New user...need help...maybe questions answered....end stage liver disease

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marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 4/25/2007 8:55 PM (GMT -7)   
Hello. I'll try to keep this as short as possible, but forgive me in advance for the length.

My father is a 53 year old man who has been a hard core drinker for about 35 years. He also has Hepatitis C (not sure what genotype) contracted about 25 years ago from needle drug use (hasnt used needles or street drugs in over 20 years though, just drinker)

He has ignored his Hep C and in the past done nothing to protect his liver and is now in the hospital (for maybe the tenth time?) with end stage liver failure. He currently lives at an old age home since his last hospital visit. He was taken into the emergency tonight. Here are some of his current symptoms...

jaundice - months now especially the eyes
Cholestasis - they are currently suctioning dark tar colored bile out from his stomach
ascites and/or fluid in the abdominal cavity - his belly and legs are simply HUGE...and have been for weeks now
encephalopathy - he is mentally there about ten percent of the time...other times severe hallucinations....sleep disturbances like sleeping during the day up all night..this has been going on and off for about a full YEAR now.
itchy skin and scabbing with easy bleeding
leg and hip pain

Tonight he has started bleeding internally? He has not gone to the bathroom (1 or 2) in days but has blood coming out from the anus, and they are trying to stop the bleeding without much luck tonight. The list of abov symptoms is the tip of the iceberg really. He has had probably a dozen more symptoms and in total has been going downhill for WELL over a year with liver failure. His liver is not functioning at all, and his kidneys are just barely there. He is not a candidate for dyalisis or transplant.

My reason for posting is the hope that someone here has known someone who has gone through this and can give me a super rough guess on time. I want it straight. The doctors are always new when he comes to the hospital and some have said weeks, others have said a year. Can anyone tell me whats next? How long he might suffer? Is this new symptom tonight (the internal bleeding) the REAL beginning of the end? My family loves my dad dearly...but we and him are suffering horribly. I want him to pass soon, and in peace.

thanks in advance for any words or thoughts.
marisa

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 4/26/2007 1:00 AM (GMT -7)   
Welcome Marisa,
 
You found the right place. The doctors are correct that only God knows how long someone with end stage liver disease has to live. It's often the complications that result in death and your Dad is having major ones. Bleeding from varicies is very serious and that sounds like what is causing the bleeding. If they can get the bleeding under control, there could be time left or this could be the end.
 
Also not eliminating for several days is not a good sign. I would not be surprised if your Dad passed soon. On the other hand, I wouldn't be surprised if he lived many more months or a year.
That's the nature of liver disease.
 
It's difficult watching a loved one decline. Make the most of the lucid moments he has.
 
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 4/26/2007 7:29 AM (GMT -7)   
Hi.

Thanks for your reply. I am not sure but I think he hasn't eliminated in 4 days or more. He barely ever goes pee and he has at times had a catheter (spelling) in but I don't think he has one now.

I just hate to say it but my sister, me and my step mother are all hoping he will go into a coma soon and pass peacefully. It sounds horrible but this has been going on for longer than a year....the hallucinations are horrible on top of the other symptoms. He tries to eat things, sees people standing next to him..shakes hands with people who aren't there.....we just are exhausted and love the dad he used to be and want him to stop suffering.

marisa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/26/2007 9:29 AM (GMT -7)   
Marisa, it really doesn't sound like he has long to live. With his kidneys shutting down, that is a major indication that his body systems are shutting down...which is what happens prior to death. As Barb said, liver disease is a funny thing and people have come back from the very edge of death. In your dad's case, though, it seems more likely that he will pass away soon.

Hugs,
Connie

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 4/28/2007 9:44 AM (GMT -7)   
eyes  hi marisab,
my father had just about everything you mentioned but no hepc, no drinking. we found out about cirrohsis july of 06 he was much older after 6 months of in and out of hospitals december of 06 he started bleeding to and the lactoluce wasnt working any more so he slipped into a coma overnight, i told the dr enough is enough please just make him comfortable no more hes been through enough. he had the ascites, his kidneys started to shut down but he wasnt jaundice the whole time.
  so they made him as comfortable as they could and he passed in about a day and a half.  i wanted to bring him home but didint get to, maybe it was better this way he didnt have to ride in another ambulance, and we were all so tired it was six months of just a dead run. please talk to the dr see what they say and whats the best thing you can do for your dad.
its very hard to let go i know that, but even harder to watch them suffer like that. i to was my fathers only daughter.
lets us know ok?
 
myfathers child
annette

marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 4/28/2007 9:52 AM (GMT -7)   
Hi guys. Thanks for all your replies so far.

