Hello, everyone! I thought I would try posting a little. However, I am in no means "back."
THE call from Mayo came around 3 AM on Oct. 27th. I had my cell phone turned off by mistake and the land line off the hook. I had just gotten up to turn the cell on when a call came through--actually voice mail--and I noticed they had tried to reach me several times. The message was that they had a possible liver for me and that they needed to hear from me by 7 AM or it would go to someone else. I tried to call back for an hour and couldn't get through to anyone. So at 5 I called a neighbor and woke him up to take me. He realized he didn't have his car with him, so I went ahead and did some last-minute packing and got dressed, then called a cab to take me to Mayo, arriving about
6 AM. It took them about
2 hours to find me a free room on the TP floor. When I got there, they did preliminary blood work, vitals a number of times, had me take a shower with Betadine soap, and said I could have breakfast. My oldest g'daughter, who works as an RN at the other end of the hall in Oncology, was able to visit me pre-op. The transplant was scheduled for 3 PM. I called my primary caregiver and the back-up, so one would be there post-op.
The surgeon ran into difficulties, as she had to cut through the scar tissue where the exact same cut was done when I had the rt. lobe removed in '07. The mesh that had been placed after the last midriff incisional hernia, had stretched out and was not doing it's job. She had to get that out and put in new mesh. Also, my hepatic artery was shot, so she had to build a new one. I understand that all of this took about
7 hours, including the transplant itself. Most people don't remember the first few days after transplant, and I don't remember much about
the first day, and not everything from the 2nd day, but I do remember most things after that.
I woke up in Recovery intubated. People were talking to me. I now understand why people fight that tube. It feels like you are drowning. You can't breath, can't speak, and the feeling is of drowning. They told me to start moving my fingers. It wasn't long before I was motioning with my thumbs to get the tube out of me. My insistence grew stronger and I tried to mouth the word "out." And they did extubate me pretty quickly and put me on nasal cannula oxygen, which I had pretty much the entire hospitalization of 8 days. After I was extubated, a doctor and other staff introduce
themselves to me. The doctor's name was Dr. Cannibal. I whispered, "What an unfortunate name."
Anesthesia and/or Prednisone had me saying inappropriate things pretty much the entire stay. I also turned into Chatty Cathy, talking about
things I generally don't speak of, such as things in the past that I did. I remember saying that my back was "on fire."
Somewhere early on after transplant, the surgeon visited me and I asked if she knew who my liver came from. She couldn't tell me if it was a male or female donor, but did say it was from a young person and that the liver was absolutely pristine. Tears came to my eyes and suddenly it was not just about
me anymore....I needed to protect the new liver for the sake of that young person and the family who had given me that gift. It became very important to do everything the transplant team asked of me.
Both of my caregivers were there once I was in ICU. The primary one had packed a bag and chose to stay at my place while I was in the hospital, as it's closer to Mayo. The 2nd night, she asked if she could use my TV and computer. Of course, I said she could...forgetting that they have "quirks." She managed to break off the cable from the tuner (which was already loose) and essentially broke my TV. She also messed up my computer, but I managed to get that going again.
I was in ICU longer than expected, about
4 days, as they had no available bed on the Transplant Floor. I had 2 IV poles with 4-6 bags each attached. I was hooked up to every monitor conceivable. Buzzers were going off constantly. If I moved my finger a little, one would go off. When each infusion was complete, a buzzer would go off. I had doctors, nurses, PT, OT, etc., coming and going constantly. Like most post-transplant, my glucose level was high and I was getting insulin IV, with finger sticks every hour (they all turned blue.) They then reduced it to sliding scale IV. I received diabetic instruction and was on a diabetic diet. This remained the case until 3 days before discharge, when I did not require insulin. However, I had to continue the glucose monitoring before every meal and snack for over a week post discharge. There are so many meds to take, having to deal with this as well was overwhelming. Thankfully, as my glucose level became normal, I was able to discontinue the monitoring. In ICU, there was constantly something I had to do: Bile duct scan, liver scan, chest x-rays, ordering meals and snacks (diabetic diet) (they don't provide food unless one orders it from food service), walking, receiving various instruction, etc. This remained the case throughout my stay. Once I got to the Transplant Floor, I had one less IV pole, but more was required of me. In the beginning, my primary caregiver was there during the day to receive instruction also, and to get a tissue or something from my bag for me. It was very difficult to get out of bed and took a lot of effort to get back in bed and positioned right. I experienced shortness of breath (SOB) and rapid heart rate (tachycardia) , which is still the case. I began sitting in a recliner for 1-2 hours at a time and received instruction, and had to do, upper body strengthening with long elastic bands. This continued at home post-discharge.
One thing I hadn't seen any post-transplant patients or their caregivers mention on here was the tubing and bag draining the gall duct fluid. The exit site was the lower right abdomen. There were big loops of tubing coming from there, draining into a large bag. The fluid looked exactly like motor oil. They kept this site
open, but changed to short tubing and an ostomy bag just prior to discharge. The entry site was capped, but not closed. This meant less drainage, although it was left uncapped once in the hospital after an ultrasound, and again after I was discharged and was in for another ultrasound. This meant that the fluid was gushing out and the bag had to be emptied every hour until it was removed, recapped, and a new bag placed. I had to have 3 sonograms, to make sure there was no leakage or blockage in the bile ducts, before the tubing and bag were finally removed. So I had it for about
3 weeks or so. A real nuisance.
