Not sure where to put this, so I put it here looking for advice.
I have cirrhosis (not a final diagnosis but the doc is pretty sure until all the rest of the bloodwork comes in).
Yesterday I had EIGHT litres of fluid drained from my abdomen (…) and spent two days in the hospital. I also had an EGD done where the doctor “rubber banded” off a few enlarged vessels in my esophagus (that was fun). He also did an echo sonogram of my heart…good old heart, still going strong after all these years of ignoring you.
Anyway, not looking for sympathy (nor would I expect to receive any due to my pain being self-chosen), but I am looking for tips on tasty low salt meals (that I also will be feeding my 15 and 11 year old sons I have custody of), good yet manageable lifestyle changes, how o prolong my life, etc.
I have a litany of pills I’m supposed to get: the dreaded Lactulose (also known as nuclear oops I crapped my pants), Furosemide, Nadolol, Spironolactone.
Any experience with these?
In fact, ANYONE with ANY experience in this matter please chime in. It goes without saying that no longer drinking alcohol is medicine #1…I don’t wish to die any sooner than I have to. I would at least like to see my sons graduate high school and get married.
(Is post #3 too early to point out that this is an incredible conjunction of user name and topic? Yes? Okay, I won’t.)
Sorry to hear it. Many of us are getting up to that age where shit starts to break and we have to face that it’s not just going to heal or fix itself if we ignore it long enough. Maybe the best approach is to look at it as a time to rearrange the good parts of your life into a better configuration.
Thanks Bo. Nowhere to go but up (or down) depending on my choices.
I hadn’t thought of the username/combo, but that’s pretty funny! I spent too many of my formative years partying like it was 1999 in 1986 and as always befalls youth, I never thought it would happen to me. Or that I should curtail my behavior as I continued on the slow, inexorable path towards alcoholism.
Drinking. It’s my own damn fault. 6-10 beers a night for 27 straight years…high alcohol beers too, so that was helpful. And I would not qualify for a transplant unless I have at least a year’s sobriety under my belt first. There is no cure except a transplant, other than mitigating the effects with lifestyle choices (not drinking being chief among them of course).
Watching a platoon of nurses and doctors draining two gallons (!!!) of yellow, beer-colored fluid from your distended abdomen is…pretty horrifying to say the least.
I’ve been on a small dose of spironolactone in the past. It was mildly diuretic (larger doses would be moreso) so don’t take it at bedtime. Otherwise no noticeable bad effects.
So sorry to hear this. Fingers crossed that you can manage this.
Of course you are. But it sounds like you’re facing up to it, and in good hands to get you through it to a new normal.
The short term will be hardest - quitting alcohol, finding a stable combination of drugs and treatment, adapting to a new diet - but there will come a day when you just wake up to the new regime and won’t remember it as anything but “normal.” So even though this is a lifetime/life change, take some comfort in knowing that there is another side to the river, and you’ll get there. With some rapids here and there. Watch out for the rocks.
ibuprofen is my go-to*. it’s pretty effective for minor pains. however, IIRC it doesn’t really have significant anti-inflammatory effects until you get to about 800 mg doses which might still be problematic for you.
eta:
not because of any physiological problems, mind, it’s just the one which seems to work best with little to no unpleasantness.
Actually, it’s the combination of too much salt AND water, causing the liver to “weep” fluid it cannot process into the abdomen, causing ascites, which is what I had.
I treat patients in your situation pretty often. From current standard recommendations tempered by my experience:
For pain meds.
Work with your liver specialist to see if there is a safe dose of acetaminophen you can take. The answer will probably be that you can tolerate a gram or two a day, safely. And frankly, this med may be your best bet for safe pain reduction. Strict avoidance is needed when there’s acute hepatic injury, but if the cirrhosis is relatively stable that’s not necessary. However, if you are still drinking alcohol at all, all bets are off.
You should probably avoid NSAIDs like ibuprofen, naproxen, aspirin, etc. due to the fact they can promote bleeding, and if your liver is not producing coagulation factors like it should, that could be fatal. Also, NSAIDs can definitely stress out the kidneys, and could potentially trigger the dreaded hepato-renal syndrome. Again, check with your hepatologist.
Most opioids are also not real safe in end stage liver disease, as a lot of them are metabolized by the liver. Toxicity from opioid buildup in the system can build up rapidly. Tramadol may be a bit safer than your typical opioid, but solid info is lacking. Again, let your doc guide you.
Gabapentin and lyrica are not metabolized by the liver so may be considered for pain relief. Nortriptylene has been helpful to some.
Bottom line: Get your directions from your personal health professionals, not from the internet. But use info from the internet to figure out what questions you want to ask your pros.
My friend lost a ton of weight and got his high blood pressure under control while becoming a low-sodium gourmand. I’ll pm you to get you in touch with him. He’ll give you some good tips on food.
Check out kidney care sites for diet tips - they have lots of suggestions for lower salt/sodium recipes and meal planning. The DASH diet may work well for you and your family, ask your doctor.
Don’t use salt during cooking and eliminate the salt shaker at the table. Use low sodium flavor enhancers like vinegar, lemon juice, garlic/onion POWDER - not salts, experiment with herbs and spices. Check packaging labels for sodium content. Purchase low sodium/no salt labeled items like canned veggies and snack items like chips. Cut back on sauces like marinades/bbq/soy sauce.
Basically, you’ll need to retrain you and your family’s tastebuds to go low salt. Ditch the salt and you’ll discover the true flavors.
Are you a man or a woman? Spironolactone has a mild testosterone-blocking effect, if you didn’t know, so be aware of the possibility of body hair loss and enlarged breasts if you are a man (although liver failure can also do that to you).
I know a woman who has primary biliary cirrhosis (autoimmune; not caused by drinking) and she had to have taps until she had a procedure to reroute the blood flow around her liver. If that procedure failed, she would have had to go on a list for a liver transplant, but it did work, she isn’t needing to be tapped, and she’s starting to gain weight which in her case is a good thing.
ETA: If you’re a man, your head hair may start growing back if you have male pattern baldness. Also, make an appointment with a registered dietician if you haven’t already.
I will add to this later, as it triggers me super hard; I lost my mom to autoimmune cirrhosis three years ago.
What I will say right now is take your medication. Please. I know that the Lactulose is nasty, I was able to get mom to take hers sometimes if I diluted it with freshly squeezed lemon juice. Yeah, the atomic diarrhea is awful; having your brain swimming in amonia is a helluva lot worse.
The drinking . . . if you need an ear, let me know. I am available. If you get a year of sobriety in you can get on the transplant list. Mom was on hold on the transplant list while she did AA for a year. She had to be sober for a year before she could be put on the list even though her cirrhosis was autoimmune related, my mom did not drink. Seriously, did not drink. Then decided not to have the transplant, and began to seriously drink. sigh
A good salt substitute I use (I am hypertensive) is Mrs. Dash. I use it in almost everything.
Damn. I wish you the best while you traverse this. Spend time with your kids, take lots of photos of you all together. *"Go skydiving, go Rocky Mountain climbing . . . "
*Lyrics from Live Like You Were Dyin’ written by Tim Nichols and Craig Wiseman.
