HealingWell
Search Close Search
☰

Newbie

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/14/2011 3:19 AM (GMT 0)
I too am sorry to hear about your fiance. I hope they can get him the help he needs. I'll be glad when his Dad gets here so you will have some support. Hang in there!
Posted 2/14/2011 8:00 PM (GMT 0)
Hi All,

Thanks for all your thoughts and prayers. Also, Happy Valentines Day :)

I am in ICU waiting room and my fiancee is asleep.

He had a 'good' day yesterday as he is on lots of morphine and got about 5-6 hours sleep. They were going to drain the fluid out of his belly yesterday but his blood isn't clotting so they kept pumping him full of plasma. They're going to do some more tests today and then see if it's OK to start. Having trouble with his veins as his blood doesn't have enough volume.

We held hands yesterday and I gave him lots of foot rubs. I got 'Three's Company' on dvd and we watched an episode with headphones and laptop. Fiancee had his last morphine for the day just as we started watching and he stopped me halfway through and told me how nice this was. Not exactly like home but good enough right now.

Swelling is his feet has gone down a little but his belly really hurts. Nurses are lovely and they let him have his 'Twizzler' candy yesterday. Fiancee was chatty and he gave me instructions to get flowers for ICU nurses and a card for them so we have a dozen red roses on their station and it got a smile out of them. The florist was packed with sheepish looking men this morning awkwardly balancing candy, flowers and balloons. Who said romance was dead ?

Funny too how fiancee seems a little like his old self again because of the drugs and even cracked a joke. He is on strictly controlled liquids - only allowed 1 litre a day and has been allowed to 'swap' a milk for a gingerale, for example. Well yesterday, he jokingly asked a nurse in a sweet voice if he could please swap all his liquids for morphine ? Nice try, huh ?

We are still waiting to see how he goes over the next few days. His family should be here in about 2 hours. Will be good to see them.

Never been so tired in my life but it's OK. I really appreciate you thinking of us.

Philosophy and Mary - I'm thinking of you. So hard to get them to see a Doc. My fiancee was asking me to please wait another day on Friday. This was after I carried him out of the tub and dressed him too. Some men are really stubborn anyway but I think also it's the hepatic encephalopathy in the mix too.

Love to you all this V-Day x
Posted 2/14/2011 9:38 PM (GMT 0)

Kelli, it's good to hear from you.  Thanks so much for the update!  I know he probably needs it, but I'm a little concerned about the morphine.  I hope they will be able to decrease that and stop it altogether before discharge.  It is far too easy for an alcoholic to switch to drugs, especially pain meds.  I did it the opposite way:  Was a drug addict first, kicked that and had 18 mos. of outpatient treatment, and while I was undergoing group therapy 5 1/2 days a week, I switched to alcohol.  They knew, but didn't do anything to stop me...because alcohol is legal.  And it took some years to become a daily thing, but almost always caused problems.  A drug is a drug is a drug.

Happy Valentine's Day to you, too!

Hugs,

Connie

Posted 2/14/2011 10:15 PM (GMT 0)
absolutely... and when a person is verbalizing a lot about it... that's a good sign...to be careful...just a thought... and my prayers are with you.. and yours glad you are seizing those small moments together... Sandi
Posted 2/16/2011 8:12 AM (GMT 0)
Hi All,

Another day in the ICU. I'm pretty tired so I'll try and keep it short and sweet tonight.

Spoke to Fiancee's Doc today and we both asked about liver function, specifically MELD score. His score is 41 and he has Hepatorenal syndrome. Basically kidneys are failing as is liver. I asked about the possibility of kidney dialysis while we wait for liver transplant and was told that they can't do it because another major organ (his liver) is failing. We asked how long we have, what happens now and were told that we will have an honest answer tomorrow. I think her face said it all really.

Pumped full of plasma and goodies this afternoon before getting some fluid drained. Took 3 litres today and attached a bag to let some leak out. Bizarre to watch 3 litres of yellowy brown stuff just come out with such force. He is normally 190 lbs, 6'3 but before the fluid draining they weighed him and he was 235lbs - which explains why I nearly broke myself getting him out of the tub Friday night. They estimate he has lost 40 % of muscle but is carrying many pounds of fluid. Upping the lactulose and other stuff today too. Poor thing was exhausted by the end of the day - took some last minute x-rays which required painfully rolling him to one side so we could make sure he didn't have a bowel blockage. No bowel movements when I left at 10pm but hopefully some tonight after I left.

