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Posted 11/29/2006 6:04 AM (GMT 0)
Hello everyone, I have been reading everyone's postings on the livertransplant listing. I just wanted to tell you my husband's story. He was diagnosed with cirrohis of the liver about 5 years ago. He was referred to Dr Gish of CPMC in San Francisco about 3 years ago. We went to his satelite clinic in Sacramento CA as it was closer to our home. The doctor had told him that he had to lose 100 lbs before he could even be considered for the list. Needless to say we both were dissapointed. about 2 years ago he really started getting sick. His doctor in our home town had sent us back to Dr Gish last January. By that time he had lost 65 lbs without even trying. So were hopeful that that they would evaluate him for the list. Well much to our surprise the Dr asked what we were doing there and why wasn't my husband in a hospital as he had a spot on his liver that showed up on a MRI scan back in November. We were in shock as my husband's gastronolist hadn't told us anything about it. Well indeed he has liver cancer but has had a chemoembulization last May. It has kept his cancer in check so far. He also went through the evalution process in May and was turned down pending losing 35 more pounds and go to AA. In June he started having focal siezures in his right arm/hand. They put him on Keppra which seemed to help. But they kept coming back and the neurologist kept increasing the Keppra. He lost the weight and went to AA weekly and in September they wanted him reevaluated for the transplant, but they took so long that my husband had to redo 1/2 of the tests that he had done for the May evaluation. about two weeks ago my husband got really sick and started having siezures again. After 2 trips to the emergency rooms they kept him and did a CT and a MRI scan which showed that my husband had a stroke on the left side of his brain. With everything that has happened and all that we have been through I am numb with fear. I am worried that now that all the tests are done again that they will turn him down again because of the stroke. So I have been looking on line to see if that could be a reason of denial for transplantation. If anyone can give me an answer to that I would greatly appreciate it. Pink Grandma
Posted 11/29/2006 10:03 PM (GMT 0)
I just wanted to jump in here and welcome you,pink grandma..Im glad you shared your husbands story with us. Someone may be able to offer you some insight as to how the stroke might affect your husband receiving a liver,,I have no idea if this would or not. Please feel free to post whenever you feel like it. I will be hoping for the best for you and your husband.
Posted 11/30/2006 2:10 AM (GMT 0)
Thank you Trish. This journey for my husband to try and make the transplant list has been long and hard. I knew we were in for a ride but what a ride it has been. Whether or not he makes the list it will be worth the ride though as I have learned so much along the way. The hardest part is the not knowing. I'm a planning kind of person. But with our lives kind of turned upside down I can even make plans for tomorrow. I am learning to just go with the flow and not to sweat the small stuff. I sure hope someone knows if his stroke will affect his chances of getting listed or not. I brought him home today and he is doing okay. Gotta give him his dinner and meds. Thanks again..........Pink Grandma
Posted 11/30/2006 9:36 AM (GMT 0)
boy ,do I ever know about not planning anything,my husband did not even eat thanksgiving dinner with me,was in a "mood" and refused to leave the house with me....im in a kinda "feel sorry for me " mood tonight,,,,,,,i feel so alone in this world,my husband is lost in space somewhere,my kids are lost without the "real: me,,im lost without the real me,,,just wish i could go back a couple of years and do this all over again,,,,,i doubt if id go the same path....though ive learned alot,its mostly not a good learning. ive learned that i am strong,and he isnt. ive learned that i make mistakes ,and he is unrelently in the fact that i should be perfect.,,,,,,ive learned that i cant depend on anyone,,,,not even myself anymore...excuse my rambling everyone......i want to be a positive influence on people,but im just not postive of #### anymore..sorry for the unsolicited babbling,,,,i think im heading for yet another divorce.....:sighs: im gonna stop for now,before i get into too much detail,,,take care everyone
Posted 11/30/2006 10:00 AM (GMT 0)
Trish,

It's ok to feel sorry for ourselves everyonce in a while and to grieve and miss all the things that we once had like ourselves and our own lives. No one can be positive all the timeand for sure no one is perfect. Don't expect so much from yourself all this too you can get through. We are all here for you

Lucy
Posted 11/30/2006 10:18 AM (GMT 0)
Hi Trish,  I'm feeling bad for you.  I haven't posted very often.  I've been so busy at work. Hope things improve for you.  You deserve the best.

Marg.

