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Posted 11/12/2012 8:38 PM (GMT 0)
The good thing is his MELD score is low; the cancer is his biggest problem. Get him in the UCLA transplant program asap. Will they deal with shrinking the tumor, or does someone else handle that? His dose of lactulose sounds low. If he's having more problems with HE, don't hesitate to up the dose. You can't overdose with lactulose.
Posted 11/12/2012 8:52 PM (GMT 0)
Mehran,

Welcome to the Forum. 

I see your post here on the Caregivers thread. Since you are a new member, it would be so good for you to go to the EDIT Button (the pencil) and it will open your post in an editable screen. Copy  and paste your post into a NEW TOPIC.  With a good name, like "Dad Desperately needs Liver Transplant in California"  Then more folks will find you than just the Caregiver folks.  If you don' tknow how to do that, ask me and I will do it for you.

Your Dad's situation sounds like many/most of our patient members with End Stage Liver Disease and his course is moving rapidly.

So many symptoms.  So many meds. It seems like a science project every single day for these ESLD patients to hold on.

My partner, Mike, was in this state when he got to a Transplant Center for evaluation in the fall of 2010.  His MELD was 24 when he arrived for the first appointment, but they could not do the work up because he was actively drinking alcohol!  He needed to take all those meds, slug through the side effects, had the same type of on again off again hospitalizations, AND attend AA meetings FOR 6 MONTHS AND HAVE HIS MEETINGS DOCUMENTED. He was in a haze, but he did it.

Like your Dad, he sprouted a tumor and that was really scarey.  But the tumor committee DID give him extra points and he was transplanted exactly, 8 months and 12 days after he appeared for the first Pre Transplant Clinic appointment...and not a moment too soon.  The docs told us it was a race to the clock.

I received your email about the UNOS data base and will respond here on line in a further post. and when you move your post I will move my respose also so that your CASE all stays together.

Best to you and your family.  Know that others are here for you and have been through this trip together.  Read back posts. Many have had good experiences with the transplant process.

You are correct, that the need for donors is higher in California and that they do not do surgery until the MELD is higher. At our center, in Miami, they do the transplants at MELD 22 on the average.  Mayo in Jacksonville in Florida is about the same.

Some folks, where insurance isn't an issue, sign up at more than one center, or move during the tranpslant time...but I know Kaiser is a bear...they want to control the process at their end and won't let you move without their permission. Now that you are almost at the finish line, I think you need to trust that they will do the right things to help give your Dad a second chance at life.

Best,

Carol aka Mama Lama

Posted 11/12/2012 8:53 PM (GMT 0)
Welcome to the forum, Mehran. I'm sorry your dad is so ill. David, UCLA would be the one to shrink the tumor since transplant would be done there. Mehran, UCLA's transplant team will give him extra points for the tumor exception, which should bring his MELD score up to 22. For every 3 mos. he is on the waiting list, he should get an additional 3 points. CA has a really long waiting list, so I think their high MELD requirement is to make sure that the sickest are transplanted. CA is a large state with a lot of people needing transplant. Your dad can also be listed at other transplant centers. Ask his pre-transplant coordinator about this.

As David mentioned, you can increase the Lactulose without getting a doctor's order.

You can read some posts from others if you put in a search word above right, such as liver cancer (or HCC), cirrhosis, etc.

Sarcoidosis is a disease of unknown etiology which often affects the liver.

Mehran, if you have any questions, feel free to ask. Someone here will be able to answer.

Hugs,
Connie
Posted 11/12/2012 9:36 PM (GMT 0)
Mehran,

I sent the reports to your email. I tried to post them here but the data got truncated. Sorry folks.

Basically I used this site:

http://optn.transplant.hrsa.gov/data/

YOU have to work though the screens to Advanced Reports until you can choose:

UCLA

Liver

Candidates

MELD score

Age

Blood Type

I also looked up how many they were doing each year and it is HUGE. 408 so far this year, 169 of them in your Dad's age group!

Best to you and your family.

Hope this heped.

