I feel terrible! As if posting on a blog wasn't difficult enough for me to do, dabbling in other forms of social media that are quick and slick hasn't helped. I know I have a few people (shout out to T-10!) a little perturbed that I haven't posted in what seems like decades. Megan's posts during my second transplant process - first update: I did get my second liver transplant back in mid-May of this year - were beautiful, informative, and just brilliantly done really. They were written in the form of letters, more like sonnets really. I could go on but just go back and read them if you haven't yet! Time well-spent, I promise. I love that girl so much it makes me so happy to know how perfect she is for me. Anyway, I'll do a Megan post later.
I did try to post about my transplant experience a couple of times soon after being released from the hospital, but this transplant was much different from my first, and really toyed with my emotions. I felt anxiety and fear like never before in my life. I fought bouts of depression, another thing I'd never experienced for my self, but only seen others fight through it. So as I sat down to write, each time I'd get as far as my ICU experience (which was probably the most traumatic part of the whole deal) before I started reliving the experience so vividly that I'd have to stop. So now, five months later, I'll give this update, albeit super Reader's Digest version, but hopefully it helps.
As I said, and as you know from previous posts, I received my second liver transplant after a really tough year of dealing with end-stage liver failure and all that comes with that. In April of 2013 it all started with some funky liver levels, some abdominal swelling, and some bad kidneys. After about two months in the hospital, I was fixed up enough to go home and continue fighting my original liver disease, PSC, that had returned to take my first transplanted liver. At home I grew weaker everyday and lived on popsicles and a feeding tube through a central IV line in my chest. The bag that held all the goopy mixture of vitamins, minerals and proteins and I became fast friends, but not in the traditional "friendship" sense. It liked me and I hated it...but I knew how necessary it was to have. I just couldn't keep any food down, so that bag kept me alive. Changing it everyday was just a drag though.
Once my liver finally decided to really call it quits, I was admitted to the hospital. That was in April of this year. I can't explain to you in words the peace that I felt in the hospital for the three weeks that would follow up until my transplant. Each day I would go for walks and sit on blankets on my room's window sill, and just look out at the east mountains, thanking my Father in Heaven for all of my blessings, and to even be in the position I was in, waiting for another life saving organ. I was grateful for whoever would be making the ultimate sacrifice so that I could live, because I knew that the liver was coming, and that I would live. About four or five (others would recall better than I) times, opportunities for a new liver, raising hopes and optimism levels through the roof. But they all passed us by for various incompatibility reasons. The livers would be too large, too fatty, too ridden with other frailties. But I was never bothered by these "missed" chances. I knew that the Lord was preparing the best option he could for me, and it brought even more peace to my heart that Megan knew it each time too. It was funny when I got the call for the liver that would actually work. Each time a liver wouldn't work there seemed to be a lot of hype and heavy prep work to be done. My room - good 'ol T1021 - would just get hoppn' with docs and nurses and aids and people I'd never seen before, all getting me ready for the surgery. Then once the chaos would reach its peak, the news would come that the liver wouldn't work. I could tell how dejected and horrible everyone felt, and it really showed their love for Megan and me. I felt the need to console others more than I needed to be consoled. But then, the evening of May 12th around 8:00 PM, the nurses had just done their shift change, and I would have an awesome nurse that I remember having at times during my first liver transplant process. So we started laughing with her and saying how we were gonna have a party that night and Megan had all these snacks and we were gonna watch a movie so if she ever needed a break from her shift she could come chill! It had and has become a standard ritual we have with many of the aids and nurses on T10 (shout out T-10!). So after making all of our party arrangements, Megan and I were just kind of hanging out and talking. Megan left the room for a minute, and my nurse came back in with some surprising news she thought I'd already heard. She was going over the evening plan and just happened to mention, "and it looks like we're getting you ready for surgery, and..." right in mid-sentence!
"Wait, what?" I asked.
"Did no one tell you?"
"That's a pretty messed up joke," I said jokingly.
"No, no joke! We have orders to prep you for surgery. I can't believe no one told you! I feel terrible this is coming from me!"
