End Stage Liver Disease

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cjwldw
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Date Joined Aug 2007
Total Posts : 7
   Posted 8/8/2007 3:56 PM (GMT -7)   
My father has been drinking for atleast the past 45 years (he is 68). He is an alcoholic and has cirrhosis of the liver and bladder cancer. In 2002 he was hospitalized with an Esophageal Varices, he survived that and started to drink again. In 2005 he had another Esophageal Varices and also survived that one. He was told to stop drinking which he did for a while. Then it was off and on drinking. For the past year he has had problems with his bowels which he claims to be food poisoning. He has it so often that we know that it's just what he is blaming it on. Three weeks ago he was admitted to the hospital because he was very yellow, stomach was distended and diarreah. His bilirubin leves were 16.3, potassium and sodium where low and they drained some of the fluid from him stomach. They also put him on antibiotics because the fluid was infected. They let him go home on the 30th. His stomach had gone down a bit, and the jaundice was not so bad. He was sent home taking Aldactone 25mg twice aday.
He had a follow up with the gastroenterologist today. His stomach has swelled back up and the jaundice appears to be coming back. They upped the Aldactone to 50mg twice a day and Lasix 20mg once a day. The swelling has moved to his legs as well. They did not drain any fluid from his stomach this time. The doctor said that it was ESLD but nothing about what to expect. I don't know any of his levels because he didn't have any blood drawn for this appt. But he will for his next one in 4 wks. 
At home he is very tired, is in a bit of discomfort, has a hard time getting up, says that his back hurts (from the fluid retention), still has diarreah, is extremly out of breath from walking short distances, and poor appetite. We are trying to keep him on a low (or no)sodium diet.
What do we expect from here? The doctor said he was not a canidate for a liver transplant.
TIA~Amy

paula1965
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Date Joined Aug 2007
Total Posts : 11
   Posted 8/8/2007 6:30 PM (GMT -7)   
hi, my ex was just diagnosed with end stage liver disease...can you shed some light on what he can expect to go through?   right now he has swollen belly, feet and testacles? he is on a water pill and by the way he has no insurance- i don't think they are doing all they can because of it?   anyones help would be appreciated.
paula

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/8/2007 9:31 PM (GMT -7)   
Welcome to you both. Well, the road that they both are on is not going to be fun. It's going be full of pot holes and bumps. There is no easy way to say this other then their time is limited here on earth. My husband past away from liver cancer caused by esld and hep C. It was a long hard battle for both him and me. When I couldn't handle it alone any longer I called in hospice. 3 weeks later he past away. This is one of the most hideous diseases out there. High ammonia levels usely develop at some point. When it does the patient gets real goofy. They don't know what they are doing and sometimes get combative. The doctors usely prescribe Latalose and/or Xanifan for it. Latalose causes diahrea so the doc's will readjust the dosage as needed. My husband never had a problem with water retention or bleeding varices. He did however have seizures and a minor stroke. He also had very itchy skin and would scratch himself until he bled. He was tired most of the time. Stayed in our bedroom 95% of the time while I was home. He got very cranky,frightned and abusive near the end. There's alot of other stuff too. Google end stage liver disease. You can find alot of good web sites.
Try to enjoy every moment with them that you can. Take care..........Pink Grandma

paula1965
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Date Joined Aug 2007
Total Posts : 11
   Posted 8/10/2007 4:49 AM (GMT -7)   

dear pink grandma, thank you for the post    can i ask how long from diagnosis to the end?  my ex literally drank every day for the past 9 years since our divorce and i told him this would happen someday???  we got divorced because of his drinking problem and i feel helpless beacuse we have a 15 yr old daughter together who is left to dwell and think about her father suffering...since diagnosed in just 2 weeks he has been in and out of the hospital about 6 times?? he went in because he was vomitting blood, then they sedated him for 4 days because something is wrong with his throat? he came home and was swelled up like 2x his normal size and has been in and out since? Yesterday i spoke with him and his skin was leaking fluid? what a nightmare this has been for him, and there is nothing they do for him besides water pills????? this is insane

paula


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/10/2007 2:30 PM (GMT -7)   
My heart goes out to you caretakers. It's such a hard thing to deal with. I just wanted to mention that the drug's proper spelling is lactulose.

