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I am scared. But hopeful. Please help me here.

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Posted 4/2/2014 6:13 AM (GMT 0)
I have been very hopeful, and the waiting is horrible. Tonight I got through to the docs and nurses that she NEEDS lactulose enemas. I talked to her on the phone, last time I was there but tonight when I came in to see her she was 'ok-ish' and sleepy, but the night before they had done a ton of lactulose through the feeding tube and she seemed to have come back around from HE.

I know this is a new thread, but now I am just back to scared.

I know she has to stay in the hospital until they get a new liver for her. But I don't know how long till, and I don't know how long she can hang on. She is so darn strong and has fought so hard and is so willing to take whatever comes to get there...but how long does that take? Nobody knows. How do they allocate? Where? We have good ideas but even the surgeons have not an idea until UNOS pops up and says we have one for you? That is what I got so far.

She is O+. Type frigging O+. (Her Mom is O- that caused some fun for her when she was born!) And that is the stumbling block. What exactly does that mean for her? Does she even HAVE a chance? At what point do they say that even if you are 'common' blood do you get one? Do you have to wait until ALL the RARE blood types go first? I can't eat. Can't sleep. I do the work thing, but could do that regardless, I am that type. I work, and enjoy the lost moments while I create/cook.

My biggest problem here is at 5 months of non stop drama/trauma I feel there is nobody that wants to talk to me anymore. And this has been a serious 5 months on trauma.

Almost bleed out to start, kidneys fail, go backwards, kill liver totally (it had damage before) kidneys start again, told they will fail, but not sure when, 4 months and a touch in they do that, start dialysis, move to a diff hospital that can do a transplant sooner but still have to wait on that list...

My emotional rollercoaster is hitting a high note. So much is riding right now. I KNOW they can keep her alive, and I am so very grateful they listen to simple things I know about such as she is experiencing a special sort of hell right now. Lactulose enemas. I am not there and I feel a jerk for it. But I have to get up in 6 hours and work. And have made us get through on one paycheck, a small one, this far.

I don't like being scared but something needs to come soon, she needs it now and if not...yeah.

I really wish I had her numbers right now, she is 'listed' at 40 but they say her number is more like 50, but that is not on the UNOS deciding factors.

She has had enough pain and agony, I really think she has learned a lesson. That life is more important. As I heard her say many times, and this is what she deserves "I just want to be NORMAL again."
Posted 4/2/2014 6:27 AM (GMT 0)
What meds can cause HE faster? I would like to know...I need to know as this is the biggy right now. I mean, her Ascites is ridiculous, she has had therapeutic drains 5 times now and they really didn't want to but HAD to. 4 liters first, 6 next, 5 , 6 then 6 again. The bleeding, omg, it has been...serious so many times. You should NOT LEAK THAT MUCH. We are such and ill designed creature. We should be able to hold our blood like we hold our breath. But yeah, guess you have to exhale sometimes. I just wish it would not be so dramatic. As in having to replace ceiling tiles. I just want to know this will be OK. I know how it might go but darn it she has fought TOO hard to get here.
Posted 4/2/2014 12:32 PM (GMT 0)
i had HE so bad ,i was receiving ,enemas not a lot of success then an older dr.said to give me Sodium benzote also .well that did the trick for now anyway also i am being tapped 2 times a week 5 -6 liters each time..please hold on...and ask about the sodium benzote
Posted 4/2/2014 12:52 PM (GMT 0)
RK,

Very worrisome all this fluid. But folks have had much more taken at paracentesis. Maybe A. Ziff will pipe in with his paracentesis experience.

And the bleeding is not so unusual with a very sick liver patient. Their platelets get dangerously low and cannot clot if there is the tiniest bleeding anywhere. Mike once pricked his tongue with a toothpick and bled profusely from his mouth for 4 hours. That was before we realized bleeding like that was a 911 emergency. Several caregivers here have had huge bleeding emergencies and made it through.