I laughed and said, "Nah, no worries! It just sounded made up because usually I'm signing forms and everything, going through the standard drills, you know? But that's great, let's do it!" I still had a hint of skepticism to be honest. So many prank calls make you hesitant to pick up the phone again, I know from experience making the prank calls, we could only get through maybe twice. Anyway, the prep started and I just kept getting further and further along in the process that I felt well this is finally it. I couldn't believe how long we'd waited and how much we'd been through, while still being mindful that many others in my hospital slippers had gone through much worse. But the transplant was finally coming, and the surgery started I think around 2:00 AM-ish. Didn't check my watch before going under on the operating table.
Now you can refer to Megan's letters to me to know what went on during the surgery and how complex it was. I nearly lost my life, but will forever be indebted to my doctors and my Heavenly Father for all the miracles that came together to bring me out of that OR breathing and alive. Something along the lines of 12 hours of surgery, a cardio thoracic surgeon who happened to be next door when my surgeon Dr. Alonso and Dr. Fujita at her side needed a chest cracked open, seven full-body blood transfusions, and tears of prayer from Dr. Alonso begging me to stay alive to be Miles' daddy. I'm a pretty atypical patient, but all of my nurses and doctors, both from the clinical and the surgical side, aren't typical clinicians of people. I felt and feel so incredibly loved and well-cared for by this group. Some have become fast friends of ours, people we love and admire and actually hung out with! I think it helps that I have Megan on my team because, she's kinda the Jordan to my Pippen. She instantly catches your eye and you're in love with her from the beginning, and I just try to keep up and still sneak on the Dream Team's bench. Bottom line, we feel so loved and try to reciprocate that love and so far it's worked out. It's taught me a lot about how far that attitude goes in life.
Wow this post is not the "Super Snappy Quick Update" I promised. Sorry. I press on, read along if you choose.
Let's just say I woke up from surgery feeling pretty messed up. The ICU was super tough on me, and recovery in the hospital was just tough. In the ICU their main goal is to get the patient up and moving so that physical and mental functionality can set it its natural course. I know how important getting up and moving is to recovery, but I couldn't believe how much I felt all of the trauma I'd gone through while I was out during surgery. They want to get you up and moving, and it seems like they will beat that desire into you. I know it seemed worse than it really was, but I developed a few enemies down there, so there went all that "you get the good you give" stuff I guess. I just couldn't get moving since I was in so much pain and had gone through so much. I literally felt like I was in a MASH unit while I was there. Finally on my last day in the ICU, I had kind of come around. It took me having to do lunges and squats while vomiting profusely and my naked hind parts hanging out for all to see in order to prove that I could leave the ICU. When push comes to shove I'll do what I have to, I just didn't feel like it. Getting up and staying up to do this took a tiny little note placed on the other side of the room. It was from Miles and simply said, "I (Heart Sign) Dad." I fought the tears and the vomit until they said I was good and that I could go back up to T-10 to continue my recovery. I was so relieved! I was able to back up to my exact room that our amazing nurse Tsering had set up for us. I was so glad to be past the ICU, but recovery still proved to be super taxing, now emotionally.
I think that my first transplant was a blessing and curse. Looking back it seems that it was so easy! I was sick for a couple of weeks, transplanted, out of the ICU in under a day, and out of the hospital in a week. I was playing golf and biking and back to normal activity within a month. This go-around, I had all the difficulties listed above and then some. But from a recovery standpoint, I still had it in my head that it was going to be a cakewalk. "As soon as I get that liver, I'm going to be doing all those things I did before, that I see other people in worse shape than I was," I would think constantly. I didn't, however, anticipate the tough surgery, or the fact that having been so sick for so long, recovery would be such a beast. I started to get down on myself, that I wasn't doing enough or working hard enough, and every day in the hospital was a sign of weakness that I just couldn't accept for myself. It took a lot of encouragement from Megan and all of the people who had helped me so much pre-transplant to get out of the funk and get my head focused in the right direction, the right direction being to basically accept the reality of all that I'd been through and to push forward despite my unrealistic expectations. I remember going for a walk down on the hospital's main level and finding a chair to sit in when I broke down into my first ever panic/anxiety attack. I called Megan and asked her to come find me since I was so dizzy that I couldn't find my way away form this spot I'd sat in 50 times before. Then by some sort of miracle the head social worker of the transplant team walked by and stopped to ask how I was doing since I was visibly shook. I was talking to her when Megan arrived, we set some goals for productivity, and that was that. It still wasn't super easy after that but her counsel and ideas, along with Megan's counsel helped so much and it was such a blessing that she just happened to be walking by.