God bless you.

Connie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/10/2007 8:13 PM (GMT -7)   
Dear Paula, the symptoms that you are describing don't sound too good. The spitting up blood may very well be bleeding esophagus varices. It's similar to an aneurysm in the brain. Near the end in some patients their veins won't hold their blood and it seeps out . It sounds like your ex is in the early stages of a bleed out. With what's going on with him it doesn't sound like he will last much longer. Who's taking care of him? Is hospice involved yet? If not they need to be. Hospice can give you tips on keeping him as comfortable as possible and also help with the meds. They are a great support system usually. It may get pretty awful.
To keep the swelling in check he needs to be on a low sodium diet and restricted fluids along with the water pills.
My thoughts and prayers will be with all 3 of you. Pink Grandma

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/11/2007 4:33 AM (GMT -7)   
good morning Pink Grandma
its so nice to come to the boards and hear from someone...i speak with him everyday and his family, i will say when we were married he was never good at sticking to anything so i really don't know if he will stick to any type of diet? he goes in and out of the emergency room about every 2nd day and because he won't stay in the hospital he just signs himself out then goes home?
yesterday he said "stuff" was coming out of his skin? i spoke to his sister and she said it is calling sweeping edema. his other sister was taking him to see an herbalist---i haven't rec'd an update yet. i can't stand that each day is uncertain and he was told he will die if he bleeds again? something in throat has holes or damage? protein levels very low, constant bathroom trips, memory loss....yet if you talk to him you would never know anything is wrong.
 i really believe that with all these privacy issues its hard to get the correct information from drs, no one will talk and my ex is horrible with asking the IMPORTANT things when he does speak to the drs...he has no insurance and these local hospitals he has been going to are a horror....what type of treatment does he expect in an emergency room???  he won't sign himself back in and there are times he is VERY forgetful----he has already signed a living will  but i wonder if he realizes its not going to just "go away"      from the looks of messages on the boards this could carry on and he could have good and bad days??   i will keep you updated and again thank you
paula

cjwldw
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 8/11/2007 5:13 AM (GMT -7)   

Paula, I am very sorry that you have to go through this. It is so hard to just stand by and not be able to help.

Pink Grandma, Thank you so much for you replies. I am also very sorry that you had to go through this. It is very helpful to hear your experience.

My dad just went back into the hospital yesterday. His lab work came back that he also has a tick-borne disease, babesiosis. His doctor made it seem imperative that he be in the hospital. Much to his dismay. This disease causes a lot of the same symptoms that he is already having, fatigue, loss of appetite, jaundice, etc. They admitted him I think mostly because his liver is so decompansated they want to watch how he handles the antibiotics. I just hope that they have started to treat it in time. I believe he had someone watching for him. It was an eagle-eyed lab tech that noticed that he might have it.

Can anyone explain to me the reason for the low sodium diet. Yesterday they said that he was anemic and his sodium was very low. When he got out of the hospital the first time he was told to go on a low sodium diet and he was on a strict fluid intake. So if his sodium is so low why the low sodium diet? Sorry I forgot to ask his gastroenterologist on weds. when we saw him and you can never get the hospital dr.

Hope everyone has a safe weekend!

Amy


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/11/2007 11:46 AM (GMT -7)   
Paula, the term is "weeping edema." I had some of that when my legs and feet swelled up to 3 x normal size.

Amy (my daughter's name, too), the reason for the low-sodium diet is to prevent fluid retention. The low-sodium diet apparently worked a little too well. With recent blood work, I was also found to have low sodium. I had been told "no table salt," and I was eating mostly salads and fruit. I have since been eating some Goldfish crackers and soup to boost sodium. Since being placed on Lasix and Aldactone, swelling has not been a problem.