Posted 11/30/2006 5:05 PM (GMT 0)
Trish I know exactly how you are feeling. As contrite as it may sound...this too will pass. It's the suffering that does make us stronger..........I really believe that. I went to work this morning at 4am and came home at 8:30am to take my husband to another dr.'s appoint in San Francisco (his cancer Dr. ). Well it looks like we aren't going as he is in left field again. I'm just waiting for the doctor's offices to open and reschedule and try to get him in today here in Stockton. It looks like his amonia levels shot up again. But I not sure maybe it is the stroke he had. He also had an appoint here that I didn't remember today. Hopefully I can get him in to that one. When ever I feel really stressed out I start taking deep breaths and will myself to calm down and keep telling myself I can get through this. In fact I am doing that right now. Hang in there Trish you are not alone. There's plenty more of us in the same boat. I'll be praying for you and your family. Hope you start feeling better soon. Pink Grandma
Posted 11/30/2006 11:24 PM (GMT 0)

Hello Pink grandama, welcome to HW. I really don't know if the stroke will keep him from getting a transplant, it just depends on the severity of the stroke, I am guessing. I have found my husband several times in stupors and comas. His were being caused from infections. He has not had high ammonia levels in over a month now. I will keep you and your hubby in my prayers, to be placed on the transplant list.

Trish, BIG ((((((HUGS)))))) to you, I know how you are feeling. I know I want my life back!! I am tired of the stress. I want my family to have a normal life again. But I keep my faith in God everyday, not just when I need him. It keeps me sane. I am not positive all the time and I definitely am not perfect, I am human and full of mistakes. We can't turn the clock back, but we can go forward, and hopefully we will make better choices.

Hugs and Prayers to All!!!

Teresa

Posted 12/1/2006 4:21 AM (GMT 0)
Thank you Teresa, it just feels better discussing this with people who know what I'm going thru. Neither of our families understand about the confusion part. And I didn't know that infections can cause confusion. My husband is in the hospital again today but a different one. They said that he his ammonia levels were at 78 . And they have been at 150 or more and he was not as confused as he was today. But he also has an infection. So now it makes sense. It is so hard trying to get information from the doctors, that's why I started going online to try and find out things. I too know how both you and Trish feel about wanting your life back. When I get overtired and stressed out I just want to run away. I just want it all to stop........but of course it doesn't and I end up recharging my batteries and resolve and get going again. I've have never taken the easy way out and don't plan to start this late in life. Everyone thinks I am nuts for sticking around and trying so hard with little or no appreciation at all. The way I figure is that I am all he has in his corner whether he likes it or not. I know that what I am doing is right for him and for me. I couldn't live with myself if I didn't give it all I got to try to get him on the list. But this is really the hardest thing I have ever done. Giving birth was a heck of a lot easier. I got to get some sleep. My thoughts and prayers are with both of you. Pink Grandma
Posted 12/6/2006 6:39 PM (GMT 0)

Hi Pinkgrandma, hope your husband is doing better and they have the infection under control. There are just so many things that can cause the encephalopathy. Be sure to get some rest!

Teresa

Posted 12/7/2006 5:30 AM (GMT 0)
Thank you Teresa, he is doing better. They got his ammonia levels going down and his infection under control. By giving him a new medicine and 2 pints of whole blood. They are supposed to transfer him to CPMC in San Francisco tomorrow. The transplant team talked his local liver dr. into it. That's makes me fill better. They know their stuff there. I was getting tired of fighting with the doctors and the nurses here. At first I didn't want to step on any toes, but when I called the evalution nurse she told me to not worry about stepping on their toes and just do and say what needed to be done. I am sure that the doctors and hospital here are glad to get rid of us. My husband is so tired of being in the hospital. He kept telling me he was just going to walk out. Well if he did that he was going to walk out naked as I had his clothes. That wouldn't have been a pretty site. My best to you and your family. Pink Grandma :-)
Posted 12/9/2006 1:37 AM (GMT 0)
Pink Grandma, I don't worry about putting my foot down anymore, you are advocating your rights and your husbands to good healthcare. I started when my husband became acutely ill in January, every thing the local hospital did seemed to make him worse, I demanded he be sent to a transplant hospital and they sent him via ambulance. He got excellent care there and he is still living, which he would probaly have died where he was. I am very sure the local hospital was glad to see us leave. Glad things are being taken care of! Hope you are able to get some rest!!!

