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Posted 1/25/2009 8:12 PM (GMT 0)

Penny, thanks for checking in!  So glad to hear that Harvey's recovery continues well.  I agree that you shouldn't rush getting him home.  His complete recovery is going to be a long, slow process.  It takes awhile just to get strength back.  It's interesting to me that he has only an L-shaped incision.  When I had the right lobe (and gall bladder) removed due to cancer, my surgeon cut vertically down the midline and then from one side to another.  Perhaps he wanted more access to determine if there was more cancer than was being revealed on scans.  idea

Continued prayers and best wishes.  And, as was suggested, get some rest!  wink

Posted 1/26/2009 11:36 AM (GMT 0)
I'm hanging in there. It has been quite an emotional rollercoaster ride. It still seems sureal and yes, I am exhausted.

From a medical standpoint, Harvey is doing very well. I just wish his head would clear up so he can share in the joy. He has to be reminded constantly that he had a liver transplant an that he will soon return to a normal life. He seems fearful and uncertain. He has been having hallucinations in the last couple of days. I'm told this is normal, but it's difficult to watch him struggle to hang onto reality. He sees people that are not there, animals, boats, etc. He'll say, "That squirrel just jumped into the water", or "Who is this laying beside me?" He relies on me to tell him what is real and what is not. The visiting hours in the ICU are very strict. I hate leaving him alone.

They are going to try to move him to the 4th floor Transplant unit today where he will have a private room. I will be able to stay with him there. I haven't had enough time to research the anti-rejection medications to determine if one of them is the source of the hallucinations. But I intend to do so as soon as things settle down. I would like to give him a clear explanation of what is going on an when to expect relief.

I'll keep you posted. As always, you are in my thoughts and prayers.

Penny
Posted 1/26/2009 11:41 AM (GMT 0)

Connie,

The reason they did an 'L' incision is due to advancements in retractors.  The Mercedes cut is no longer necessary except in extreme cases.  I don't know whether or not all centers are using the new retractors.  I'm certain that the 'L' incision makes recovery much easier.

Penny

Posted 1/26/2009 12:06 PM (GMT 0)
Penny

I am thrilled that things are going so well for Harvey. I can only imagine how exhausted you are at this point. Please remember to take care of yourself as he is going to need your care when he returns home. I am sure that with everything that has gone on and the physical state he was in that his confusion is normal. You both will continue to be in my prayers for a continued recovery.

Lucy
Posted 1/26/2009 2:23 PM (GMT 0)

Thank you Penny so much.  To do these posts right in the middle of your exhaustion!  I'm trying to take every thing in.  We are all thinking of you daily.

JoAnn

Posted 1/26/2009 6:27 PM (GMT 0)

Penny, thanks for the information.  I had my surgery done at Mayo, but it was nearly two years ago.  They are on the cutting edge of all new treatments, instruments, etc., so I am sure they are now doing the L-incision, as well.  I have no doubt that in due time, surgeries such as mine will be able to be done with micro incisions.  While healing from the outside happens fairly quickly, the inside healing takes months.  You might ask about an abdominal binder for Harvey before he goes home.  When he is not so raw, he might find that it makes him more comfortable and it also guards against incisional hernias.  I still wear mine at times, such as when I'm vacuuming or lifting.  I didn't exactly have "abs of steel" (far from it) prior to the surgery, so afterwards I feel as though I'm really "hanging out."  I've found it's much more comfortable than a girdle or a waist cincher, which I also bought.

Continued good wishes!

Posted 1/27/2009 3:28 AM (GMT 0)
Thanks Connie, I certainly will. Every little bit helps.

Harvey is still very confused and is still seeing things. We finally moved to the transplant floor of the hospital. His room is very small. He doesn't want me to leave him alone. So here I sit beside him tapping away on the PC. He is sleeping for the moment, but he only sleeps for a few minutes at a time. He wakes in a panic. After a few minutes of comforting, he'll go back to sleep. It's going to be a very long night. I've been up since 4am.

I keep ya'll posted.

Penny
Posted 1/27/2009 2:51 PM (GMT 0)

Penny, you are such an inspiration to everyone.  Thank you for the updates on Harvey.    I can't even imagine how exhausted you must be and you still are thinking of others and posting........Remember ........you.  Take care of you also.

Thoughts and prayers to both of you........ 

