NEW LIVER

Amy, it seems they have handled the situation well. That was a hematoma he had...same as the one in my rt. shin area...and now another one just below the primary one, that opened on its own and has just become infected. The first one was opened up by the transplant surgeon and as much of the clot as possible extracted. Because of John's hematoma being at the jugular site, it's very important that it be treated immediately and aggressively...which it seems it has been.

I know of nobody who has had a transplant w/o some glitch or other following it. This is just a bump in the bumpy road of post-transplant. Just breathe deeply and get enough sleep and eat decently. As Carol said, he will need your strength in the coming days.

Hugs,
Connie

Amy, that is very good news! Here's hoping he continues to improve, with no further setbacks.

Hugs,
Connie

Great news Amy . . we hope for continued good labs and speedy recovery!!

Debbie

Oh...how wonderful. Good for you guys. So glad things seem to be going okay. Good deal.
Angie1953

Amy,

Praying for you all the time. Hang in there, just remember to take a cleansing breath from time to time.

Marie

Is that the gall duct drain that's still in? I know I had to have 3 ultrasounds that were clear of clots, etc., before it could come out.

I'm surprised they're not making him walk the halls. They had me up and walking the day after transplant.

Sorry about the infection. I'm going through the same thing (2 leg ulcers) and think they need to change the antibiotic or give me IV antibiotic, as it doesn't look like the Levaquin is helping much.

As Carol said, be sure to get as much rest as you can, as he will be needing your help when he gets home.

Hugs,
Connie

They want him up but he also has to take it slow due to the incision in his groin because of the hematoma. 

The drain that he has left is in the thigh, from that groin incision.  It does appear that his arms are a little stronger than he thought, he is able to pull himself up at the walker.  His legs on the other hand seem to be very week.  Prior to getting the call, he had really gotten much weaker.  He was having trouble going up the steps in our house.  I can say that when we go home we are going to have a huge challenge with the steps.      I know we are not going there for a while so hopefully we have some time to practice.....

I am trying to get as much rest as I can.  He already has me doing a lot for him since it takes the nurses and aids to long to get to the room.  

His fever has been gone all day, hopefully it will continue to be this way.  Doctors are pleased with that.  They still have the regular IV in, hopefully that will go back to a PICC line in the next couple days.  All depends on the blood cultures and his fever not returning. 

I am hoping that some of his appetite starts to come back a little, he does not want to eat much of anything.  Also, he is getting upset that the fluid is not coming off as fast as he thinks it should.  The doctors have side it will and that if he is up and moving it will help.  Unfortunately with the extra fluid his legs hurt more and make it harder to move.  I try to keep pushing him but he just gets mad!!!  He also knows that I am going to continue to bug him until he is up and moving and eating.

I will update tomorrow or sunday( after the girls visit)!!!

Amy

I think the post op period is greatly defined by how sick they were before the surgery.

Connie never had decompensated liver, no HE. Though she has Hep C, her real problem was a recurrence of the liver cancer. So they got that out of there after a chemoembalization to reduce the tumor to keep her eligible until a donor liver was found. Though Connie has had problems with fluid retention after surgery and with these hematoma in her leg, and drainage from the incision site that eventually needed to be repaired....her LIVER has done well. She was up and about shortly after surgery.

Phil was pretty darn sick before the surgery and will need some time to recover his strength. Hopefully his liver numbers keep looking good! That is the real battle. There is always time to rehab.

Mike was moved to the transplant floor after 6 days in ICU. During the ICU time he ate almost nothing, some juices and then about day 5 jello type stuff...before that he wasn't interested and they didn't offer anything but IV fluids and fluid by mouth.

On the transplant floor he was offered a "regular" diet. This always seems crazy to me to go from jello and bullion to meatloaf and gravy. We ordered him a turkey sandwich for lunch and dinner (the only compromise offered) and he ate about a half of one each meal. He ate the hot cereal at b'fast. When we got home, he was sort of on the same diet as before the transplant...easy, soft, flavorless...more Ensure, more Carnation B'fast. He gradually got stronger and back to eating the "healthy diet" they recommend. He lost weight during the hospital stay, then gathered some fluid weight, and then lost that, gained on the prednasone (got a bit of the moon face), then lost again after the pred was tapered, and now he is back to his "normal" weight a year later.