Teresa

Posted 12/9/2006 4:59 PM (GMT 0)
Thanks Teresa,
It looks like our husbands got acutely sick about the same time. Well he never made it to CPMC. I got 3 different stories. 1. There was no beds available in the liver ward. 2. His doctor here had told our local hospital that he was being transferred. They got all the paper ready for the transfer Wednesday. 3. The transplant dr said that his local doctor said that he was doing better and they were suppose to reavaluate the transfer on Thursday. Well they sent him home yesterday. With the instructions to make 3 different doctors appointments for this coming week. He is alot better. No encephalopathy. He has complete use of both hands now. They are a little weak but he can use them both. I really didn't know that I could demand that they transfer him. I thought it had to be a doctor's decision. All I did was let the transplant team know that I felt that he wasn't getting the proper care here and that I preferred that he was in San Francisco. We do have private insurance but I am not sure if they would have covered the transfer if it was me that insisted that he be transferred. Right now between all his medications and hospital and doctors copays we are pretty broke. I know that shouldn't be a factor but it is a worry. I really want to thank you for your information it is a big help. I did get alot of rest last night. First time in over 2-3 weeks. Sometimes I am so tired I can not think straight. Through all this I have worked full time. Don't want to use up any time incase he gets a transplant . I have 1 more week to get through and then I am on vacation for about 12 days. Hope your husband is doing well and that you are getting your rest. Thanks again, Pink Grandma
Posted 12/13/2006 5:51 AM (GMT 0)

Hey Pink grandma, The hospital my husband was at, really didn't have the specialist he needed. They had a gastro doc with very little experience in liver patients, and he is only in town on Tuesdays and Thursdays. He was making all kinds of mistakes on treatment and he was making the condition worse. It is a patients right to recieve proper medical care, if the facility can not provide it you can request to be transfer to a facility that can! Marks PCP, had no problem with it, he wanted Mark stabilized. I know about the co-pays and drug co-pays, it does get very expensive. We have private insurance too.         Mark did have a pretty bad episode of encephalopathy this past Friday to Sunday morning, I think he may have a sinus infection or it may have been the TIPS working. He took off 20 lbs of fluid this weekend, but was also started on antibiotics, so who knows?  I hope it was not the TIPS causing this, if it is I will eventually have to quit working til he gets transplanted. He can't be left by himself like that. Just more stress to add to the stress!!!!

I hope your hubby gets to the transplant team soon!!! (((Hugs)))

Teresa

Posted 12/14/2006 5:21 AM (GMT 0)
Well. Teresa it looks like your hands are full also. I'm glad your husband got thru his episode. They are scary huh? I'm not sure what state that you are in but in California they have what you call FMLA that you can apply for and and get something like disability to stay home and take care of your spouse. It's called that Family Leave Medical ACT. It also protects your job if you have to miss a lot of work. I did fill out the papers for work already but next week I am going to our State Disablity office and see about filing for the disability because it's to the point that I never know what going to happen next. My husband is doing good now but at the drop of a hat he could be back in the hospital as you know only too well. Try to find out if your state has something similar. If you are in California check it out. Your work should have the paperwork for you to fill to protect your job. But they won't tell you that you could get money from the state. At least mine didn't.

Also maybe your insurance has coverage for home health care. Mine does but it only applies if the patient has wounds that need dressing or needs shots. That leaves us out of that. But if he needed to go into a rest home for a while we have coverage for that. But that's not something that I want to do.

I think most doctors and hospital's do a quessing game as to treatments. When one plan doesn't work they try something else. Then something else again if that doesn't work. And it seems like the doctors and hospitals here do not want to listen to the transplant specialists. It's like they are so full of themselves that they can't admit that someone may know more than they do.

Thanks again about the requesting of transfer. The next time I will do that. Take care of yourself...............Pink Grandma :-)
Posted 12/15/2006 4:26 PM (GMT 0)

Pink Grandma, Mark has had a unbelievable week!!!This why the disease is so complicated! He has gone for a couple of walks this week, Christmas shopped, help decorate the house, , cleaned the car out......etc... He has been the wonderful man I fell in love with 10 years ago!!!I do know he can go down at the drop of a hat, so I am enjoying this while it last!!!! It seems that the TIPS is taking the fluid off and he can move around better right now! Hope you have a good weekend!!!

Hugs

Teresa

Posted 12/16/2006 1:25 AM (GMT 0)
Teresa I am so happy that Mark is doing so well. It's makes life a whole lot easier huh? Mine husband Conrad is doing alot better now also. I too am enjoying it while it lasts. Well am am officially on vacation now so I have a double blessing. Maybe I can get my tree up now and my shopping done. I haven't had alot of Christmas spirit this year. You have a great weekend also. Pink Grandma yeah yeah
Posted 1/2/2007 1:58 AM (GMT 0)
Hello All:
Can someone please let me know about the living donor? If someone needs a liver can't a friend or family give them half of their liver and it grows back. To receive the 1/2 liver their liver me be operating at what percent? Does anyone know?
Posted 1/2/2007 4:50 AM (GMT 0)
Hi Jarlett,
I am unable to give you the information you require. Ask your doctor or perhaps sometone else here may have an answer for you.

Good luck in your search for a live donor.
Marg
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