New to ESLD and scared

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ppm guy
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Date Joined Apr 2010
Total Posts : 1197
   Posted 2/23/2018 9:24 PM (GMT -6)   
good question actually!!
Fatty liver, and Nash, are controlled mostly by diet. Yet the body needs sufficient sugar to operate optimally. Fresh fruit, veggies, and whole grains are the good carbs. They have sufficient fiber to release sugar slowly..

I also have heart disease.. atherosclerosis and A-fib. I have a pacemaker to keep my heart rate under control. I was taking 40mg Lipitor daily, 2 years ago. I had my diet changed to 60% good carbs, 25% meat protein(mostly white chicken), and I eat about a 1/4 pound of nuts daily for snacking and good fat. I cheat a little bit... I have lowered my lipid and A1C numbers quite a bit. I am only taking 10mg of Lipitor now. my last liver ultrasound showed no fat/fibrosis.

I should say, stay away from immediate release, and added sugar..You have done very well with your diet, and no alcohol. I just hope your GI problem gets better. l

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 51
   Posted 2/24/2018 8:25 AM (GMT -6)   
Thanks for the reassurance. I think my GI issues are on the mend now. I’ll probably do another day of low fiber and then start to work the fiber back in next week.

I’ve been pretty strict on my diet but I’ve recently allowed a little cheating. I had some dark chocolate. I just have a serving or even less and it’s the really low sugar variety. I just have less other fats like olive oil and nuts if I do that. The real tough thing is sodium. I’m fine with a low sodium diet and I mostly prep my own foods. But sometimes I’m lazy and want to just eat out. I still try to stay as low sodium as possible but there are days I went up to 3,000mg compared to 1,000 to 1,500 when I prep. I don’t know why everyone adds so much salt to everything. It seems like many are focused on calories and not sodium.

But it’s becoming more routine. People at work know that I am hyper focused on eating healthy. It’s actually rubbed off on many of my coworkers, but obviously not to the obsessive levels I am at. Even my kids only eat whole grain and even add spinach to their turkey sandwiches. And when I buy them treats for Valentine’s day and such I opt to get them the higher quality but smaller servings. It’s just a “new normal” I guess. Aside from this minor GI issue I’ve really felt great.

Cirrhosis_2017
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Date Joined Aug 2017
Total Posts : 51
   Posted 3/29/2018 8:48 AM (GMT -6)   
I finally went to my PCP about the GI issues. He ran some blood tests which came back with some abnormalities. My TSH is 5.49 and normal is between 0.27 and 4.20. My Free Throxine is 3.34 and normal is between 0.93 and 1.7. My PCP said he will need to run more labs to find out why these are elevated. He said that if my thyroid isn't functioning properly then it may be affecting my GI Tract. I guess this may be totally unrelated to my liver. And I guess it may be acute or chronic, a big deal or not.

Also, my white blood cells are 2.7 and my platelets are 41. These continue to drop which I don't like to see but I understand that is to be expected.

My PCP also told me to go back to eating lots of veggies and fiber but to ease myself back into it. I'm happy with that advice as I really do enjoy the new diet I have been on for 8+ months now.

But when I get these calls and check these emails it hits me right in my gut like a punch and I feel so scared and overwhelmed. But I have learned that I need to work through these feelings and not start googling thyroid issues and freaking myself out. I need to accept the things I cannot change and just keep moving forward working with my drs and enjoying my family every day. It's easy to say and hard to do though. I guess I am realizing that "beating a disease" is more about enjoying each moment right now and not about chasing an unrealistic expectation that I can rid my body of disease and imperfection. Again, this is logical and I believe it, but it doesn't always make it easier to deal with, well, maybe a little easier.

OK, I feel like I am rambling. But I oddly feel ok, a little scared and overwhelmed, but not like in the past when I got abnormal test results.

Thanks!

Happy Easter!

ppm guy
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Date Joined Apr 2010
Total Posts : 1197
   Posted 3/30/2018 5:57 PM (GMT -6)   
Good to hear from you ..did your pcp bring up the cppper issue? Really sorry, your still waiting for answers.
I understand the emotional roller coaster, that comes with waiting for results. And then more tests..

I wish you all the best and
A very happy Easter to you and your family

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 51
   Posted 4/21/2018 12:23 PM (GMT -6)   
A year ago today I got a call from a GI Dr with results from my blood tests. He called to tell me that my platelets were 59 and that I likely have liver scarring and some could be reversible but some may not so we need more tests. I was drinking when he called but I quickly dumped out the rest and vowed to never touch the stuff again. As I sobered up the sobering reality sunk in. It was a very rough 2 months until we finally got the results that I did indeed have Cirrhosis stage 4. It’s been a year since I started this journey and there is much to celebrate. I’m alive and honestly feel better today than I have in a long time. The medical tests still say I have Cirrhosis but I’ve lost fat, eat well, don’t touch alcohol, sleep and take care of myself, and I spend more time with my family than ever. I have finally put family and health in front of work. A year later and they still don’t know exactly why I have liver disease but I am getting better at working with Drs and am thankful that I live in a time where so many medical advances make our lives better and longer. I’m still scared but I’m not paralyzed with fear like I was before. It’s a functional fear that reminds me that we are all finite beings and need to make the most out of the finite time we have. I’m so lucky to have realized this when I can do something about it. I can enjoy this moment right now. And it’s saturday and I’m with my wife and kids and we are having a great day. Prior to my diagnosis I likely would have spent most of Saturday in the office trying to get ahead, eating McDonald’s, and burning off steam with some drinks at night. It’s hard to believe I aimlessly went through life like that seeing how blessed I am with my family and even “strangers” on here and many places who take time to let me know that they understand what I am going through and that I will be ok.

ppm guy
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Date Joined Apr 2010
Total Posts : 1197
   Posted 4/22/2018 12:06 PM (GMT -6)   
You have made the right decisions for yourself and your love for your family. I really do understand, because I had to make the same decisions. And I live with the reality that that each day, month or year may be my last. Talking with you and others here is therapeutic for me and hopefully supportive for you and the others who post here.