Be sure to take good care of yourselves. It's absolutely necessary.

Connie

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/11/2007 5:14 PM (GMT -7)   
THANK YOU TO ALL THE LADIES THAT REPLIED---i wish we didn't have to know how to pronounce these words??????   what a crazy illness that literally changes peoples lives in a day!!!!   everyday is different for my ex--swells up, lathargic, swelling down, aches and pains from a person that really never complained in his life---i find these boards very informative and its great to know that you're not alone going through this.   i just wish there were more out there to help people affected with all these different  illnesses.
 
i survived my brother being MIS DIAGNOSED last year for spinal tumors and he rec'd needless radiation every day for 6 weeks---when in fact the spinal tumors were there but DID NOT require radiation which at 36 left his unable to live his life as he knew it, it tore his small children apart and its sad when you have 3 small children crying that they just want their dad back the way he used to be???  thank you doctors??? happily, he is recovering at home, left unable to work and if you can believe it they denied him for his own social security?  after a year he just finally got approved and received the money that he worked so hard for.
one of the finest hospitals in nyc and they actually admitted that they MISSED THE FACT THAT HE WAS BLEEDING THROUGH HIS SPINE-----they didn't read the films correctly?????
then he was exposed to 6 weeks of daily radiation in 8 areas of his spine for no good reason----the message is everyone makes mistakes so don't be afraid to ask questions....
paula
 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/11/2007 6:40 PM (GMT -7)   
Amen to that Paula, That's one thing that I have learned is that doctors and nurses are regular human being like us and do make mistakes. Not that I am trying to put them down just trying to get people to take more responsibility for their own care. Get educated there's no excuse not to if they have access to a computer or even a library. If I knew at the beginning of my husband's illness what I know now .....who knows maybe he would still be alive. I kick myself everyday for not utilizing my computer earlier to get all the information I needed . Doctors are very notorious for not educating their patients. Even when you ask questions you may get the run around. I guess that they think their time is too valueable to educate their patients so that they can make an informed decision. Or maybe they just don't have the time. What ever the reason, patients and their families should get educated about the illness that they are faced with. Everyone have a good evening.........Pink Grandma

cjwldw
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 8/11/2007 6:59 PM (GMT -7)   

Thank you Connie, that makes sense about the sodium. I just couldn't seem to get it.

Paula~I am so sorry that your brother had to go through that. His poor children too. I am glad that he is finally getting his social security.

I just got back from visiting my dad at the hospital. He doesn't look or sound to great. They have him on azithromycin and an anti-parasite drug for the babesiosis. He started having a lot of diarreah today. Which we believe is from the azithromycin but he has also been having it off and on for a long while now. We asked the nurse about his ammonia levels and she said that they were on the high side yesterday but didn't think that they were checked today. He is having his blood drawn 4 times a day. His stomach is still very distended. On a good note he is not having any confusion and still has a bit of a sense of humor.

Amy


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/11/2007 7:54 PM (GMT -7)   
Paula, the best thing we can all do is to educate ourselves about liver disease, whether we are patients or caretakers. Always feel free to ask questions. I was a medical transcriptionist for 15 years--until 2 years ago when I became too ill to work--thus the knowledge of drug spellings and terminology. I feel it's important to know the correct spellings, in case someone wants to look up a drug or diagnosis, etc., or discuss it with a doctor.

Paula, that is just a nightmare situation! Have you considered suing?

Hugs,
Connie

Post Edited (hep93) : 8/18/2007 2:52:50 PM (GMT-6)


paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/12/2007 6:58 AM (GMT -7)   
hi and thank you everyone for the posts...right now my ex is having a good day and decided to go to the shore for a few days of rest? can we call it that? my daughter will be seeing her dad for the 1st time since this nightmare came upon him. hopefully all will be quiet there--because there are no hospitals close by, but i didn't want to talk him out of it because the whole family will be there.
 