We are not giving up anytime soon but we talked about dying today. Said if this is it, then he wants to go to the Four Seasons in Bali for a few days. Failing that, he wants to go to a hospice or come home. I would like to bring him home / hospice so he can be comfortable and looked after.

I know the MELD score is bad - it got worse over the last few days. I'm still quietly hopeful X
Posted 2/16/2011 1:21 PM (GMT 0)
I think that hospice/home... is a good idea...but get help...it's a tough time...you must act and think like it is the "real" deal... and hope for the best.... I just went through this alone about 10 months ago... well I had this forum...it feels very surreal...just one moment at a time...it happened very quickly for us and it was 24 hours... from the point from where you are right now... but everyone is different... and some people have pulled out of this type of situation...focus... focus ... focus... take a deep breath... go to the chapel... I did...and center yourself... or whatever works for you... take a breath... take a step back... and come here... we're here for you... my thoughts and prayers are with you and hubby today... Sandi
Posted 2/16/2011 9:00 PM (GMT 0)
Kelly, I am sorry that things aren't going better. I will keep you and fiancee in prayers.

Emma
Posted 2/16/2011 9:35 PM (GMT 0)
I'm sorry too Emma, I am saying a prayer for you now!
Posted 2/16/2011 10:16 PM (GMT 0)

Kelli, 41!  Wow!  That's the highest MELD score I've ever seen mentioned on this forum.  I am just so sorry they are unable to do more for him.  At home with Hospice is probably the way to go.  Hospice will be helpful to you, too.

Try to get some rest yourself.

Hugs,

Connie

Posted 2/19/2011 4:33 PM (GMT 0)
This is so sad.

I am glad you are thinking about hospice.  That sounds like the way to go.  And that he is aware enough to talk about death. 

I looked up the mayo clinic site on MELD scores and the 90 day mortality rate for a score of 41 is 91%...91% don't make it 90 days.  The situation is dire for you both.

My hubby got sober last September and his MELD score has rebounded from 24 to 17 in just these few months...and if you check Rick's posts, he has had an amazing rebound that has lasted some years, just by changing life style.

I think you are being realistic to be ready to face the worst, but still hopeful.  Maybe the vacation can be something to look forward to if he gets well.

I am glad his family is here and that he is being so sweet.

Hugs,

Carol

Posted 2/21/2011 2:14 PM (GMT 0)
Hope everything is okay Kelly.

Thoughts and prayers.........

Posted 2/23/2011 4:21 AM (GMT 0)
Hi All,

Thanks for all your thoughts. It really is a roller coaster every day. We have good days and I am full of hope and then bad days when I feel like my heart is going to burst out of my chest with grief and I don't think I can take anymore.

My fiancee's family flew in for a few days and it was great to have someone to talk to and feed me the hot meal every now and again. I was also on the verge on losing my mind too, so their timing was perfect.

My fiancee is apparently improving everyday but the Doctor will not give us a definite answer on when / if he can come home, or whether we fly him to a bigger hospital. Basically they are keeping him stable is what I'm being told and that is it. We have not been given any news about how long he might survive without a liver transplant but as he seems a little stronger every day I feel hopeful that his MELD score will go down and that we might actually have a miracle. Now that he is 'stable' someone told me that when he arrived Sat 12th Feb, they thought he was going to die in a few hours and that he has stunned them all.

As the hospital was going crazy the other night, they moved him out of ICU and onto another floor as there were several patients on ventilators that needed critical care.

On Saturday he was throwing up after each time he took the lactulose and they decided to do an abdominal x-ray. Apparently his intestines were sluggish and the med's were pooling. The Dr suggested that they stick a tube down to his stomach but fiancee declined and voted to wait until the morning. He was much better Sunday but I discovered in his wheelie bed table tray that he'd stashed 2 doses of lactulose. My fiancee became angry and defensive when I confronted him about the doses and gave me some spiel about how his Dr said he didn't have to take as much anymore. I have a pretty highly tuned bull-spit detector and checked it out. Not true at all and I warned the nurses re: the stashing.