I think I was only in the hospital recovering for a few more days than I'd been for my first transplant, but they were tough. They were also such a blessing though. I was able to learn and connect with Megan, whom I'd been married to for nearly nine years, in ways I'd never been able to before. I was able to see and feel emotions that so many people struggle with on a daily basis, and grow from it. Easy for me to say now that I'm home! But in all seriousness, I value these experiences, and realize that the hardships we go through in life are never insurmountable, and there is always, ALWAYS someone who can help us through one trial or another.
Once I got home life went on, but now I was eating! I was eating anything too. I'd fallen in love with the hospital's Chicken Pot Pies, so when I got home and looked at what food we had, I saw a frozen Pot Pie and just cooked it up. I have no idea how long it had been in there, but I ate it, and it was so good! Megan got back from the store with stuff I'd requested and man...you should try going without any oral food for over a year and then just being able to start eating. CRAZINESS! Actually don't try that that. Just take my word for it, it's awesome. Recovery continued slowly, and I still had a few struggles with keeping perspective. Since they had to perform a Sternotomy to complete the transplant safely, my chest was (and still is) really pretty tender, so much of my physical activity is still very limited. But life became as normal as it could. I was able to make the second half of our biannual Beach Trip to North Carolina, which is such a blessing in and of itself that my Grandma Bonne (Bon Bon to me) and Grandpa Ted provide for the Simmons family. I had completely taken that trip out of the equation of my future plans but my two main dudes, first Surgical PA Benjamin and secondly Dr. Frech - who may or may not become Miles' Godfather - both gave me the clearance to go for the second week of the two-week trip, noting that emotional healing is just as, and at times more, important than physical healing, to which I couldn't agree more. But the Beach was a blast and a blessing like it always is, and truly helped my healing process along. As my strength built we went on hikes as a family, beautiful canyon drives...basically anything to get out and rejuvenate and live.
With liver transplants, you typically are heavily medicated for about three months with a high dose of immune suppresant drugs to help your body fight rejection of the new, foreign liver. After those three months, you come off of those drugs, thus helping your immune system to not be so compromised and weak, and you are able to come out of the three-month, post transplant, "quarantine" phase. During quarantine, you have to be super cautious of contact with others who are sick or scenarios where you could pick up an infection of some sort. That's why I used a whole bag of wet naps sanitizing my airplane seat going to the Beach, and why that trip was a big "if" in the first place. My time period to come off of those drugs was near the middle to end of August sometime. After that, Miles would start Pre-School, Megan would start working more, and I would finally go back to work after being away for almost a year and a half. My work, Bonneville Mortgage now Bonneville Real Estate Capital, and co-workers are some of the best people and friends someone could ever ask for. In times when many people were struggling to find work, Bonneville sacrificed and double-timed it a lot for me and have gone to great lengths to keep me on staff. They have been such a blessing to our family, and in August I was excited and getting ready to go back to work.