Posted 1/27/2009 9:17 PM (GMT 0)

Penny, do you know if Harvey is receiving morphine?  That is one drug that I know some people hallucinate on.  I still have the feeling that his hallucinations are connected to a medication.

As PG said, you must be flat-out exhausted.  Try to catch a few winks yourself, whenever possible.

Posted 1/27/2009 10:49 PM (GMT 0)
Harvey is taking very little pain medication. Frankly, he is afraid too. But no, they are not giving him morphine.

He is still very confused today. One surgeon suggested it was sundowners and expected it to clear as soon as he was out of the ICU. That didn't happen. I spoke with the surgeons and the hepatologist this morning regarding the night we had last night. They now believe that ProGraf is the source of the problems. They started him out on a very high dose 12mg (6 pills in the AM and 6 more in the PM). They decided to cut it back to 2 pills, twice a day. They said that ProGraf can cause anxiety. He simply cannot relax. He is constanly twitching and moving.

He really hasn't slept since the surgery. They wanted to dose him up with Xanax this evening, but I refused. We agreed to start slowly with a simple dose of harmless Benadryl. If that doesn't work tonight, they'll try Ambient tomorrow night. If that doesn't help, then we will discuss Xanax.

I feel pretty good for being up more than 36 hours. Hopefully, we'll get some rest tonight. He is still very frightened and confused, but he is starting to realize that what he is seeing is not real. That's a start.

I'll keep you posted.

Penny
Posted 1/27/2009 11:29 PM (GMT 0)
Penny

I know what its like to be 36 hrs with no sleep.  Its strange how you don't feel as bad as you think you would.  Strangely enough I started feeling worse once I got some sleep.  At least you have the satisfaction of knowing that in spite of the sleepless nights you have a light at the end of the tunnel.  I'm trying to absorb everything you say.  Please tell me why you don't want your husband to have Xanax.  I don't have any medical background so I'm just curious.  It sounds like you do have some medical background.  Thank you so much for taking the time to share with us on the forum.  Your knowledge will be helpful to each and every one of us at some point.  I just hope I can remember it all.

Thanks Again

JoAnn

Posted 1/28/2009 1:56 AM (GMT 0)
Penny, I'll be praying that Harvey and you get a goodnight's sleep and that the hallucinations stop.
Posted 1/28/2009 2:48 AM (GMT 0)
Hi Everyone,

Well, it looks like Harvey is finally turning the corner. The docs actually cut his ProGraf back by 2 pills not down to 2 pills twice a day. I got that confused. He will be taking 5 pills in the morning and 5 pills in the evening (versus 6 each time). This seems to have had a positive effect. He now realizes that he is imagining things and is quick to point that out. He is making much more sense now and he seems more relaxed.

JoAnn, prior to Harvey's surgery, our primary care doctor exhausted sleep medications trying to relieve Harvey of his insomnia. Harvey never had insomnia. He would sleep, but his disease had him so fatigued that he never felt refreshed. The doctor ultimately prescribed him Xanax. It would knock him out, but he was loopy for upwards of 3 days. His liver was unable to process the drug. The doctors reminded me that he has a new liver and should be able to tolerate the Xanax. I say we start small and work our way up if need be.

He received his dose of Benedryl about 15 minutes ago. He is sleeping, but is notice that he is still twitching all over. Hopefully, he will settle down. I'm going to try to get some sleep as well. I'll let you know how things go.

God bless you all.

Penny
Posted 1/28/2009 3:05 AM (GMT 0)

Thank you Penny  I totally understand.  Jerry has never taken sleep aids.  He is exhausted all the time also for a lot of reasons as I'm sure you know.   Thanks again for the info.  I hope you are getting some sleep.  I feel for you having to sleep in a chair.  My body still hurts from sleeping in a chair most of last year.  When he gets his transplant Vanderbilt has portable beds.  That is like being in the penthouse compared to those chairs.  I pray for you to have more strenght every day.

JoAnn

Posted 1/28/2009 4:37 AM (GMT 0)
Penny......how exhausted you must be!! I am so glad Harvey is starting to turn the corner. I have heard that post transplant the really high doses of steroid medication can also cause problems and was wondering if that might be contributing to it. This last summer my hubby (he is still pre-transplant) had a pretty nasty reaction to some steroid medication he was on and they had to completely take him off of it. They mentioned that post transplant they will have to find another medication to give him and also treat him with anti psychotic type medication as well......just thought I would mention, but sounds like you have a handle on it. You take care of you and get some rest. You will be no good to Harvey if you are completely exhausted. I am soooo happy for you guys, and will pray that he continues to do well!!

