Rejection Blues! (May 29, 2008 to July 13, 2008)
To provide a little perspective, in 1984, my fiancee Trine was transplanted and was released from the hospital in Pittsburgh three months later. I was transplanted in May of 2008 and was released in three days. That was not a record, but close to it. Also, I was released with the least amount of medication that the nurse had ever seen. I thought that maybe I would pull through this liver transplant as easily as the doctors had predicted. Wrong.
My first night at home was incredibly rough. It was near impossible to find a comfortable position to sit or lay in. The closest I got to acceptable comfort was reclining back on our sofa. Because the muscles in my abdomen were shredded due to the surgery, my back had to pick up a lot of slack. Because of that, the pain in my back was pretty intense during those first few weeks following my transplant. The first night home, I slept four hours, had horrible nightmares, awoke frequently covered in sweat and kept Trine up a good portion of the night with my moans of pain and discomfort. Admittedly, I do not deal with pain very well and can be, for lack of a better word, whiny.
Upon taking my temperature, I confirmed that I had a fever. I was prescribed an antibiotic and told to contact my transplant coordinator if things did not improve. The next night was better, but that was not saying much. Just a day and a half later, on Thursday, I was rushed to the ER with a temperature of 104 degrees. Jackson Hospital is a fine facility and their transplant program is amazing; however, if you have ever had to go to their ER….I am sorry. It is awful. There I was, on a gurney, in a three feet (maybe) wide space, breathing 104 degree air back onto my face because I still had to wear a protective mask at that point. Finally, they drew blood, had me piss into a cup and rushed me off to get an ultrasound.
I was rushed to my ultrasound by one of the most obnoxious nurses I have encountered yet. First off, she bossed Trine around. Secondly, she tapped my stomach and incision fairly hard before even asking what I was in the hospital for. Lastly, she preached at me. It is no secret that I am not keen on having people talk religion at me, but if ever there was a worse time. She told me that some guy was hosting a healing retreat somewhere in central Florida and "there was a whole lot of healing going on" and I should go. My first thought was that if having money in my wallet was considered an illness, I am sure he would heal me very quickly. Then I thought about how my transplant surgeons would feel about me opting for some quack healing ceremony versus life saving surgery. I am not trying to shit on anyone’s beliefs, but I could not think of a more inappropriate time to be pushing her views on me. Plus, the hospital had not even let me take my anti-rejection meds and I was due over an hour ago. Needless to say, I was in a foul mood.
Later that night, things began to improve. The fever broke and I was given a bolus of steroids that made me feel a lot better. However, it was also made everything I ate or drank that night taste like metal. Nasty. I was treated for a mild case of rejection. When Dr. Tzakis came in, he spoke of the possibility of another surgery if it turned out o be my bile ducts that were the issue. Thankfully, no such surgery was necessary. I was released on Saturday after daily doses of anti rejection medication. Certainly this would be the last hurdle on my road to recovery, or perhaps my last hurdle on my track to recovery. Best not to mix metaphors, even when they suck. You get the idea, though.
Saturday night, I noticed a lighter reddish-orange stain on my shirt. My incision was leaking a little bit. I did not think much of it and changed my shirt. The leaking worsened. I piled gauze and/or small towels over my incision to absorb the fluid, but it was of little help. Thankfully the fluid remained reddish-orange, not green, which would indicate an infection. I called my transplant coordinator and she advised me to go to the transplant floor and see the doctor. By the time I got over there, the leaking was so bad that it was soaking through my shirts in minutes. The doctor (with Trine’s assistance) applied an external ostomy bag to catch the drainage.
I had labs Monday morning and was feeling pretty good. I was sore, but began packing up my clothes for our big move to our new apartment which was set for the next week. I got a call mid afternoon from my transplant coordinator. As good as I felt, my labs showed a different picture and I was advised to check into the Transplant floor ASAP where a bed would be waiting. This is when things got bad.
