2008/02/05 - Transplant Evaluation
At this appointment, I met with one of the transplant surgeons and a pre-transplant nursing coordinator. We reviewed all of my test results. We discussed that I had an option of listing on the UNOS13 at multiple transplant centers. If I remember correctly, I had the option to register at two different centers but would probably have to repeat the steps in the evaluation process at the 2nd center. I elected to only getting on the list at FMLH. 2008/02/17 - Broken Left Humerous As if I needed something else wrong with me!!! I decided early after my initial meeting with Josh and my Hepatologist that I needed to get better control of my body in general and with my diabetes in particular. I decided that I would start some sort of exercise program. I wasn’t strong enough to follow a disciplined workout at a gym, nor could I afford it. I opted for a free exercise: walking. At first I just walked in the area or for a little ways down a state biking/hiking trail available very near my residence. On this particular date I was confining my walk to within my townhouse’s complex, walking on the “streets” which are really just part of the parking and access drives. I would bundle up in 4-6 layers of clothing to stay warm enough outside (this being winter in Wisconsin).The ice on the street was 2” thick in spots but I thought I could walk on it if I was extremely careful—NOT!!! That morning, we were actually experiencing a light rain and there were also pools of water to contend with. Guess what was underneath the water: more ice! To make a long story short, I slipped on the ice and lost my balance. In the instant of panic between realizing I had slipped and when I landed in a big pool of water I threw my left arm straight out to break my fall—not the best response to the situation! The impact caused my humorous to shatter just below the “ball” of the shoulder joint. I struggled to get up, now soaking wet to my skin in frigid temperatures and in extreme pain. I was about ¼ mile from my home and could not stand to walk with my cane for that distance. My cell phone was in my left breast, outside pocket of my soaked coat. I finally got it out of the pocket using my right hand because I could not use my left arm at all. Luckily my cell phone was not waterlogged or damaged in the fall and I was able to call home. Scot drove over to get me. It was very difficult to get into his pickup truck but Scot managed to get me situated and strapped in. I remember it was early in the morning because Scot, who works in law enforcement on 3rd shift, had already showered and was dress for bed. We had to stop back home for him to change into civvies before the trip to the hospital—I stayed in the truck just trying to control my pain. Once we got to the hospital everything was pretty routine for this type of an injury. Of course there was a major struggle to get all my layers of clothing off so they could examine me! I wouldn’t let them cut anything because I really couldn’t afford the loss from my wardrobe. Eventually we got me stripped down to the required hospital patient wardrobe. There is no way to cast this type of injury. The only treatment is to restrict the movement of the whole arm. My liver problems and previous lifestyle caused massive reduction of muscle mass so I had very little strength throughout the recovery period. Since the height of my drinking days to this point in time I had gone from wearing 3x to medium sized shirts! Recovery took a long time. It wasn’t until my transplant surgery that I felt that my shoulder was back to as normal as possible. 2008/02/25 - UNOS Liver Wait List; 2008, MELD=14 This was the official date that I actually went on the UNOS list. YEA!!! While this was not the first time my team talked to me about my MELD14 (it was 19 when I first started the process) this became the “point of entry” to the list. It is important to understand a little more about how MELD and "transplant waiting list" relate: Let's recap what MELD represents. Everyone, even "healthy, normal, people" have a MELD as its basis in in the results of three blood tests15. As the liver starts to fail, the blood test results change thus changing the MELD's base value. Additional adjustments to the MELD occur based on additional conditions of the patient. I believe there is a bias depending on the type of liver disease. MELD values indicate the patient’s relative health: the higher the value, the sicker the patient | When organs become available, they are evaluated (tested) to see if they are viable and establish the criterion for matching to the pool of patients that have been placed on the waiting list. All patients with matching criteria form an actual list ranked by the patient's current MELD value. The organ becomes available to the patient with the best matching criteria based on rules set by the UNOS. Some of the rules involve proximity between the candidate recipient and the organ donor as time is a critical factor to successful transplantation. The rules also allow for some leeway in some of the matching criteria depending on the condition of the organ and the MELD of individuals on the candidate donor list.
2008/07/05 1st Call—Yikes! Got THE call from FMLH on a Saturday evening: "Please get your butt in here for a transplant; You have 2 hours to be here...". My family thought I was joking when I said we had to get there so quickly! Got there (about a 45 minute drive), checked in, dressed in the usual gown and they said "er, wait a minute!" Turns out my liver needed something the donor liver didn't have. We'll start over when the next one comes in. Talk about emotional highs and lows. Overall, I'm fine for the wait and the reality check of going through the process. Now I feel on pins and needles whenever I'm out of the house... 2008/07/09 It really happens! July 9, 2008 Who knew?! A few evenings later, about 6:30, I received another call to report to the hospital! My boys were all here as it was the first time CC Sabathia was pitching for the Milwaukee Brewers and they were going to the game. I had just taken my insulin before a nice BBQ meal (of course you can't eat before surgery so I anticipated a real sugar low soon with no fuel for the insulin). Christopher & Brandon go to the game, Scot goes to some other functions that he needed to attend and Prudence & I go to the hospital. Checked in, changed and informed the nurses (the first of many that were the BEST people in my world!) about my blood sugar worries. Nothing materialized—must have had enough adrenalin flowing to compensate. Scot finally caught up and was there when they took about 25 gallons of blood for pre-surgery testing. I remember talking to one of the attending residents and finding out that my MELD was now 23. My HCC was confined to about 2.5-3cm so I was still in the safe range for surgery. I don't remember if Christopher and Brandon came by after the game but I think they did. Surgery would not be until about 5AM of 7/9 so everyone left and I dosed off. Barb, one of my most favorite nurses, woke me around 3:30 and said we would be going soon. I called Prudence and Scot who had not gotten any sleep and said goodbye as I didn't think they'd make it back before I was whisked away. They just made it as my transport began. Everything became blurry at that point—they took my glasses and I was overwhelmed by everything going on. I went to the prep area, was set up for and given IV, asked a billion and a half questions, and tried to stay warm (one of the problems with liver disease is that I was always cold, usually freezing). I was buck naked except for the discreet placement of a blanket. The whole time that I was conscious in the prep area there was a "zip-zap" plastic card embosser (like they used to use for credit cards) running for all the labels, orders and other miscellaneous paper work that would be generated. I talked with a lot of nurses and anesthesiologists—everyone was super nice and doing their best to make me comfortable. They explained that they would be attaching some devices to my back to keep me warm during surgery—like I would know anyway! They started the knockout juice as they started attaching these thick clay-like pads to my back. They felt warm, slimy and sticky. I don’t remember a single coherent thought for several days. My Transplant Journey Page 11 2008/07/11 - Abdomen closed 2008/07/12 through 17 Recovery on the Transplant Floor Need to mention hallucinations, walking adventures 2008/07/18 - Home from Transplant 2008/12/29 - Fractured right hip |