My Dad still has tubes in his nose going down into his stomach draining stuff. He is MORE swollen in the belly and legs, but his face and arms are like a skeleton. He is mentally not there like 75% of the time, maybe more. He sleeps all day long and sometimes through the night but so far no coma or anything. I don't want to sound horrible but I just wish whoever is "in charge" would deem the time has come. He has suffered so much yet his body is STILL holding on.

He is able to talk somewhat (with the tube its difficult) and was able to make some phone calls to his mother and what not. But his conversations are all over the map about stuff that doesn't exist.

He has been in and out of this condition for well over a year now. And this has got to be the tenth time he's been in an emergency medical situation rushed to the ERSo he is still in th hospital but they are also holding his place at the care home he is living in for now.

I'll keep updating.

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 4/28/2007 12:25 PM (GMT -7)   

marisib,

hang in dear it is like a bad rollercoaster ride, you are in my thoughts and prayers, you never know what can happen with this bad or good just take it day to day. good luck. keep in touch when you can. yeah annette


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 4/28/2007 12:38 PM (GMT -7)   
Thanks Annette

What's most upsetting to me right now is that my Mother has this to "look forward" too as well. She has Hep C too (my parents are seperated and contracted the disease in seperate ways) and is starting her interferon (spelling?) today. She has a viral count of 38 million which I know is really high. I am sad they both have to die this way eventually.

I will keep everyone updated, thanks so much. knowing other people are dealing with this has not only helped me, but the rest of my family too when I told them about this forum and some of the stories on it.

Marisa

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 4/28/2007 6:20 PM (GMT -7)   
hi and welcome Marisa
I'm glad the others have jumped in and offered their advice and help, this is a great place for support,and the people are wonderful on this forum. I know how much this forum has held me up through some very rough times. I will be watching for updates and will be thinking and praying for your family and you.
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 4/30/2007 8:53 AM (GMT -7)   
Hello.

Just thought i'd give you nice people an update. Thanks for all your kind replies so far.

Yesterday they moved my Dad back to his nursing home. He still has bleeding from his anus (gross i know) so obviously still bleeding internally but I guess he was stable enough to move back to the home. He literally looks like he has two different bodies though....the top half skeleton and skin, the bottom half extremely bloated and swollen beyond belief. He WAS able to be moved into a wheelchair last night and taken outside for a cigarette (one of his last enjoyments, bad for his condition I know but at this point, who cares) but it wore him out to no end.

So right now he is "hanging on" but I can only assume its a matter of time.

On another subject kinda my Mother is starting drug therapy for her Hep C today. She will only be on it for one month though and will stop taking it if it does not show any improvment. The doctors say her case is actually unusual. She has a count of 38 million and has had hep C for 30 years now..the doctors say she should be showing some signs of chirosis of the liver but is not. The virus seems to be causing other issues instead of bad liver damage, like arthritis and a couple other minor issues. They said normally the liver suffers the most especially with a viral load that high but hers seems to be running a different course.

Anyways I will keep updating. thank you everyone

Marisa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/1/2007 6:43 AM (GMT -7)   
Hi, Marisab, and welcome! You stated that you are sad that both your parents have to die with hep C/liver disease. This is not true. Many people who are taking the combo treatment are experiencing great results, such as total remission. Also, not everyone with hep C gets cirrhosis. I've had hep C for 39 yrs. and have no cirrhosis. I do have liver cancer and will have surgery for that the end of the month. However, I never took a full course of interferon and haven't tried the combo. I will, though, after I recover from surgery. I've never heard of anyone getting arthritis from having hep C. Also, a month is really not sufficient time to see if there is improvement with treatment. Your mom needs at least 6 weeks to see if her blood work improves.

Please come back and let us know how everything is going and how you are holding up.

Connie

marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/5/2007 10:45 AM (GMT -7)   
Hello hep93!

Yeah apparently a few people do get arthritis or something like it from Hep C....here are a couple articles...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10910182&dopt=Abstract
http://www.ingentaconnect.com/content/apl/eop/2005/00000006/00000001/art00004
http://www.asm.org/Media/index.asp?bid=31134

I don't think they really know much about this yet...I do believe from the reading I have done it can be virus related. My Mother had no arthritic problems prior to HepC infection although she has had HepC for MANY years....but she is working with a very good doctor in Los Angeles and has been with him for about a decade now and he is pretty sure its virus related.



