Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 <<Hi! I've never joined a group over the internet, and I'm also a " computer illiterate! " so please bear with me! My name is Norma, and I have had spinal problems since I was sixteen. ( I broke my back in three places )I am forty-something now and currently healing from a cervical fusion, which took place in June. I would like to hear from people who also share similar experiences and learn how they cope with their pain.>> Hi Norma, Welcome to the group! You broke your back when you were 16? WOW....that is a lot of years to be in pain and you could probably teach us all how to handle it! This is a good group and with lots of different conditions and troubles but we all have one thing in common....PAIN. We support & help each other and there is usually someone here who can answer almost any question that comes up. I have mostly lower back & leg pain and terrible knees. I have a spinal cord stimulator for the leg pain, still take meds for the back pain, and go to the Y three times a week to work out in the pool. Those things and this group are what help me cope and I hope you find the same help here as I have. Take care and tell us more about yourself....are you able to work? family? Peace, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2003 Report Share Posted December 28, 2003 Sherrie, that seems to be the general consensus from everyone that is writing me. I think I will really see if there is something out there or work twice as hard to get some more weight off to see if that will relieve the pain. Marge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Welcome Kaydo! Glad you found us! Where are you located?? We do have members all over the country... all over the world for that matter!!! Angel Mom to 11, Mosaic Down Syndrome/Hirschsprung's Disease Lance 15, Tyler 12, 9, Jaeda 8 and Shayne 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hello Kaydo, So glad that you found us. My daughter Ariel is also 10 years old. Where are you located????? Mom to Ariel 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hello Kaydo, So glad that you found us. My daughter Ariel is also 10 years old. Where are you located????? Mom to Ariel 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Hi Bonnie. I am in the same boat as you but I am just finding out I have an enlarged thyroid. I have an ultra sound test next week to find out about it. So I would also love to hear the answers to all your questions also. I do believe I have something going on in my throat and its been going on for years. Its seems I have a hard time swallowing. Like something is hung in my throat. I do think what ever it is its causing me ear problems. I have fluid on my ears all the time it seems. I have been treated for hypo thyroid for years and I just found out that I am Hashi. Here are some of my main symptoms at this time. Tired all the time. Cant get to sleep at nights Ear problems Racing heart anxiety Hot all the time. cant deal with the heat. That's about all the questions I can answer at this time. I have no special diet I am following right now. I will tell you I was on Weight Watchers about 6 months ago and I did lose a few pounds but there were no changes in symptoms. I still had them while on the diet. They did change me to Armour about 6 weeks ago and my racing heart and anxiety has calmed down but that's about it. I do think maybe with this Armour I am on the right track but just not found that right dose. New Member Hello, I just joined the group and thought I would dive right in with some questions. I have a thyroid nodule that has been growing at the rate of 1mm a year for over 10 years. It's now about 3cm. I had it biopsied at a major medical center and they said it was definitely noncancerous. I also have Hashimoto's thyroiditis. For about two years I actually feel something in my throat. The feeling is hard to describe. Sometimes it feels like a solid thing in my throat. Sometimes it just feels like a tightness. My questions are: 1. For those of you who have Hashimoto's thyroiditis what are your symptoms? 2. For those of you who have a thyroid nodule - can you feel it? 3. What nutritional regimen has worked for you with Hashimoto's? Has anyone followed a nutritional regimen that has caused their nodule to shrink? 4. What alternative medicine regimens have you found to be effective with Hashimoto's? With shrinking a thyroid nodule? 5. I am thinking about surgery. The mortality rates in teaching hospitals seem to be the lowest, but you would have a resident etc. on the team operating on you. For this reason is it better to not have thyroid surgery at a teaching hospital? 6. If you have Hashimoto's, would you take a multivitamin with iodine? How about taking a multivitamin that has iodine with a thyroid nodule? Please don't be intimidated by the 6 questions. Pick your favorite to answer. Sincere thanks for the information. