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Posted 7/25/2013 4:47 AM (GMT 0)
Hello All,

Hubby is still in ICU with the tube in his mouth. He's not passing his breathing trials so the tube has remained. They are thinking of putting a trach in tomorrow, as they feel the tube has caused some sort of infection, and now he's on an antibiotic cocktail, lol.

They are also concerned with his intestines, just wondering if they are still asleep (Friday) they were not wanting to feed him. Well, they started feeding him yesterday (Tuesday) and what do you know he had the biggest BM (Wednesday) I told the doctors Tuesday how can his body heal if he isn't being fed? So they had a big surprise today, and they were pretty happy as that is a sign that his intestines are waking up.

He is still on dialysis, but his kidney function is picking up.

His liver function is doing good. No blockage and his liver enzymes are trending down nicely! His bilirubin is 3.0 from 30 prior to transplant.

His vitals and bp has been stable.

His blood was 10.3 but within a week it dropped to 7.5, as of yesterday, but today is back up to 8.0. I am concerned as to why his hemoglobin level keeps dropping. They have checked and he isn't bleeding out anywhere, so they are assuming body is still trying to level off and get in sync with each other. But they are well aware and keeping any eye on it.

My concerns for you guys:
1. He's been in ICU since TP, July 13, how long did you/loved ones stay in ICU?
2. Did y'all experience any problems breathing with the tube in your mouth, as far as passing the breathing trial?
3. Were you put on dialysis. How long?
4. Any intestinal problems?
5. If you had a trach, what did you experience from that?
6. They think he's experiencing some "ICU psychosis". Any thoughts/experiences with that?
7. I think he's experiencing some depression. I think he was expecting to run a marathon right after surgery, but is a little disappointed now.
8. What do I expect after ICU?

I am open for all advice. I know I can't look at the situation, but just concerned about all the little things popping up. The doctors can't put their hands on it either, as all of his blood test are good, liver function is good, so they are puzzled. I believe now that his intestines are in the right place it has to learn to function in the right place, since the doctor 20 yrs ago put them in the wrong place. Not sure, but just puzzled shakehead

Tasha
Posted 7/25/2013 1:23 PM (GMT 0)
Tasha,
I cannot give you any info from a transplant side,but some info I can give you regards trache vs vent.

My husband Frank(deceased) was in ICU for 7 weeks,he had what is called ARDS,.
Within a week of him being on the Vent,I talked to the Drs about putting a Trach in instead,keeping a person on the ventilator for a prolonged time can effect their ability to talk after it is removed,best choice I ever made. Sometimes for reasons unknown,its harder for some people to come off the vent,and in time they do,but until then,the trach is much more comfortable for them and you !

IUC psychosis is very very common,especially with an extended stay in ICU,its crazy,scary and weird,they can put him on a med to help with it.
Frank saw all kinds of things that no one else saw,some of it was actually amusing,I went in one time and he wrote on his tablet asking why all the Drs and nurses were dressed in kilts and stuff,then told me it was because all the Drs and nurses were getting married ! lol
So actually most of what you are seeing is normal for the ICU.

My husband also had repeated blood transfusions,he wasn't bleeding out anyplace,they told me it was because his body was trying to heal and that was one way of doing it ?

I hope some of this helps,like i said,I cant answer about the TP part,only my experience with ICU and stuff.
Keep your chin up,thinking of you often,
Robin
Posted 7/25/2013 6:10 PM (GMT 0)
Hi, Dabess. Thanks for the update on your hubby. I'm sorry that he is having breathing problems. It's good that he had a good BM, though. I always get super constipated while in the hospital on heavy narcotics and always have to convince them to give me magnesium citrate. I've since gotten in the habit of taking it with me, as they usually have to order it and will try other things first, which don't work.

As to your questions:

1. I was ready to leave ICU in 2 days, but there were no rooms available on the transplant floor. So I spent a total of 4 days in ICU and 4 days on the transplant floor before being discharged.

2. I came off the breathing tube in Recovery, while still unconscious. I don't remember any "trial." I did have low O2 sats and ws on breathing treatments the entire time I was there (just using the incentive spirometer) and for weeks post discharge. I only had 2 units of blood post-transplant. Don't know how much during surgery. My surgery took 7+ hours, as they had to rebuild my hepatic artery which was "shot."

3. No kidney problems...no dialysis. I was on a diuretic both pre and post transplant. I was using the bedside commode the day after TP and walking to the bathroom and in the halls the 2nd day after transplant (I had thought it was the same day as TP or the day after, but later realized it was a little later. They took the catheter out the day after TP, I believe.

