At the end of October, and just days after a good friend of mine had a full on seizure in my living room, I was back in the hospital for another Cholangiogram. My labs over the past few weeks had shown in increase in my key liver enzymes, which meant possible blockages. They had already done another liver biopsy, ruled out rejection and given me a dose of steroids for good measure. The Cholangiogram went fine, though it did show blockages, which the doctors relieved through ballooning the bile ducts as usual. After each cholangiogram, it is standard to be monitored for an additional two hours. For me, this was usually an uneventful two hours. However, this time, my temperature spiked, tremors came over me, and I began to vomit. I think I remember asking, "what the hell did they do to me?"
I was admitted to the hospital, submitted blood work, and waited for the doctor's conclusion. The next day, a Tuesday, Dr. Tzakis informed me that he was going to surgically fix my bile ducts, since simply ballooning them was not working. This surgery would take place the next day. I was nervous, a little upset about having my nicely healed incision cut open a second time, but all around optimistic that this surgery, which was minor and the doctors could do in their sleep, would put an end to waking up in the middle of the night with fevers, sweats and stomach pains. My state of mind was much improved over my last hospital stay.
It is interesting to hear Trine's viewpoint regarding this last surgery. She was terrified that this surgery would be like my original Kasai procedure when I was a baby in that it would be a temporary fix and a bridge to a second liver transplant. She asked the doctor point blank what my chances were, post op, and he was confident that it would work out just fine.
The surgery went well, and they removed a lot of scar tissue from around my bile ducts, which is said to be the cause of the strictures. Even my aforementioned hepatic artery (see Part 3) had good flow, so the scar tissue may have been responsible for that was well. I was incredibly sore and the pain associated with recovery seemed more intense and vivid than with my transplant. They gave me morphine, which caused me to vomit and did not do much for the pain. So, I was reacquainted with my good friend, dilaudid, but only for a few days until his well meaning, but annoying cousin percocet showed up. Soon, I was all but off pain meds.
Walking is one thing the docs always bugged me about after abdominal surgery. It was imperative that I get out of bed and walk around to heal, prevent sores, and it is good for mental health as well. They also ask a lot about farting. Seriously. They needed to make sure that my bowels were in check so every once in a while a doc would pop in and ask the status of my ass. I had not eaten for almost five days, so I did not exactly have a whole lot of fuel to burn. By the end of the week, I was walking laps around the Transplant floor and farting away. Life was good…until—actually, it's still pretty good.
Life has been nice since the surgery, with a few minor hiccups. My liver enzymes peaked a bit so the docs put me on a higher dose of anti-rejection medication and reinstated the steroid. The anti-rejection meds were causing major stomach irritation for a while, so I had to make some adjustments regarding the acid reducing medication I was on, but otherwise, it's all good.
I am seven months post transplant.
Thursday, January 1, 2009
Transplant Blog Part 3: 30 Days at Jackson
In July, I decided to attend my friend Derek's wedding. He was one of 5 friends who were married this year and his wedding was the only one that I was able to attend. I flew to Connecticut, even though I had just began experiencing stomach pains and did not know what to attribute them to. I fought threw the stomach aches and actually managed to have a great time at Derek's wedding.
That Sunday, I flew to Pittsburgh to join Trine, who was participating as an athlete in the Transplant Games. As soon as I arrived, things began to seriously go downhill. I began spiking high fevers at night and waking up with profuse sweating. During the day, my stomach was settled enough for me to enjoy the events, though I was beginning to take on a slight yellow tinge again. We were scheduled to leave on Wednesday evening, but I could not wait that long. My stomach was killing me, my temperature was soaring and I knew something was terribly wrong, though I was not sure exactly what. A couple we met at the Games was kind enough to change our flights so that Trine and I could fly home to Miami together, and from there we went straight to Jackson Memorial Hospital, despite my fever breaking on the trip home.
When I arrived, my health got worse. I was still getting fevers every night, despite the antibiotics. I had almost daily ultrasounds and through these we got the news that one of my hepatic arteries had collapsed and there was next to no flow through it. The doctor said there were a few possible ways things could play out: 1) the other arteries would pick up the slack, 2) surgery would needed to repair the down artery or (and this is what really took it's toll on my mental health during this stay) 3) I would have to be re- transplanted or possibly die. Oops.