Carol

Posted 11/13/2012 12:29 AM (GMT 0)
Thanks everyone for responding so quickly and with such care. I'm almost crying reading this. I'll paste a thread for my dad, that's a great idea.
As of right now my dad has an appointment with Kaiser's interventional radiology department on the Nov 20 and they are discussing the different treatment options (chemo, heat, alcohol etc) I'm not sure if UCLA will be doing the treatment or not but we'll see. One of the 3 appointments is with an oncologist at UCLA

I can't express with words how great it feels to not be alone in this. What a blessing.
Posted 11/14/2012 3:30 AM (GMT 0)
Mehran,

Welcome to the forum.  So glad you feel comfortable here.  So sorry your Dad is having these health problems, but you will find caring and knowledgeable folks here.  Don't hesitate to post and ask questions or just vent.  Sometimes it is so overwhelming to be a caregiver and watch all the ill person is going through ... and not knowing exactly how it will all play out.  So welcome to HW family and be prepared for a rollercoaster ride..lots of ups and downs, as you work to help your Dad.

I am feeling very weird tonight.  Hospice comes tomorrow to evaluate my hubby (and me, I guess) for hospice care.  For those of you who are new here, he has choosen not to get evaluated for a transplant, so we are making final plans...even though he seems to be doing better...BUT, the pain is becoming harder and harder for him to control, as the meds aren't working to kick the pain now.  By better, I mean he feels like getting up and doing things outside and on the computer, etc, but pain in getting worse.

Respite worker came Friday and Saturday and helped me clean house, which was wonderful because it needed it badly with all our critters living in here with us (6 kitties, a Corgie...and one house rooster, part-time).  Hubby just mentioned to me, "Should I be in bed or outside doing stuff when they come,,,he is nervous, too."  I keep thinking perhaps he isn't bad enough yet for Hospice.  I guess they will tell us. Feels like we are wimps for needing Hospice to help us through this.  We both thought things would move along to death a lot quicker (it has been about 21 months since he was diagnosed terminal), so we are often at a loss as to how to live this "in between...just waiting" world.  We talked it over and with a sense of humor accepted this and were ready a long time ago....and now things are harder, and more difficult the longer we go on.  Perhaps Hospice can help me with this waiting...patience thing.  (It is still hard to accept that he has choosen this, especially when I read about all on here who are fighting so hard for a transplant and a chance at life.  shakehead )  Don't understand it, but have to accept it.

Listening to NPRadio classical music trying to relax and see if I can lower my blood pressure tonight (for the first time ever last week I was diagnosed with high blood pressure.)

Hubby wants me to get off the computer so he can get on FB, so ending for the night.  Thinking of all you caregivers and loved ones and hope tomorrow will be a good day for all.  Good night.  smurf

Angie1953

 

Posted 11/14/2012 3:34 AM (GMT 0)
Natasha
I wonder about you and how you and the kids are doing. Are you still struggling with being a caregiver for this disease? Are you surviving? Hope you are keeping your head above water, this is all so hard, especially with children. Think of you often.
Angie1953
Posted 11/14/2012 10:02 PM (GMT 0)
Angie, thanks for making me feel even more welcome here. I appreciate it. This is definitely a roller coaster ride but my dad has always been there for me my whole life and now it's time for me to be there for him. I don't have much experience with your situation but I know you must be a strong person to keep yourself together through all of this. I wish the best for you and your hubby.
Posted 11/14/2012 11:45 PM (GMT 0)
OK,,I am trying to stifle my disappointment with Hospise. Although the two persons that came out were very nice, what they had to offer were things that we don't need.... I guess.

They will send an Aid or RN (their choosing) 2 or 3 times a week to spend 1/2 hour with hubby to talk over dieing process and check his blood pressure, and just to make sure he is ok and not in pain. We can't set up a regular schedule, they will call to say when they can come (and sounds like we then work around their schedule.) He told them he is ready to die, has dealt with it and really doesn't feel like talking more about it. He doesn't want help with bathing at this point and says he can do it himself, as if they help it is around their schedule.

When I mentioned some counseling to help us deal with the waiting...waiting...waiting for him to die they seemed uncomfortable and said they help him live better, but they didn't offer any counseling for us. And suggested that they would help hubby plan a trip if he wanted to travel before he died ????? What?? He immediately thought they would transport him and pay for the trip. So he was excited until he found out that, no, I would have to pay for trip and take him, and of course, we can't do that with finances so short and his health problems.

