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Posted 1/22/2008 5:48 AM (GMT 0)
I have been reading over a bunch of the the old posts and realized that we haven't heard from quite a few of our members recently. If you are reading this and haven't posted in in the past month please post if you can and let us know how you or your loved one are doing. You know that we are your cyber-family and we care. Hope everyone is doing well. Thoughts and prayers.....
Posted 1/23/2008 1:40 AM (GMT 0)

Hi, Sorry it has been a while since I wrote. I read about your brother and you are most definately in my thoughts and prayers. I am doing ok. Terrible sinus infection that even a script for a z-pack does not seem to be helping. I guess I am feeling guilty. I have never been a big drinker and since my diagnosis I RARELY have a drink, but I went through a very emotional day Saturday and next thing I know I was pouring my heart out to a co-worker over drinks. Lots of them.WOW my body DID NOT LIKE THAT! Guess the doctors weren't kidding when they said alcohol could no longer be a part of my life. OOKAY i get it. nono  Anyway the way I feel now you could not bribe me to have a drink. I know they say the liver doesn't feel pain, but I think someone forgot to tell my liver that! Hope you are well. More later. Just wanted to say HI

Pasey_1

Posted 1/23/2008 4:03 AM (GMT 0)
Pasey it is so good to hear from you. You were one of the ones that I realized hadn't posted in a while. Sorry that you learned the hard way about drinking with liver disease. But I am glad that it gave you a wake up call.
I am doing well. In fact today is the best that I have felt in a few weeks. I am going to be in expert in this grief stuff yet whether I like it or not. Maybe I will create a new grief forum. (Just kidding.)

Hope you get over your sinus infection soon. Those are dreadful to have. I really feel for you.

Take care and keep in touch when you can.

Thoughts and prayers...
Posted 1/25/2008 12:56 AM (GMT 0)

Hi,

It was great to hear from you too. Sorry it has been so long. I have to admit that I have found myself over whelmed with some of the postings. So .....well I am sure you understand that. Anyway I am glad to hear you are doing well, and well I just want to say one thing on the subject of greif. By the time I was 37 I had buried my mother, brother, step son,husband and best friend. The one thing I can say is that in each instance the grief was different. There is no correct way to grieve nor are we given a script at birth. We all heal differently. It is an ongoing process. I wish you peace and solace. You are in my prayers. Don't forget to take care of yourself. We all need you, at least I have found something very special and much needed on this forum. Til next time.

Again thank you,

Pasey

Posted 1/26/2008 8:23 PM (GMT 0)

Pasey, good to have you back here!  I'm glad you did that bit of drinking for me...now I don't have to wonder what it would be like!  ;)

PinkGrandma, you might just have a wonderful idea there--a grief forum.  Something for you to think about down the road when you are feeling stronger.  You would be so good at moderating a forum like that!

Hugs,

Connie

Posted 1/26/2008 9:34 PM (GMT 0)
Hello Pasey and Connie, Hope you both are doing great today.
Pasey that's what I figured out when my husband died. It was so much different than any other death in my family. I too have had a lot of family die before I was 40. My brother's passing a few weeks ago threw me back a few steps in the process. But I will get through it I know.
Connie, I have decided to volunteer for hospice. I think that I will just start as a family volunteer. Just run errands or sit with patients while their caregiver gets out some. But ultimately I want to train as a grief counselor. I was so impressed by the grief counselor that I had at hospice that it turned on a light bulb with me and I am going to strive for that. Classes start in April so I am pondering starting then or maybe the next session. I need to have some kind of plan to keep me busy when I retire.
Thanks for being here on this forum both of you. In fact thanks to all of our members. We have such a wonderful group of members here that it amazes me.

Thoughts and prayers to all.
Posted 1/27/2008 5:23 AM (GMT 0)
Pink Grandma, I think you would make a great grief counselor. You do so much for everyone here. I know that you have always been helpful to me. I always look forward to reading your posts. My thoughts and prayers are with you also.
Posted 1/28/2008 10:33 AM (GMT 0)
Pink Grandma

I also believe that it would be a wonderful thing for you to pariticpate with the hospice program when you believe you are strong enough to handle that for yourself. You certainly have the compassion, empathy, and experience to do the job. You are such an asset on this forum and your genuine caring comes through (even in typed words). Grief is such a personal matter for each individual and my belief is that it truly takes someone that has walked in those shoes to understand those that are going through it.

Good Luck on the next phase of your life May thoughts and prayers continue to be with you.

