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End stage liver disease.. need some support, please

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Posted 8/2/2008 10:17 PM (GMT 0)
Hi everyone, I am so glad I found this forum. I have been trying to be strong and say everything will be OK and I know positive thinking is a miracle in itself, but I need people to talk to that are going through what I am or have a loved one that is or was..
Anyways about 15 months ago I had some blood tests done and was told I had Hep C. Then I was told that I had gall stones and needed my gall bladder out....so I did. My surgeon then told me I needed to go to a liver specialist because my liver was basically gone. 2 weeks after having the gall bladder surgery I started blowing up like a balloon and was in so much pain. I kept calling my doctor and also the surgeon. Finally the receptionist told me to go to the ER which I did. After spending the day there, they "drained" me and got almost 4 liters of fluid out of me. This was the beginning. I was suddenly left in the small town I live in without a primary Dr. Luckily the one that replaced mine after a while is knowledgeable about liver disease and sent me to a gastro Dr. I began all the testing and then my gastro Dr's office closed down due to the Hepatitis C scare in Las Vegas, NV. So here I was having to get drained every 2 weeks and really not understanding anything, stuck without a Dr until May 29th of this year when I went to a Liver specialist. After some more testing he told me I have end stage liver disease with hepatic encephalopathy, muscle wasting, esophageal varices, intractible ascites, hypoalbuminemia, elevated bilirubin, hep c, and ongoing symptom complex. He sent me to have which seemed like endless tests, CT's and I feel like everything has been tampered with but my big toe. I go to San Francisco for a transplant evaluation at the end of this month. The only thing I haven't done yet is see a psychiatrist. I am having a hard time finding one that takes medicaid and is seeing new patients. If it wasn't for the internet i would not know anything of what I have so finding this forum is lifesaving to me. This is very bad wording but it is nice (you know what I mean) to find other people that are experiencing what I am. I am really alone on this. My husband supports me but doesn't understand what is REALLY going on. He takes me to all my Dr appointments but doesn't want to really hear about anything. He doesn't do Dr's and or hospitals well. He knows i take alot of medication. He is retired and on SSI. We have a little hobby shop to which he practically lives in. We don't talk about about my disease. When I try to he changes the subject. I have a 16 and almost 18 year old sons that are still living at home. The 18 year old seems to realize how sick I really am. My 16 year old does not have a clue. he is too busy with life and sports etc. I have a 31 year old daughter who lives in Calif. She seems to know somewhat of what I am going through. I have a 26 year old Marine son who lives in Calif. who like my 16 year old seems to live in another world.
So now after all my typing babbling, I just want to say that I now feel blessed to find this group.
I now don't feel alone in how I feel and think and even though this disease is terminal, I have hopes to get a liver transplant. You know I was feeling completely crazy because i thought alot of my symptoms were just there because I was not knowledgeable of what was going on. Thank everyone ahead of time for being here.
God Bless
Posted 8/3/2008 1:02 AM (GMT 0)
Hello Bratnewton and welcome to HealingWell,

I am sorry that you have this disease but glad you found us. It sounds like you have read over some of our older posts.... that good. As you see we have a lot of knowledgeable and compassionate people here.

My husband had the disease and passed away a year ago last April. He gave it one heck of a fight though. He was the one also that didn't want to talk about it or know about it. I finally had to tell him .......you better listen to the doctors or you are going to die. And if you don't care why should I? That was about 3 years before he died. His first encephalopthy episode finally scared him enough to stop drinking and follow the doctors orders.

He made the transplant list at CPMC in San Francisco........but a little too late.

So what hospital are you going to?