And update on Dad: He is in the hospital AGAIN...he complains he cannot breath so they take him in....the problem the doctor said is that his abdomen is sooooo swollen its actually putting pressure on his lungs and making it difficult for him to breath. He is in a very weird mental state and sometimes wants to die, other times tell me as long as he gets his liver working he will be fine??? So basically he is not there mentally really. This is HORRIBLE. I feel like watching someone die of this is akin to being eaten alive by vultures. It is a HORRIBLE thing to watch, to have happen to you, to live through. It just goes on and on and on. Three years ago my 21 year old brother died instantly in a car accident, while that was difficult and hard to accept....this is FAR WORSE.

I don't know if any of you have seen the movie "The Beach" but for those who have...remember the part in the movie after the Swiss guys have been attacked by the shark and the whole "camp" decides that they simply cannot watch the survivor suffer anymore. His injuries are not healing, and he moans and screams and has horrible health conditions and is living in the main area they all live in. So eventually they decide to move him out to the woods, in a tent and ignore him and let him die.

Yes horrible. But I am human and it hurts my heart in ways only you guys can imagine to say that sometimes I feel like I just wish he would die. Now please don't rip me apart. For some reason I have decided to pour myself out here and now and I am telling you that I love my father with my entire being, but I want him to die. For him. For me. This sort of situation brings out all manner of selfish feelings in me and I would hope any human. After a year plus of this my sister and I both pray for him to pass and sometimes these days I wonder if I want him to die to ease his suffering or to ease mine. This disease is making me second guess what type of person I am. Why would I feel that way? Should people endure everything that comes at them for a loved one? If a disease goes on for a decade, shouldn't we be bedside for a decade through all the trials and tribulations of watching someone die? I just don't know anymore. This disease (alcoholisim and liver disease and hep c) is not only eating my father alive, but its making the people around him exhausted, sad, and on top of it question themselves and who they are or who they want to be.

It's a sad sad way to go.

thanks for all your continued support.

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 5/5/2007 1:10 PM (GMT -7)   

hi marisa, sad

 what your feeling is normal, your so very tired of seeing your father wast away and suffer a horrible death who wouldnt feel that way i know i did. i thought i was a horrible person. to any person who understands this and see it first hand would feel the same way you do. after six months on a dead run with my father i was a real mess i needed two months rest to try to get back to something normal. and now i have to deal with some of the medical bills and the house had to get a lawyer. but at least hes not suffering anymore thats the only way i can look at it and deal with it. just ask the dr what he thinks and how long he thinks he has left i,m sure he would have some kind of idea, and maybe you and your sister could put your heads together and come up with something. i had a dr tell me that cirrohsis was one of the most horrible death. please do not feel like a bad person at all i,m sure that everyone in this forum will tell you the same thing. have you tried talking to hospise? they were a great help for me. i only used them for a very short time. my husband told me that i was grieving even before i lost my father, and some of it is he was my only parent left and when he passed you kind of feel alone really alone like you have nobody else but i did. here is something i want to share its called falling apart,

i seem to be falling apart. my attention span can be measured in seconds. my patience in minutes. i cry at th drop of a hat. i forget to sign checks. half of everything in the house is misplaced. feeling of anxiety and restlessness are my constant companions. rainy days seem extra dreary. sunny days seem an outrage. other people,s pain and frustration seem insignificant. laughing,s, happy people seem out of place in my world. it has become routine to feel half crazy. i am told i am a newly grieving person.

anonymous

i felt this way before i even lost him. i keep this on my fridg i read it almost everyday to remind me i,m not crazy. good luck to you and your family my thoughts and prayers are with you. eyes eyes eyes eyes

annette

 

 

 

 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/5/2007 2:23 PM (GMT -7)   
Marisab, thanks for the links! You learn something new around here every day. I do have moderately severe osteoarthritis, and also osteonecrosis (which is a disease where the bone dies, found in heavy drinkers and users of Prednisone.) I stopped drinking nearly 21 years ago, and diagnosed with ON 5 years ago--so who knows?

I remember speaking to a P.A. prior to my first hip replacement, and she urged me to try hep C treatment again. She said death from end-stage liver disease was "not a pretty thing." I do expect to undergo treatment once I recover sufficiently from the liver surgery.

I think what you are feeling is normal. I've watched cancer caretakers about go crazy with the length of time their loved ones are so very ill. It takes a great toll emotionally and physically. I agree that the doctor and also hospice should be able to give you some insight as to how much longer your dad has. The will to live is the strongest emotion, and I think that some really hang on beyond the point that you would think they would go. Sometimes they need someone to tell them it's okay to let go. You might consider telling your dad, when he is lucid, that if he's tired it's okay to let go. Hospice should be able to help you with this, too.