SORRY FOR THIS LONG STORY BUT ITS IMPORTANT----about the social security issue***does anyone realize that if you are over 62 and come from another country you automatically can draw from our ss fund?*** p.s you don't even have to pay in 1 penny....but if you can't walk, can't care for yourself, can't support your family you can be denied benefits? people who want to collect their own money have to go through hell to prove they are incapacitated??  then after a year of near poverty they will give u your own money>yeah
my brother believe it or not has never said 1 wrong word about his doctors and has never considered suing....like he said "i still have to go back to them" when you are in a situation where you trust and rely so heavily on a "TEAM" of oncologists as he does, i guess he doesn't want to rock the boat?  my brother still has all BUT 1 of the the 6 tumors in his back and 1 is only gone because he was bleeding to death  {literally} in his spine, thats when he had to undergo emergency spinal surgery that the doctors said they never wanted to have to perform because it was so risky???
let me add that after coming out of surgery he had a pulmonary embolysm in his chest--i will never forget sitting in the room that day and the head nurse came in  i said "my brother sounds very hoarse can u please check him because i am afraid from lying still he might be getting pneumonia?" little did i know the mad rush began and after a simple chest xray the nurse practitioner came in and said "HOW DO U FEEL???"  we asked why the urgency in her voice and she said because right now we need to rush u to put a filter in your chest, you must have suffered an embolysm and u could die its already in your lungs!!! i wished i was dead because i couldn't stand the pain he was going thru and i was helpless...the nightmare went on when i returned to hospital a different day....after going home to nj i returned to hospital to realize "gee, that urine bag is EMPTY from when i left???" strange but my bringing that to their attention cost my brother 4 days in CCU because no one realized he hadn't urinated?? he had to have a thin,thin thin tube up his nose for days to remove the buildup in his colon, i couldn't believe with all our technology we don't have a way to do a colon cleanse or something to release the toxins , he was 100% awake , unable to eat, couldn't walk, couldn't be in peace, miserable --just depressed from mistake after mistake. it was like emptying a 100 gal fish tank with a straw?? my brother went undiagnosed for 10 months and then to get MISDIAGNOSED IS UNBELIEVABLE....human error is one thing but carelessness costs people their lives...REMEMBER WE GO TO HOSPITALS BECAUSE WE DON'T KNOW HOW TO MAKE OURSELVES BETTER-i truly believe if our family didn't live at that hospital they would have for sure un-intentionally killed him from oversights? p.s well ladies i think i need a break, can you tell that a year later i'm still upset? i'm sorry but i had lasting impressions left on me from that experience--i'll check back monday--thanks for posting back-paula

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/12/2007 7:10 AM (GMT -7)   

amy,

keep on top of everything for your dad--we are human and its sad we need to have people "looking out for us"  i know what you mean about not seeing the doctors, because even when they do come you feel like you have to jump on them to keep them in the room more than a few minutes? but thats our family and we wait for hours and days just to cram all the questions in that little visit. i hope dad is doing better, i do know that antibiotic you spoke of does make people have diarrhea--imagine how someone who is already sick must feel on it? keep strong, hope he has better days. with these privacy issues its impossible to get accurate information-thats why when my brother was sick he gave permission for me to ask questions-my ex with the cirrhosis is different, i have to rely on him, and this liver disease makes him forget from 1 minute to the next somedays.

paula

thank you connie,pink grandma and amy


Lil Miss Kathy
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 8/12/2007 8:37 AM (GMT -7)   
 Dear Paula,
  I know what you mean. It took me 4 years to get disability
4 years of not being able to work steady, getting sick, losing jobs. It was a very trying time, finally I found a lawyer who helped me get it. I got it alot better now, I have medical coverage through Medicare. Which I didn't know I was eligible for because im only 43 years old now. But, just don't give up!
I have chronic liver disease, Auto-Immune Hep and Epilepsy.
Good luck to ya hun, I hope things go well for you, i'll keep you and your family in my prayers.
                                                     smurf Kathy