The idea of being re-transplanted began to eat away at my mental stability. The thought of having to repeat all the necessary tests to be placed back on the transplant list was overwhelming, not to mention the waiting. I began to withdraw from friends and family. I would avoid taking phone calls because either nothing was changing or things had gotten worse, and I was tired of telling everyone that. I cut way back on eating and drinking and did not get out of bed and walk nearly enough. The few times I did, it was after heavy cajoling by Trine or my mother. The doctors suggested some psychiatric help, including medication, and I consulted with Trine and my family, but concluded that adding more medication to the mix was not a good idea and I could tough this out. Eventually, my mental health would improve, but that wouldn't be until weeks after my release.
The Infectious Diseases doctors began to brainstorm what could be causing my symptoms. They did a battery of tests and concluded that I may have a rare disease caused by tick bites, and they backed this theory up with my recent visit to Connecticut. I never for a second believed that they were on the right track. I had lived in Connecticut for 26 years and never once was bitten by a tick. The blood tests were not supporting their theories, either, though they did reveal bacteria in my blood. This theory was later dismissed.
The cause of my illness turned out to be very simple: Cholangitis, or strictures in the bile ducts, which limited the flow of bile and caused back up. It was the same issue that I had been having for over a year, on and off. Once the doctors began treating me for Cholangitis, then things improved quickly. I went to Radiology and they preformed a minor procedure called a Cholangiogram. They injected dye into my abdomen to visualize the path of flow and then ballooned the bile ducts so that the bile would be able to flow freely. I was sent home with a long catheter sticking out of my abdomen attached to a bag to catch the excess bile drainage. It was not pretty, but it was necessary, and effective. I also had a follow up appointment to get another Cholangiogram. I ended up having weekly Cholangiograms and the catheter for about 5 weeks.
I was in the hospital for a month…from July 16 through August 14. I watched Michael Phelps win 8 gold medals, Manny Ramirez leave the Red Sox for the LA Dodgers and the Dark Knight blow up at the box office. I was released on August 14 around 8:30pm and the first thing Trine and I did was grab some frozen yogurt and go see the 10:15 showing of The Dark Knight. Surely, this would be the end of the insanity and I could finally begin to enjoy my new liver and get back to good health. Close, but not quite.
That Sunday, I flew to Pittsburgh to join Trine, who was participating as an athlete in the Transplant Games. As soon as I arrived, things began to seriously go downhill. I began spiking high fevers at night and waking up with profuse sweating. During the day, my stomach was settled enough for me to enjoy the events, though I was beginning to take on a slight yellow tinge again. We were scheduled to leave on Wednesday evening, but I could not wait that long. My stomach was killing me, my temperature was soaring and I knew something was terribly wrong, though I was not sure exactly what. A couple we met at the Games was kind enough to change our flights so that Trine and I could fly home to Miami together, and from there we went straight to Jackson Memorial Hospital, despite my fever breaking on the trip home.
When I arrived, my health got worse. I was still getting fevers every night, despite the antibiotics. I had almost daily ultrasounds and through these we got the news that one of my hepatic arteries had collapsed and there was next to no flow through it. The doctor said there were a few possible ways things could play out: 1) the other arteries would pick up the slack, 2) surgery would needed to repair the down artery or (and this is what really took it's toll on my mental health during this stay) 3) I would have to be re- transplanted or possibly die. Oops.
The idea of being re-transplanted began to eat away at my mental stability. The thought of having to repeat all the necessary tests to be placed back on the transplant list was overwhelming, not to mention the waiting. I began to withdraw from friends and family. I would avoid taking phone calls because either nothing was changing or things had gotten worse, and I was tired of telling everyone that. I cut way back on eating and drinking and did not get out of bed and walk nearly enough. The few times I did, it was after heavy cajoling by Trine or my mother. The doctors suggested some psychiatric help, including medication, and I consulted with Trine and my family, but concluded that adding more medication to the mix was not a good idea and I could tough this out. Eventually, my mental health would improve, but that wouldn't be until weeks after my release.
The Infectious Diseases doctors began to brainstorm what could be causing my symptoms. They did a battery of tests and concluded that I may have a rare disease caused by tick bites, and they backed this theory up with my recent visit to Connecticut. I never for a second believed that they were on the right track. I had lived in Connecticut for 26 years and never once was bitten by a tick. The blood tests were not supporting their theories, either, though they did reveal bacteria in my blood. This theory was later dismissed.