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 I'm starting treatment in November. I feel physcically weak all the time, too. Or did you mean too weak to quit smoking and eating? I don't have the smoking problem, but I sure like my food. They want me to lose weight while waiting to go on treatment. It's sure not easy. I try to remember my skinny days and try to psyche myself up to look like that again, as less weight definitely means healthier body. Sometimes it's easy to think oh, what's the use, it's too late. But it's not over til it's over, and each day is a chance to try again. Colleen karl krainick wrote: Hi everyone, My name is Pam, I was diagnosed w/hep " c' two years ago. Went through the interferon for six months, it didn't take, then they did a liver biopsy and found I had cirrhosis and my liver would fail in six to nine years. My options are try the interferon again, or just wait to get on the list for a transplant. The problem is, I'm overwieght and a smoker. I've been trying to quit and lose wieght, but it's like I'm a slave to cigs. and food. I feel like I'm the only one in the world to weak to save my own life. I have family, but I don't like talking to them about it, because I think it upsets them. So I thought I'd try a support group. Hope I don't sound too whiney about it. Thanks for listening. Pam --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Wow. Well, now , I am impressed. You see, I have a 21 year old daughter, and she never askes me anything. Your dad is a lucky man. Liver disease is no picnic, and to have his kid wanting to help, well that is heartwarming. Your question about the MELD score, well, the answer is yes, it can go down. Someone here wrote just a couple of days ago the their MELD had gone down, a lot. That can be nerve wracking, because a higher MELD score gets the organ, but it also means a worse prognosis. It can go up, and down and often does. We had someone recently who hit a home run, because her MELD score went off the scale. Way off the scale (6 to 40) But you have no idea how much farther ahead of the game you and your dad is compared to most who join this group. They come here having been told by a small town doctor or clinic that they have cirrhosis, but have no idea what it means, and then we have to convince them to get to a hepatologist for a transplant eval as fast as possible, and they dont seem to understand that a person needs to get on that list , and get on it soon after decompensation. There are a LOT of quacks who tell folks that they don't need a transplant right now as if getting one is easy, and when the time comes, then you can " just get a transplant " . Well, I doesn't work like that. There are hoops to jump through. But thankfully, your dad has that done with, or is working on it. My best friend died of end stage liver disease, and it effectively crushed me. Broke my heart in two. There might be things in her story that might answer some questions you have. Maybe not, anyhow, it is here- http://robertwalkingeagle.googlepages.com/home I hope your dad feels better, and you get how to tell the others all figured out. love, Bobby New Member > > Hi, my name is and my dad just sat me down today and informed me > that he has hepatitis C as well as stage 4 cirrhosis. He is a > hemophiliac, and the doctor believes he contracted hep C from a bad > blood transfusion in 84, before they tested blood for hep c. He is at a > MELD of 16 and on the transplant waiting list. His cirrhosis just now > was found because of ascites, he did not know he had hep C until a few > months ago. He is devastated because he has had Hep C for 20 years and > did not know about it, he feels he would have lived his life a whole > lot better. For 20 years he has been an avid drinker, which obviously > has helped the deterioration of his liver. He has quit before and he is > adamant about quitting again (obviously) but he is as scared as I am. > My siblings are 2, 10, and 14. The doctor informed him also that if he > does not receive a liver, he has 4 to 6 years to live. I am scared and > I want to be there for him and find out as much information as > possible. I have many questions to ask and hope to learn a lot from > this group! > > > <!-- > > #ygrp-mkp{ > border:1px solid #d8d8d8;font- family:Arial; margin:14px 0px;padding: 0px 14px;} > #ygrp-mkp hr{ > border:1px solid #d8d8d8;} > #ygrp-mkp #hd{ > color:#628c2a; font-size: 85%;font- weight:bold; line-height: 122%;margin: 10px 0px;} > #ygrp-mkp #ads{ > margin-bottom: 10px;} > #ygrp-mkp .ad{ > padding:0 0;} > #ygrp-mkp .ad a{ > color:#0000ff; text-decoration: none;} > --> > > <!-- > > #ygrp-sponsor #ygrp-lc{ > font-family: Arial;} > #ygrp-sponsor #ygrp-lc #hd{ > margin:10px 0px;font-weight: bold;font- size:78%; line-height: 122%;} > #ygrp-sponsor #ygrp-lc .ad{ > margin-bottom: 10px;padding: 0 0;} > --> > > <!