I cannot stress enough the number of people coming and going constantly in ICU. They had me up walking down the hall the day after TP. It seemed like the same day, but had to have been the next day. I was on a walker and had 2 people in front of me pushing the IV poles and holding the catheter bag. I had a catheter for about
4 days, after which I used a bedside commode and they measured output. After that, I was able to walk to the toilet by myself, pushing one pole, as the other had been discontinued. I had an IJ (central line in jugular) with 5 ports from which to infuse meds and draw blood. The other IVs they had used during surgery were no longer viable. Nobody was able to get an upper extremity IV in me throughout my stay (and my Interventional Radiologist was on vacation.) So the IJ remained my only access right up until an hour before discharge. This thing was extremely uncomfortable, especially the tubes/ports that came out of it, which were right behind my lower rt. neck, where I have longstanding problems from a whiplash. I used a headband to keep them all upright. I could only sleep on my back and this really hurt my head/neck and gave me a constant headache.
I was using an incentive spirometer to expand lungs and get up mucus. Shortly before discharge, I was told that my left lung was collapsed at the base, so I continue with the breathing exercises even now. For whatever reason, I had horrible pain in my left lumber region. At one point, I was told that it was probably a stress fracture from the rib lifter during surgery. However, x-rays prior to discharge showed no fracture. Lumbar and abdominal pain were the worst and unrelenting. I also had bad back spasms. I was given narcotic pain med (can't recall name) while in ICU and was then switched to oral Percocet, which was changed to Oxycodone after a day or so. Of course, constipation was a problem. After 3 or 4 days with no BM, I was given magnesium citrate, which cleaned me out and got me on a normal schedule with stool softener. But that only lasted a few days. Post discharge, after trying stool softener, MiraLax, suppositories, with no results, I had to use mag. citrate again at home. This happened twice.
During my hospitalization, I did not allow my daughter or younger g'daughter to come see me. I looked such a mess (as though I'd been beaten by a gang of thugs) and there were so many tubes, etc., I knew it would freak them out. I also did not feel up to drama. In addition, the fewer people I was in contact with, the better, in terms of germs and contracting an illness from someone else. I have continued that practice at home, with only necessary people being allowed in. One of the worst things that could happen right now is to get pneumonia or an infection. Older g'daughter did visit me twice more, but being a nurse she knows the protocol and kept her distance from me.
As soon as I was able to look down, I noticed that there was an area in the midriff incision that needed an extra staple. At that time, it was slightly
open. As time went on, this became a gaping hole with profuse drainage, which had to be covered with gauze pads. The main incision, which goes from the lower left, up to meet the midriff incision, and down to the lower rt. side, did not appear secure in terms of the staples. They all looked very loose. I was told that they were pushed out due to the swelling.
All the days on the transplant floor were pretty much the same--busy. I would be awakened around 4 or 5 for a blood draw, then vitals would be taken and IV bags renewed. My doctors never did come in early...more like 11 AM or later. I had about
7 doctors, each with their own purpose, checking me out throughout the day. Whenever I had free time, I would walk quite a bit. The high dose of Prednisone I was on had me wired out and walking helped. I had some mild auditory hallucinations one day, along with a brief visual hallucination. After that, no more...just very hyped up. Also, the Pred. made me feel hot and sweating profusely one minute and cold the next. I was constantly adjusting the thermostat. This continued at home for about
a week, until the Pred. dosage was decreased. I never got a nap in the hospital. In fact, I wasn't sleeping much at night, either. I counted up how long I'd slept and by the end of Day 5, I'd had only 11 hours of sleep since the day prior to surgery. I finally told them I could not go on like this and to give me something to sleep. They gave me 1 mg of Ativan, along with my usual Trazodone and Flexeril, and it knocked me out cold. I slept about
6 hours straight and was very "out of it" when I awoke. I knew where I was, but not what day it was or time or how long I'd slept.
Before discharge, my primary caregiver had to leave for NC. She had bought plane tickets 6 mos. in advance and was attending an AA retreat with her sister (also previously paid for.) So my sister in Charleston, SC had to leave her shop (where she is the primary employee with only P/T help when she gets backed up) to come be my caregiver while my original one was away. They had wanted to discharge me 5 days post transplant, but I was not at all comfortable with that...and then my liver enzymes spiked, so they kept me 3 more days. Each day, I had to fast in preparation of liver scans...sometimes as long as 16-18 hours. Then I had to wait for the committee to review the results and decide whether to do a biopsy. But each day the enzymes got lower, so biopsy was never done and I was discharged home on Day 8, with my sister as primary caregiver. And thank God for her!
I cannot tell you strongly enough the importance of having a primary caregiver, a secondary one, and even a 3rd one....because "life happens" and you never know when you will get the call or what may happen during the time post discharge when you really need someone with you 24/8. My primary caregiver was supposed to come back to me for a week once she returned from her trip. However, she called from the airport in NC before she headed back, and told me she was very ill with bronchitis and a bad cold (and I could hear it.) Since I could not be with anyone who is ill, she couldn't come back to me. My sister was able to stay about
5 days more, but absolutely had to return home then. When we met with the TPC, and told her that there was nobody else available to be with me, she announced that I was fine to be by myself. This was only 2 wks. post transplant. My other caregiver, Bill, was still very ill from his bout with pneumonia and a stomach bug, and was in no way able to take care of me. However, he did come over for a short while the day my sister left.
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Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL
Post Edited (hep93) : 12/5/2011 11:32:17 AM (GMT-7)