The cause of my illness turned out to be very simple: Cholangitis, or strictures in the bile ducts, which limited the flow of bile and caused back up. It was the same issue that I had been having for over a year, on and off. Once the doctors began treating me for Cholangitis, then things improved quickly. I went to Radiology and they preformed a minor procedure called a Cholangiogram. They injected dye into my abdomen to visualize the path of flow and then ballooned the bile ducts so that the bile would be able to flow freely. I was sent home with a long catheter sticking out of my abdomen attached to a bag to catch the excess bile drainage. It was not pretty, but it was necessary, and effective. I also had a follow up appointment to get another Cholangiogram. I ended up having weekly Cholangiograms and the catheter for about 5 weeks.
I was in the hospital for a month…from July 16 through August 14. I watched Michael Phelps win 8 gold medals, Manny Ramirez leave the Red Sox for the LA Dodgers and the Dark Knight blow up at the box office. I was released on August 14 around 8:30pm and the first thing Trine and I did was grab some frozen yogurt and go see the 10:15 showing of The Dark Knight. Surely, this would be the end of the insanity and I could finally begin to enjoy my new liver and get back to good health. Close, but not quite.
Looking Back, Looking Forward: New Year's Eve 2009
Today is December 31, 2008. This is my bittersweet goodbye to a year that has changed my life forever. I spent a good portion of 2008 (just about 10 months) either sick, in the hospital, or at home recovering from surgery, my head swimming in a mix of pain medication and uncertainty. I got my liver transplant, my new chance at a healthy life, only to have severe rejection, ongoing bile duct issues, fevers, vomiting, and finally a second surgery which seems to have quieted the chaos. All told, I spent over two months in the hospital. Before I was transplanted, I was months away from dying from liver failure, much sicker than my seemingly healthy exterior belied.
In February, weeks after being released from my first hospital stay of 2008, and during a period of relative health, I proposed to girlfriend, Trine, on the beach in Miami. It was sunset proposal without any sun (oops…sun doesn't set over here) and stubborn candles that refused to stay lit, but amidst the warm breeze and palm tree dotted white sand, Trine said she would be my wife. We celebrated on the beach with music and a bottle of sparkling cider.
Now the hard part: planning a wedding. Then the harder part: paying for it. Our saving grace was a casting call for a new reality show that was looking for a couple tied to organ donation & transplantation that were deserving of their dream wedding. I was in the hospital when we first heard about this contest. Trine convinced me to suck it up, put off pain medication for a few hours, and make a couple videos talking about why WE should be that deserving couple. You would think that me just being in the hospital, sick and bordering on depression, would make us a natural pick, but ironically, the show wanted to be sure that my health would NOT be an issue and prevent us from getting married should we actually get picked. It was a long shot, and I'd be lying if I said that I was excited about making the videos in the condition I was in, but I knew that I would regret not giving it a try. So I tried to look as healthy as possible and we made a series of videos. Little known fact: Trine totaled her car trying to get our video to Fed Ex by 5 p.m. (not her fault).
So we made our videos, including an update a few weeks later once I was released from the hospital, just to assure the casting director that I was in tip-top shape should we be the lucky couple. Then….nothing. A few months went by with no word.
In October (just shortly after my second surgery), we got a call from the producers of Wedding Day, the new reality show from TNT. We were one of the top 3 couples in line to win a dream wedding! We spent hours filling out surveys and questionnaires, speaking on the phone, making our guest list, and contacting our friends and family about our 33% chance of getting picked to be married on national television. Sometimes, we were really positive about our chances, while other times the producer would use the word "if" and we would get discouraged and wonder if something this good could happen to us.
In mid-December, we got the news! We had won our dream wedding!!! Trine and I embraced, and shed a few tears of happiness. Then….well, I cannot really divulge much else due to confidentiality agreements. I would love to post pictures and give all the amazing details of the week leading up to our incredible wedding, I cannot do so until our show airs in summer 2009. Those who were attendance know what a great time the wedding was. Mr. and Mrs. Ryan and Trine Labbe cannot wait for all our episode to air so we can relive the experience. I would also like to thank all our friends and family who worked their asses off to make our wedding happen.