Again welcome aboard...........Thoughts and prayers.......
Posted 8/3/2008 2:15 AM (GMT 0)
Hi Bratnewton, Welcome to the forum. I am so sorry to hear that you have this terrible disease. My husband has hep C and cirrhosis. I am glad that you found us. I have learned a lot since finding this place. The people here are very caring and supportive. It would be good if your husband learned a little about the disease. It may help him to understand a little more of what you are going through. I didn't know a thing until I googled it and found a lot of info on the internet. Learning about the disease and this forum has made me a little better in knowing how to deal with some of the symptoms and to know what may arise in the future. Knowledge is the only power we have over this disease.

Take care of yourself. You and your family will be in my prayers.
Posted 8/3/2008 2:59 AM (GMT 0)

Bratnewton, I'm sorry you find yourself needing to be here--but welcome!  There are many supportive and knowledgeable people here, so you will not feel alone any longer.

I was diagnosed with hep C in '93.  I tried Interferon twice that first year, but I had very low white counts so was taken off after 4-6 weeks.  The only symptoms I had for a long time were extreme fatigue and elevated liver enzymes.  Later I developed ascites and edema. 

about 2 1/2 years ago, I was diagnosed with a huge cancerous tumor in my liver, which had metastasized to the inferior vena cava.  I was getting ultrasounds every year, and this showed up on one of them.  I went to Mayo Clinic here in Jacksonville, FL, and they literally saved my life.  They first did a chemoembolization and then I was part of a study for TheraSphere, a form of radiation in microscopic beads.  These treatments shrunk the metastasized part of the tumor back into the main tumor and shrunk the tumor enough that I could undergo surgery.  A year ago in May, I had the rt. lobe of my liver removed.  During that surgery, I had a biopsy of the left lobe and was found to have mild cirrhosis.  I have remained cancer free since then.  I did develop 2 incisional hernias (the first repair didn't hold up) and some drainage problems, but I am doing very well now--finally. 

I will go back to Mayo in Sept. for blood work, a CT scan, and a meeting with my hepatologist to discuss hep C treatment.  The hep C caused the liver cancer.  If the cancer recurs in the left lobe, I will need a transplant.

It sounds like you have been getting the care you need, except for the problem with the primary care physician.  If you are not satisfied with the way things go in San Francisco, perhaps you could contact Mayo in Phoenix, AZ.  I hear you on the testing.  I cannot begin to tell you the number of CT scans and MRIs I've had, plus constant blood work.

I don't have much family, but I think the only one who understands or cares to hear about my illness is my sister in SC.  My daughter doesn't want to hear about it and my aunt doesn't really understand the seriousness of the disease.  So I especially appreciate having this forum, a place where I KNOW people understand.  There are some really wonderful, caring people here.

Again, welcome, and I hope you will post often!

Hugs,

Connie


Post Edited (hep93) : 8/3/2008 2:19:58 PM (GMT-6)

Posted 8/3/2008 3:09 AM (GMT 0)
Thanks for the warm welcome !

I am going to the California pacific Medical Center in San Francisco for the evaluation and I assume when the time comes I'll have the transplant there. Does anyone know if they have a nutritionist at these places because I haven't been told about any kind of diet or I read in one post that drinking plain water was not good. I drink at least 2 gallons of water a day. Its at least 110 degrees or more outside here and I get so thirsty all the time like I am dehydrated or something. I get more and more forgetful every day but I have a friend that got me a planner to write all my stuff in. I don't sleep as much as I used to a few months back but I have thought maybe its because I have been taking so many vitamins along with all my meds. I think my biggest complaint lately is my eyes are getting so bad to see..even with my glasses and my muscles hurt so bad after only being up for a couple of hours.The Dr finally gave me Tramadol to take for that the other day. It at least takes the edge off. Well thanks again for your support
Posted 8/3/2008 3:23 AM (GMT 0)
Hello Bratnewton,

You are the third person here who went to CA Pacific Med Cen. that I know of. (CPMC). And the answer to your question is yes. They have a dietician who you will to see when you go to your evaluation. Have they scheduled it yet? It's a 2 day event. Very long and tiring.

