Constant Salty Taste in Mouth Affects Quality of Life

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Thurbstwin
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/18/2009 9:22 PM (GMT -7)   
Hello, I'm brand new to the site/forum.  By way of background, my husband (Tim) has Hep C, stage 4 cirrhosis and will be undergoing chemo-embolization.  He has been turned down for transplantation by 2 major hospitals in the L.A. area because he has a weak heart.  The issue I'm asking about is this:  Tim has been experiencing a taste of baking soda/salt since May, after having a biliary duct stent replaced.  It started out as a slight taste and has graduated to full time, non stop horrible taste.  Everything (even water) tastes bad to him.  He cannot taste anything sweet at all.  None of his doctors (hepatologist, oncologist, primary care phys. or ENT) have been able to tell him why he has this taste in his mouth, and it really affects his quality of life.  It's worse in the morning, and he says he's producing less saliva overall.  Unfortunately, he has just recently been placed on fluid restriction because of ascites, which makes the taste worse.  Has anyone here had any experience with this problem?  And if so, short of liver transplantation, do you know of any way to alleviate it?  Thanks for any insight.
 
By the way, what I've read so far here in this forum has been extremely helpful, thank you. 
 
Thurb's Twin

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/19/2009 5:11 AM (GMT -7)   
Hello Thurbstwin and welcome to HealingWell, I am so sorry that your husband and you are dealing with this horrible disease. As far as the salty taste in his mouth.........I don't recall anyone ever mentioning it but then again, it seems that now my memory is not so sharp as it once was. Maybe some have and I just don't recall.

My husband had a chemoembolization in San Francisco. It really kicked up his encephalopathy for a few weeks. Keep a close eye on him after the procedure.

Again welcome to our forum. 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.


Thurbstwin
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/19/2009 9:02 PM (GMT -7)   
Hi Pink Grandma -- thanks for your response. I appreciate your well wishes (this has been such a nightmare and it helps to know that you and everyone else here know what it's like). I especially appreciate your alerting me to the encephalopathy after the chemoembolization. I had no idea. I was planning to take a couple days off from work for the actual procedure and to care for him afterward, but didn't realize he may need longer term care after the chemoembolization.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/20/2009 5:38 AM (GMT -7)   
Thurbstwin, Have you applied for FMLA yet. You may want to..........if you qualify for it. It saved my job. I never knew when I would have to take a day off. There wasn't much planning to them. I did work through most of it though. If I took a day off here I made it up there......If I went in late...I stayed late. Fortunately I had an undestanding supervisor.

Everyone goes through this journey slightly different...I am not saying that he will need long term care......but just be prepared .....hopefully your husband won't have a rough ride with the chemoembolization as mine did. Google it.........find out all you can about the side effects after the procedure. So that you are not surprised.........every new problem that came up on on my husband's entire liver disease journey........I had no idea that it could even happen......I didn't find this forum until about 5 months before my husband died...it was a life saver for me, just wish I had found it sooner. But I am sure glad I finally did. And glad that you did too.

Take care..........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.


Thurbstwin
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/20/2009 5:01 PM (GMT -7)   
Thanks for your feedback. I discussed my potential need for FMLA leave with my office manager several months ago when I thought my husband would still be able to qualify for a liver transplant. She informed me that our firm is small and doesn't have to follow the guidelines of the Family Medical Leave Act. I looked up the Act and she's right. However, I plan to go over her head to the managing partner to request leave without pay once my vacation days are used up. I've also been working late to make up time, taking vacation days, etc.

We just saw the oncologist today. I relayed to her your husband's experience with encephalopathy following the chemoembolization. She suggested I plan to take off at least 2 weeks from work to care for him (the remainder of my vacation days), then I'll see how he's doing.

Tim and I have done a lot of web research over the last 1-1/2 years. The chemoembolization thing just came up and I hadn't yet had a chance to look deeply into it. I will, though.

I'm so sorry to hear that you lost your husband, Pink Grandma. Thanks again for your compassion.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/21/2009 6:38 AM (GMT -7)   
mad It's too bad that they put a limit on the number of employees that an employer has for someone to qualify for FMLA. Do talk with your manager..........Does your employer have a HR dept? If so talk with them too.

My email is in my profile.........there's other things that started happening after my husband's procedure that you should know about........Email me if you like......

Thanks for your condolence......it's been about 2 1/2 years since he passed........I am still here........because I want to try to help educate people about this horrendous disease........if I can assist others........then my husband didn't die in vane...........There's so many different avenues to take and some people get lost in all the road blocks and red tape.

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.

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