As many of you know, I have liver cirrhosis. Now I seem to have developed refractory ascites, which means fluid keeps accumulating in my abdomen and I have to get it drained every week or every other now. This was after only having the ascites when I was diagnosed originally with cirrhosis back in early March 2017. Almost a year to the day I had to get another drainage (6L of fluid) then eleven days later, another one (8.5L of fluid).
I visited my GI doc’s office Thursday after having blood work done a day prior, and was informed that I have very low sodium in my blood, which can apparently lead to hyponatremia.
So, they put me on restricted fluids of only 1L of fluid per day. This is a lot less water than I drink in a day, let alone the random juice/milk/sparkling ice I might drink in addition to that.
I am also on a reduced sodium diet, only 2000mg per day or less. I was told that consuming more sodium by eating would have no positive effect on raising my blood sodium.
So my questions are:
How do I raise my blood sodium levels? Is there any way?
How can I stay hydrated on only 1L of fluid per day?
Google hasn’t been all that forthcoming, so I eagerly await your responses.
Sadly, this isn’t a positive development for me, seems to be part of a progression towards ultimate liver failure.
As far as the water goes, I was drinking a lot of it, but now I can’t anymore as it just adds to my fluid accumulation. I have seen that there are drugs that treat hyponatremia that are effective, but I was not told that I had it, but from googling it looks like that’s the next condition that will plague me if I don’t get this under control.
I don’t even know if eating lots of watery fruits to help stay hydrated like watermelon would add to this…I suspect it does, water is water. It sucks because I now have a lot of dry mouth and am craving fluids, but I only allow myself a sip, keep it in my mouth, etc before swallowing, hoping it will ease that craving. This is surreal.
I have been. It helps temporarily. Like I said, I am still intaking water, but savoring it with small sips, swishing it around, etc. This still sucks feeling thirsty half the time.
You really need to be asking your hepatologist these questions. There’s no ‘one size fits all’ advice for ESLD; advice will depend on the specifics of your condition.
You may want to discuss the issue of what medications might be most helpful in keeping you comfortable with the symptoms too.
I am awaiting a call from the referral coordinator from the IU hospital liver transplant/special surgery unit in Indianapolis. I was originally referred by my surgeon (whom was prepared to perform my hernia surgery, we had everything scheduled, etc but…then ascites cropped up and when he saw my distended abdomen in the pre-surgery interview, he said he couldn’t perform the surgery as the accumulated fluid would/could lead to infection, excessive leakage, needing an ostomy bag, etc) to the University of Cincinnati hospital’s liver center, which is much, MUCH closer to me, but they don’t accept my Indiana Medicaid.
So I have to arrange a consultation with IU (a three hour round trip) just to see if they’ll perform the hernia surgery, but the lady I originally spoke to was all about the transplant list, which I assured her I was definitely interested in. I’m not very confident that the hernia surgery can be performed, even by specialists that are used to my complications to said surgery. I may be wearing a belly band for the rest of my time on Earth, which, from googling my symptoms, isn’t long for this world without a transplant, which also has no guarantees.
I am starting to notice slight cognitive defects, like when I post here, I seem to lately type the same phrase twice and have to catch it by proofreading. My vision is also declining, rather rapidly I think. The more I use my reading glasses, the more I seem to need them for things beyond the printed word, so an optometrist visit is also in order.
You’re right, I wish I had asked these questions of the RN when she saw me a few days ago…I just didn’t think of them. Thank you for your reply. I was hoping you’d chime in. Meanwhile, I just try to adhere to my restrictions, knowing that I will have another paracentesis this week. I hate it, the long lidocaine needles, the insertion of the catheter…but the relief from all the built up pressure is undeniable. I estimate based on previous episodes that I’m carrying about 6L around right now.
You can always call your practitioner back to ask those questions, FG. Use those resources! They are there for you, to advise and inform you.
And your surgeon sounds smart. Fixing a hernia isn’t realistic when the liver ain’t right. Do you know your MELD score? Too high, and there’s just a lot of things that just shouldn’t be done.
Meanwhile, have you attended to the real tough issues? Have you officially designated a Medical Power of Attorney, who is willing to act on your behalf should you become mentally incapacitated? And if so, have you made clear to your MPoA just what your wishes about your medical care and your end of life concerns are? All too often, these issues arise sooner than expected, and it’s best to have all that crystal clear before it’s necessary.
Hard questions, my friend. But at this point, denial will not serve you nor your loved ones well.
At the GI doc’s office Thursday, the RN informed me that all my numbers looked good (I wish I’d asked her to elaborate) except blood sodium. And no, I haven’t yet attended to those tough issues, but sometime soon, I must. I have nothing to leave my children, and my biggest regret should I die soon is not seeing my current 10th grade son or my current 6th grade son graduate from high school.
When I think about that I just want to curl up into a ball.
I am also very, very fatigued throughout the day. I force myself to walk about a mile a day, with my thighs BURNING with neuropathy the entire time, and I am amazed that at age 48, I am as tired as an 80 year old man would be afterwards.
I applied for disability once before and was denied. I am going to apply again under the auspices of “imminent death”. I can’t seem to get a job, no matter how menial. I can’t lift much due to the hernia. I have constant back pain from impacted spinal vertebrae, compounded by abdominal pressure from ascites. I can’t lift much without feeling my hernia “pop”, which makes me think my guts are about to spill out of me…
In short, I am not fully prepared for this but I guess I need to be. The mortality rate for someone like me barring a transplant is 50% over 1-2 years. That’ll plant me in the ground at fifty and I’ll die before my aged parents.
Fuck. I did this to myself over the years without regards to health consequences, and now my time is about up.
I have so many regrets and unfulfilled dreams I could fill an Easter basket with them. But I must soldier on.
Having dealt with both serious, if transitory, illness as well as death in my family I can’t emphasize how important that is. There are well meaning people who will make decisions you don’t like if you can’t make them yourself. There are processes in place that will make decisions nobody likes if you can’t make them for yourself. Make your wishes known to your family and loved ones BEFORE you are unable to act for yourself.
FG, the fact that you need paracentesis repeatedly is pretty much a slam dunk for disability. You just need to get that fact, on the right paperwork, to the right person. It’s not unusual to need a few tries to get disability, but you’ve crossed a bright line as far as your eligibility goes, as your disease has progressed.
As for the rest, you can still do as much of ‘the next right thing’ as possible, to ease your own situation and improve what’s to come for your family. But that means doing the tough stuff. I oversee a hospice; I see situations such as yours play out over and over, and it always plays out better for those who are proactive. I won’t give false comfort; you are going to die. Probably sooner, but maybe not. We all owe a death, and how we deal with that fact defines our lives as much as how we lived our lives.
That’s good to know about the paracentesis being a “bright line” for disability. I need the income. Man, the last time I applied it took FOREVER for a conclusion to be made about me…something like 5-6 months. I understand it’s a government thing, and having been in the Army and around it most of my life, I also know what it means to “hurry up and wait”. But I haven’t got a ton of time left to do that, LOL.
As far as “I’m going to die”, well…possibly. If this new fluid restriction does anything it may help reduce the frequency of paracentesis. Also, if I can get a transplant, then that’s a game changer too. I haven’t given up hope yet, but these are tough realities to face and I can’t shirk them. I will be on the phone all day tomorrow.
LOL, If you’ve found a way out of that outcome, good for you. IMHO, no one’s made it out of life alive yet, despite what many are celebrating today.
But make the right choices, and you may be able to extend your life for quite some time, and outlive some of us currently posting here today. And improve the quality of whatever time you have. So follow your treatment team’s advice, make those calls, and keep doing the next right thing.