However, to me it seems she is very very very ill. I am so sorry she is at this point. Only a transplant will cure what ails her and then her ability to come back may be in question.

Many prayers coming your way. Do YOU have support at this time? Family, clergy?

Hugs from FL,
Carol
Posted 4/2/2014 2:33 PM (GMT 0)
Hi, sounds like you are exhausted and scared. I am sorry your wife is struggling right now and know how difficult this disease is for the spouse.

I have gone back through your posts. Many asked for the same numbers I am going to ask you for once again. You do have recent labs?

Help us give you better information and assistance about the questions you want help with.

From her recent labs, can you please tell us her Bili, Creatinine, INR numbers?

Big hugs....
Posted 4/3/2014 1:55 AM (GMT 0)
Hello Rkayne, I'm a 45 year old male with ESLD due to alcoholism. I basically slept or in a coma for over a week after diagnosis and admitted through E.R. My kidneys had failed and my liver was severely damaged. I have to disagree with you on the "poor design" of our bodies. Mine took years of constant abuse and surprisingly lasted as long as it did, Obviously I'm still here and I was diagnosed 5 years ago. Two different GI doctors gave me a maximum life expectancy of 3 months at best.

I no longer drink and live a healthy life style. I had chronic Ascites problems that had me being drained up to twice a week at 6 to 9 liters each visit. I had 12 liters removed a few times prior to the two week intervals. The tiny hole the needle makes does tend to leak on occasion. What I used to do was rap a stretch bandage around my waste (not too tight) and use a sanitary napkin as a absorbent to catch the fluid. There is a liquid band-aid they could use to try and plug the hole but it doesn't work real well.

I received T.I.P.S surgery once I made it through pre-transplant evaluation to relieve the Ascites issues. Diuretics had little to no effect on me and surgery was my only option to lead a somewhat normal life. The surgery carries inherent risk like any other but there is a chance Encephalopathy will dramatically increase in a few cases. I have been taking Xifaxin and Lactulose practically since I was diagnosed. I still have mild bouts of Encephalopathy even with taking my meds but nothing serious as I had initially when diagnosed.

I certainly understand your frustration and know all to well that feeling of isolation when dealing with the unknown. I felt it myself and seen it second hand in my wife's eyes watching me slowly die (or so we thought). It's hell my friend. You've found a great support group in this forum. I've been a member here for eons. Seen a few friends die and am glad to say I've seen alot who have survived. It takes guts and stong will to beat this on both sides (caregivers and patients). I look forward to seeing you here and letting us know how things are going. Never hesitate to ask a question.

Ziff
Posted 4/3/2014 2:46 PM (GMT 0)
A liver came in last night. It is perfect. She will be in surgery in about 15 minutes. This is HAPPENING. She is going to be OK!!! I am so in awe. And so thankful to her donor. I am so happy and I know this is going to be OK now. I can't believe all we have gone through. I am sure she will be popping on here in a few or so weeks and will be very helpful to anyone going through this. We are going to win this fight and always be so grateful to all and everyone, but mostly to the person who chose to be a donor and has given her this HUGE gift, this most amazing gift. I watched through the night as they primed her with 11 units of RBC's, 7 units of platelets, 4 units of some other thing and then at the last moment started something called Cryo, a magic no bleed agent that will last 6 hours and get her through the roughest part of this HUGE surgery. Everything I have read here has kept me relatively sane. I know we will be able to give back and help the same way!!
Posted 4/3/2014 4:19 PM (GMT 0)
Great news! Keep us up to date of how she is doing. I love hearing these stories of people getting their transplants. I cannot wait to hear back from you on how she is doing.
Posted 4/3/2014 4:34 PM (GMT 0)
Crying happy years with you. Fingers and toes crossed. Saying prayers and sending much good luck your way. Hugs. ML
Posted 4/3/2014 5:51 PM (GMT 0)
Thinking of you both! So very happy. Big hugs...
Posted 4/4/2014 1:30 PM (GMT 0)

rkayne said...
A liver came in last night. It is perfect. She will be in surgery in about 15 minutes. This is HAPPENING. She is going to be OK!!! I am so in awe. And so thankful to her donor. I am so happy and I know this is going to be OK now.

