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lilredmnm
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/23/2008 6:21 AM (GMT -7)   
my husband is 37 years old and has been diagnosed with this dreadful disease since the age of 18.  of course he didnt stop drinking fully until the age of 34 now he suffers with the all too common symptoms of liver disease....the swelling, ammonia and protein levels high..etc.  my question is does anyone elses loved ones become agitated or hostile when there ammonia or protein levels are up?  my husband does and it is scary for the family as he is a different person entirely when this happens.  lactulose is the only help but we have to sneak the liquid in his drink or he refuses to take any for us when he is out of it as i like to call that time.. he refuses a transplant but so far he is doing well besides the ammonia and protein problems.

Grace724
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/23/2008 9:14 AM (GMT -7)   
Hi lilred...I'm new to the forum also. My husband, age 50, was diagnosed with HepC abt. 18 yrs. ago. He also did not stop drinking as he was instructed to by his doctor. He finally stopped drinking 2-14-08 when he was admitted to the hospital with Stage 3 Hepatic Encephalopathy. Scariest thing I've ever gone through, I cannot imagine what it was like for him. He was kept in the hospital until he was detoxed and has not touched a drop of alcohol since. Hopefully he never does again.

He is also taking lactulose to maintain his ammonia level. When he was admitted to the hospital it was 144, it now hovers between 48-88 (the readings he has gotten from weekly blood draws since his discharge) The gastro doc has been playing with the dosage trying to find one that doesn't keep him in the bathroom a third of the day. He started out taking 3 T three times a day and his levels were staying lower. Decreased to 2T three times a day and the levels climbed. Awaiting word today on if he will go back to 3Ts.

So far he has had no episodes of hostility, either when he was in the hospital or since. Prior to the hospitalization I did notice he was terribly forgetful, apathetic, lethargic and just not himself at all. Now he is more himself though he is a lot tireder than normal. He does not have any swelling, nor has he experienced any ascities. (Not sure if I spelled that correctly). I'm thankful for that. He had gotten a huge belly on him (no weight gain though) and began to develop breasts. Both have completely gone away. Not quite sure what to make of that, need to remember to bring it up with the gastro doc.

This has been a real eye opener for both of us. I think because he had maintained great help from diagnosis up to mid yr. last yr when he was slowly beginning not to feel or act like himself it was easy to push the diagnosis of HepC to the back of ones mind. I thought about it a lot more than he did, he just ignored it completely until he landed in the hospital! Typical man. He has a lot of regrets now...but that's water under the bridge. All he can do now is finally do what he should've been doing for yrs.

Did your husbands doctor give you any ideas on diet changes in order to keep the protein down and as a result help keep the ammonia levels down? Ours hasn't and that's something I feel I need to get educated about.

I have A LOT to learn and have turned to this board and a few others for some knowledge.

Best of luck to you too.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/23/2008 11:45 AM (GMT -7)   
Hi lilredmnm and Grace724, Welcome to HealingWell. I am so sorry that you are both experiencing the ravages of liver disease with your husbands. There is a wealth of information in previous posts that may help you. I hope you can take he time to read some of them as our members are some of the most educated and compassionate people around. Everyone of us has our own story and experiences yet we all have a common thread and that is this disease. The changes in behavioral patterns are quite common with elevated ammonia levels and have varied ranges of irratic temperments associated with it. Just make sure to mention the changes to the Dr. If possible make a list of questions for the Dr before your husbands appointments and write down the answers. If you don't understand something make sure to ask the Dr to explain in detail. Don't forget that they are working for you not the other way around.
I hope you continue to post as we are always here for you.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


lilredmnm
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/23/2008 4:14 PM (GMT -7)   
my husbands doctors never said nothing about a diet change to avoid high protein levels just if he eats a lot of meats or eggs to increase the dosage of lactulose...there is no chance of overdosing on that just a lot of bathroom time lol......i cant stand this disease.....nor can my 3 kids but that is the hand fate dealt us and now we have to play this hand out

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/23/2008 5:52 PM (GMT -7)   
Hello lilredmnm and Grace724,

Welcome to HealingWell.
And yes lilredmnm some patients get very agitated and hostile. My husband did. I think it was because deep inside he knew that he was acting weird but couldn't stop himself so he got mad. It was at himself that he was mad but he took it out on me. But when ever he came out of it he didn't remember any of the goofy or abusive things that he had done. It was hard at the time to take the abuse but I knew he had no control that his ammonia levels were high.