Before life went "back to normal" so to speak, we decided to take a quick trip down to San Diego to get some sun and beach in, and to see Megan's older brother Ryan, his wife Caroline and their kids. They were so incredibly accommodating and really showed us an amazing time. Even with the less-than-stellar news that would come mid way through the vacation, they showed us so much love. It was just super fun! Yeah I said less-than-stellar news. Before we left, I had still ben getting my routine blood tests done. I go to the lab at the hospital three days a week to have all of my liver levels and other tests done to make sure my new liver friend is behaving itself. The Monday before we left, the liver started to misbehave a little bit. Levels began to elevate slightly, and it started to concern my docs a little. I explained we had planned this trip and wondered if it would still be ok to go. I told them that it would totally fine if I didn't go, health is more important, all that, but they said I'd be ok to go, but to just get labs checked on Wednesday morning, which was the day we were planning to leave. So that's what I did, and we left. We knew something was up with my health, but didn't think anything of it until Friday around noon when I got a call from one of the transplant coordinators. She wasn't my coordinator (every patient is assigned a coordinator who keeps everything in order and all communication goes through the coordinator - mine is Sue and she is a literal angel on earth - so amazing!) because my coordinator was out of town at the time, and since it was someone filling in she didn't know I was gone either. We were planning on returning from our trip the following Wednesday, and the woman on the other end of the line started talking pretty quickly, which I wasn't ready for. Megs had gone with Ryan to grab some sandwiches while I waited in the car with Miles. The coordinator started saying how my lever levels were really elevated and she was asking me if I knew that or if I knew how high they were. I didn't know how high they were, just that they were kinda creeping up before we left on the trip. She then started saying how I needed to go in for a liver biopsy on Tuesday and have all sorts of labs done. I let her know that I wouldn't be back in town until the following Wednesday and that I could do it probably Thursday. She seemed a little put out by this news, almost angry, which I thought was surprising since it was my health we were talking about. I got dizzier with each exchange in the conversation, and she said they get me scheduled for a biopsy once I was back and to get some blood labs drawn while in California which I agreed to, no big deal. Anyway, my head was spinning. I had left the car with Miles to get some air and walk midway through the phone conversation, so I took him back after hanging up and found my way to to driver seat. Once Megan got back to the car, we started to head to the nearby beach we had planned to go to, and I told Megan about the call. Needless to say it put a little damper on our vacation. Thoughts of what it could be just flooded our minds, primarily we worried that the disease was back, which would obviously necessitate another transplant and who knows what else. Having gone through what we just did, and coming out of it, it was a little hard to enjoy the beach that day. Good talks with Megan and with Ryan and Caroline eased the tensions in my mind, and Megan's as well though I can't fully speak for her. We knew there was nothing we could do, and that projecting problems that weren't there yet did no good. I started feeling sick and couldn't eat very well. Megan's mom Diane offered to fly me home early but I just couldn't miss this time with family, nor could I leave Megan to drive Miles home alone, even though she basically did when I laid down in the back of the car when we left and didn't spell her from the driver's seat until Nephi! The news may have put a damper on the trip, as well as me getting sick, but it was still such a blessing and so needed.
I had the biopsy done Thursday morning early, and before we even had the biopsy results, my blood test got me admitted to the hospital Friday morning. I was in for two weeks. Our worst fears of the disease returning were dispelled by the news that I was experiencing moderate rejection. Not good news my any means but, treatable. And so the treatments began. We first tried a steroid called Solumedrol, which worked pretty well, but then my numbers wouldn't continue to drop past a certain point. Then we tried treatments of Thymoglobulin, which also worked to an extent. I went home for a week with these results to see how they would continue to work at home. When things didn't keep improving, and I got really weak and sick again at home, I was readmitted for a week to try a treatment Plasma Faresis where they take the plasma out of my blood, spin out the waste, and replace the clean plasma back into the blood stream. After a week of this I felt pretty good and we decided to wait and see what happened. Different treatment, kind of the same story. Levels dropped only so far then leveled off. Now I am at home feeling pretty good, and each week I go in for an infusion treatment of a drug called Solaris.
The good news is that I have tolerated all of the treatments well. Things seem to be going in the right direction. The bad news is if and when the rejection is cured, we may not know for sure which of these treatments was the real nail in the coffin, but I agree with my Docs' methodology that we gotta go fast and hard to get rid of it, then sort it out later. Another not-so-great piece of information is that once we started these treatments, I went back on many immune suppressive meds. Not only am I on the original offenders that you take post-transplant, but on a whole grip of others, plus additional meds to help control symptoms from those drugs. I think every day I take at least 45 pills. So that's a kick in the teeth. But taking the is easy, but because of them I'm back in the "quarantine" phase, to the max this time since my white blood count is dangerously low.
It's somewhat discouraging, but we are pushing forward, always with the mentality that we are not defined by my illness, and that in the whole scheme of things, this is just a brief little struggle, and it will pass. We are forever grateful to all those who pray for us and support us in so many countless ways. You have all helped us to see these trials through a different lens, and we can only hope that we can sometime, either in this life or the hereafter repay you somehow for giving us life and happiness where it can be somewhat difficult to find at times.
Megan has been preparing an amazing slideshow that includes many of you, but most importantly shows how beautiful the lessons and blessing we have gained from our experiences. She will finish it up and post it soon. That's what the radio and television people call a tease. I got a sneak peak, verdict is in, it's awesome and you will cry. A good cry.