4. No intestinal problems except the aforementioned constipation. It's true that the intestinal system has to "wake up," as well as the entire body needs to adjust to this onslaught on the system.

5. No trach...ever.

6. I didn't have ICU psychosis. However, the constant alarms going off if I moved a fraction nearly drove me nuts. Also, they were doing finger sticks every hour as I developed steroid induced diabetes (from the Prednisone.) I did have some hallucinations from the Prednisone when I was on the TP floor, but they were fleeting and only over 2 days. Also, I couldn't sleep on the Prednisone and after 5 days, asked for something...they gave me a tranquilizer, I think.

7. I was a little depressed at the time I was being discharged, as they were throwing so many instructions at me at once and quickly, and the final straw was putting together the finger-stick apparatus. My sister ended up doing that, right up until they discontinued it. My blood sugar normalized by the time I was discharged, but they still had me doing finger sticks for a week post discharge and charting the results.

8. Once he is discharged from ICU, he will likely go to a transplant floor for awhile, to be monitored and given instructions for when he goes home. You will be given a month's worth of medications and their usage/dosage will be explained. If you guys live out of town, you will be required to stay near the hospital for a month post discharge. I live 12 min from Mayo by car...a good thing, as I was there every day the week following TP and 3-4 days a week for many weeks afterwards.

While I did really well after transplant, I did develop an infection in my midriff from an incision that opened up. It became infected and they had to open me up again 6 months post-transplant. That time, I regained consciousness in Recovery when the breathing tube was still in. It was awful! Felt like I was drowning. As soon as I could get my thumbs to work, I was signaling for it to be taken out. After that surgery, I developed some bad problems, mainly extreme edema in my lower extremities, especially around my ankles and feet. I had both water and blood blisters. When the blood blisters broke, I developed a leg ulcer on the rt. calf. That was extremely painful and took 9 mos. to heal. It is still beet red and has a long, deep scar. It required home health intervention 3 x a week for all those months. Some months ago, the midriff wound opened up again and I am still trying to get it to heal so that I can get a skin graft.

Everyone is different and has different types of problems. It is really quite rare for someone to have a TP and not have any problems whatsoever afterwards. I also became very overwhelmed and I decided to see a Mayo psychiatrist. He put me on Lexapro 5 mg, a mild tranquilizer, and it has made a difference. I've only seen him twice, but have an appt. with him tomorrow.

I wish your hubby all the best.

Hugs,
Connie
Posted 7/26/2013 2:39 PM (GMT 0)
1. ICU: Mike's surgery was overnight Friday to Saturday. He was in ICU until the next Friday...so 7 days.

2. Breathing tube was removed on 2nd day. .NG tube removed the next day. He HATED the NG tube.   On the last day they removed all but one IV (just in case they needed to set up for a second surgery (which they threatened every day because he was oozing from somewhere they thought), took out the central line, the arterial line, the catheter.

3. Dialysis: No dialysis but they had watched that before TP, but he didn't need it. He has had chronic kidney problems and sees a nephrologist every 6 months. His creatinine has moved toward normal in the last month...2 years 2 months post TP!

4. Intestinal problems: He has had chronic bleeding in small bowel. He has had to have treatment for bleeding AVMs in the small bowel twice before TP. After TP he has been okay. He has a colonoscopy once a year, though doc says he doesn't need it again now for 5 years unless there is bleeding episode. His blood counts have been awful...low white/red/hemoglobin/hematocrit...which have begun to normalize in the last month...though certainly NOT normal ranges.  His PT count is over 100 this month for the first time in 5 years.

They started him on clear fluids then soft diet on last day in ICU. On floor they switched him to low sodium, diabetes diet as he was insulin dependent--and remained so for 3+ months.   I can't remember exactly. I had to watch this as he was likely to test before a meal, give himself the shot and then wander off and not eat. They can tank at that point.  I had to be diligent because he didn't realize the insulin was to COVER the meal...not to take like an antibiotic everyday for the heck of it!  He thought he had to be on a schedule.  I know others have had this same problem. You really have to watch this.

He had no BM until days after we were home... on a stool softener. The pain meds make you constipated.  If I recall correctly, he lied to the nurse in hospital that he had gone because he was afraid they were going to keep him longer. He wanted OUT at this point.

5. No trach.

6. No "ICU psychosis". He was pretty mellow until they moved him OUT of ICU. Then he wanted me there because he didn't feel SAFE. I stayed from 8 AM until they gave him something to sleep around 11 PM. Long hospital days. He didn't like that there was such a step down in his care. He was VERY emotional for the entire time he was on prednisone...maybe 3 months. But the HE "mean nasties" disappeared on the first day post TP.