As far as diet they normally suggest a low sodium diet. Most patients tend to retain fluids at some point and a normal or high sodium intake usually causes more fluid retention.
And if they are having a hard time with keeping ammonia levels down some suggest low protein as well. But if there is muscle loss then some suggest high protein along with lots of lactolose. My husband didn't have extreme muscle loss like some, but he did stay away from red meat because we noticed that when ever he ate it his ammonia levels spiked.

Take care of yourselves ........come back anytime someone will be here to answer and questions or just to listen.


Thoughts and prayers to both of you and your husbands.....
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.


scared_in_oregon
New Member


Date Joined Apr 2008
Total Posts : 9
   Posted 4/23/2008 8:36 PM (GMT -7)   
Hi there, I am so new to this, I have just gotten the results of my liver biopsy today, I am just so depresses at this time, I found out that I have cronic (sorry about the spelling) cirrhosis of the liver, I have hep-c and have had treatment for that, We thought it had worked but come to find out it didn't
work. I have been in so much pain with this, I just dont know what to do. The dr. said that I am in stage 3 what ever that is, He said that it goes from 1 to 4 and I am at 3, I have no idea what this is, He said that I need to go and see a specialist for this, This mean that I have to go to another town since we dont have one here.
I just wish that there was someone here that I could talk to,
I am so sorry to bother anyone out here but I just need totalk to someone that might know what I am going through,
All my prayers are with those of you that have the samething I have.
Take Care,
Scared in Oregon

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/23/2008 9:01 PM (GMT -7)   
Hello Scared in Oregon,

Welcome to HealingWell. I am sorry that you have to deal with this disease. There is lots of good information on Hep C and cirrohsis here. Just read over some of the older posts. I know that there's one about the different stages of liver disease. I'll try to bump some of them to the top.

Stick around. We have a great bunch of people here that either have the disease or their loved one does. From this moment on.......you are not along. We are here to give you any support that we can.

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.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 4/24/2008 3:50 AM (GMT -7)   
Hi lilredmnm, Grace, and Scared and Welcome to the forum.

Lilredmnm and Grace My heart goes out to both of you as you learn to live with your loved ones disease. As someone that has the disorder it has helped me tremendously to understand what my family must be going through by looking through the caring eyes of the people here on this forum. I hope that both of you get the support and information that you need here to make this journey lless painful for you both.

Scared I understand completely where you are at this moment in time. I too was diagnosised with cirrosis in January due to progression of AIH. The news was so totally unexpected that it was like someone sucked the air right out of the room and everything became dim. Educate yourself as much as possible on this disease. My opinion is that you have to know who and what your enemy is to fight and win the war. I too had to go to another to find a doctor that specialized in my disorder, which was extremely frustrating for me and made me feel even more isolated. Finding this forum has been a sense of comfort for me. Finding others that were going through similar situtions helped me feel less isolated and alone. It has allowed me to vent my fears and frustrations without judgement and given me a great deal of support. I hope that you will get from this the same as I have. I wish you luck on this journey and will keep you in my thoughts and prayers

Lucy

lilredmnm
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/24/2008 9:23 PM (GMT -7)   
since i am his primary caregiver looks like someone would pay me since they dont have to send a nurse but cant afford to go to work because of him either it seems like a no win situation.

Grace724
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/25/2008 11:11 AM (GMT -7)   
Thanks for the warm welcome.

Learning about this disease, learning how to look out for my husband and trying to keep a grip on all my emotions (which tend to ricochet crazily from minute to minute) has been tough and we've only just begun. It boggles my mind to think of what the future holds.

Right now my husband is able to work full time and do just about everything he did before he went into the hospital. He'd be doing a lot better if he was not also dealing with a leg he broke a week before his hospitalization! That hasn't helped. He slipped on the ice 6 days before he went into the hospital.

Anyway, his spirits seem to be ok. Doesn't seem depressed. It's odd to talk to him about a lot of this because since he has stopped drinking he looks at it all realistically for the first time since his diagnosis all those yrs. ago. He has actually admitted that he was his own worst enemy after his diagnosis and up to the moment of hospitalization. Refusing to accept the diagnosis (because he felt perfectly fine), refusing to give up the Bud, not thinking about what would happen in the future when the disease got the better of him. He has a lot of regrets now, but all he can do is make the best of each day and do his best to keep himself healthy.

It was only recently that I accepted that alcoholism is a disease and not a choice. For many years I felt he drank because he just did not care about me, his children or himself. It wasn't until I educated myself more about alcoholism that was able to look at his behavior and see how the addiction to alcohol controlled him, he did not control it. I still get angry and wish he had not had to get this bad before he gave it up...but better late than never. His doctor said that if he can remain alcohol free for 1 yr. he would be able to get on the transplant list easily when/if that time came.