-- > > #ygrp-mlmsg {font-size:13px; font-family: arial, helvetica, clean, sans-serif;} > #ygrp-mlmsg table {font-size:inherit; font:100% ;} > #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} > #ygrp-mlmsg pre, code {font:115% monospace;} > #ygrp-mlmsg * {line-height: 1.22em;} > #ygrp-text{ > font-family: Georgia; > } > #ygrp-text p{ > margin:0 0 1em 0;} > #ygrp-tpmsgs{ > font-family: Arial; > clear:both;} > #ygrp-vitnav{ > padding-top: 10px;font- family:Verdana; font-size: 77%;margin: 0;} > #ygrp-vitnav a{ > padding:0 1px;} > #ygrp-actbar{ > clear:both;margin: 25px 0;white-space: nowrap;color: #666;text- align:right; } > #ygrp-actbar .left{ > float:left;white- space:nowrap; } > .bld{font-weight: bold;} > #ygrp-grft{ > font-family: Verdana;font- size:77%; padding:15px 0;} > #ygrp-ft{ > font-family: verdana;font- size:77%; border-top: 1px solid #666; > padding:5px 0; > } > #ygrp-mlmsg #logo{ > padding-bottom: 10px;} > > #ygrp-reco { > margin-bottom: 20px;padding: 0px;} > #ygrp-reco #reco-head { > font-weight: bold;color: #ff7900;} > > #reco-grpname{ > font-weight: bold;margin- top:10px; } > #reco-category{ > font-size:77% ;} > #reco-desc{ > font-size:77% ;} > > #ygrp-vital{ > background-color: #e0ecee;margin- bottom:20px; padding:2px 0 8px 8px;} > #ygrp-vital #vithd{ > font-size:77% ;font-family: Verdana;font- weight:bold; color:#333; text-transform: uppercase; } > #ygrp-vital ul{ > padding:0;margin: 2px 0;} > #ygrp-vital ul li{ > list-style-type: none;clear: both;border: 1px solid #e0ecee; > } > #ygrp-vital ul li .ct{ > font-weight: bold;color: #ff7900;float: right;width: 2em;text- align:right; padding-right: .5em;} > #ygrp-vital ul li .cat{ > font-weight: bold;} > #ygrp-vital a{ > text-decoration: none;} > > #ygrp-vital a:hover{ > text-decoration: underline; } > > #ygrp-sponsor #hd{ > color:#999;font- size:77%; } > #ygrp-sponsor #ov{ > padding:6px 13px;background- color:#e0ecee; margin-bottom: 20px;} > #ygrp-sponsor #ov ul{ > padding:0 0 0 8px;margin:0; } > #ygrp-sponsor #ov li{ > list-style-type: square;padding: 6px 0;font-size: 77%;} > #ygrp-sponsor #ov li a{ > text-decoration: none;font- size:130% ;} > #ygrp-sponsor #nc{ > background-color: #eee;margin- bottom:20px; padding:0 8px;} > #ygrp-sponsor .ad{ > padding:8px 0;} > #ygrp-sponsor .ad #hd1{ > font-family: Arial;font- weight:bold; color:#628c2a; font-size: 100%;line- height:122% ;} > #ygrp-sponsor .ad a{ > text-decoration: none;} > #ygrp-sponsor .ad a:hover{ > text-decoration: underline; } > #ygrp-sponsor .ad p{ > margin:0;} > o{font-size: 0;} > .MsoNormal{ > margin:0 0 0 0;} > #ygrp-text tt{ > font-size:120% ;} > blockquote{margin: 0 0 0 4px;} > .replbq{margin: 4;} > --> > > > ____________ _________ _________ _________ _________ _________ _ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Welcome , God Bless you for helping your dad! I think every person is different as far as whether they want to answer questions about their illness. My dad didn't want to have to think about mom's illness, he is older and didn't want to have to learn about it all. I'm guessing your dad is pretty young still, he might be very willing to answer your questions. I'd give it a shot, and just see how he responds. There is a TON of info here and on the web concerning your father's illness. I was caretaker of my mother for her last 6 months of life. She was 74 and died due to cirrhosis. You can ask us anything and we will do our best to answer your questions or share a link that might be helpful. Pamela Re: New Member Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Rosy, I'm sorry to hear about your mother's condition. Have you asked the doctor how long he expects her to live? Some times we have to ask questions very directly. I don't think anyone really wants to say. I used the Child Pugh scale to give me an idea of my mom's life length, it placed my mom at 1-3 yrs, she lasted 6 months. But we don't know how long she was suffering from cirrhosis prior to her diagnosis. My mom was 74 and passed away 3 weeks ago from non alcoholic cirrhosis, she had a fatty liver 30 yrs ago, then mild cirrohsis, then took Rheumatoid Arthritis drugs, then broke her back, had a traumatic surgery that caused her liver to fail. Rosy, my experience (and I can only speak from that) is when the cirrhosis is advanced, albumin is low, and the diet is unable to sustain life, time is usually short. Even when my mom could eat she was so full from her ascites she couldn't eat much. More in the morning, less as the day went on. The liver wasn't able to process the food properly so it was just a matter of time before her body shut down. I cared for her for 6 months, the last 4 being a slow steady decline. How is your mom's appetite? Do you have Home Health or Hospice coming to help you? Are you the primary care taker for your mom? Are there other people around to help you? Does your mom have other health issues besides Lupus & Cirrhosis? Please ask questions here, we will do our best to help you understand her condition. There are many links in past posts that MaC, Bobby and others send that can be very helpful. I'm sorry, I know this is very hard. God Bless you! Pamela New member Hello to everyone. My name is Rosy and I am new here but I have been reading your messages for severeal months now. You all seem great! Well, my mom is very sick - she has had Lupus since 1994 and apparently it attacked her Liver so for about almost 2 years she has been with Ascites already and she just had her first SPB and spent 12 days in the hospital with 4.8 liters withdrawn of fluid. She has low albumin.. now it is 2.0 but it was 1.8 in the hospital. Can anyone tell me what to expect? How long does she have? Will she get