Today my fiancee was acting silly and sleepy and strange. He'd been trying to sit upright for 30 mins today in a wheelchair and had also been trying to walk the hall using a walker. I put all these symptoms down to exhaustion, etc. Wrong. No lactulose = weird and angry behaviour. Found a dose in his tray at dinner time when they came to give him another dose at 5pm. Fiancee is calling me, among other things, a '****' because I'm insisting he take the darn lactulose. We're even mixing it in a small amount of 'slurpee' from the local 7-11 to try and make it go down easier. Nurse explained it's oral or enema baby. Not any other way to take it and it gets this weird plastic-ky film on it if you don't take it right away.

I'm exhausted, tired and worn out. Last week I got about 4 hours sleep a night and I've realized that I need to take better care of myself. I told fiancee I was going to leave early tonight to try and get some sleep and he was pouty and upset with me. I'm going to make an appointment to see the hospital social worker as I'm feeling angry and resentful and really really sad. My fiancee has these awful bed sores on his bottom and it actually physically hurts me to put cream on them. It's as though his nerve endings are connected to mine.

I wish I could get some answers from anybody about what happens next but no luck so far. Fiancee is off the plasma transfusions but is receiving potassium IV and antibiotics. Belly is STILL draining fluid - around 1 litre a day. Dr has said that once this incision slows down, that she will make another close to it and see how much else comes out.

Has anybody had a really high MELD score like this before ? (41) And what happens now ? :(
Posted 2/23/2011 4:45 AM (GMT 0)
KellyBelli-I will keep you and your fiance in my thoughts and prayers. Remember as hard as it is to do it, you have to take care of yourself. I have been seeing a counselor since my hubby was dx with cirrhosis. It has helped me to deal with the stress and overwhelming sadness.

Emma
Posted 2/23/2011 5:00 AM (GMT 0)
Thanks Emma, I think I really will too. The stress and sadness is like a tsunami. Some days I feel like I want to get under the covers and never, ever come out.

Today there were wild deer grazing at the hospital grounds as the snow fell. It was beautiful and I have to keep reminding myself that this stuff is out there. It was a nice scene in a bleak day.

My fiancee doesn't seem to see / understand that I need to take care of myself too - can't expect him too given how sick he is but I have to sleep too :)
Posted 2/23/2011 5:04 AM (GMT 0)
K/B...I feel so badly for you. I have never heard of a MELD score so high. It amazes me that he is actually talking to you at this point...and not somulent all the time.

YOU have to take care of yourself right now, becasue without rest and nourishment you can't look after him at all. Refreshed you can bring patience and perserverence and support. If you crash, then where will he be?

We are thinking about you and hoping you can hang in there.

Carol
Posted 2/23/2011 10:47 PM (GMT 0)
Kelli, every day that he is sober is going to be an improvement. Usually, when one has a MELD score that high, they get a transplant (usually when MELD is in the 20s.) Of course, he will not qualify for a transplant until he has 6 mos. of documented sobriety. Meanwhile, if they can keep him stable and he doesn't drink, you (and he) may get your miracle.

I absolutely agree that you have to get sleep, time away from him, and be good to yourself. You can try to get him to understand, but with the encephalopathy, he may not and may get nasty about it. Just tune that out and do what you have to do. I also think counseling would be good for you.

It sounds like he is going to try to avoid taking Lactulose however he can. So that's something for the nursing staff to be aware of.

Please keep us updated.

Hugs,
Connie
Posted 2/24/2011 5:02 AM (GMT 0)
Hi All,

I feel more sane today because I am taking better care of myself. It's definitely a step in the right direction and I'm better company at the hospital when I've taken a time-out. Thank you for making me feel OK that I need to do this.

I feel so positive Mary when I read about your husband's MELD score coming down like that. I AM hoping for a miracle :) The chaplain came and saw us today and smiled when he found us holding hands. Apparently we seemed to be on the 'list' of people to see but that's OK. He was lovely and bears a striking resemblance to my fiancee's Dad.

Mama Lama - we have good days and bad days. Some days he makes no sense and hallucinates. He knows he is hallucinating but can be very confused and not remember anything at all. I'm so grateful for the moments he is lucid and knows what is happening.


So I saw our Doc this morning and she wanted to see me on my own to chat. She's off for a couple days at a conference but will be having another Doc come in a few times a day.