His most recent liver panel shows a vast improvement of his ALT, AST, GGT and ALP numbers. The doctor was really pleased with that. His ammonia level bounces around. They have him getting weekly blood draws at the present in order to monitor it so they can dink around with his Lactulose dosage and try to strike a good balance between enough and too much. Last check his level was 77 and while high (our doctor says the range is 10-60 but I've seen varying numbers so I'm not sure what number to really go by) the doctor said it wasn't too horribly high. However, it puts me on pins and needles. I find myself watching him like a hawk. He jokingly told me last night to put my microscope up for the night cause he was going to bed! oops.

When he was hospitalized his ammonia level was 114 at first reading and the highest it went before it began to come down was 159. He was at 47 when he left the hospital 8 days later. We are trying to watch the protein in his diet. I hadn't heard anything about also watching the sodium. I'll be watching that now.

Thankfully he is not dealing with any edema, ascites, bleeding issues, jaundice or any of the other symptoms I've read about. His biggest symptom right now seems to be being tired a lot. That could also be attributed to walking all day with a cast on. I find it hard not to worry about every little thing though so I catch myself waking him up just to be sure I can :) He just loves that...not. But we joke about it and go on.

I'm glad to have found this board and thanks once again for the nice welcome.

~Grace

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/25/2008 12:25 PM (GMT -7)   
Hello again.

lilredmnm, it is a catch 22 situation. Has he applied for disability yet? Hang in there. It's a tough place to be but you can do it with a little help from HealingWell friends. You are not alone in this. There are a lot of people here who totally understand what you are going through.


Grace you are one smart cookie. I didn't think of the internet until about 5 months before my husband died. You guys are early in the journey so there's a lot of time let to get educated to know what to do as the different things start popping up. I always say a good defense is a good offense. Be proactive with his disease. Take lots of notes at the doctor visits and ask lots of questions. It's a lot better to find out about things too early rather than too late.

Take care both of you.......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.


scared_in_oregon
New Member


Date Joined Apr 2008
Total Posts : 9
   Posted 4/25/2008 5:10 PM (GMT -7)   
Thank You so VERY MUCH for the welcome here, I have read some of the other posts here and I dont know if I can go through this alone, I am a widow ( I lost my husband in a car crash 4 years ago the 27th of this month) I live with my 2 cats and my kids dont live that close to me,
I was reading some of these letters about the change of diet thing, My dr only told me to eat healthy and not to drink, He never told me anything about the protein thing or about my ammonia level. this town is soooooo backwards, I do get very agitated at times, I thought it was because I am so stressed about this whole mess. I sit and cry alot because I dont know what is going to happen or what is happening to me.
I dont want to sound like I just want to have a petty party for myself, because I dont, I know there are so many people out there with this awful stuff, I just wish we all could of known about it long before now,
I have asked how did I get it and the drs have said that I could of gotten it from using drugs or from tatoos,
I did use drugs before and I have a few tatoos, But I have been clean since 1975 and I havent gotten a tatoo in about 10 years. I quit drinking 3 years ago when I found out I had this, But even before that, I was not a heavy drinker, I drank mostly on the weekends, and then I never got falling down drunk.
I dont know, I just hope that things will work out for all of you, and from reading your stories I will beable to learn more and beable to ask the drs more questions, Shoot, in this town they might even learn things frm me asking questions :-)
Please take care and my prayers are with you all.
Again Think You.
Scared in Oregon

Grace724
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/26/2008 7:47 AM (GMT -7)   
Hi scared,

I'm sorry you are dealing with this alone. I cannot imagine how difficult that must be. I'll keep you in my thoughts and prayers.

The reason for watching the amount of protein you have in your diet is because protein breaks down into ammonia which in a normal liver will break down further into urea and then be removed from the body by the kidneys. With a compromised liver, ammonia isn't removed and it stays in the blood being routed back through the body where it can pass the brain barrier and cause hepatic encephalopathy. It's a catch 22 in some ways because you do need a certain amt. of protein to maintain muscle mass, etc. Too much with the liver disease and you can create a problem for yourself. Right now I'm researching liver disease and diet via google and coming up with some good guidelines re: diet.

There are many good websites out there that can help you understand what's going on with your liver, ways to help the liver and what to look out for. Of course websites like this one and the very informed people here are another great resource.

