unquenchable thirst..not diabetic

Hi all..... I have end stage liver disease and have been suffereing with the effects and side effects of it for two years now. Guess im not sick enuf to even get put on the list yet, according to my MELD score.  Anyway, lately, I have put on the water weight. Im already restricted in my protein level intake, and when I try to restrict my fluids... O dear, I just get thirstier and thirstier.  Its unquenchable at times.  I have tried ice , ice chips, frozen ice pops, you name it.  My daughter gets after me for not controlling this but she does not know what it is like to be thirsty and not be able to quench your thirst. Any idea? thanks...linda

Thanks for your reply. Hey, I love sweets too, but this fluid thing is so hard.... thanks for your encouragement.

Hi Connie, thanks for the answer. I dont have hep c but i do have cirrhosis. I take several diuretics and its always a balance between crampin in my legs and arms and/or being low in potassium. I also take potassium 3 times a day. i am on 9 meds to keep me going. I have less than 3% liver function and have had my liver bypassed to my portal vein in the heart...... I have been hospitalized for fluid retention so many times. Its a hard balance to keep. i too watch my sodium. I wonder why i retain it so much? i restrict fluids, sodium, and protein. its been two years now, and I cant wait to be put on the transplant list. My quality of life seems to be going down and I am tired of being so patient. sigh..... Thanks for the water tip... my doc said to try gatorade to keep my electrolytes intact as well. I have low white and red blood cells, and I bleed so very easily. Bruisising on me is also a given. Sometimes I get so tired of all this you know? I cant drive or work because I get hepatic encepalopothy and sometimes the cramping i mentioned before. Seems as if every week there is a new side effect or symptom for all this... i am only 55 and never drank or smoke or took any illegal drusg or anything like that. Doctors dont know why my liver is in such a state, but it is what it is....... Well, thanks for letting me vent a bit. Nobody seems to know what I am going through with all this. My daughter is my caretaker, and she barks orders to me sometimes, like watch your fluids, etc. Let her walk just one day in my shoes... then she will know how difficult this all can be....... Thanks again,,,,, sorry to whine... Linda :)

aww thanks Pink Grandma, for the nice welcome and the info. yeah , they are constantly redoing my meds and things as well..... its such a balance i guess. LOL thanks for the kind words, i am SO happy i found this forum. thank u thank u thank u........ linda :)

Thanks Lucy, and thank u for the nice welcome. It is quite the dilemma sometimes with this disease.. they tell me whatever I drink I have to count: water, ice, the fluid in foods and soups, etc. I feel like I am being punished for being ill. i didn't ask for this. They don't even know how I got this way... I was never a drinker at all and never smoked, no hep c, nothing....... One day I vomited so much blood it seemed I was in a horror movie..... that was two years ago this past week. And my life has been altered ever since. No work, no driving, non-stop doctors and tests I have never even heard of.... so many side effects that is it something new every week if not everyday. The liver must be a marvelous organ when it works, but when it needs replacing, it can be your worst enemy it seems.

I wonder how long I have to wait until i get "sick enough" to get on the transplant list? Any comments or ideas on this topic? My quality of life is slipping and I am so ready to get all this over with and resume my former life.

thanks for listening, Linda :)

Linda

We all know how frustrating all this is and I wish I had an answer for you on how sick you have to be to be on the transplant list. It seems that there are a variety of things that make you jump up on the list and not just the MELD score. Please don't stop taking your meds though it really will only make you weaker and more fatigued than you are currently. I have had to go without my medications for several months when I lost my insurance and it took several months before my husbands picked me up. I still did not make it to the transplant list but however I did experience even more fatigue and pain.

I am sure that there is not one of us that don't feel the same way as you do that we want our lives back. It is easy sometimes to get lost in the disease and forget that we are sto;; a perrson that is so much more than just the illness, doctors, tests, and all the poking and proding. You have been through so much in such a short period of time, you must be a very strong woman to have endured it all. Try not to forget that.
Keep your chin up we are all here for you.

Lucy

Thank you so much Lucy and Butterfly for your kind words and your compassion. I know its hard on all of us involved.  It's just that even if i go into the hospital for this or that..... I am still not "cured" you know? That does a number on you.. I mean, god forbid i ever got cancer. but people actually do get "cured" of it u know?  This liver stuff just goes on and on and affects me in more and more ways. Now they say i have gallstones and a nodule on my thyroid they are worried about. I have an umbilical hernia which is too hard to operat e  on , since i had the shunt put in for my liver. I am told that the surgery i had will make it twice as hard to do a transplant anyway..... Never any good news it seems.   But i am trying to hold my head up. My daughter does mean well and she also has a four year old girl and she does her grandpas dialysis for him. She has a lot on her plate.  Not much of a life for a 35 year old, and I know that.  I tell her i appreciate her. I hope she realizes it.

Thank you for your prayers as well, I am a firm believer in the power of prayer.  I am so fatigued, but cant sleep. Maybe I will just lie down and rest for a bit.  Thanks again to you wonderful people on here.    Linda :)

 

Hi Connie, thanks for the nice reply. I know what you mean about "Doing things normal people do" lol....... although I never did claim to be a normal person, even before all this liver mess began !!!!!...... I am so proud of you that you hung in there and are now disease free.  Gosh, thats great, Connie. A success story :)    

I think the thing that really frustrates me the most is when people look at me and accuse me of drinking all kinds of fluids all day. Sometimes I have hardly any and still balloon up.  My legs were bad before all this began.....I had poor circulation in my lower legs, so this just exacerbates it... (My big word for the day. LOL)......

Yeah, it is a constant battle of the meds I am taking. I think I put too much on myself sometimes, trying to be the perfect patient. I dont think there is one to tell u the truth, and I feel guilty when i get sick.  Sounds silly, but it was my upbringing i guess.  (dont get me started, I could write a book on growing up guilty...guess what religion i am? LOL)

Well, connie thanks again and I will take your words to heart. I get to go shopping with a friend tomorrow and am really looking forward to getting outside these four walls.... we are going craft shopping. We do greeting cards together, so it should be fun. :)

Have a good night and thanks for taking the time to help me out, all of you. You are angels on earth. I am really glad for this forum.  God help me, these mood swings have to stop as well..... LOL gnite......linda :)

Connie..... I had a nice day out with my friend, thanks. And yes, it helps to clear the mind of things.... I do think WAY too much sometimes.. it can often be my downfall, but I try to recognize it now and catch myself and do something positive.

One day at a time, I guess. Take care..... Linda :)

Liinda
I am so glad you got out and was able to enjoy time with your friends. It helps so much sometimes to do things that keep our thoughts on something else other than illness. Hope today is just as nice.

Lucy