One piece of advice. Stay on top of them. Write everything down from every doctor's appointment. You will get overwhelmed with all the different hoops that you have to jump through. I sure did and I was the caregiver and not the patient.

You can email me if you have any questions about CPMC's transplant process.

Good luck.......thoughts and prayers.
Posted 8/4/2008 12:59 AM (GMT 0)

Dear Bratnewton,

I am so glad you have found this site.  I am sorry that you have a need for it, but I know how important information can be to coping with everything.  And just having others who understand is such a help. 

I spent last week dealing with my first ascities "attack".  It was miserable.  Monday my Dr. removed 1.5 litres.  Doesn't seem like much, but at least now I can breathe without pain.

My husband is one of those whose response to the dr. telling us I could live a long time with this or be on the transplant list in 2 or 3 years was He doesn't have to worry about it for 2 or 3 years then.  He loves me dearly, and seeing my belly swell up to about 9 months preg. overnight scared him, so much so that he is now increasing his travel time so as not to deal with any of it.

I am also trying to work out Dr. Info.  Luckily we have insurance which makes it a lot easier.  I have a GE near my home and one at Wash. Univ. St. Louis for big stuff.

Take care of yourself and keep coming back.

Prayers 4 U

Cheryl

Posted 8/4/2008 2:37 AM (GMT 0)
Cheryl, I am so sorry that your husband is not taking this well. I hope that he realizes soon that he can't run away from this. This disease can be very scary for loved ones also but, you are really going to need his support. I know that my husband couldn't handle things on his own. He can get very confused at times. He sometimes can't remember taking his medications. I give them to him everyday so he doesn't forget.
Posted 8/5/2008 1:14 AM (GMT 0)
Thanks for all your warm welcomes. I can't tell you what a weight off my shoulders just in a couple of days by having people that know what I am going through.
I'm actually having a good day today. Feel pretty good although I look 18 months pregnant. I get "drained" on Wednesday. I have this done every 2 to 3 weeks depending on how big I get and miserable.
So how was everyones day today including caretakers? I pray for everyone here. Please keep in touch.

Karen in Nevada
Posted 8/5/2008 3:27 AM (GMT 0)

Hi, Karen!  I'm glad you've had a good day!  So have I!  I got a spa pedicure and manicure, which I desperately needed.  Because of my artificial hips, I can't reach my toes and am not supposed to bring my thigh/knee up more than 90 degrees.

Are you on diuretics ("water pills") ???  I was never drained except when they were replacing drains on me that I'd had initially put in at the time of surgery.  I had 2 drains clog up.  The 3rd one worked, thank goodness!  I'm on Lasix 40 mg and Aldactone 100 mg daily.  Sometimes I cut the Lasix to 20 mg when I feel like I'm losing too much weight or getting dehydrated.  The docs know I do this and are okay with it.  Even when I looked like I was 9 mos. pregnant and weighed more than that, they did not want to drain me.  The Mayo docs say there is risk of infection, which is something they try to avoid at all costs.

Going to see my PMD tomorrow for a Pap test.  I'll be glad when that's done!

Here's hoping tomorrow will be a good day for you, also!  :-)

Hugs,

Connie

Posted 8/5/2008 3:37 AM (GMT 0)
Cheryl, I am glad to hear that you have been feeling better. My husband hasn't had to be drained, but I have heard of it. His stomach is pretty big, but he doesn't complain about having trouble breathing. Is that when they decide a person needs to be drained?

Connie, It is very good to hear that you are doing so well. It sounds like you got a little pampering. You deserve it.

Hope you both are able to get some sleep tonight.
Posted 8/5/2008 5:47 AM (GMT 0)
Hi all, They took 8 liters of Doug today, he had to go off water pills for 3 days due to kidney issues and gained 30 lbs in that time. I cant even imagine that. I got him a metenity belt to help support his belly when he gets to big, we put it on backwards and it helps the strain on his body. The creative things u come up with. I am trying to design and make something better, any ideas for a belly sling?

