 on biopsy. My hepatologist at first said at worst I have 10-15 years...who says that even before the biopsy was done?! By the time I had the biopsy I had lost 15 lbs and ended up with an F3 even though the hepatologist thought I had cirrhosis. At first I was very stressed and constantly did research but now I have found myself better at doing all I can do with diet and exercise and accepting each day as a gift so I do not miss the present. It is not easy as I struggle with anxiety but I try to start each day the best I can. Right now my struggle is more weight loss as I have taken a drug for insomnia for 25 years which causes weight gain. I have tried other drugs but have not found anything else that works for insomnia. My daughter thinks I should try medical marijuana for sleep and I may ask at next dr appt but I doubt they will approve that. Best wishes on your journey. If you would ever like to chat please reach out. Kathy
Kathy,I would like to suggest a sleep study. The first year, I was told insomnia, and the specialist suggested hormones or menopause related. The following year, I was diagnosed sleep apnea. Same specialist explained insomnia can be a symptom of sleep apnea. (Hey, go figure.)
Oddly, some imaging for pulsatile tinnitus showed possible IIH… now sleep specialist states “treat sleep apnea, treat IIH.”
I can’t win, but just know the C PAP has given me my restorative sleep back. And it supports the liver in that it’s not yet another medication. Hope this helps…
Hugs!
Hi! Thank you for your response. I actually have a cpap also. My insomnia is from anxiety..it is a long story but have been on sleep drugs for 24 years. I got off the benzo klonopin 2 years ago but still need remeron an antidepressant with sleep as a side effect. Unfortunately remeron causes major weight gain. There doesn't seem to be a safe drug to help me fall asleep. Best wishes to you!!
Hi ThyroidDeb. I totally understand what you're feeling. I feel like that often. I was diagnosed in July 2021 with biopsy that showed stage 2 fibrosis. I keep seeing conflicting data about the possibility of reversing versus halting the damage, and am trying to eat healthier and lose weight. I've lost 15 lbs (originally 20 but gained back 5 due to dietary indiscretions). I was told 14 years ago my liver was fatty on ultrasound but the primary care doctor who had his secretary call me to tell me that didn't tell her what to say when I asked her what that meant I should do. I erroneously thought if it was that serious, he'd let me know. It is a struggle to keep from blaming myself for basically ignoring the situation, but there's not much point in that. I think it will be helpful when we all have better weather and can get outdoors and walk in the sun and feel like we are doing all we can to help ourselves. I am really frustrated with myself because of how I've been eating lately but am getting back on track. I found that when I eat in a healthy way and am more active (neither have been habits of mine and are extremely opposite of my inclinations), it makes me feel a little more powerful to try to fight this and that I have some control over it, at least to a degree. I hope there is something in what is here to make you know you've got lots of good company and feel supported by all the members. This situation can make you feel so helpless but you are really not entirely without power. You (and I'm telling myself this as well as anyone else who needs to hear it) can take steps to help the situation in your activities and food choices. I let myself get caught up in feeling helpless and have eaten wrong and not exercised, so please don't do that! I am now starting to move forward in a more positive way and help myself as much as I can. I hope you will feel better and know there are lots of us here who do know how you feel and care! Please keep me posted as to how you're feeling. This is very hard but know you are not alone. Sending good thoughts!
Thank you for responding. I read these over and over to know I am not alone. It is hard, you look at friends and relatives on FB with all ther happy faces enjoying warm weather, food and drinks. It's hard, while I am happy for them I mourn my old life. I guess if there is a good stage, at yours F2 there is a good chance you can reverse over time. Wayne suggested under google:
pubmed regression of liver fibrosis
Scientific, lots of data, might take a gander! It was encouraging even for cirrhosis (hate that word by the way). Again, I read these over and over too, it helps along with people like you out there. Good luck to us!!
Some Drs aren't very positive. I was very pleased with my drs. They were very positive but only if I follow their suggestions. You must keep on the positive side. Its your body and you have to keep on the positive side. Keep searching out with others that have been there. Not everyone is the same, but find some that are that have been trying themselves!! Then keep working to help yourself. You MUST !!! We want to get better and we will stay alive and create a better life for ourselves !!!! Anything I can do to help You, Please Yes let me know !!! OK ?? Ron
Thanks Ron, you have been very helpful. I try every day to make it better than the day before. I do wish I would get my appetite back. Hoping once I get a better grip on the anxiety it will. I am usually an emotional eater not this time!! ThanksDeb
well what do you normally eat?? , glad I could help you some !? Ron
Obviously crap!!! Lol way better now and still learning...
well we all learn what is better for us all !!! LOL
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