When I was readmitted, I had a liver biopsy. While they were waiting for the results, I turned bright yellow. My bili went from 5 to 19 in one day due to my second bout of organ rejection. They eventually got me on thymoglobulin, an anti-rejection medication normally used for kidney patients but recently approved for trial on liver patients. This was a day and a half later. I began being treated for severe, no longer mild, rejection. I was given many doses of anti-rejection medication. I was pre-medicated with tylenol and benadryl to counteract the rough side effects of the anti-rejection medication, namely Thymoglobulin.
I was hospitalized a total of two weeks and during that time received many doses of pain medication, including one called Dilaudid. One thing you should know about Dilaudid: it is awesome. Another thing you should know is that it has some ugly side effects. During one hospitalization prior to my transplant, immediately upon receiving Dilaudid, I threw up. This would happen a number of times in the future. One time, as soon as I was dosed, I began itching uncontrollably. Another time, I ended up in the ICU, but to be fair it was mostly due to internal bleeding from the doctors accidentally nicking something during a procedure that day. Yet another fun side effect of Dilaudid is that your intestines back up due to your system slowing down from the medication. What particularly sucked about that is that not only was I denied medication, but I was also made NPO, which means no food or drink. Fuckin’A!! I received a lesson in Pain Medication 101 from a doctor one night during my hospitalization. They were trying to wean me off of pain meds, specifically of the IV variety, so naturally I was in a lot of pain. I did not like this, but did my best to understand. She told me that sometimes the body gets so dependent on the pain medication that it creates pain and the best thing to do is tough it out, or at least try a medication of lesser impact. Now, I will not go so far as to my call myself addicted to pain medication, but I will admit there have been moments where I have requested pain meds when I probably could have gone without them. The problem with Dilaudid as that while the calm washes over you and any pain (and lucidity) you have seems to slip away, it does not last very long. In the meantime, it has harmful effects on your body, as described above. It is best not to use over an extended period of time.
I wish I could remember every procedure that I had done over the two weeks. I got three liver biopsies and almost daily ultrasounds to monitor the blood flow in my liver and status of my rejection. I also had a few special procedures, such as chest x-rays and MRIs. The most upsetting occurrence would be when I was given pain meds, started to fall asleep and then would be yanked awake to go to a procedure. Being relaxed in a hospital is relatively rare thing and I tried to take advantage of those moments so it was especially upsetting to have those little moments of peace taken away.
Aside from pain medication and various procedures, another major part of my recovery was (and is) exercise. I began walking laps around the floor, mostly with the help of Trine or my mother. I was not always a wiling participant. I still had the staples in my incision and I tended to list forward, which caused more undue stress on my back. I had to remember to walk with with my head and back straight. By the end of my stay, I was making the rounds alone and with much better speed. I was a walkin' machine.
A little over a week into my stay, I got hold of my mother’s laptop computer. This was a turning point for me mentally. I finally was able to reach out to my friends and let them know I was doing Ok, as well as receive communications. I was able to check my email, listen to new music as well as watch DVDs. Law and Order: SVU kept me sane for those weeks inpatient. It was also during this stay that I received many cards from friends, which also helped to make my recovery more enjoyable. Thank you again to everyone who sent me cards during these months of recovery. They have meant so much. Do not take lack of thank you cards (my hands were, and still are, a bit swollen) as a lack of appreciation.
Now as if going through life-threatening organ rejection is not bad enough, I also had a bad roommate experience. The guy was nice enough (a kidney transplant patient) but he was on the phone all the time. No exaggeration. From dawn to dusk. I could hear his phone conversations more clearly than someone sitting on my side of the room talking to me. He was loud and his voice projected. He was a preacher and apparently called each member of his congregation as well has held prayer meetings via phone. Plus, on his TV, he tuned into all those preaching shows with guys yelling to audiences about the fiery consequences of pre-marital sex and listening to the hip hop. Not to mention, “Wearing Satan’s underpants.” I swear to you, that is an actual quote. I am not sure what he was talking about, but that got my attention.
Anyhow, I was happy when he left and Pedro, another kidney recipient, became my roommate. He was a really nice guy, around my age, and we talked and got to know each other over the few days leading to my discharge on Friday, June 13. I left the hospital weighing 140 lbs, 45 lbs lighter than a year ago at the time I became ill. I was optimistic, looking forward to recovery, thinking that this would surely be my last hospital stay. Wrong again.