We wondered how my husband got HepC and our doctor figures it came from a blood transfusion my husband received during surgery after a work related injury in 1979. It wasn't until sometime in the '80s that blood was tested for HepC. My husband was diagnosed when he went to the Red Cross to donate blood specifically for my grandfather who was about to have open heart surgery. That was in the early 90's. The doctor assumes my husband had probably already had the HepC since late 1979 at that time.

I'd say after the research I've done that my husband began to have symptoms related to the HepC about 4-5 yrs ago. That's when he was diagnosed with diabetes (Type II) and began to get sick more often (ie: colds, flus that type of thing. ) He was rarely sick before. Rarely missed work for anything. However in the last 2 yrs he has missed more work for minor illnesses that hit him harder than "normal" people than he has in all his work history. I talked to our doctor abt. it and asked if this could be the beginning of the real impact of the HepC and she agreed with me. The hubby however did not and continued to live his life the way he always had. It was not until the Hepatic Encephalopathy episode that he got the message.

Be glad that you gave up alcohol and other dangerous behaviors years ago. You've already done the best thing you can do for yourself. I don't know if you've posted elsewhere here on the site about your battle with this disease, if so I haven't come across them yet. What symptoms and issues are you having at present?

Don't feel that coming here and talking about your frustrations and fears is having a pity party. Heck we all need to throw the occasional pity party for ourselves and then we pull up our socks and go on.

Hugs to you

~Grace

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/27/2008 2:23 AM (GMT -7)   
Just horning in about ammonia levels . Mine have varied from less than 14 -120. My diet is still the same. I regulate my own lactulose. Make sure I go to the BR at least 4 times a day. Just try to hang in there. that's what I'm doing. june

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/27/2008 5:52 AM (GMT -7)   
Hello Scared and welcome to HealingWell. I read your posts today and realized how truly scared you are so maybe we should deal with the fear first. In light of this horrible disease and I can truly understand your fear BUT..............I have to say that getting educated about Hep and liver disease is one of the best thingsyou can do for yourself right now. Since you live alone apparently you need to know as much as possible about what is happening to your body. There are alot of posts that members have written about diet, stages of liver disease, experiences members have had, etc. Read as much as you can, take notes, write a list of questions you want to ask your Dr and then write down the answers. Keep records of all your lab work (ask for a copy every time you have labs drawn) so you know your current results. Is there a big city near you with a more progressive hospital? You may want to get a GI Dr from a larger city to see you rather than a small town Dr. Be procative in your own care as it will help you as time goes on. You will be making decisions concerning your care in relation to treatment options etc. and you need to have as much knowledge as possible to make your choices known. As far as the pity party? Well let me tell you we have all had them a time or two so don't worry about that. Pity parties are a great stress releiver. The key is to not wollow in self pity. That creates a whole other set of problems. So just pick yourself up, wipe away those tears and start fresh. Get a plan in your head of what you need to do first and egt moving on it. You will feel a sense of accomplishment once you have a plan of action and follow thru. Let us know how things are going and post as much as you like. We are all here for you so remember you are never really alone.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


bmmmw
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/13/2008 7:40 PM (GMT -7)   

Hi,

I know this post is older but it deals with what I have questions on.  I'm hoping someone is still out here looking at these.

My husband got diagnosed with High ammonia levels about 4 months ago.   They warned him that if he didn't stop drinking he could be in for irreversible liver disease.   He immediately stopped.

They put him on contulose to bring down the levels and I could immediately tell the difference.  He was on 3 x per day.  The doctor was thrilled and cut him to once a day.  BUT he has been altering it depending on how he is feeling and If I tell him he is acting out of character.

He has Polycystic Kidney disease and this causes problems with the liver as well.

I'm typing because I am scared - he doesn't get nasty when his levels go up - he gets very goofy and drunk like.   Is it o.k. for him to self adjust this medication?  I see a lot of information of personality difference but I'm worried about the drunkeness like behavior.  I would swear he downed some hard liquor but I know for a fact he hasn't.

I don't think our GP knows enough about Polycystics and that he and his practioner try to act on the behalf of specialists.  Can anyone tell me what is the best type of specialist to take him too?

He is only 44 and I'm 41.  I'm worried that I am not being aggresive enough but with HEPA laws its difficult because they treat spouses just like strangers.

Thank you for any helpful information anyone has.  I wish all of you many blessing.

 

 

 

 

 

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/13/2008 8:17 PM (GMT -7)   
Hello Bmmmw,

Welcome to HealingWell. I am so sorry that you have to deal with horrible disease. First of all have his primary care physician refer him to either a GI or better yet a Hepatologist. Your right.... Regular MD's don't know enough about the liver or the kidneys to treat the patient properly.