Sue

Posted 8/5/2008 8:03 AM (GMT 0)
hi i am candlelight i am waiting 4 my 2nd transplant. my 1st was 11/04/04

a friend donated to me. worked well for about 2 weeks i have been sick ever since. meld #24 but now also have an enlarged spleen on top of the esld. i go to westchester medical center love the coordinator and doctors there. i am on more meds now than i was right after trasplant plus lactolose and weekly shots of nupogen and epogen. i hurt all the time but thank god for my children and 3 grandsons. i am 50 years old have been married for 28 years and found out recently my husband has been having an affair said he shoulnt have to give up his life also. oh well cant win them all. i found this site tonight around 2 [cant sleep] and was really touched by reading alot of the posts. i look forward to talking to you :-)

Posted 8/5/2008 1:00 PM (GMT 0)
Hi Candllelight, I am so sorry you are ill. I am a caring for my S/O who has esld. This is a great site with alot of great people.
Sue
Posted 8/5/2008 3:59 PM (GMT 0)
Hi all, I found this site and have been reading through the post and it seems like a great site and i feel that you can help me with regards to a very dear friend of mine. She has been in hospital now for about two weeks and has been told that she has cirrhosis of the liver though alcohol and prescription drug taking, her whole body is yellow and are her eyes are really yellow, she has severe swollen legs and stomach and she is itching really badly. She however seems in good spirits and is somewhat of a fighter, she has two lovely children and it is heart breaking for me to see her children when they go and visit her. I would just really like some advice and answers really, does this sound like end stages liver failure, i would really like to know.
Clare
Posted 8/5/2008 6:25 PM (GMT 0)
I HAVE HAD THIS TWICE THEY WILL GIVE HER MEDS TO CORRECT THE SWELLING AND JAUNDICE DID THEY SAY ANYTHING ABOT A TRANSPLANT I AM WAITING ON MY SECOND IN 3 AND 1/2 YRS
Posted 8/5/2008 6:39 PM (GMT 0)
DEAR SUE
THANK YOU SO MUCH FOR ANSWERING SO QUICKLY WHAT HOSP IS YOUR S/O AFFILIATED WITH? I GIVE YOU LOTS OF CREDIT BEING THE CAREGIVER I KNOW IT MUST BE HARD SOMETIMES BUT I AM SURE U HAVE NO IDEA HOW MUCH IT MEANS TO KNOW U HAVE SOMEONE WHO WILL BE THERE THRU THIS
Posted 8/5/2008 7:59 PM (GMT 0)
Hi Clare,

Sorry that you need to be here but there is a great deal of caring and expertise here. I'm a longtime (40yr, 30 yr) Hep A, B, C'er waiting for a transplant.

You can't expect medical expertise here -- that can only come from a doctor. What we can do is share experiences and what has worked or failed for us.

Not knowing what your friend has gone through before, the jaundice, edema and ascites may be the End Stage Liver Disease or the active phase of one of the Hepatitis. My active phases were 40 and 30 years ago. My symptoms of ESLD began 4 years ago and I don't anticipate jaundice for at least another year.

If your friend is drinking alcohol at all, the end can come soon. No drinking, and going onto a liver-gentle diet can slow, and in my case reverse, some of the symptoms. Diet change for me reversed my ascites to the point where sometimes I have none at all.

I hope that your friend does well and is not drinking. www.cdc.gov is a good resource.

Be well, John
Posted 8/5/2008 8:03 PM (GMT 0)
Hi CANDLELIGHT,

Just a quick hello. If you have time and the inclination, please e-mail me (address is posted with profile). I'd like your opinions on Westchester Medical Center. I've been to Dr. Kim and they would like me to list with them for my transplant.

Be well, John
Posted 8/5/2008 11:15 PM (GMT 0)
Hi Candlelight, Just wanted to welcome you to the forum. I am so sorry that you have all you do to deal with. My husband has hep C and cirrhosis. I can't imagine turning my back on him. He mainly suffers with encephalopathy ascites, and edema. My husband's spleen is enlarged also. That is caused from cirrhosis. His meld score is 11. He is actually doing pretty well except for the things I just mentioned.