8. After ICU? They kept Mike from Friday night until Monday afternoon on a transplant floor. Then he was released. They want them OUT as they are immuno-compromised and there are so many institutional based germs that are not good for these post TP people...MRSA VRSA, etc.

They wanted him at the clinic lab every 2 days for labs, etc. He had a couple of ultrasounds as they didn't like that he was still draining so much gook from his drain. We stayed in the on-campus hotel for a week after release as we live 125 miles from the center. Then he had to come to TP clinic every 2 weeks, but had labs 2ce a week. They had a remote lab 85 miles from our home which we drove up and back twice a week. He was a blob in the car and the drive was hard. They wanted a fasting blood so we left the house at 5:30 AM so he could have labs before his prograf. After some months Mike started driving again.

in about 6 months they allowed him to switch to a local lab. They don't get the results back the same day as the TP lab so they can't be monitoring the prograf as well. That was a deal breaker for him until they were more certain he was stable.

It exhausted both of us.

They cut back on prograf, cellcept, ursodiol doses. Cut out insulin when sugar stabilized. They cut out the valcyte and swish and swallow stuff over time. They changed his antibiotic from Bactrim to Dapsone. They dropped the Dapsone antibiotic at 2 years.

He has had problems regulating the meds, they continue to tweak. He goes every 2-4 months now, they decide each visit.

I think your hubby has had quite a hard time. one of our members, Debbie, reported similar post TP struggles. Hubby had to go miles and miles for ongoing dialysis and needed PT to gather strength. He was not able to walk by the time TP came and he lost so much strength they had to rehab him.

Remind me his MELD score at TP?

My Mike still has Hep C. Are you dealing with that going forward also? I don't have my notes with me.

I am visiting in New York with my sis who is having some short term memory problems...well, serious memory problems...so sad.

Hugs,
MamaLama aka Carol from Florida
Posted 7/26/2013 7:58 PM (GMT 0)
ML's post reminds me of a few other things post-transplant. I have almost non-existent veins, so they couldn't find an IV. They had to keep in the IJ (indwelling jugular) access until an hour before I was discharged. They had to give meds through that and have access in case they needed it during an emergency.

I went from fluid to soft diet in ICU and a diabetic diet on the Transplant Floor. Once home, I continued on a low-sodium diet, which wasn't a problem as I'd been doing very low sodium for several yrs. prior to TP.

Those with hep C (which I still have) experience more post-TP problems than those w/o HCV.

Hugs,
Connie
Posted 7/26/2013 9:37 PM (GMT 0)
Tasha,

I have not had TP yet, but I was hospitalized in January due to a suspected splenic artery aneurism.After they stabilized me thru splenctomy and 10 units of blood, I was transferred via ambulance to my TC hospital. I was in ICU for about 2 1/2 weeks. They took me off of vent, and then, I had to go back on it. I don't remember a lot about ICU, but dreamt I was being held captive. Loved ones have since told me that I constantly tried to get out of bed to go home so they were forced to restrain me. I spent another week and a half on the liver patient floor. I had trouble talking and had to eat thickened liquids because my vocal chords were damaged by vent and I developed disphagyia. I was sent to an inpatient rehab hospital for 9 days of intensive physical, occupational, and speech therapy. This was followed up by physical and speech therapy at home until May. I am finally getting back to where I was before all this happened. I hope my transplant goes smoother. I have been walking 1 1/2 hours a day and using a spirometer at home to try to improve my air intake.

I just turned 52 this week.

Post Edited By Moderator (hep93) : 7/26/2013 5:56:11 PM (GMT-6)

Posted 7/26/2013 10:53 PM (GMT 0)
After the transplant, in ICU, I wasn't sure what was real and what wasn't. Sometimes it was a mix of reality and still being messed up with having been under anesthesia for 36 hours. I also have a problem with choking, as the tube left a little scar tissue in my throat. The choking isn't bad, more a drag when I'm dining out and have to go outside and cough whatever has caught in my throat. It usually is liquid that's the problem. I have always eaten too fast, so a lot of the time, it's my fault.
Posted 7/27/2013 12:00 AM (GMT 0)
Hope you had a good birthday, Susie! Too bad you didn't get a TP for your b.d. But it will come.

David, I think I have some scarring, too, after all the surgeries I've had. I have to eat solids in small pieces and have plenty of water or iced tea to wash it down. I have trouble swallowing all but small pills, too.

Hugs,
Connie
Posted 7/27/2013 12:29 AM (GMT 0)
Jeez I didn't know this was so common. While having a minor surgery 2 yrs ago, they intubated me due to a cough and while doing, found a throat polyp. That was removed but I still always seem to choke a lot on liquids, and have for several years

I guess some folks just have smaller openings. It's very scary though when it happens because when you can't catch your breath, nothing else in the world matters.