SPB again? Her doctor does not say much... he just says she is stable. Not many explanations. She is 73 and very fragile, she is skinny at 110 lbs... she just goes from the sofa to the bed to the kitchen table... with help and a walker. Never had encephalopathy yet, thank god. Please help! Thanks. Rosy - Miami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Dear Pamela, First, I'm sorry to hear of your Mom's passing. I've lost both my parents, and, like you, took care of my Dad for the last year of his life. It was very rewarding, but I miss him. My Mom is gone 30 years, and I still think of her and miss her every day. In reading your note to Rosy, I noticed you said that your Mom had fatty liver 30 years ago. My best friend was just diagnosed with this (non-alcohol related), and I'm trying to help with how he should proceed. He is 34 years old and in otherwise good health, save needing to lose about 50 pounds. What I'm wondering is whether your mother made life lifestyle changes when she learned of the condition, or did it progress because she didn't make the necessary changes? I'm really worried about , and want him to do what's best for his body. The other issue you mention that concerns me is medication. is about to start strong antibiotics for 2 weeks for H. Pylori (a bacteria in his digestive system). The doctor said this wouldn't effect the liver. What medications WILL effect the liver if not antibiotics? Finally, I want to say to Rosy that I'm sorry about what your Mom is going through. I know firsthand how hard that is for we adult kids of the parents we love. Make sure you take care of yourself and keep your body and your mind healthy. I didn't always do this when I was taking care of Dad, and the stress took its toll. Be as much of a friend to yourself as you are to your Mom! One thing that you said really struck me. That your mother has lupus. 's mother had lupus and died from it at age 42. I sure hope not, but I'm wondering if may have it and it is effecting his liver. Is this something they would test for when they know you have fatty liver? Thanks Pamela and Rosie for sharing. God bless you and yours. Best, Dan --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Dear Pamela, Thank you so much for responding and for your words. As to your first question, yes when my mom was in the hospital this last time we asked the doctor but he kind of went around it and said that she was stable for now and that there was no way of knowing exactly. He always answers us that way. My mom was not present when we spoke though. What is the Child Pugh Score? How can I find out my moms? Again, I am so sorry about your mom. This is the hardest thing in the world to go through. It hurts so much!! I have heard that when the albumin is very low and also cholesterol as in my moms case that it is very bad. She does have good kidneys as her creatinine and bun ... all others are ok for now. Her spleen is normal in size from the MRI results 2 weeks ago but I know that that does not matter that she can still get other complications like the SPB of which she might get again. We still try to hang on to some hope and to the things that sound like they are good, like what I previously mentioned but I know its all useless as she is going to go eventually no matter what and that kills me. We give her Immunocal which has helped her so much with her bloodwork in so many ways. You had asked about her appetite and it is pretty good so far, she eats very healthy. I make her tofu .. I have gotten so creatvie with that. Also she has basically beans, rice, spaghetti without barely any sauce at it has salt.. sometimes just olive oil and oregano. And I make her corn tortillas with tofu.. and whey protein, yogurt.. well the list is long. No matter what happens, we have to feel that we did everything in our power to help her. As to being the primary caretaker, yes but my sister helps out also.. we take turns at night, one night her and one night me but during the day - it's me almost all the time. Sometimes I feel frustrated and feel like running out of the house- it's my dad, my mom, my grandma. Well, I left my job about a year and a half ago because my dad had Nasopharyngeal cancer and had to go through chemo and radiation so it was tough because my mom was a bit sick too, not as bad as now but she could not handle everything so I made a decision that affected my life completely.. no money, no insurance, and I also lost my second marriage as he stated that I was not around and only taking care of my dad. So my life has been very sad, difficult and frustrating for almost two years now but I did what I had to do. Just as I was going to try to go back to work about 7 months ago.. my mom had a stroke due to taking cortisone.. on the 5th day her BP went up to 210/104 when it happened. My sister and myself were against her taking it because of her liver and because last time she took it she felt really bad but she did not listen to us. It affected her left side but she is doing great in that aspect.. she walks with a walker and uses her left hand but not the same as the right. As to Hospice, no we don't have it. Since she does