Lucy
Posted 1/29/2008 7:38 PM (GMT 0)

Hello Pink Grandma and everyone...it's been a while since I've last posted.  My husband Robert has end stage liver disease/cirrhosis, diabetes and pancreas damage.  He's been sick for about two years now.  He's on a liver transplant list through Mayo Clinic for about year with a current MELD score of 13.  He continues to be seen by his GI doc to get banded for esophogeal (not sure on the spelling) varices (bleeding) about every 3-4 months. Considering his illness, he does okay most days and has some bad days.  Lately he's been having swelling of his feet really bad, he takes the water pills about three times a day, stays away from sodium for the most part, but they still seem to swell.  He's always cold no matter what the temp is.  Just recently about two weeks ago he got banded, the GI doc said to us that Robert will eventually need to get that transplant one of these days.  That his liver will do okay for about 2-5 years (after ESLD/cirrhosis diagnosis) before he starts to become more sick.  I wonder if that's true?  The things that he's going through now, I wonder if those are signs of this happening?  Robert isn't too active because he does get tired easily. The docs have encouraged him to walk more and excersise a little more, but he just doesn't get motivated to do so.  So I don't know, I sound like a broken record to him telling him the things he needs to do.  So as a caregiver, I sometimes get frustrated with all that's going on, I wish it would all go away and we could back to living a normal life, without all the doctor visits, medical procedures, hospital stays, etc....I feel like we're always broke and have no money for a rainy day that I know will come one of these days with Robert's illness and transplant.  But in the meantime, I continue to work full-time, we raise our 8 year old daughter, Robert has two children from his first wife, so he's expecting to be a grandfather sometime this week for the first time and has a son who will be graduating HS this year and off the college. So he does have a lot to look forward to in the future and I just hope and pray to god everyday, that someday this will get better.  I'll continue to check back and post when I can....

Posted 1/30/2008 1:54 AM (GMT 0)
Hello Shel, Glad that you could post. And if you don't post very often we understand. You know I have been where you are. Take a little time for yourself every now and then. You really need to recharge your batteries sometimes or you will get burnt out. Your probably running on empty huh?
Fill up your gas tank Shel. You're doing what I call "double back flips" to keep everything together. If it helps you ....vent here. We all are or have been in similar situations. So we are good listeners.
Take care and my thoughts and prayers are with you and your family.
Posted 2/1/2008 1:34 AM (GMT 0)
Shel, I understand how terrible it is dealing with this disease. My husband hasn't had problems with the varices yet, and I really pray that he doesn't but he does suffer from extreme fatigue. I tell him that he needs to walk a little or something, but he doesn't listen. Most of the time he just wants to sleep. I also wish that I could wake up one day and find that this has all been a terrible nightmare. This is not what I had imagined life to be. My husband is still with my physically but mentally he is not. I miss him so much.
I just wanted you to know that I know some of what you are going through and, I pray that your husband receives a transplant soon so that you all can enjoy life together once again.

Take care.
Posted 2/1/2008 4:43 AM (GMT 0)
Hello everyone! I am not doing bad, though I have allowed my husband to come back  here.  He is very different now,,,the mood stabilizer is working though he doesnt seem to have any feelings now, good or bad.  I really am confused right now about how I feel.  I look at it like I am going to be around for a while, and no one should die alone,,,,,but the months I had as a break from his illness also make me know what I am missing out on.  I found a wonderful man during my time of being single,and have had to put my needs on the backburner for now. I had forgotten what it was like to enjoy being with someone and having fun and now,,,back to the caretaker role. I know this sounds very selfish when so many are going through so much heartache. I am doing great in school, one more year at this college, then on to the university.  take care all
Posted 2/1/2008 5:23 AM (GMT 0)
Hello Trish, So nice to hear from you. Glad that you are doing well.
Being a caregiver is overwhelming at times. I've had thoughts and actions that I still regret to this day. I don't believe that with this disease it's only the patient fighting to survive. The caregiver is fighting not only for their loved ones survival but also for their own as well. Everyone has to find their own way of getting through it.
That's what is so wonderful about this site. We help each other get through a very difficult time. I don't know what would have happened to me had it not been for You,Connie,Teresa,Lucy,Marg, etc, etc etc. I survived it with a lot of help from my friends here at HealingWell. We have a whole bunch of new members that are just great also.
Trish you have been there for a lot of people here at HealingWell. Let us be there for you. Thoughts and prayers.
Posted 2/1/2008 11:23 PM (GMT 0)
Shel and Trish, it's so good to see you posting. Shel, why is Robert having to wait for a transplant? Is it because he isn't considered sick enough? I know that Mayo has the shortest wait time for transplant of any facility.