The Doc had stopped the albumin and harder medication for a few days to see what my fiancee's liver would do and if the MELD score's would improve slightly. She has him back on the Albumin and other drugs as his liver deteriorated and his MELD score worsened. The good news is that his kidneys have stabilized. The other good news is that they have increased the lactulose in frequency and volume and he is taking it quickly and efficiently - no more stashing the doses.

I asked if it is possible that he will survive the wait for a liver transplant and she can't be sure but says that it does not look good. Connie, he has not 'officially' been sober for 6 months ( AA recorded, etc) so once he is well enough, he will need to attend AA or the like. Our Doc told me that if there was nothing else they could do for him, they would send him home / make him as comfortable as possible and that they would let us know but that time is not now.

My fiancee has the physiotherapy team come everyday. Today my fiancee walked down the hall and back with his walker. Is having some more success in trying to sit up in bed.

His feet are still really swollen and the fluid draining has slowed down. The plan is to make another incision end of the week to drain some more. Sitting up and walking is very very good ! Very yellow though and not eating much. He's on a high calorie, high protein diet but picks at everything. Meal also comes with x 2 'Boost' supplement drinks but my guess is that he's eating 500-700 calories at most a day. Just not hungry. Little stick arms :(

Just going to take it day by day X
Posted 2/24/2011 5:47 AM (GMT 0)

Kelli, I'm glad you are taking better care of yourself.

Something you may not know is that liver disease causes muscle wasting ("little stick arms.")  It is normal for those with ESLD to have a huge belly and stick arms and legs.

Hugs,

Connie

Posted 2/24/2011 2:34 PM (GMT 0)
I can't believe the nurse(s) left without seeing that the lactulose had been taken. In all the time I've spent in hospitals, no meds were ever given to me, without the nurse watching to see I consumed them. They would stand there until the lactulose was gone, or any pills and capsules were down my gullet. What you described is incompetence or lazy; perhaps both.
Posted 2/24/2011 7:48 PM (GMT 0)

David, I'm always so out of it when I'm in the hospital post-surgery, that I can't remember much about my time there.  However, I suspect that Mayo would not leave medications for me to take, either.  I did experience that in the rehab center after hip revisions.  I had to take a medicine cup full of pills early in the morning, which made me vomit.  After this happened 2 consecutive days, I asked if I could eat breakfast first.  They agreed and would just leave the meds on my tray.  I would take them after eating, with no further vomiting episodes.

With them leaving his Lactulose without seeing him take it, I agree that it was lazy nursing, which also probably saved them time...maybe 10 min. or so if they did this with every patient.

Hugs,

Connie

Posted 3/7/2011 9:14 AM (GMT 0)
Hi All,

So it's been a while since I've updated and I wanted to let you know what is going on. I hope you're all well and looking after yourselves. I normally love winter but I'm really ready for spring right now.

My fiancee wasn't really getting any better over the last two weeks but appeared to stay steady.

Last week they wanted to tap some fluid and test it for infection as they suspected that he had bacterial peritonitis. He had a fever for several days and it wasn't coming down very much despite all the medication. The Dr's decided not to go ahead with the procedure as his INR score (blood clotting) was still very high and they were concerned he would bleed out despite 6 bags of plasma over 12 hours.

Late Thursday night we were transferred to a large hospital in another city so he could be treated directly by the hepatology team here. He's had a barrage of tests with more due tomorrow, they have already tapped the ascites fluid sample and now would like to take some fluid from a 12cm cyst he has on his spleen. The infection may be coming from here too ? Also we have an EKG booked as the team suspects his heart is under stress - his resting heart rate is averaging around 105-110 BPM.

Anyway, a very nice Dr came and saw us yesterday and told that my fiancee is not a candidate for transplant and the chances of him making it past the next 30-60 days is 10%. We were asked about DNR instructions in case his heart stops. Having said that, our Dr said he wants to try some more drugs this week. If he improves in the next 7 days, we have reason to hope but that he should have responded better to treatment when he was initially treated.

My fiancee has terrible bed sores on his bottom but nowhere else. His skin seems to be peeling like a sunburn ? Apparently this is normal, his skin is breaking down. Today as we wheeled him to a commode, he started bleeding from his bottom. More and more hepatic encephalopathy episodes - paranoia, confusion, mixing up time, etc. Still taking Lactulose but doesn't seem to be working as well despite larger doses.