My thoughts and prayers are with you.
Connie

marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/5/2007 2:39 PM (GMT -7)   
Hi guys....thanks for your replies.

We have asked nearly everyone around us....doctors...nurses...etc "how long does he have" and no matter how bad the current episode, or whats going on we are almost ALWAYS told 3 week to 6 months. about 6 months ago, one doctor said while he doesn't like to give a time frame, he thought my Dad had at most 3 weeks. At that time we got his financial matters in order, etc.

This time the doctors (A new hospital, new round of docs) say who knows, maybe 6 months to a year but he will never leave the hospital or nursing home where he lives. None have given us a good time frame. Everytime his symptoms seem totally unbearable, like this past one with internal bleeding....he always stabalizes....sometimes he is "stable" (stable for him) for a week, a day or a month. But he is always very ill. It just depends on how serious each episode is. Soemtimes its the internal bleeding, sometimes its been he's rushed to the hospital because he says he can't breath, sometimes its the swelling or because he has not gone to the bathroom in days...it's usually a different symptom each time or ones we have gone through before getting worse.

Like I said before his body is like two different bodies put together. 100% Skeleton up top and bloated on the bottom.

The newest development yesterday is his "butt bone" (I guess?) is almost pushing through the skin. He is so thin in parts that are not swollen and has been in a bed so long the bone is like pushing out, he also has wounds all over his body that bleed. I understand why this is one of the worst ways to die.

thanks for your words, thoughts and time to write me. I share it with my family and they are comforted knowing we arent alone in having gone through this.

marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/5/2007 8:32 PM (GMT -7)   
Hello everyone.

I just wanted to update everyone here since your words have been a great help to me.

My sister and I have now told the doctor we want to stop all treatments on my father. They have so far been giving him all kinds of drugs and antibiotics to keep him alive but we want this to stop so his suffering will be over.

The doctor thank god, understands and agrees. He agreed and all my dads antibiotics and stuff were stopped yesterday. We also asked him to give him more pain medication IF that will make him more comfortable, and the doctor agreed and he upped his dosages of that so he can be comfortable. They syphoned (spelling?) 6 LITERS of fluid out of his stomach today though, but that is part of keeping him comfortable because if they hadn't he would suffocate to death. So he is still getting any and all treatments that are geared towards comfort and peaceful exsistance but nothing to prolong his life such as antibiotics. I am so thankful the doctor agrees.

I will continue to update you guys. thanks everyone

Marisa

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 5/6/2007 7:15 AM (GMT -7)   

 good luck and you all hang in there marisa and family, this is what we did with my father, was the best thing for everybody, when there is no hope then you have to let go as hard as it will be most times its the right thing to do. as long as the drs agree. do not second guess yourself because you know hes not going to get any better. making him comfortable right now is the most important thing and being there with him. even if hes in and out he knows your there. my thoughts and prayers are with you and your father.

myfathers child

annette


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/6/2007 11:21 AM (GMT -7)   
Marisa, I am glad you and your sister took that step and that the doc agreed. I'm wondering if your dad has a living will--one naming you or your sister as health care surrogate? Stopping measures that are only keeping him alive (just existing) would also be necessary for hospice, I believe.

Coccix bone is what you were describing (also known as "tail bone.")

Gentle hugs,
Connie

acaisha
Veteran Member


Date Joined May 2007
Total Posts : 1491
   Posted 5/7/2007 9:40 AM (GMT -7)   
Marisa, I was reading the thread and i want to say bravo for having the strength and courage to support your father and be there for him dispite how difficult it is for you. I know most would say of course I am hes my father but you would be amazed with how many people just find it too difficult to deal with and turn away, especailly from diseases like HepC or HIV where such a stigma exists. Also I wanted to say I hope you find no guilt for your wishing your father would pass on and his suffering to end. That is called empathy and being humane, to recognize when enough is enough and when someones suffering is just being prolonged needlessly. I think you are making a wise and brave choice to end his treatments and just let him pass on with the least amount of discomfort possible.

I know right now it must be scary for you knowing your mother had HepC as well, but as you said in the first post your father never took care of his illness and ignored not taking the steps to protect his liver and infact drinking made it worse. From what you also posted it seems your mother has taken a more proactive path and is working on maintaining her liver health and will likely far alot better then your father did, so please try not to see your mother in his place, we cannot predict the future and new treatment options are always a possibility.