Trish, I must be a much more selfish person than you, as I never would have allowed him to come back. It's good that the mood stabilizer is working for him, but some things (drinking, spousal abuse in any form) are deal-breakers and if this happens, don't put up with it!! It took a tremendous amount of courage for you to kick him out--and I would do so again in a heartbeat if his previous negative behaviors resurface. You deserve better!
Whew! Vent over. Sorry, but that's a sore point with me.

PinkGrandma, that is a wonderful idea to get involved with hospice! Go for it! I would love to be able to volunteer at Mayo (they use a lot of volunteers), but I'm still recovering from December's surgery and remain exhausted from the hep C. As good as I am feeling, I still tire easily. I will be seeing the hepatologist the middle of Feb. about hep C treatment. However, I'm not sure my Medicare Part D prescription drug plan will cover it. Usually, they only approve injectibles that are given in a doctor's office. I'll find out about that at my appt.

Hugs and prayers for all,
Connie
Posted 2/4/2008 9:13 PM (GMT 0)
Hi everyone! Hope you're doing well.  Robert is doing okay.  He has an appointment with his regular doc today because he's developed a bad rash on his upper thigh, some has spread to the calf of his leg.  On top of being itchy, it's very painful and raw.  So we'll see what the doc says is going on. He had a mild bleed over the weekend along with some weakness, he seemed to be okay yesterday and so far today, so he will mention that to the doc when he sees him.  Robert's wait time on the list is because he is not sick enough.  His MELD Score is 13 and it's pretty much been that the last 6 months.  Everytime we go for a visit, they always mention to us about living donors, that-that may be the only way he can get a transplant sooner.  But as far as we know, we don't know of any people or any family members who would want to do this.  So he'll just have to keep plugging along and we'll see what happens in the future.

Thank you everyone for your responses, I do appreciate them.  I always enjoy coming back here when I'm feeling down and need that extra push to get me going again.  Everyone at work always tells me how strong I am with everything I've had to deal with, but they really don't know what we as caregivers go through.  They only see us on the outside and really don't understand our daily lives we live and all that we go through for our loved ones.  Robert and I talk and he always tells me that he wishes he could start again and not have to go through this or have me go through this.  He thanks me everyday for "putting up" with him as he tells me.  But I guess no matter what, I love him and we'll continue to be there for him.  I just have to remind myself to take care of me and that's what I often forget and that's when I begin to feel run down, overwhelmed and negative thoughts at times.

When I read these posts and read what everyone is going through, please remember that my thoughts and prayers are with everyone here and I hope that your situations will get better and bring more prosperity to your lives. 

Posted 2/10/2008 3:47 AM (GMT 0)
Shel, Please know that my thoughts and prayers are still with you. I too hear that I am such a strong person. Those people don't see me when I am alone. I really don't feel strong at all. I feel weak and helpless most of the time, and I can not keep the negative thoughts away. I just try to put on my happy face for the rest of the world.

I really hope that our prayers are answered soon.

Take Care.
Posted 2/10/2008 4:03 PM (GMT 0)
Hello Shel and Butterfly and anyone else who is dealing with this horrible disease. It is very scary trying to deal with all the things that come with liver disease. It gets especially scary when new things start developing. Being afraid of what's coming next is normal. But the fact is that even though you maybe afraid does not mean that you are not strong. To get to the point you are currently at and still hanging in there doing what needs to be done proves it. You are tough! Do not ever believe that you are not! nono But some times you need to take care of you to be able to keep jumping through those hoops. Take a little breather every now an then.
Laugh when ever you can. tongue Even a little laughter is a great stress reducer. That was my biggest mistake. I forgot how to laugh every now and then.
Lastly know that you have a lot of friends here for you. You are not alone even though it feels like it most of the time.
Lot's of thoughts and prayers are with all of you.
Posted 2/14/2008 1:40 PM (GMT 0)

Hi Pink Grandma,

I haven't posted in quite a while.  My husbands disease is progressing.  The symptoms change everyday.  His body hair is now falling out, his joints hurt so bad when he does get up it hurts to walk.  He's falling alot now.  He had a endoscope the other day and they found Varcies, so now we have a new medication.  We were just in Philly for a visit with the transplant team, they are strongly encouraging him to accept a "non-perfect" liver.  He's getting sicker but his MELD is hovering around 19.  It went to a 25 for about a month but no donor at the time.  He's been in and out of the hospital his ammonia level was 101 the last time.  Some days I just wanna run far far away.

How are you doing?  Keeping busy?

Thank you all for caring!!!