not know how bad she is we don't want to scare her.. anyways at the Hospital she declined a Hospital Bed for the house twice.. when she had the stroke and now when she was in the hospital for SPB. She says it depresses her and reminds her of a hospital so a Hospice I think would sadden her way to much. For now I think she is ok with only us here. Thank god she is in no pain, other than stomach aches every now and then. Thank you so much Pamela and I look forward to hearing from you, it's nice to have someone to talk to that knows what your going through and can help you. Rosy Ohana5 wrote: Rosy, I'm sorry to hear about your mother's condition. Have you asked the doctor how long he expects her to live? Some times we have to ask questions very directly. I don't think anyone really wants to say. I used the Child Pugh scale to give me an idea of my mom's life length, it placed my mom at 1-3 yrs, she lasted 6 months. But we don't know how long she was suffering from cirrhosis prior to her diagnosis. My mom was 74 and passed away 3 weeks ago from non alcoholic cirrhosis, she had a fatty liver 30 yrs ago, then mild cirrohsis, then took Rheumatoid Arthritis drugs, then broke her back, had a traumatic surgery that caused her liver to fail. Rosy, my experience (and I can only speak from that) is when the cirrhosis is advanced, albumin is low, and the diet is unable to sustain life, time is usually short. Even when my mom could eat she was so full from her ascites she couldn't eat much. More in the morning, less as the day went on. The liver wasn't able to process the food properly so it was just a matter of time before her body shut down. I cared for her for 6 months, the last 4 being a slow steady decline. How is your mom's appetite? Do you have Home Health or Hospice coming to help you? Are you the primary care taker for your mom? Are there other people around to help you? Does your mom have other health issues besides Lupus & Cirrhosis? Please ask questions here, we will do our best to help you understand her condition. There are many links in past posts that MaC, Bobby and others send that can be very helpful. I'm sorry, I know this is very hard. God Bless you! Pamela New member Hello to everyone. My name is Rosy and I am new here but I have been reading your messages for severeal months now. You all seem great! Well, my mom is very sick - she has had Lupus since 1994 and apparently it attacked her Liver so for about almost 2 years she has been with Ascites already and she just had her first SPB and spent 12 days in the hospital with 4.8 liters withdrawn of fluid. She has low albumin.. now it is 2.0 but it was 1.8 in the hospital. Can anyone tell me what to expect? How long does she have? Will she get SPB again? Her doctor does not say much... he just says she is stable. Not many explanations. She is 73 and very fragile, she is skinny at 110 lbs... she just goes from the sofa to the bed to the kitchen table... with help and a walker. Never had encephalopathy yet, thank god. Please help! Thanks. Rosy - Miami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Dear Dan, First of all, Hello! Second, I am so touched my your message and I thank you from the bottom of my heart. I don't really have anyone to talk to, well my sister and brother but you know sometimes its not the same. You brought tears to my eyes while I read your message. I will try a bit harder to seperate some time for myself but it is difficult to do, specially in a house like this one - my dad is sick, my mom is very sick, my grandma is really old (96) but not sick just can't walk well and I have a daughter and my sister has 3 kids so its really hectic, busy and crazy here! (Patience is not always easy here) I am not used to all this even though I have been here (living w/parents) fully since June of last year when I got seperated and well later divorced but prior to that I was used to a quiet life so on top of all the saddness, stress, and the day to day, the noisiness sometimes even the kids running around and fighting and screaming, the lack of privacy.. some of those things just make me lose it (at times) I just want to go away. I don't do it but I feel it. Even with my mom, sometimes she frustrates me and then I always feel guilty about feeling that way. Sometimes she misunderstands what I say and specially when I have other things going around in the house, cooking, cleaning, my dad which does not hear well at all, the doorbell, the phone, kids...Is it bad to feel that way? I will try to find the video and book that you mentioned below, thanks for the info. I am very happy that I found this group - you, Pamela... all of you are great people and you help a lot in these times when one needs someone to speak to and also advise and support. I have also read touching stories like that of Arvis which was so sad and beautiful that she had so many around her that cared and loved her. Thanks again and hope to hear back from you soon, Rosy Dan Nigro wrote: Rosy, Your note to Pamela struck a chord with me, and I just wanted to offer you some ideas from someone who has been there. Your mother is so fortunate to have you, and that's why this