They said to call them if I need something so I made a list of all the things we need help with and none of it involves talking about dieing or making arrangements for death, funeral etc. We have done that. We need help with living, but seems like what they do is come and talk to hubby, talk to Dr., talk to funeral home director, talk to county attorney (once he dies). I can do all of this talking. I need more concrete help. Hubby asked if they made food, helped clean, do laundry, carry trash to dump, shop for groceries, get furnace fixed, get sink fixed and no that isn't want they do. They do have a one hour respite for me, however we live 20 minutes from town, so by the time I go somewhere and back, time is gone.

Perhaps I am just a major whiner,.....or we aren't needing hospice yet........or my expectations were way high.....or I haven't given them a fair chance. Help me here with some insights. I am so close to the situation, it is hard for me to see how this helps us. Hubby feels the same way. I don't want to sign up for this service to have Medicare pay hundreds of $$ for this stuff we don't need. According to their paperwork, each social worker visit costs $322 and each skilled nursing visit $240, and each hospice aid visit $106.

Those of you who had Hospice and found it helpful, what did they do for you that helped? I could use some guidance here from those of you who have been through this. (If you feel I'm just whining or we are not ready for this service, just tell me.) Thanks for any input.
Angie1953
Posted 11/15/2012 3:32 AM (GMT 0)
Oh Angie,
I am so sorry. Maybe it was because we were in such a small area and to be honest, I don't know what any of it cost. But I felt that the biggest thing that hospice offered us was choices about how to live what was left. And it was all about our schedule, not theirs....

There were not a lot of choices, but we had some. And they really helped us to realize those. It wasn't much, for Craig it was being able to go back up to the woods. that was the goal. Get there. We did. It was terribly hard. But the hospice counselors were good for me. Craig could not have cared less. He was where he wanted to be.

They couldn't change the outcome. But they helped us get there. Gosh, there are so many really personal things that I could tell you. Email me if you want. I can't post it here. Craig would be so pissed. Proud to the last.

Pray for you every night and often during the day you cross my mind and I offer it up.
Posted 11/15/2012 4:55 AM (GMT 0)
Angie, I feel that your hubby may not be quite ready for Hospice services. They are quite good at knowing when death is near--like within 24 hours. Their primary function is to manage the patient's pain, making sure he gets the right kind of meds and that they are sufficient to ease pain. I have known people who were very close to death and were in and out of consciousness and unable to swallow. Hospice nurses gave morphine rectally (in a suppository form?) They usually are quite good at helping the caregiver/family express their emotions and make peace with them.

A good part of their service is having both the patient and the family accept that the only outcome is death. Since you both have discussed this and made plans, they can't really offer help in that area.

No, hospice doesn't offer housekeeping services. And I know Medicare doesn't cover it. You would either have to pay out of pocket or find a volunteer organization to help.

Hugs,
Connie
Posted 11/16/2012 12:21 AM (GMT 0)
Thank you for the responses. Hospice social worker called today and could tell I was in tears. Hubby and I had just been talking and just saying to each other that we are both SO READY for him to go, but it is just not happening. What are we going to do? I just can't handle this stress too much longer. I feel like I'm going to implode.

Hospice worker came out, was very comforting and asked us what WE needed and we gave her a list of what we need to make our life easier and she is going to work at getting some help for those things. What a relief!!

It is really hard for me to admit to needing such basic things, since I have been the wage earner most of our married life. Makes me feel like such a failure!! Hubby, too.

He feels badly that none of his family have offered to help...or sent him a card...or nothing. Me too, I am just floored. I can't imagine everyone is so busy they can't mail him a card. I don't get this. It is not like we never saw them. We traveled the 1200 miles to see them, we sent them gifts and cards. Very hard for me to swallow. They are loving caring people so just don't get it.

I have this urgent urgent need to "get this over with", so we can move on with our lives. And then it hits me, by "getting this over with", I will be traveling on by myself. Double bind big time.
I know I need to mellow out. Thanks for the opportunity to just vent.
Angie1953
Posted 11/16/2012 1:25 AM (GMT 0)
Oh Angie,

I am so sorry to "hear" the distress you are in.  I have no experience with hospice, but I am sure there are others here that do, so they can offer up what they have been through.  Is there any church or other outreach group...maybe even through the hospital...that can offer some kind of assistance?  It hurts to read that you are both just ready for this to be over...and to move on...and that you will move on alone...I can only imagine how hard this must be.  Have you tried to call his family?  Maybe they don't know how serious and dire his health situation is?  Hang in there.  You have been strong for so long, you just have to keep on being strong.  I will keep you in my thoughts tonight.  For strength, peace, and hope.