As far as him having high ammonia levels there could already be liver damage. So he needs to have other testing done.

My husband was diagnosed with cirrohsis about 5 years before his ammonia levels started to rise. And he didn't get mean until near the end. But everyone is different and has slightly different experiences with liver disease.

Doctors changed my husbands lactulose dosage frequently. And I know a few members here change their dosage as needed. But please get a physician's approval first.

As far as the kidneys go I am not very educated. Maybe others know something about it.

Hope this helps, by the way you found the best Liver disease forum on the net. We have a bunch of educated and compassionate people.

Take care and good luck..........
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.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 7/13/2008 8:24 PM (GMT -7)   
Hello Bmmmw and welcome to HealingWell.
I just posted about my husband starting to take his Lactulose again. He refused for a long time because it kept him in the bathroom too much. His Drs. have told him to adjust the dosage as to how much he can tolerate. Well, he just quit taking it at all. He was doing some really goofy things yesterday, and I guess today he could see how worried I was, because he started taking it again today. Most people say that if you see them needing it, to give it to them. When he was in the hospital one time, the nurse said that sometimes peoples ammonia levels are so high that they have to give them a Lactulose enama.
I don't know about Polycystic Kidney disease. Is there a Kidney specialist in your area?

Carol
 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 7/13/2008 9:09 PM (GMT -7)   
Hi Bmmmw, Welcome to the forum. My husband takes lactulose. He was prescribed 1 to 3 times a day as needed. I realized that when he only took it 1 time a day it wasn't doing the job well enough. He takes it 2 to 3 times a day (usually 3) and does much better. I'm so sorry that your husband has this terrible disease. You have come to the right place for help. There are many caring knowledge people here. They have really helped me alot. My husband is also 44 with cirrhosis.

I will be praying for you.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 7/13/2008 9:28 PM (GMT -7)   
Bmmmw, hi and welcome to the forum. It is very common for patients or caregivers to adjust the lactulose dosage. You probably already know that the organs in our bodies all work together and if one organ is sick with a disease the other organs are also affected one way or another. Polycystic Kidney disease simply means many cysts on the kidneys and it is a chronic problem. If your hubby is having problems with his kidneys then he should be evaluated by a Nephrologist (kidney specialist). Does he have problems urinating? Painful urination? Saying he has polycystic kidneys is kind of vague because millions of people have it and don't have serious symptoms or problems. However; he should be evaluated anyway. His liver issues may have damaged his kidneys so you will have to find out whats going on anyway. Hope this helps. 
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/13/2008 10:15 PM (GMT -7)   

Hello and welcome to all the new people!  So glad you found us!

ScaredinOregon, I also have hep C.  I was diagnosed via biopsy in March '93.  At that time, I had 6 years of sobriety.  I had used IV drugs back in the late 60s and I know that's how I contracted the hep C.  I tried interferon, but couldn't tolerate it.  All was okay, except for extreme fatigue, until about 2 yrs. ago when I was found to have a huge cancerous tumor in the right lobe of my liver.  I was fortunate to be able to go to Mayo Clinic here in my city.  With treatment and then surgery to removed that right lobe, I survived.  At that time, they did a biopsy of the left lobe of my liver and found I have "mild" cirrhosis.  I've had a couple of incisional hernia repairs since then, the last one being May 29th of this year.  I've had ascites issues since then and am now on my 3rd drain.  I'm hoping to have it removed this coming Tues.  Once I'm stable, I may consider treatment again.  Did you do the "combo?"  Would you consider going through treatment again?

I also am facing this alone.  I have no family here, and my b.f. of 13 yrs. broke up with me last Dec.  I think all the medical problems and surgeries became too much for him.  (I've had a total of 7 surgeries in the past 5 1/2 years.)

You really need to see a hepatologist if you can find one in a nearby city.  If you are unable to find one, then go to a gastroenterologist (GI doc.)  You need to have your condition closely monitored.  I assume you no longer drink.  Try to avoid anything that is hard on the liver, such as beef (the liver has to work really hard to break it down.)  I mostly eat fresh fruits and vegetables, with chicken or shrimp about twice a week.  I eat eggs, nuts, beans, and cheese for protein.

Bmmmw, your husband needs to see a nephrologist (kidney specialist) to monitor his polycistic kidney disease, and a hepatologist or GI doc for his liver problems.

Hugs to all,

Connie

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