I actually choked on whipped cream from a piña colada and like you David, went elsewhere to "catch my breath". Kinda silly to go off by myself though to avoid embarrassment. I also inhaled the powdered sugar on a donut that I was fixing to eat. What a scene that was!

Anyway Richard has/had the enlarged spleen but it didn't seem to adversely affect him, knocking on wood.
Posted 7/27/2013 1:15 AM (GMT 0)
My mom was admitted on a Friday...her transplant was done on a Saturday and she was in ICU for 2 days...she then went to the transplant floor and was sent home on a Friday. A total of 7 days in the hospital. No complications while in the hospital, but once she was released, then the problems began. She had to go to the ER the day after she was released for water retention and swollen legs...a few days later she had diarrhea, then a low grade fever for a few days, then there was an issue with her platelets trending downward, then bad pains in her abdomen which turned out to be diverticulitis, followed by days and days of an extremely bad back ache. Right now we are dealing with extremely low white blood cells as well as feeling very, very weak/exhausted. My mom is 3 months post transplant.

Please continue to keep us posted on your hubby. I hope he is beginning to feel better.

Post Edited By Moderator (hep93) : 7/27/2013 1:45:42 PM (GMT-6)

Posted 7/27/2013 4:45 AM (GMT 0)
Thanks Robin, that is what the doctors told me about the number of blood transfusions. They said this is common, as the body is trying to get in sync with each other and healing.

Hep93, I just told the doctors today about the depression, and him going to a doctor at the first of the year and was prescribed Lexapro. The doctor said he will talk to the liver team because they are all puzzled by the fact that all of his numbers and organs look good, but his disposition is what concerns them. So they plan on shutting all the lights off at night, and opening the blinds and lights on in the day time to get his body on the right track, with his days and nights. I am hoping this helps, but I think they are planning on trying the Lexapro to help with his possible depression.

Carol, his MELD score was "well over 40" in the words of his doctor. So I know he was very sick pre-transplant, and his recovery will be a long slow one. I just hate he thought he can jump right up and run a marathon post-transplant. He is on constant dialysis for now, but they think this is an acute problem that should normalize.

Susie, this sounds about what I think will happen to my hubby. Pre-transplant he was really weak, barely walking if at all. He had numerous BM's on himself cause he couldn't make it to the restroom. They had him on Boost 3x's daily, and brought in a physical therapist to help him walk on a walker, but that was short-lived, as his transplant came 3-4 days later. The trach was placed in today, and he was trying to speak today, but it hurt him to bad, and I had to read his lips. But he was in pain, so maybe tomorrow will be a better day. I hope he doesn't have a lot of long term effects from the vent. He was trying to pull the cords, but was quickly restrained, and has been since transplant ( July 13). He hates it, but it is best so he may recover. I know physical, occupational, and speech therapy will more than likely be needed. And also emotional therapy for his depression, which I think has set in.

David, Mae, and Hep93: I will keep an eye on any coughing spells. He is having them now, but I think it is the pneumonia and antibiotics that is causing that.

I just know and believe God is in control of it all. I know his struggles are not in vain, which I am reminded of the poem "Not in Vain". Each of you affected by liver disease are touching and changing lives daily, therefore, you struggles are not in vain. I know you guys continue to give me the strength I need to make it thru, and I am able to walk with my head up and the confidence to know my hubby will be okay. Though it is a slower recovery than yours, but he will be okay. The doctors are confident that they have seen this is about 80% of their patients, then hearing from you guys gives me more confirmation that all will be okay. Thanks so much for all of your replies, and whether you know it or not I have mad love for each of you, and God put you guys in my life for this reason and season of my life.

Thanks so much, and much love,

Tasha
Posted 7/27/2013 7:52 PM (GMT 0)
Aww, Tasha, thank you for your very touching words.

Just remember that many of us have been in your hubby's shoes.

Hugs,
Connie
Posted 7/27/2013 8:35 PM (GMT 0)
Oh my, Tasha, MELD over 40! It is a miracle he made it to TP.

If you are a spiritual person, you must take great strength from knowing that there must be unfinished business in his life that his higher power has helped him hold on for until his surgical appointment with a new liver.

They told us at the TP center that livers do over 600 jobs in a human body and the new liver has to learn to do all that work in the new body, bit by bit. If his labs are improving, well, then the jobs are starting to get done.

I'm sorry he needed the trach and all that dialysis, but he is holding on...for that living he has left to do. 

I feel good about this and pray for the best for you both.

Hugs,

Carol

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