They got Mike up day 2 in ICU but he was so dizzy and weak, they put him back in bed and never did anything more than transfer him to a chair for a bit each day with lots of help while they changed his bedding. 

Since Phil still has edema in his legs, are there ways to exercise the legs in bed? Has PT been by to see him? Can they use those balloon things that puff up with air and keep the patient from getting blood clots? Mike liked those. Many do not.

Mike was only in the hospital 3 days on the transplant floor and then we moved to the hotel where I was staying for several more days. In the regular room, we walked 3 or 4 times a day, first to the toilet...big deal...and then out into the hall...lugging the iv poles. His edema was more resolved than Phil's, so we went a few doors down and back. By the last day, he was able to get to the nurse's station.

He was way more tired at the hotel than in the hospital...because I think of the treck out of the hospital, car, hotel, walk to room. Maybe I should have gotten a wheel chair, but didn't think of that. He slept and slept. He has labs every 2 or 3 days, so we stayed in Miami a while, then came home and it worked out okay...though I had to get him to the toilet half way home (125 miles)...so out of the car, into McDonalds...way long walk...

The first weeks are a blur, like before transplant busy. But gradually, a bit at a time, it got better. The one thing that was HUGE is that the HE was GONE. So he didn't fight every step of the way to his recovery!

Good luck..tell him we are all cheering for him!

Hugs,

Carol

I was under anesthesia for 36 hours, because they opened me up a second time. Then, for 3 days in ICU, couldn't get out of bed, due to too many tubes. After a day in ICU, they gave me my meds, in applesauce. Even with the nasty meds, the sauce was the best thing I'd ever tasted. It was another couple days of tiny amounts of applesauce. Then they had me in the transplant unit, where the menu was "surgically soft." What a lie, as everything was so overcooked and dry that it was hard to get down. I mainly ate bananas and chicken broth (very salty). My appetite in the hospital and once I was out was almost nil. There was no taste to food and if I seasoned it a lot, couldn't stomach it. Ice cream and fresh fruit were my main foods. It took 3 months before my taste returned. I went from 150 pounds before surgery, down to 128. Once I could taste food, I gained almost all the weight back after another 2 months. It was fun, being able to gorge for a while. My docs and dietitian said to eat whatever it took to gain back the weight. Now, I am right at 148 and have to be careful about being a pig, as I'm hungry all the time. One thing that helped was walking, and lifting 2-5 pound weights to regain my muscles that had wasted away. They'll never be back to normal, but now I'm back to work and am able to lift weights up to 50 pounds, when needed. It takes a lot of time to recover.

Connie, when they took out the line in the femoral artery, it bled into his thigh. His thigh was huge and very black and blue. At first they were not sure if it was just a hematoma or if it was vascular in nature. After the vascular surgeons were in and an ultrasound done of the hematoma. This all happened on thursday 7/19. After seeing the hematoma the transplant surgeon decided that he needed to go back to surgery. But everything since has been pretty good!

John has made a few comments that food just does not sound good! Seems like everyone has had a problem with food and appetite after transplant. Oh and he is no longer on the prednisone. They had him on that for a few days but not any longer.

I will update once we have more changes. Thanks for the input from everyone!

I haven't heard of one off Pred that early, either. I think that's great, though! I had begged them not to put me on it due to a psychotic reaction decades earlier (heavy hallucinations, both visual and aural.) Very scary. And they gave me something else for a few days, but then put me on Pred and kept me on it for 4 mos., weaning down slowly until then. I only hallucinated one or two times early on, but I know that the bone problems I'm having are due to Pred.

I'm having hematomas in my calf that open up and get infected since mid-March when I had to be opened up again. They always ask if I've bumped into something or injured myself, but no...and they did vascular studies the first time to see if my problem was stemming from that...but no, again. It's a mystery.

But even though I was compensated going into it with few problems except edema, I have certainly made up for it in the 9 mos. since then.

Hugs,
Connie

David, he had it for about a week also, then off.... On his initial med list it was there but there was a line thru it and he does not take any, I have been checking his meds every time he gets them. He is on cellcept and prograf for rejection.