unquenchable thirst..not diabetic

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linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/12/2008 7:31 PM (GMT -7)   
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

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/12/2008 8:27 PM (GMT -7)   
Welcome to the forum Linda. My husband has hep C and cirrhosis. He has been restricted on sodium intake but not on fluid intake so I'm sorry that I can't answer your question. My husband has a problem with sweets intake(ha,ha). I am always getting after him about that. I can only imagine how hard it must be to restrict fluid intake. I hope that someone will be able to give you some ideas. There are many caring people here that are always willing to listen or give advice. My prayers will be with you.
Butterflythree
 
There is always hope!


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/12/2008 9:07 PM (GMT -7)   
Thanks for your reply. Hey, I love sweets too, but this fluid thing is so hard.... thanks for your encouragement.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/12/2008 9:55 PM (GMT -7)   
Hi, Linsue, and welcome to the forum!  I also have hep C and cirrhosis.  Do you take diuretics?  I restrict my sodium, but have never been told to restrict my fluid intake--which is a good thing, as I'm always thirsty (and not diabetic.)  I know that my pain meds make me dry.  I used to drink a lot of diet soda, but now drink more water than soda.  Plain water helps more with keeping both fluid and weight under control.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/12/2008 10:09 PM (GMT -7)   
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 :)

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/12/2008 10:33 PM (GMT -7)   
Hello Linda and welcome to HealingWell, So sorry that you are have such difficulties with this disease.
I don't have it myself but my husband did. So I know exactly what you are going through. He had to restrict his fluid intake also. And like you it was the hardest part for him. He stopped drinking alcohol but still liked to drink pop and water and especially tea. The diuretics that he had to take were always being readjusted every time he went to the doctor........and you can imagine how often that was.

And don't worry about whining or venting.......that's what we are here for. To listen and give support .

Have a good evening..........thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/12/2008 11:04 PM (GMT -7)   
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 :)

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/13/2008 3:08 AM (GMT -7)   
Linda

Just wanted to add my welcome to the forum. I too have cirrhosis caused by AIH and am on several diuretics. I completely understand the "thirsty all the time" issue although I have not been told to restrict my fluid intake I have been told to watch my caffiene intake and cola's. That alone has been really difficult as I was a caffiene addict. Like Connie has mentioned I have tried to drink more water, I like the flavored ones best as they give me the illusion of actually drinking and have recently started juicing which does seem to help somewhat with my thirst.
This is a wonderful place to cone to express your feelings. We all do understand the frustrations of this disease.

Good Luck

Lucy

linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/13/2008 6:46 AM (GMT -7)   
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 :)

linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/13/2008 1:21 PM (GMT -7)   
I'm bleeding from a sore i picked in the middle of the night. It wont stop bleeding. I am very sick of it all. I feel like just quitting my meds and see what happens. It's too hard for me. I'm happiest when i go to sleep. Then I wake up and remember my life is upside down with this disease. The doctor says the only reason I am still here is because of my extreme intelligence and my determination. Well, I wish i were not as smart, becuz i thing of too many things and my mind wont stop. My determination is about gone. I have kids and all, but what good is all that when u cant even go visit them ? I try to have a relationship, but dont feel its fair for the other person, since I am so sick. Boy, I am having a bad day today. I wonder if i stopped all my meds if they would finally put me on the transplant list? My qualitty of life obviously sucks for lack of a better term and I am at the end of my rope. Holidays this year will be excruciating for me..... I just am not in the mood.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/13/2008 5:42 PM (GMT -7)   
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

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/13/2008 7:26 PM (GMT -7)   
Hi Linda, I am so sorry that you are having such a rough time with this disease. My heart goes out to you for all that you have had to deal with in the past couple of years. Don't give up! I will keep praying for you and you will make that transplant list. Don't feel too bad about your daughter. I imagine she knows what you are going through and it is hard on her too. She is just trying to keep you around. I catch myself getting snappy with my husband also. I always feel so bad afterwards. I bet she does too. It is just that this disease takes so much away from a person and a family. Your loved ones are not angry with you, they are angry with the disease. Which causes them to take it out on you (if that makes any sense). I know it is not fair. Sometimes we caregivers need to take a step back and think before we react.

Remember, I am praying very hard for you! Hang in there!!!
Butterflythree
 
There is always hope!


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/13/2008 7:37 PM (GMT -7)   
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 :)
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/13/2008 10:41 PM (GMT -7)   

Hi, Linda.  I was out all day...shopped for groceries in 3 different stores, trying to make my food dollars stretch.  I had someone driving me, but I am soooo exhausted tonight.  Not sleepy, just that feeling like I've run a marathon or been digging ditches all day.  When I try to do things a normal person would do, I'm brought back to reality very quickly.  This disease reminds me all the time that I am not normal.

I'm sorry you are so sick.  But please don't stop taking your meds.  It wouldn't get you on the transplant list any faster and would mess up your labs worse than they are now.  It took months of changing diuretic dosages and trying different things before my fluid problem finally got under control.  I'm currently on 40 mg of Lasix and 100 of Aldactone.  The Aldactone balances out the potassium.  Do you move around much?  I know that when I was having swelling in my feet and legs, it was much worse when I sat for any length of time.  I often had to lie down with feet higher than my head until the swelling went down.  Walking some (not overdoing it) also helps.

I had liver cancer and beat it.  Have been cancer free for 17 mos. now.  It seems with this disease, one has to get worse before getting better.  So hang in there!!


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/13/2008 10:51 PM (GMT -7)   
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 :)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/14/2008 1:22 PM (GMT -7)   

Lin, I am not "disease free"---just cancer free.  I still have hep C and cirrhosis.  I passed on trying hep C treatment again, at least for now, as my body has been through so much trauma the past 6 years or so.

Getting out with a friend should do you a world of good mentally.  We are alone with our own thoughts too often.  wink


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


linsue
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/14/2008 8:14 PM (GMT -7)   
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 :)

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/14/2008 8:34 PM (GMT -7)   
Linda, I am so glad that you got out and enjoyed yourself. Everyone needs that every once in awhile.
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/15/2008 4:01 AM (GMT -7)   
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
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