I know your concern right now is on your father and his situation but please try to take care of yourself and your sister as well, take time for yourself and keeping your mind and body healthy. Hang in there and please keep us all posted.

hugs
HIV/AIDS and HepC Education/Prevention Coordinator in Canada
Suffers from Bi-polar and asthma, Partner with Depression and Gender Identity Disorder, Son with ADD and epilepsy


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/7/2007 9:52 AM (GMT -7)   
Hello

Acaisha, thanks for your words and thoughts. Yes, my Mother takes a VERY proactive approach to her HepC. Today she is having her endoscopy (i think thats what it is) where a camera is placed down her mouth, into her large intestine to check the main vein going to the liver to make sure its clear and in good health so she can start her treatments. But years ago she changed her entire diet and eats a LOT of juiced veggies and fruits, takes supplements known to be good in HEP C cases amongst other things.

My Dad does have a living will....all his financial asests have already been moved to us, and as for a living will for his care, it is in the power of my step mother who I am in agreement with all the time about the choices for his care. They are not "together" or married anymore but I still consider her my step mother and she takes care of a lot of his affairs for him. She is my sisters mother.

Anyways I will update again tonight as the doctors, a couple nurses and my family are having a meeting today about his care and moving him to palliative care/a hospice.

Marisa

acaisha
Veteran Member


Date Joined May 2007
Total Posts : 1491
   Posted 5/7/2007 10:12 PM (GMT -7)   
Sounds like your Mother is doing all the right things for her health. I would again try not to think she might have the same outcome it will just add to your stress. HepC is never predictable I have know many people who have had way different outcomes with the illness.

Again take care and keep everyone posted, know our thoughts are with you.
HIV/AIDS and HepC Education/Prevention Coordinator in Canada
Suffers from Bi-polar and asthma, Partner with Depression and Gender Identity Disorder, Son with ADD and epilepsy


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/8/2007 7:42 AM (GMT -7)   
Small update....

After a meeting about my fathers care yesterday, they will be moving him back to his nursing home and catagorize him as in palliative care and they worked out some pain medications and such.

My father is sometimes in denial, sometimes in agreement and sometimes totally against us lately. The day before yesterday he was really grumpy at everyone and gave my sister a list of things he needed from the store...they of course, were all crazy things....a fire exstinguisher (sp) brown pants, a plank of wood....and when you tell him he doesn't need these things or you can't get them, he gets pretty pissed!

During the meeting he seemed to agree he was dying and agree with the choices about his care. Hopefully it works out and he can get some real rest.

Thanks again everyone. I really enjoy reading this forum now
Marisa

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 5/8/2007 7:34 PM (GMT -7)   

Hello Marisa, I do know how cruel this disease is, it is just as hard on the family as it is the patient, from a emotional stand point. I know the decision's are not always easy, your feeling's are quite normal. I went through 2 years of the awful disease with my husband, he is now doing well after a transplant. My Mother, died from throat cancer 2 years ago, another horrible disease with much suffering. I was Praying to God for his will to be done for her, I took care of her for almost a year. I thanked the Lord when she passed away, the suffering was gone. I still miss her but she is in a much better place. I'll put you and your family in my prayers!

((((Big Hugs))))

Teresa


acaisha
Veteran Member


Date Joined May 2007
Total Posts : 1491
   Posted 5/16/2007 9:43 AM (GMT -7)   
Hi marisab, just wondered how everything is going for you and your family. My thoughts are with you.
HIV/AIDS and HepC Education/Prevention Coordinator in Canada
Suffers from Bi-polar and asthma, Partner with Depression and Gender Identity Disorder, Son with ADD and epilepsy


marisab
New Member


Date Joined Apr 2007
Total Posts : 14
   Posted 5/18/2007 7:57 PM (GMT -7)   
Hello thank you for thinking of us.

My Dad now has a sepsis infection pretty badly. You cannot touch anything in the room or him because I guess it can pass??? Not sure. ANyways it says bio hazard all over the place and bio hazard bags everywhere.

We talked to the hospice nurse and she really believes it will only be a couple days now. She said without being treated, sepsis works fast and shuts you down.

He is also WAY more mentally out of it. Like really bad. He has no idea whats going on and talk about things that make ZERO sense now instead of like before when he was making like 25% sense some of the time. He tries to get us to do crazy things like warm up his feet with the remote control....stuff like that.

Anyways so I am just living, plodding along.....wishing my fathers life wasn't ending up like some sort of animal slowly dying that doesn't get help. But this is what it comes down to when you make horrible horrible choices for your life when you drink (I realize some people never made that choice and are living and dying with liver problems for reasons they didnt create though!!!!!)

thanks for asking about my dad...i will update soon
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