message is about YOU. >> she is going to go eventually no matter what and that kills me. << Of course, this is true of all our parents. The day does come, and we can't stop that. So, the quality of our time with them is the most important thing. As much as you concentrate on the health aspect, concentrate on creating quality time with them. Whatever it may be that can bring some sense of normalcy to the situation: Playing cards, renting funny movies, doing craft projects together, going to seminars at the library on subjects you both might find interesting, reading the same book and having discussions about it. Anything that creates NEW memories is what you need to bring to your time with them. In the last year of my father's life, we spent time on the boardwalk at the beach playing cards, walking the boardwalk, went to movies, went out to eat, talked for hours on end, and I even made videos of my father talking about his childhood, which he really enjoyed. And during all of this, I was aware of how fortunate I was that I realized how sweet it was to have this time together. I didn't concentrate on the idea that he might die, but concentrated on staying in the moment and appreciating every second that we could share together. I cherish every moment of that last year. Our relationship and our friendship came full-circle, and my life is so enriched for it. Yeah, I still had to deal with doctors and hospitals and medications, but these good moments are what will remain with me in my heart forever. And I know if my father is out there somewhere, he appreciates that I made this effort. I think doing these things together helped keep him from becoming too depressed, and gave me a break from the horrors of illness. >> And I make her corn tortillas with tofu..and whey protein, yogurt.. well the list is long. No matter what happens, we have to feel that we did everything in our power to help her. << All you are doing is wonderful and so admirable. You, like I, go into caretaker mode when you see someone you care about needs it, to a fault perhaps. I also went to great pains to cook healthily for my father, and when I had to hire an aide, to create a very specific menu tailored to his dietary restrictions. I do think the quality time spent together, and the time spent making sure his health needs were met as well as I had the power to make possible, lengthened the good quality of his life, if not his life itself. I have no regrets, but one thing I want to say to you is that you have to be very careful to take as good care of yourself as you are taking care of your mother. If your health and life become taxed, you will become ill and will be of no use to yourself OR your mother. Make it a point to make time for yourself. Catch up with friends, pamper yourself by indulging in something you enjoy but haven't made time for. Learn to meditate. It will give you more strength to do what you feel you want to do for you mother. >> Sometimes I feel frustrated and feel like running out of the house << I completely identify with this, and recall one night shortly before my father went into the hospital for the last time when he called to me in the middle of the night, and as I stood there asking him what was wrong, I suddenly found myself on the floor. I was in a state of sheer exhaustion and reached my limit of physical and emotional stress. Make sure you have whatever resources YOU need to stay as healthy as possible physically AND emotionally throughout this ordeal. Do NOT go through this alone. See a counselor if you are feeling unwell. You MUST take care of yourself and MUST have support. Your mother may very well be around for a good long time. She will want to see you experiencing enjoyment in your life. Give her that gift! >> I left my job about a year and a half ago...I made a decision that affected my life completely.. no money, no insurance, and I also lost my second marriage << I identify with this as well. I did not leave a job, but was working for myself and allowed my business to quickly fall by the wayside when my father became ill, choosing to concentrate on doing whatever I could to " save " him and make sure he was cared for in every way imaginable. I don't have regrets, but would do it slightly differently if I had the chance to do it again. I'd have taken better care of myself and my own life. Always a really responsible guy with great credit, my finances quickly fell into ruin, and though I was aware of the repercussions of my decision, I felt I had made a sound choice that would allow me to sleep at night. My Dad is gone 3 years now, and I am still struggling financially, and thus am hurting emotionally as well. My father would not be happy that my " sacrifices " resulted in a lot of misery for me and never would have approved had he known what was going on at the time. So, I say to you as one who's been there: Do not allow your life to fall any deeper into a state of despair and dysfunction. Talk to professionals--psychologist, financial planner, nutritionist, etc.