Pati

Posted 2/14/2008 2:10 PM (GMT 0)
Good morning Pati so nice to hear from you. I am doing a lot better these days. Thanks for asking. Sorry about your husband. Hopefully he will get a new liver soon. I know about that wanting to run away part. Just run to our forum. We will be here for you Pati. We have a lot of compassionate people here that just keep sharing of themselves.
Take care of yourself. My thoughts and prayers are with you.
Posted 2/17/2008 5:20 PM (GMT 0)
Hi Pati, I am so sorry that the cirrhosis is progressing in your husband. My husband's meld score is 10. The doctor's say that he remains stable. I think that is because he hasn't had any bleeds and his meld score has remained the same for over a year now. He doesn't seem stable to me. His legs hurt him constantly now, and he is never himself. I know what you mean about wanting to run far away. I feel that way too at times. Mainly I just wish I could have him back. I hope that your husband gets a transplant soon. You will both be in my prayers.
Posted 3/7/2008 3:47 AM (GMT 0)
I had not read the replies to my post until now. Things got very busy, very fast. Connie, I guess I am selfish, because he is back out now for good. I just couldnt get over the way I was treated by him, and it was not the disease doing it, it was him. He didnt do anything bad this time, I just harbored alot of resentment and didnt feel like he was my husband, had lost the "bond" that wouldve held me with him through any illness. I didnt think it was fair to him or myself to continue to pretend. I resumed my relationship with the man I met before and I feel so good. He is independent, encouraging to me, makes me laugh and treats me like I have never been treated before. I still feel some guilt, as Rick will not have a chance to start over with anyone and will go through the rest of his short life without anyone by his side, but I will try to remain friends with him and help him as much as a friend can. Thank you so much Pink Grandma, I really enjoyed helping people on here and wouldnt have made it without everyone through some really bad times. I see you are doing a wonderful job of passing on your wisdom and encouragement to others. take care everyone, and I will check back as soon as possible, oh,one more thing, anyone seen marg lately????
Posted 4/3/2008 2:14 AM (GMT 0)
Bump ....It's that time again. Please update us if you haven't posted in a while. We miss you!
Posted 4/3/2008 6:31 AM (GMT 0)

Hello everyone,

I'm not exactly an old friend yet. I haven't even got back to my first post to continue our story.  nono   I'm still here though. I just can't get it all done and am feeling overwhelmed.  Tonight I have been handwriting letters to friends and family, people that have really come through in times of need. I just wanted to say, "God Bless You All." Amen

Posted 4/4/2008 5:40 AM (GMT 0)
Trish, I'm sorry that your husband didn't know how to treat you well and appreciate you, but am so glad he is now OUT and that your new guy is good to you and for you.  You deserve it!!

I think I posted about the hernia recurrence.  This one is much larger than the previous.  Since I leave for NYC a week from Mon., there was no time to have surgery and recover.  So I will face that when I get back.  Meanwhile, I got myself a good waist cincher with "stays" to hold myself in enough that I can wear decent clothes for my trip.  It's tight and I feel like Scarlett O'Hara!  It's not especially comfortable.  I wore it for 5 hours today, while I went to get my hair cut, grocery shop, etc., and couldn't wait to get home and get the darned thing off!

Anyway, aside from the usual tiredness, I'm trying to find clothes, etc., for my trip.  I've also planned out every day I will be there, and where I will eat, etc.  I am meeting up with my oldest and dearest friend the day after I get there, and we are going to "do" Chinatown together.  Hopefully, she will also stay overnight with me.  She has unlimited calling and we have been having some 2 and 3 hour chats!  LOL!  Having fun catching up on news.

I may not have time to post again until after I get back.  I have pre-op testing on the 22nd of this month, and f/u meeting with the surgeon on the 23rd, at which time I'll get the surgery date.  I'm fairly certain it will be the last week of April or first week in May...but it depends on his schedule.  If he is on transplant duty, my surgery may have to wait.  I'll try to post the date when I know it.

Everyone take care of yourselves, especially the caregivers!

Hugs,

Connie

Posted 6/17/2009 4:29 PM (GMT 0)
confused  Hello everyone....it's been over a year since I posted.  I needed to vent....again.  It has been about 2 years of shear HELL for me as a caregiver and wife.  I am still taking care of my husband Lee, who is currently on Hospice.  He has been since Nov.  I hate this disease.  He has been removed from the transplant list due to over use of his pain meds, and the lack of willingness to get help.  Hospice comes in 3 times a week, moditors meds, vitals asks questions.  To them he is stable.  You call this stable....the man falls down the steps, doesn't eat unless I'm home, is less then coherent 50% of the time.  I asked everyone, everywhere for help and I hit a wall.  I wish someone somewhere could give some sort of time line.  I have come to resent him so bad,and the guilt is overwhelming at times.  I wanna scream!

Thanks for listening

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