Hang in there!

Mer
Posted 1/28/2009 11:53 AM (GMT 0)
Well, I guess I spoke too soon. Harvey had another rough night. He's been up all night. They gave him CellCept at 8pm then the Benedryl at around 10:30pm. He fell asleep and so did I. I woke around 2am to find him sitting on the side of the hospital bed about to make an escape attempt. I learned that he kept the nurses pretty busy during the few hours I was sleeping. He's been tugging at his central line. The nurse put big mittens on him and he is very angry about this. He managed to get them off. I assured him that as long as I am awake, he won't have to have them on.

He had a PIC line placed at 8:30pm last night. They couldn't remove the central line until an x-ray as done to verify the PIC placement. Of course, they came to do the x-ray 5 minutes after we fell asleep. I had to leave the room. I fell right back to sleep though. At 4am, they removed the central line and held pressure to his neck to stop the bleeding. We have to check the bandage and site often to ensure there is no bleeding or swelling. Now he won't leave the dressing alone! I have to watch him like a hawk.

I am so puzzled by his behavior. It's just like a bad case of encephalopathy. Heck I'm ready to break out the Lactulose! The nurse just drew about 8 vials of blood for testing. They are doing an ammonia screen along with everything else. I'll be interested in knowing what his levels are.

This is like being stuck in a nightmare. I am so grateful that he received his transplant, but it's as if nothing has changed. I'm begining to wonder if it will ever get better. I've gotta get a grip. I'm going to find some coffee. I'll keep you posted.

Penny
Posted 1/28/2009 3:03 PM (GMT 0)
Penny

This is what I was talking about  Once you get a little sleep you need a LOT more.  Just hang in there I will see if LaBunna will get on and give you some insight.  I don't know if her husband has the same problems?  What do the Dr. think the problem is?

JoAnn

Posted 1/28/2009 5:43 PM (GMT 0)

Penny,

You sound so tired and so strong, thank you for sharing all of this with us yeah .  My husband is on the transplant list in San Francisco and I am praying this will be his year!  I know I will never be able to stay awake for 36 hours Geez.  We don't hear from many people that are actually going through this and the information is so helpful, God bless you and your hubby,

Judith

Posted 1/28/2009 7:11 PM (GMT 0)
Everyone,

Just wanted to give you an update before I take a nap. My Brother-In-Law is sitting with the hospital with Harvey. I've managed 4 or 5 hours of sleep in the last 58 hours. Judith, never say never. You do what you gotta do. :)

I'll no longer wait for Physical Therapy to get Harvey up and moving. He has got to get out of the bed in order to get well. I got him in the chair this morning and gave him a shampoo and haircut. He sure needed it. We had breakfast as well. His mental state was better while he was sitting up. Then the doctors came in and Harvey commented about the little boy outside his window. At least they got to witness his hallucinations.

The doctors said that all of his liver test, inlcuding the ammonia screen are in normal range. They insist he simply needs time to adjust to the meds. He is on masive quantiities of prednisone which are being tapered off every day (they gave him 1 GRAM of predisone in the OR and 950mg the day after). He is also taking ProGraf, CellCept and one other anti-rejection medicine. I left the book at the hospital but it begins with a 'V'. I meet with the pharmacist on Friday and will be happy to share what they are and the doses he is required to take. It's not easy to find this kind of info on the Internet and I'm certain you are as curious as I am. I'm happy to share this experience with you.

I'm going to take a nap. I'll get back with you later tonight.

:) Penny
Posted 1/28/2009 10:45 PM (GMT 0)

Penny, Prednisone can cause hallucinations, also.  I had a psychotic reaction from it in which I saw people coming through the walls, had auditory hallucinations and it felt like there were bugs biting me under the skin.  This went on for 3 days, and all I had taken was 2 caps (not sure of dosage...this was 40 yrs. ago.)  I also couldn't sleep.  The afternoon of the 3rd day, I went to the ER and they put me on Thorazine for a week.  It was like bringing me down from a bad drug trip.  I have had adverse reactions to other steroids, too, so I just put down that I am allergic to steroids.  Prednisone was the worst, though.  Since they are tapering Harvey off of it, if that is the cause of his hallucinations, hopefully they will go away in time.