Im truly happy that you have found some peace of mind. That you can focus on the blessings in your life, and found a healthy perspective of what may or may not happen..

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 51
   Posted 5/3/2018 5:01 AM (GMT -6)   
Yes, this has been very supportive for me. Thank you so much. I talked to a cancer survivor a few months ago and we realized that we both went through the same thought process. We are about the same age. The numbers they threw out for life expectancy was sort of irrelevant to us. The big scary thing was actually being confronted with the reality that life is finite, that we will end, whether it is today, in a few months, years, or even in 40+ years. We were both sort of living our lives like we would live forever. We took things and people for granted. We made rather unhealthy choices about food, drinks, activities, work, sleep, etc. knowing that life is finite felt so heavy at first but now we see it as motivation to do the things that matter most because tomorrow is not promised. So I actually feel more alive after being diagnosed with this disease. It’s hard to explain but the disease doesn’t seem to be limiting me. Rather it feels like it opened so many doors for me to live my life how I should have all along. The dietary changes and increased sleep and decreased work have resulted in me really feeling wonderful. And nobody knows what good things or bad things are in our future. New treatments and cure are discovered every day. Catastrophe strikes without warning. I don’t really feel any less fortunate than others around me. And I really do feel blessed that I have made these positive changes. You know something happened at work yesterday that would have sent me spiraling out of control in the past. But I have my emotions more in check now so it was barely a blip for me. I’m not sure if this makes sense. But I really do appreciate everything you have said on here. In my times of despair and confusion you helped put things in perspective and find the hope.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 51
   Posted 6/7/2018 9:11 AM (GMT -6)   
I have my 2nd MRI tomorrow morning. They just called me and told me that they would like to take an additional MRI picture to assess the stiffness of my liver. I will also need to have a liver ultrasound to compare to. They said there is no additional cost to me, only an additional 20 minutes or so added onto my appointment. I figured more information is better so I agreed.

I can’t believe it’s been a year now since this all started. My biopsy was in June last year. I’m actually feeling great, have a much better handle on my emotions now. I still really don’t have any symptoms except for the low platelets and white blood cell. I’m maintaining my weight of 185#. I thought about losing a few more pounds but my wife already thinks I look emancipated compared to my “normal” 240# weight. My waists has shrunk a bit more though. I think my weight training has replaced some fat with muscle which is more dense. I have to admit that I enjoy buying pants with a 32 waist now. My wife told me I need to keep it off so we don’t waste the money we spent on the new clothes.

I still eat mostly veggies, fruits, whole grains, and some lean fish and white meat. I have had a tiny bit of dark chocolate and even had a tiny amount of red meat for Memorial Day. Actually I don’t really enjoy the red meat anymore. I have actually been eating pretty close to 3,000 calories a day and I have a pretty big appetite. I think it is he increased cardio and strength training. I went up to 8 hours of sleep per night but I found it hard to sleep at all every 3 days or so. Now that I’m at 6.5 to 7 hrs per night I sleep well every night.

I’ve done a lot of work on my mental being. I realize how hard I was on myself in the past with expectations and judgements. It’s really been eye opening to live my life with more optimism and mindful enjoyment.

One of my close friends told me that things like this happen to us to keep us from being lazy. Well, I would never wish a disease on anyone but I can tell you that my life today is much better than it has ever been in my entire life. Yes, sometimes scary things creep into my thoughts, but I’ve held off on spiraling google searches on the doom and gloom scenarios.

I hope others out there are also feeling better with the things they are dealing with as well.

Happy Day!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1197
   Posted 6/7/2018 6:20 PM (GMT -6)   
Good to hear from you..
Pretty cool, they can use MRI and ultrasound scans to check your liver stiffness(cirrhosis). Beats getting your liver poked.. good luck with that..

Its amazing how good a person can feel, when they workout on a regular basis. So cool that you have added some muscle mass. All that muscle will eat up lots of calories.

I started a serious workout routine a few months ago. I have advanced MS and heart disease, and have a pacemaker implanted.. Every morning I work on my hips and ABS for an hour. then every afternoon I do 45 minutes of chair cardio..At 68 y/o I have added some muscle, and have made everything I can still do "easier".. And it helps with those depressed times.

You have made great decisions, to cope with your medical issues.. Regardless of your outcome, "you are a success story"

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 51
   Posted 6/8/2018 8:54 AM (GMT -6)   
Thanks for the reply. I’m always happy to hear about how you are doing. There is so much to look forward to and I can see you grabbing the bull by the horns everyday. Your word may sound simple to you but they are truly inspirational to me and have helped me so much.

Words are amazing. I also had an ultrasound this morning for a potential hernia. The tech said she didn’t see any signs of a hernia but that’s just preliminary. I told her that it’s nice to get good news for a test as it’s been a while since I have. She responded with “sometimes bad news is good”. That was so powerful and also reminded me of how judgements can drag us down. Test results are neither good nor bad but rather informative to help determine next steps on our journey. Words truly have so much power, more than we realize sometimes.

I’ve also learned that outcomes aren’t really the point. The future and the past can be distracting. All we really have is this present moment. I’ve learned to enjoy the present moment even if there is pain or discomfort. I still have my moments and I’m still learning and developing even at 41 years old but I do enjoy my life way more today than I have ever in the past, as I work to shed expectations and judgements while nurishing myself with nutrient-rich foods and self-care.

I wish you the best today! And have a great weekend! You help so many people here! Thank you!
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