Hi Clare and welcome to the forum also. I know it is really hard watching someone you love suffer with this disease. It can be so heartbreaking at times.

I hope you both continue to come back. There are many caring people here available to listen or give advice when you feel the need. They understand what you are going through and can help things to be a little better. The people here have really been alot of help to me.

You will both be in my prayers.
Posted 8/5/2008 11:21 PM (GMT 0)

Klonk/Clare and Candlelight, I just wanted to welcome you both to the forum.  I'd like to suggest that you both (individually) start a "new member" or "hello" thread on the Hepatitis forum, so your presence here will not be overlooked.  Just tell a bit about what you are dealing with.

Personally, I have hep C (contracted in '68 or '69) that was diagnosed in '93, which caused liver cancer (now cancer-free after treatment and removal of the rt. lobe of liver) and cirrhosis.  I've had other medical problems, as well, in the past few years, but am doing quite well now.

Hugs,

Connie

Posted 8/6/2008 1:44 AM (GMT 0)

Hi Clare and Candlelight.  I'm sorry you both have the need for this forum but you have come to the right place.  We are all in a similar boat so we support each other.  I hope we can give you support as well.  Candlelight you have no idea how long I have waited to hear from someone that has had a live liver transplant.  My husband has ESLD.  He is on the transplant list but his son has started the process to give him part of his liver.  I have wanted to talk to someone for so long that has had this.  We go to Vanderbilt in Nashville and they have only done 4 live transplants thus far.  Many other hospitals have done more.  If you have time would you please e-mail me.  I would love to ask you questions.  Also if there is anything I can answer for you I will be glad to.  It sounds like you could probably help a lot of us since you have been through it before.  My thoughts are with you.

JoAnn

Posted 8/6/2008 12:40 PM (GMT 0)
Bratnewton

 

Hi.  I am just catching up with new posts after a small mental breakdown last week.

 

I see from your post that you are 'drinking 2 gallons of liquids a day'.

 

I just wanted to share with you this fact... my hubbie has all of your symptoms... and has been hospitalized 6 times this year since Jan 1... and has had his abdomen and lungs drained and drained and drained... and is on all types of dieretics...

and his Dr. has had him on RESTRICTED FLUIDS.

 

Just something for you to think about.  Hubbie can only take in 1500 ml of fluids per day.

 

Welcome.  You have found a place to find a lot of good information and a lot of good and caring people.

Posted 8/6/2008 1:49 PM (GMT 0)

Bratnewton

I'm with LaBunna on the fluid intake.  My husband is restricted to 1500ml a day also and is still fighting the fluid problems.  He takes 300 ML of Aldactone every morning and still has to be drained every three to four weeks.  I think the fluid intake was one of his first restriction dealing with this disease.

I'm sorry I forgot to welcome you.  The people in this forum are wonderful.  I know you will find a wealth of information here as I have.

JoAnn

Posted 8/6/2008 3:41 PM (GMT 0)
Thank you all for replying to my post. I have just got back after visiting my friend in hospital I like to visit her about twice a week as i have to work, She did'nt seem that yellow today her eyes were still quite bad, the swelling in her stomach and ankles, which is now going up her legs is still quite bad. She said that all she wants to do is sleep and her speach was slurred today and was her balance she said that they gave her morphine last night for the pain she is also taking lactolose, vitamins and piriton for the itching. Candlelight yes they have mentioned a transplant but how long does this take, and i don't think they take to kindly to doing this as this was due to alcohol. They also done key hole surgery yesterday and took some of the liver. John no my friend is not drinking and i have ask her does she want another drink and she said no way, she said if you put a drink in front of me i will throw up, So that is a step in the right direction. kind regards clare
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