--to learn how you can maintain your own life, health, finances, relationships, while taking care of your mother as well. And don't wait, do it NOW. Sometimes my state of misery was so deep that I wondered if I would make it another day. The situation took its toll on me, aged me, and hurt my life in various ways. I am still recovering. So, I urge you to do whatever necessary to take care of yourself. You only have a certain degree of control over what is going to happen with your mother. Don't destroy yourself in the process. I recommend a very uplifting video I recently saw by Louise L. Hay called " You Can Heal Your Life. " See if you can get your hands on a copy--it's available right on Amazon.com. It has brought me comfort. There is also a book by the same name. I also recommend " The Power if Intention by Dr. Wayne Dyer. This material can help to teach you how to change your thoughts to become more healthy in many ways. If you are healthier and happier, that will be the greatest pill your mother could take. God bless you and your Mom. You couldn't give her a better gift than having her see that your life is full and rich, so give her that gift by being a friend to yourself. Sorry so long, but I really felt compelled to help save YOU while you're trying to save your mother. Best to you and yours, Dan --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Hi there , Hannah. My name is Bobby. I have end stage liver disease as a result of what I considered normal drinking. Well, I guess a 12 pack a day isn't so normal after all. Welcome to this wonderful group. We are a bunch of people who have this disease, or are taking care of someone who has it or maybe both. My best friend in the whole wide world died September 3rd 2006 from this, and I found out through a liver biopsy two months later that I also have it. Your concern for your father is not unfounded. Cirrhosis is the end stage of all liver diseases. There are two types of cirrhosis, one being " compensated, (early cirrhosis), " and the other being " decompensated(late, symptomatic). " Your father has " decompensated. This is when the liver begins to fail, and usually when symptoms rear thier ugly head. Ascites (uh-sigh-tees) is the belly swelling and bleeding varicies (vair-uh- sees) are varicose veins in the esophagus caused by high blood pressure in the portal vein. That is a vein that drains from the gut to the liver. The liver is full of scar tissue so blood cannot flow like it should, and the blood pressure becomes elevated. Since your father is getting a transplant eval, he is far far ahead of most people who join this group. You are the second young woman in the last two weeks to join with a sick father, and her father is getting care for his liver disease as well. The only treatment is a transplant, and some people do not know that they must jump on a moving merry go round, and do it quick in order to get in the line for a liver. As my gastro interologist calles it, a " Freesh Livah " . He is from south Africa. Good luck to your father, and thank you for joining, and welcome to our group, love, Bobby, moderator, LCS at Yahoo. P.S. I have a blog, please visit my liver there and leave a comment, you'll make his day. :-) http://billybobswildride.blogspot.com/ New member Hi all, I am just now learning about this yahoo group and I am extremely interested in learning about how this yahoo group does work. My Father who is 63 years old was rushed to the hospital 5 weeks ago because he was throwing up blood. I live in Texas and my family live in Rhode Island so you can imagine how fast I got on the next plane. Well comes to find out that my Father has cirrhosis of the liver and he has had it for quite sometime and he did not even know. The first symptom he had was this past Janurary and it was the swelling of his belly and he ignored it because he has such a fear of doctors. So, the belly started to go back down quite a bit but then shortly there after is when my Mom found him on the floor with all the blood he had thrown up. So, at the hospital he had to have 6 blood transfusions because he had lost 6 pints of blood. The doctors said it is amazing he is alive today. I know someone is watching over him!!!! So basically they told him that without a transplant he will not live. So, we are waiting to meet with the Specialists in Boston to get him on the list. Can anyone please tell me if they have any information on what we should expect? Also, does anyone know anything about the living donor option? I was thinking that my sister or I could also do that as well for him. Oh also my Dad drank alcohol but not anymore than the average person and they are saying it most likely is due to drinking. Don't they have to test the liver with a biopsy to make that statement true? I am extremely worried that I a going to lose my Dad. He has never been this sick before and now I feel that he is dying and it is a nightmare that has come alive. Any input would be GREATLY appreciated. Thank you so much and God Bless. ------------ --------- --------- --- You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Hi , Welcome to the group! Alana > > hi just joined the group Quote Link to comment Share on other sites More sharing options...
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