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/16/2007 3:54 AM (GMT -7)   
hi kathy,
thank you for posting. can i ask when you were diagnosed? my ex returned from the shore and my daughter said he had an arrogant attitude, i told her ahead of time he might be like that because it might have something to do with his ammonia levels? he told me he is starting to go to aa meetings, i think he is trying to get on a liver donor list....i don't know what that involves and he also said he has Hep C? this is within a week? we are all amazed how there was not 1 warning signal or anything that happened before this nightmare began-----kathy did your illness come on as quickly as his? for over a week he has also still had this "weeping edema" he said its all the time, i'll wait for any posts, i really hope all is well with everyone, kathy i will tell him about the medicare? maybe he can get it? he has no insurance of any sort and if it gets him better treatment he should apply.
check back in a few days
paula

Lil Miss Kathy
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 8/16/2007 12:11 PM (GMT -7)   
Hi Paula,
In answer to your questions. I was diagnosed in July of 2002. I am not sure when it came on exactly, I had been a healthy child except for my epilepsy since birth, medications did it for me for 38 years. Then in 2000-2001 I started getting sick a little more often. I just thought it was age. I missed days of work for the 1st time in my life, about every 6 months or so a day or 2 no big deal I thought. My boss Craig who was also a good friend knew something was wrong, he said because I NEVER missed working holidays I loved working holidays, then new years eve 2001-2002 I had what I thought was the flu lasted 3 days. Then in july I missed work for three days initially, and just continued to get weaker and weaker every day, vomiting, fever, couldnt eat, slept all the time, stuff like that. I went to see the doctor and he said to go to hospital immediatly, so I did they said my liver was shutting down from Hep c, but it was not viral Hepititus, then the test began....lol In the End Dr. King said A doctor in Omaha could confirm her diagnosis, So I went to the University of Nebraska Medical Center's liver transplant center. Where together with a doctor from Denver (via the internet) helped them to find the diagnosis, Auto- Immune syndrome, Chronic liver disease, Chronic non viral Hep. Auto immune disorder I was born with they said, as the epilepsy. I was lucky though in a way AIS can take out multiple organs, mine did not. But, they don't know how long for sure the AIS took to manifest exactly.
   Tell your ex I will be praying for him as well as your entire family, don't give up. Life is worth fighting for. I know getting Disability is not going to be easy, but it's worth it trust me it is.
    GOOD LUCK and many hugs,
                                            yeah Kathy
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/16/2007 3:29 PM (GMT -7)   

Paula, once a person is approved for disability benefits, there is a 2-year wait from the time he applied, to be automatically covered by Medicare.  So he should have less than a year's wait at this point.  It took SS over 2 years to approve me for disability benefits, so I actually got Medicare immediately, and I was covered retroactively for a couple of months.  Has he applied for Medicaid?

Connie

 


Post Edited (hep93) : 8/18/2007 2:56:40 PM (GMT-6)


Lil Miss Kathy
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 8/16/2007 3:47 PM (GMT -7)   
hep93
I didn't have to wait two years. I was started as soon as I was approved.
They even paid my bills remaining from 2000. Medicad does pay the premimum for medicare for me too. My lawyer told me it goes somewhat by need too. I was in very bad shape by the time I got disability, they took right over paying eveything in rears too. Her husband needs a good lawyer for one thing, there are some who don't get paid unless they win. Those are the best.   
                                                     Kathy