Totally unreal situation. Still can't believe this is actually happening. My fiancee is here but not here sometimes, if you know what I mean ? I really miss him. I'm hoping that they spare him the pain and let us go home soon. My fiancee barely eats at all now.

Take care X
Posted 3/7/2011 11:54 AM (GMT 0)
Uso sorry to hear what ur going through....yes its hard...sometimes I just felt like someone else was in my body but therenis a clear need to rise above that and focus on details....power of attorney...medical directive....funeral arrangements.....etc...needs to be talked about...a girlfriend has no other protection and thank God for this forum because I faced his family...and had all that taken care of...sorry if I seem insensitive but I care...and want to see u protected and his wishes be carried through....its tough...and just when u feel there can be no more ur asked to go on further and then the dr holds out a glimmer of hope...I did it all and I never let go of hope and I never let go of loving Mike....together we walked the path to his last breath.....u r surely in my prayers both of u today...Sandi....
Posted 3/7/2011 2:36 PM (GMT 0)
(((Kelly))),  I am so sorry that you didn't get better news.   Just know that we are here for you.  I know it's like a bad dream......at least it was for me when I went through it. 

My one piece of advice for you is to tell him how much you love him frequently.....in between addressing all the final plans........

I ask my husband who he wanted to see........I got a hold of them all.   He got the chance to mend fences that needed to be mended.  He got the chance to say goodbye to all the special people in his life.  He actually had a blast holding court from his bed.   During that time all I wanted to do is curl into a ball and cry........but things had to get done....and I knew that there would be plenty of time to cry later....I was bound and determined to help him make the most of what ever time that he had left.  

Take care of yourself too..........lot's of thoughts and prayers........ 

Posted 3/7/2011 8:41 PM (GMT 0)
Kelly, I'm very sorry for the bad news.  I agree with the others that it's time to get Power of Attorney for yourself and a Medical Directive which includes last wishes for him.

The infection could well be coming from the bed sores.  This happened with my aunt, though not a bed sore...an area of breakdown beneath one of her buttocks, that she wasn't aware of (she was wheelchair bound and had no feeling beneath her waist.)  She ended up dying from septic infection (blood infection.)

My thoughts are with you in this difficult time.

Hugs,

Connie

Posted 3/14/2011 3:30 AM (GMT 0)
Yesterday was the worst day of my life. Today was much the same.

My fiancee passed away suddenly last night around 8pm. He had been very sleepy and tired for the last few days. His cousin and I were sitting with him around 7.30 last night and he said we could go, he wanted to have a rest. He had asked us to put a cold cloth on his forehead as he said he felt hot and had been having some difficulty breathing. The Doctors seemed to think that he had some mucous build up from lying in bed for the last month. He had a little mask and the nebulizer running but said he was OK. He was very weak and wasted. I'd been sleeping at the hospital the last few nights and had been heading to my hotel during the day to shower and change clothes.

His cousin and I went down the hall to chat and maybe 20 mins later we heard 'code blue' being called over the speakers and nurses were running towards his room. His cousin and I got up and ran there, hoping the whole time they were headed for the room opposite his or before his. He was dead by the time I got there. The Doctors told me that he had coughed up some blood and his heart had just stopped. He didn't suffer and they suspect he had some internal bleeding they had not detected. He had asked not to be resuscitated and put on a ventilator if this situation were to happen. He did not want to die and while his Doctors were afraid of the eventuality of the situation, there were no indications.

I'm hurting pretty bad right now. I miss him and I love him. I was able to crawl into bed with him for a short while after he passed away last night and hold him. He is / was my best friend and I really believed / hoped that he would come home and everything would be OK.

I'm lucky to have his Dad and Aunt here with me to help me get through this. The idea of my fiancee being in the morgue upset me more than I can say and today we arranged his cremation so I can take him home. I took some clothes and hopefully the hospital will release his body soon and I can take his ashes home at the end of the week. We are putting off a celebration of his life until Summer as we all need some time.

I wanted you to know how much your kind words and support meant over the last few weeks. I'll be on the caregivers thread from here on, but again a big Thank You.

For those of you who still have loved ones battling, I'll be thinking of you.


K x
✚ New Topic ✚ Reply
123