Emma

Posted 11/16/2012 2:11 AM (GMT 0)
Angie,
I am four months into my moving on alone. I don't know which was harder. But you, my girl are seriously on the edge. You have to ask for help. Specific help. People want to do the right thing, but they are not there and do not see. Call his family - tell them. Tell them they need to send a card. Visit if they can. Call. What ever it is. Don't let them say later that they didn't realize.

Swallow your pride and ask. It is not a failure, it is just new. It only hurts a little. Honest.

XO
Marie
Posted 11/16/2012 2:35 AM (GMT 0)
Angie,

Please email me again. I tried to reply to your email twice! I thought the last one went, but it is not in my sent folder and I deleted yours so I don't have your address :(

Marie
Posted 11/18/2012 11:59 AM (GMT 0)
Marie,

  Thanks for the email.  It helps.

******

I am having a hard time this morning.  Yesterday, I made arrangements to give away 5 of my little horses, as it is obvious that this process is going to drag out much longer.  It is truly heart breaking for me...I know the loss I'm grieving is loosing my husband bit by bit, too, but feels like I really have "no future" now.

Hospice helped my husband sign a DNR order and explained that if I find him on the floor dying, don't call 911, call them and they will come out and set with me while he dies. (They put it nicer, but that is the jest of it.)

He always acts so surprised when they talk about his dying, like he has forgotten that is where this is headed.  Then in the next breath says he is ready.  Probably the HE.  I am trying to be compassionate, but I am really bitter about all of this.  Wish I could develop a kinder heart..don't know if that is possible and still be strong enough to keep everything up and running without being in tears 24/7. 

Job I was hired for finally called friday, and wants me to travel 100 miles (one way) for two days of training the week after Thanksgiving, so will try to find someone to stay with him those days. Doesn't sound like this will work out, as once I go through the training, I will be "on call" to work when they need someone (privatization of child protection services), so sounds like I can't count on any specific # of hours of work.  

All this feels so overwhelming.  I know that so many other caregivers are going through similar situations and are doing so with a much kinder heart and more compassion than I can muster.  Please pray for  my husband and I to get through his nightmare quickly.

Angie1953

Posted 11/18/2012 1:34 PM (GMT 0)
Good morning Angie,
You are up early! I am so sorry about the horses. I think you are right about the underlying grief. I think you are being very hard on yourself. Or maybe some of us caretakers haven't been as honest about our feeling as you are. There were days when I just wanted to scream until I was hoarse, hit something, and then when I was too tired to do anything else, crawl into my mother's lap and cry until I fell asleep or died. Didn't care which.

Some days I did scream, in the car on the way to the drugstore. By the time I got home, I had thrown my neck out and it was stiff for three days! I am pretty sure I broke a few things. A shovel. Some crockery. I was pretty ugly sometimes. about the only thing I was proud of was that I didn't go off on him. At least not much....

Mostly I prayed to God, and I felt like a toddler having a temper tantrum in those prayers. I was anything but reasonable. I bargained, pleaded, cried, yelled. threatened. Somewhere, I did finally feel God's arm around me, just holding me until I quieted. I could hear the murmurings of comfort, finally.

I hope you get to a good place today, Angie, will be thinking of you.

Marie
Posted 11/18/2012 6:21 PM (GMT 0)
Angie, I think his family must be in denial or just doesn't realize how sick he is. I agree that you need to call them and let them know.

It's good to hear that the SW came out and may be able to fulfill some of your needs. As far as the job goes, this may not be the time to be get involved with that. You are too close to the breaking point to be able to add any more stress. And if he should die while you are away, you'd never forgive yourself.

When my love interest was just my friend, about 17 yrs. ago, his then-g.f. was dying of lung cancer that had metastasized to the bone and other organs. It took bout 18 mos. from first symptoms until her death. At one point he was on edge, like you, and yelled, "When is it going to be MY turn? When am I going to get attention and have things done for me?" Even though the g.f.'s family took turns on coming down to help with her care, the bulk was on him. He had been with her for 16 yrs., so there was a heavy emotional toll, also. He wanted it to be over, and then felt guilty for feeling that way.

A caregiver's job is not easy, especially when a spouse or lover is dying. Your emotions are normal. It's very difficult to keep giving and receive nothing back; to have all your time and attention invested in another.

When he finally does go, the silence will be deafening. I hope that Hospice can find you some assistance.