paula1965
New Member


Date Joined Aug 2007
Total Posts : 11
   Posted 8/16/2007 8:03 PM (GMT -7)   
connie and kathy-thank you so much for the info, i will pass it on to him, i think he is bad enough to get something? i know his sisters are paying for medicine because he told me how much the one pill cost? i don't think he applied for medicaid because then he should get the meds for free? he doesn't ask the right questions and i never saw someone so laid back---i believe his thinking is off from the illness or ammonia or whatever is going on ...it makes me nuts because i know he won't try and help himself-he should run-run run to that office and sign up for something. social security welfare medicaid or anything, theres no way he is working, he is still swollen all over and the weeping edema is constant? i'm actually going to see him for myself, its awkward and no one wants to be seen when they are sick. i just feel like i need to really see this for myself. he always says "i have stuff oozing out of me" can it really be all the time? i also don't know how swollen he is but aren't the water pills supposed to relieve that? i think that saying seeing is believing applies to me. pink grandma?? where are you? thank you ladies, i'll check back tomorrow and i will give my ex-husband all the information about soc sec and medicaid.
goodnite
paula
p.s. kathy---you have really been through so much and i appreciate you sharing your history with me, be well-you atleast sound like you have things under control and you are educated about your illnesses, my ex doesn't have a clue and its like pulling teeth to get information from him or any worthwhile updates, its so frustrating.  these boards provide so much information, its helping me to learn and vent.

Post Edited (paula1965) : 8/16/2007 9:12:31 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/16/2007 9:18 PM (GMT -7)   
I'm still here Paula, been very busy with work. Both my kids birthday's are coming up so I have been helping both of their daughters make them birthday gifts. They wear me out. I don't know how long it as been since you last saw your ex but be prepared for him not looking the same. I didn't notice how much my husband's phyiscal appearance changed while we were together. It took looking at pictures for me to see just how much he had changed during his last 3 years. Hope he can get disability started. That's another hard fight he has before him. Have a good evening.
Thoughts and prayers ....Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2007 2:07 PM (GMT -7)   
Kathy, how long did it take you to be approved? If it took you as long as it did me, then you wouldn't have a wait for Medicare. Medicaid has different guidelines and varies from state to state. They go mostly on financial need. They allow you to have a car and house, but if there are savings, IRAs, etc., you would not qualify (they think you should use all your financial resources before applying for Medicaid. They do allow $2000 (I think this is the figure) set aside for burial expenses.

Paula, hep C is normally contracted decades earlier and doesn't evoke symptoms for 15, 20 years or more. I recently went through the swelling of tummy and lower extremities. I had fluid seeping out from an old incision site on my ankle, but otherwise no weeping edema. I was swollen up three times my normal size. This started after my last hip surgery in 09/06. For some reason, they didn't want to give me diuretics. It was only after my liver resection for cancer that I was prescribed Lasix and Aldactone, which have worked beautifully. My problem now is a hiatal hernia that developed after surgery. I have to wait until fully healed from the liver surgery before they will do a hernia repair.

Connie

clynn
New Member


Date Joined Aug 2007
Total Posts : 2
   Posted 8/20/2007 11:03 AM (GMT -7)   
Wow---I am so happy to have found this forum. My father has been suffering for osme htime---drank heavily since he was a young boy---and a chain smoker. He lost a leg 2 years ago to PAD...has emphysema....and NOW - his red blood cell count is high, his stomach and testicles are swollen, he is scheduled for a liver biopsy in a few weeks---he has put it off---his spleen is also enlarged.

he was admitted to the hospital a few times for a heart attack and a couple of strokes and his kidneys shut down during a time.

Is it possible that he has liver disease - severe liver disease - even though he stopped drinking last year? I see no other reason why they would need a liver biopsy.

He has horrid red/black bruises on his arms.

What is going on ? The man tells me nothng...and has hidden these things from us for a long time---

any help would be greatly appreicated - -
clynn

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/20/2007 7:17 PM (GMT -7)   
Welcome Clynn. He could very well have a liver problem of some sort. They just don't do liver biopsies for anything. They must think that something is going on with it. His drinking for years and just quitting last year doesn't mean that he can't have cirrohsis. Must alcoholics are in denial about the damage that their drinking is doing to themselves and their families. It' like an ostrich sticking his head in the ground thinking that if he doesn't face it's fears ...........it's not there. My husband did that. Until he started having the symptoms of ESLD did he stop drinking. Bloated stomach/testicles and bruises on the arms and legs are some of the symptoms. But with everything else that your dad has had who knows for sure. Maybe the docs just want to rule it out. Good Luck..........Pink Grandma
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