Liver Transplant
In May 2008, I received the gift of life from an unknown donor. Throughout the past seven months it has been a lot easier to focus on my health issues than to sit and really think about how I came to receive my transplant. Unfortunately, a young man had to die. I know very little about my donor, as is standard. All I know is it was a local man whose family made a tough decision in the face of their tragedy. I want to take this opportunity to thank them, even though we do not know each other. Perhaps one day we will know each other and I can thank them in person, like Trine got the opportunity to do with her donor family earlier this year. Her donor sister, Keisha, was a bridesmaid in our wedding. For now, as cheesy as it sounds, I feel as if I owe it to my donor family to make a good life for myself, a life that I would not have if it were not for their generosity. I need to show them, and myself, that their son's death was not in vain.
Please read my Transplant blogs (parts 1 through 4) for my account of the past year and half.
Wilson
One day, while at the dog park with our puggle Niles, Trine and I got to talking about how happy Niles would be if he had a friend to play with all the time. He was so good with other dogs, and we knew that having another dog would give Niles a regular outlet for his energy, alongside our daily walks and trips to the dog park . "I would not get another puggle," Trine said. So, Trine got online and began looking for medium sized dogs, perhaps a Boston Terrier. I heard an "awww" from the other room and saw the face of a tiny little puggle on the computer screen. We both agreed he was adorable and still available for purchase. We scooped up Niles and headed to the pet store with the outward intention of "just looking" but we both knew that this dog was ours, assuming he hit it off with Niles.
When we got to the pet store, the puggle was there waiting for us. We had the clerk put us all in a little play area and the little puggle, who we named Wilson per our discussion in the car, began wagging his curly little tail and licking my face. Niles gave little Wilson kisses and then tried to mount him. Wilson snapped and barked at him. Niles would not trying mounting Wilson again for months. Little Wilson did not take any crap from Niles, but the two got along great. We took Wilson home and welcomed him into our family. Today, the two dogs wrestle constantly, make a lot of noise, eat at our carpets sometimes and chew the crap out of any stuffed toys they get their paws on. But they are the greatest dogs and I love them very much.
Goals for 2009
I have high hopes for the coming year. I just joined a gym, have worked out twice, but know that to accomplish my goals and get back in the shape I was two years ago, it is going to take a lot of work, and certainly more than going to the gym a couple times a month.
My music has suffered throughout the year, as well. Before I moved to Miami, I had played my first two solo acoustic shows and it was thrilling. In 2009, I aim to get back to writing, recording, and playing music.
Being out on disability was hard on all fronts, including financial. In 2009, I aim to improve my money management skills and chip away my credit card debt. I also aim to borrow more money than I need from a major money lending institution, with no real means to pay it back, and send our economy into a downward spiral hahaha…wait…oh, right.
I am a husband now, and though Trine and I do not have children, we consider our dogs part of the family. Trine's dream to go to medical school may be realized very soon and it will be a happy, yet challenging part of our lives. In my vows to her, I promised to help her "shoulder our challenges" and will do that. I want our first year of marriage to be amazing. We've already outlasted Britney Spears' first marriage and, in just three days, we will have outlasted Eddie Murphy's recent nuptials.
Now, I have a new wife, new puppy, new liver and finally…a new year. Here's to hoping 2009 holds all the joy of 2008 with none of the pain, hospitalizations or Sarah Palin.
In February, weeks after being released from my first hospital stay of 2008, and during a period of relative health, I proposed to girlfriend, Trine, on the beach in Miami. It was sunset proposal without any sun (oops…sun doesn't set over here) and stubborn candles that refused to stay lit, but amidst the warm breeze and palm tree dotted white sand, Trine said she would be my wife. We celebrated on the beach with music and a bottle of sparkling cider.
Now the hard part: planning a wedding. Then the harder part: paying for it. Our saving grace was a casting call for a new reality show that was looking for a couple tied to organ donation & transplantation that were deserving of their dream wedding. I was in the hospital when we first heard about this contest. Trine convinced me to suck it up, put off pain medication for a few hours, and make a couple videos talking about why WE should be that deserving couple. You would think that me just being in the hospital, sick and bordering on depression, would make us a natural pick, but ironically, the show wanted to be sure that my health would NOT be an issue and prevent us from getting married should we actually get picked. It was a long shot, and I'd be lying if I said that I was excited about making the videos in the condition I was in, but I knew that I would regret not giving it a try. So I tried to look as healthy as possible and we made a series of videos. Little known fact: Trine totaled her car trying to get our video to Fed Ex by 5 p.m. (not her fault).
So we made our videos, including an update a few weeks later once I was released from the hospital, just to assure the casting director that I was in tip-top shape should we be the lucky couple. Then….nothing. A few months went by with no word.