Hugs,
Connie
Posted 11/18/2012 8:54 PM (GMT 0)
Dear Angie,
I know EXACTLY how you feel. My husband is also terminal, in a lot of pain and recently was admitted into at home hospice. He also has made his peace a long time ago about passing on. But - for both of us - it seems like it is taking so darn long! He was diagnosed with ESLD three years ago, and started hospice two months ago. I recognize your stress and edginess - I see it in myself also and I don't like it. This is NOT the person I want to be! It is all so overwhelming and demoralizing. I am constantly dodging, spit, phlegm, blood and pee - all those nasty and toxic bodily fluids and get no recognition from the ill spouse that these things put me in danger. I am tired of constantly - every day - having the same conversations regarding medicine dosages and wound treatments. Because he forgets and/or doesn't believe me. It is all so stressful. And every morning, we wake up and each of us thinks "darn, you're/I'm still here". What a horrible thought, and yet ones KNOWS its coming, and one also knows its the only release from this madness we call our lives. Oh yes, I've made my vows - "I will NEVER get married again!" "I will NEVER have pets again!" (I'm also dealing with a sick and old kitty who takes 6 meds I have to cram down her throat every night and regularly misses her cat box - more toxic waste to deal with and clean up.) I honestly never want to put myself in another position where I might end up being a caretaker again. Yes, it's that traumatic. But what can I do about it today? Suck it up and try to enjoy the little fleeting moments. They may not be enough to cure all the stress, but they are a small reprise so I can take the next step. This disease is madness, for all those involved.
Posted 11/20/2012 1:24 AM (GMT 0)
This post speaks to the last post by CreativeSoul. Hospice RN came in today and noticed that I was having a very hard day and she asked why and I explained pretty much what CS just posted.

RN explained that there is a difference between "process of dying" and "actively dying" and in the conversation that followed it became obvious to her that hubby and I have thought when the Dr. said (2 years ago) that hubby is in the process of dying it was a "it's happening now" type of thing. So...we were frustrated...ready and frustrated.

RN said she sees no signs of "actively dying" and so we should "live our lives as if he has 6 months, 1 year, 5 years or 10. Who knows for sure." We, never having gone through this, really didn't know this. I and hubby thought that when Dr. says in the dying process...he meant ...shortly. This may sound like a small thing to those of you who work in the medical field or know this, but it was new to us. We both wish someone in the medical field would have told us this a long time ago. It sounds like such a small thing, but would have really helped us both.

We have both stepped back, taken a deep breath and are shocked to hear hospice nurse say she has people that "go off of hospice" after 6 months because they are not yet "actively dying."

OK...Things are making more sense to us. We can deal with this better after asking her the specific signs of "actively dying." And we can move on with things we want to do, as opposed to waiting for the other shoe to drop (so to speak). Hubby was as surprised as me to hear this.
Anyway today it seems to help us both.
Angie1953
Posted 11/20/2012 2:20 AM (GMT 0)
So glad for you Angie, that you have another piece of the puzzle.

I don't remember who said it, but words that also helped me tremendously were "enjoy the good days, get through the bad ones, and don't turn the good days into bad days", or something to that effect. I am still trying to do that.

Have so many of you on my mind tonight. Going into Thanksgiving I am thankful for all of you and the help you continue to be to me on my journey....

Peace,

Marie
Posted 11/20/2012 2:25 AM (GMT 0)
Actually, Angie, I think it might have been you!
XO
Posted 11/20/2012 2:32 AM (GMT 0)
Ya, how easy it is to forget your own advise.

I'll try to remember it myself.   Thanks

for the reminder.

Angie1953

Posted 11/21/2012 7:30 AM (GMT 0)
Hi Angie,

Thanks for sharing the explanation of "process of dying" and "actively dying". It does make a lot more sence. I also have heard that some people are released from hospice if they stabilize and their condition is not worsening. Also, thanks for the invitation to email you, I would like to do that. Won't be until after next week however, I have a whole house full of relatives for the holiday right now. I hope everyone has a wonderful thanksgiving. I know that even with the challenges, I still have a lot to be thankful for.
Posted 11/21/2012 4:46 PM (GMT 0)
Enjoy your houseful of relatives, CreativeSoul.   Catch you next week.

Wishing you all out there in HW land the best on Thanksgiving

Gobble  gobble   (oh, yea and oink oink)
     ^^^

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