Very happy for you and your mother, great news!!!
Posted 4/4/2014 1:56 PM (GMT 0)
Rk...news? Worried we haven't heard. C
Posted 4/4/2014 3:19 PM (GMT 0)
Is it her mother or her significant other?

Hopefully we hear something today or tonight mama. I would say right now she is going through the rush of everything happening. I can only imagine how fast this has to be going now that the transplant is done.
Posted 4/4/2014 5:02 PM (GMT 0)
rkayne-praying for you and your family.

emma
Posted 4/4/2014 6:36 PM (GMT 0)
If it were me the internet wouldn't even be on my mind for a while.
Posted 4/4/2014 9:28 PM (GMT 0)
Haha! Furious is a bit right. All went well! It started working right away and so are her kidneyhs. They are going to do a round of dialysis to get the fluids down. But all is going to be OK!!! I am so in awe and amazed. Dr. Hart is an amazing surgeon!
Posted 4/4/2014 9:30 PM (GMT 0)
And we are married. Just to clarify, lol. They let two girls do that now ;)
Posted 4/4/2014 10:14 PM (GMT 0)
Prayers answered!! And it is great the new liver is doing its thing...right away. She'll be in lala land a while. Best to you both. Hugs, Carol
Posted 4/4/2014 10:35 PM (GMT 0)
Such good news! I am sure you are still exhausted, but it must feel a lot different on that side of transplant. Best to you both. Big hugs,
Posted 4/4/2014 11:03 PM (GMT 0)
Heck, I went to work today!! Need every penny I can drum up for the unpaid leave I will be taking. I will be out at least two weeks, they figure this will be an easy recovery for her, considering what she has been through, and now that she can actually have painkillers. I send love to the family that lost someone and hopes that more people consider being a donor. Myself, I am a donor but ONLY in a living will. That they can take what they need but it has to be within a week, and then let me go. They still have her intubated, but they want to take more fluid off before hand.
Posted 4/5/2014 12:55 AM (GMT 0)
Rkayne

I hope my comment about significant other was not misread. I just knew it she was your spouse not mother, and did not know you were married.

I was happy seeing you responded, like mamma said, after no response we get worried. We all know you have many things going on, excitement, joy, being there for her. Make sure you take this time to get rest. Once she is home you will need it. She is going to rely on you heavily for some time.

SyXx
Posted 4/5/2014 2:37 AM (GMT 0)
Oh, yes she will. And I have plans to have at LEAST two weeks off. I have a loveseat and chair to put together right now. I came home early (I do have to get up super early, I run the fry room tomorrow starting 6 AM) as I was more an irritant tonight as she is so lucid she is writing, she writes "Tube, come out?" and I had to say no. She writes "When???" and I have to say maybe tomorrow. Her eyes are getting SO white!!! Her colour is SO much better. But there is all the fluid. All the fluid that was there and all the fluid pumped in so they are doing a slow/soft fluid dialysis through today and tonight to get that off. I tried to tell her she has fluid in her lungs, not much but enough that she NEEDS to have that darn tube in, but it is hard when she feels so much better already, my poor baby. She is going to be fine but it is hard to see her like this. It has been all the way through.
Posted 4/5/2014 3:12 AM (GMT 0)
So happy to hear ... hoping and praying for the best for both of you! Thanks for sharing.
Posted 4/5/2014 6:31 AM (GMT 0)
Congrats to you both! Keep us up to date,

-K
Posted 4/6/2014 7:12 PM (GMT 0)
rkayne has started an Autoimmune Hepatitis -- Post Transplant Blog here: www.healingwell.com/community/default.aspx?f=25&m=3043429

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