In October (just shortly after my second surgery), we got a call from the producers of Wedding Day, the new reality show from TNT. We were one of the top 3 couples in line to win a dream wedding! We spent hours filling out surveys and questionnaires, speaking on the phone, making our guest list, and contacting our friends and family about our 33% chance of getting picked to be married on national television. Sometimes, we were really positive about our chances, while other times the producer would use the word "if" and we would get discouraged and wonder if something this good could happen to us.
In mid-December, we got the news! We had won our dream wedding!!! Trine and I embraced, and shed a few tears of happiness. Then….well, I cannot really divulge much else due to confidentiality agreements. I would love to post pictures and give all the amazing details of the week leading up to our incredible wedding, I cannot do so until our show airs in summer 2009. Those who were attendance know what a great time the wedding was. Mr. and Mrs. Ryan and Trine Labbe cannot wait for all our episode to air so we can relive the experience. I would also like to thank all our friends and family who worked their asses off to make our wedding happen.
Liver Transplant
In May 2008, I received the gift of life from an unknown donor. Throughout the past seven months it has been a lot easier to focus on my health issues than to sit and really think about how I came to receive my transplant. Unfortunately, a young man had to die. I know very little about my donor, as is standard. All I know is it was a local man whose family made a tough decision in the face of their tragedy. I want to take this opportunity to thank them, even though we do not know each other. Perhaps one day we will know each other and I can thank them in person, like Trine got the opportunity to do with her donor family earlier this year. Her donor sister, Keisha, was a bridesmaid in our wedding. For now, as cheesy as it sounds, I feel as if I owe it to my donor family to make a good life for myself, a life that I would not have if it were not for their generosity. I need to show them, and myself, that their son's death was not in vain.
Please read my Transplant blogs (parts 1 through 4) for my account of the past year and half.
Wilson
One day, while at the dog park with our puggle Niles, Trine and I got to talking about how happy Niles would be if he had a friend to play with all the time. He was so good with other dogs, and we knew that having another dog would give Niles a regular outlet for his energy, alongside our daily walks and trips to the dog park . "I would not get another puggle," Trine said. So, Trine got online and began looking for medium sized dogs, perhaps a Boston Terrier. I heard an "awww" from the other room and saw the face of a tiny little puggle on the computer screen. We both agreed he was adorable and still available for purchase. We scooped up Niles and headed to the pet store with the outward intention of "just looking" but we both knew that this dog was ours, assuming he hit it off with Niles.
When we got to the pet store, the puggle was there waiting for us. We had the clerk put us all in a little play area and the little puggle, who we named Wilson per our discussion in the car, began wagging his curly little tail and licking my face. Niles gave little Wilson kisses and then tried to mount him. Wilson snapped and barked at him. Niles would not trying mounting Wilson again for months. Little Wilson did not take any crap from Niles, but the two got along great. We took Wilson home and welcomed him into our family. Today, the two dogs wrestle constantly, make a lot of noise, eat at our carpets sometimes and chew the crap out of any stuffed toys they get their paws on. But they are the greatest dogs and I love them very much.
Goals for 2009
I have high hopes for the coming year. I just joined a gym, have worked out twice, but know that to accomplish my goals and get back in the shape I was two years ago, it is going to take a lot of work, and certainly more than going to the gym a couple times a month.
My music has suffered throughout the year, as well. Before I moved to Miami, I had played my first two solo acoustic shows and it was thrilling. In 2009, I aim to get back to writing, recording, and playing music.
Being out on disability was hard on all fronts, including financial. In 2009, I aim to improve my money management skills and chip away my credit card debt. I also aim to borrow more money than I need from a major money lending institution, with no real means to pay it back, and send our economy into a downward spiral hahaha…wait…oh, right.
I am a husband now, and though Trine and I do not have children, we consider our dogs part of the family. Trine's dream to go to medical school may be realized very soon and it will be a happy, yet challenging part of our lives. In my vows to her, I promised to help her "shoulder our challenges" and will do that. I want our first year of marriage to be amazing. We've already outlasted Britney Spears' first marriage and, in just three days, we will have outlasted Eddie Murphy's recent nuptials.
Now, I have a new wife, new puppy, new liver and finally…a new year. Here's to hoping 2009 holds all the joy of 2008 with none of the pain, hospitalizations or Sarah Palin.
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