As for a sleeping aid, you might ask the doctor about trying melatonin.  It is a natural hormone in the body that helps control sleep.  It is an over-the-counter product, found in the vitamin section.  It comes in 1, 3, and 5 mg strengths.  My PMD suggested it to me and I am taking 3 mg at night.  It's been pretty effective, although I do sometimes have to add a 10 mg Flexeryl to it.  There are no "hangovers" from melatonin at all...no side effects.

Also, when a person is sleepless for a long period of time, they can hallucinate.  So that may also be playing into Harvey's hallucinations.

I'm glad you are getting some sleep.  Get as much as you can, as you will have a lot to deal with once Harvey comes home.

Posted 1/29/2009 1:45 AM (GMT 0)
Well, I got a few hours of rest and I feel much better.

I got a report from my Brother-In-Law regarding Harvey's afternoon. They've been weighing him in his hospital bed and he has been hovering around 143 lbs. However, he looks much skinnier to me. I've been concerned about the diuretics again thinking he's getting to dried out. The physical therapist got him to walk from his room to just past the nursing station today (about 50 ft). They then brought a scale into his room. I almost passed out when I heard how much he actually weighs . . . 118.9 lbs! He is 6 foot tall and this is the lowest body weight he's ever been. The low body weight will also contribute to the altered mental state. He was 144 lbs when he went into surgery 1 week ago! He's dropped 25 lbs! I cannot believe I've missed this, but it's been a whirlwind of events this week.

They are so determined to wean him off the feeding tube that they've lost sight of his physical condition. They have him on continuous tube feedings at night (this only amounts to 2 cans over the course of 8 hours) and he is eating off his tray during the day (he just picks at his meals). I am going to insist we go back to tube feeding him 6 cans (3500 calories) a day until his body weight becomes stable enough to wean him.

My plan of action is to also start working his legs and arms in the bed. I need to stimulate his muscles and get him on the path of recovery. Having physical therapy come by for 30 minutes a day is just not going to cut it. Bottom line, if he is going to get better he must have Nutrition, Exercise, and Rest.

As for rest, they are going to give him 5mg of Ambient tonight. The doctor will allow up to 10mg in the event that 5mg doesn't work. I'm keeping my fingers crossed. I just don't want to put him on any narcotics. He is having enough issues with the immunesurpressants. Connie - I don't think he can have melatonin with the ProGraf. I believe it was on the list of meds/suppliments that causes adverse interactions. I'll double check it though.

I'm gonna grab a quick shower and head to the hospital. I'll let you know how things are progressing. Now that I've gotten some rest I'm going to put my spiked collar back on and go into battle mode. The pitt bull is back!

Thanks everyone and God bless.

Penny
Posted 1/29/2009 3:09 AM (GMT 0)

Penny, you could be absolutely right about the mental alternation being from dehydration and lack of nutrition.  A weight that significant needs to be addressed.  They should probably cut down his diuretic dosage and, as you said, resume more feedings until he puts on some weight.  He's not going to heal well, either, if he is undernourished.

I don't know much about ProGraf, but of course you should check everything out with his doctor before he tries ANYTHING.  By the way, it's spelled Ambien.  wink

You go, gal!  He needs you to be his advocate!

Posted 1/29/2009 5:07 AM (GMT 0)
Harvey fell asleep about 1 1/2 hours ago on his own.  However, he is not resting.  His limbs are jumping and twitching.  I just had the nurse give him 5mg of Ambien (Thanks Connie) in his feeding tube.  I'm hoping it will relax his body enough that he can rest.

shocked  Keeping a watchful eye . . .

Penny

Posted 1/29/2009 6:24 AM (GMT 0)
Well, the Ambien seems to be working.  He still has an occassional twitch, but he has settled down a lot.  Makes me want to snuggle up against him and get some more sleep myself.  I'll have to settle for the dreaded chair. smhair

The nurse said she cannot give him any sleep aides after 2am, so I asked her to go ahead and give him the other 5mg.  Perhaps he can get a restful nights sleep.

smurf

Posted 1/29/2009 8:15 AM (GMT 0)
Penny,
I am very happy for you and your family. It is nice to hear good news.
I will keep praying for you both.
Shiva
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