The 6 Year Mark

I don't really know where to start, it's been so long; but I told myself I would write something this year. Before I started writing this, I went through and read all of my entries from 2013. There were things that made me laugh and others things made me so happy and yet almost choke me up. A lot of things have changes since surgery, both good and bad....but hey that's how life works, right?

I'm want to start off by saying Ed is doing fantastic. He's back to doing the things he loves and is enjoying the retired life now. I talk to Ed a lot, it usually doesn't go too many days before one of us reaches out to the other. Whether it's a question about something or a random thing that came through one of our minds from our journey. We have become very close as you can imagine’ we try to get together several times a year and get a few fishing trips in. Ed has a place down in Florida now and likes to send me fishing pictures. While it's painful to be sitting in NJ (especially with the way the weather has been lately) it brings a smile to my face seeing Ed live the life he worked hard for. We started going to Florida every year around the time of our surgery to celebrate. We plan on doing that for years to come, we may switch it up a little and do some different trips. We = Ed, Justin, and I. We talk about the different stories from Penn hospital and often it ends with Ed and I saying how bad the food was. We make sure to make up for that by eating as much good seafood as we can. It has been great to have that yearly get away with the two of them. Ed and Justin have felt like family all along, I never see that changing. I will be forever grateful to have both of them and their families in my life, they have always been there for me and I, will always be there for them. I had a few close family members pass over the years after surgery. Like any good family out there, Ed and Justin were there for me and my family when we needed it most. You never really know when something small while forever be permanent in your mind. When my Uncle Bud passed away, I quickly thought of all the great memories we had over the years. One of my most memorable memories was at my grandmothers 90th birthday party. Before we focused on my Saint of a grandmother, he stood up in front of the family, told everyone how proud of me he was and called me a hero. It was one of the most proud moments I had ever felt and it made me feel really good inside. His words and the expression on his face will forever be engraved in my memory. I think this may have weighed on me a little more because Uncle Bud and Ed knew each other. The 3 of us would occasionally run into each other while at Penn Medicine. In the beginning, Uncle Bud would check on Ed when he was there. As time passed, Ed was feeling better and checking on Uncle Bud when he could. Very early on in this whole process, Uncle Bud made it clear. Ed was now part of the family, and family takes care of each other. Just one of the many things I had learned from my Uncle. For that I am grateful.
       As I try to finish typing this up, more and more things come into mind. I remember this day 6 years ago. I was starving right now, it was the night before surgery. I wasn’t allowed to eat much. I remember not really worrying about it too much after awhile (there were bigger things to worry about at that time). Tomorrow was a big day and I needed to sleep and I had a few things written down that I needed to do before calling it a night. I was so anxious, sleep was tough. I remembered feeling like I just feel asleep but it was early as hell. But we got through it. We will be in Florida later in the week. I hope to have some new pictures to share as well. I do want to thank everyone/anyone again who was supportive over this time in my life. I get to reflect on that once a year (thanks to time-hop) reading some of the words is always humbling. Below are some pictures over the years and trips we have been on since surgery. Remember to always help those in need. Big or small, you may make more of an impact on someone then you will ever know. You also never know when you may need help yourself one day, so do what you can and stay humble! Life is good!

Time to get up, get ready, and get home

So after the horrible day I had previously described I was determined to get over this and get myself up moving and ready to get out of here and go home. The day after that they came in my room in the morning to check my vitals and give me my meds like normal. This nurse said "ok Zach, we are taking the catheter back out and want you to try going on your own again today." This time, no fear, I was turning it all around. As unpleasant as it was to have it taken out again I immediately got up and did a few laps around the floor. Came back to my room, asked my nurse to get everything ready for me to get washed up, but this time I wanted to do it on my own I said, and that's exactly what I did. Got all cleaned up, Mom brought me my electric razor so I shaved my face too, was feeling great!! I remember they brought my lunch in and I was thinking ok I'll even try and eat this. Yeah, that lasted until I lifted the cover off of the food and smelled it. No thanks! I stuck with the protein shakes.  Had a few visitors come and see me that day which was nice and of course Mom and Sis were there for awhile. I took a nap a little after lunchtime and then I woke up randomly from and odd feeling...I had to go to the bathroom!! Woohoo! Went in did my thing called the nurse in they measured liquid then did the bladder scan and confirmed that I emptied my bladder out pretty much completely, success! If I had the energy to do a victory dance I think I would have done it at this point. I stayed with the positive thoughts and had a pretty good rest of the day. I was ready for the next day to find out when I could go home.  I got a really good night sleep that night, barely remember waking up at all. It was now Saturday morning and I knew the surgeon would be in to see me in the morning and hopefully give me some good news. Sure enough he came in with his team, they asked how I was feeling and all the normal questions I got. Then he smiled at me and said "Ok, lets get you home tomorrow." Yesssssssssss! Relief! I was so pumped up, this was by far the best I felt the whole time I was in the hospital. He also said that someone would be in to take one of the drains out of my side. Someone came and prepped my stuff for me to wash up again, then a nurse came in and said the guy would be in to take the drain out. I got myself situated and layed in bed and started watching some TV. Then there was a knock on the door and a man came in that I've never seen before. He told me he was here to take the one drain out, I perked up and smiled and said ok lets get this done. He got all the things ready he needed and said "ok, now try not to move, this is going to feel very uncomfortable and hurt a little." (Gulp) Ok! what the heck here goes nothing. I said go ahead and held my breath...holy shit did that hurt!! Probably the most painful experience for me to date being in there. I remember him looking at me and saying "You kind of moved a little" in my head I was thinking yeah, no shit I moved! You just pulled a plastic tube through my side I guess that was supposed to tickle?! So after that I was in a lot of pain coming mainly from my side, buzzed my nurse in asked her to help me get comfortable and gave me my pain meds and I feel asleep for a few hours. That afternoon was pretty relaxed, I was glad because they finally moved Ed up to my floor and out of the ICU. We were actually neighbors which was awesome!! I went and saw him as soon as he got settled in. I had a few more visitors come see me after that, which was nice. Mom and Sis stayed pretty late, around dinner they brought my food in. It was supposed to be a "chicken fajita salad" yeah I don't think so, gross!! I gave the tray to my mom and said make it look like I tried eating this. She threw some out and mixed the left over stuff around and shook it up. My nurse came in and said how was the food? I said, it was god awful and I'm not eating anymore of it. I said can you find out if I'm allowed to get food from the cafeteria. I heard the food from there was much better. She came in and said yes you can, you can have anything you want really. I was happier then a kid on Xmas. I looked at my sister and said get down there and get me some food please, call me when you are there and tell me what they have. She called a few minutes later and went through a list of different things. I stopped her on chicken fingers, get them and a bag if chips...Ok...what do you want to drink she said.? Do they have Mountain Dew....Yes....Done!! I was ecstatic about food for the first time in awhile. My nurse came in and said you look pretty happy..I replied "I can't wait eat!" He said I have to put a new IV in your arm. Ok, no big deal, this was nothing compared to everything else. After about I'd say his 6th attempt to stick my arm, I said that kinda hurts man. He said I'm not really good at this I'm going to get someone else to come do it. Ok, fair enough, he returned and said since your going home tomorrow I don't need to give you a new one I can just flush the one that's in your arm out now. Great flush it, I want to eat!!  She brought it up and I think I ate about 3 chicken fingers and I was full. But I was totally content and happy with that. I remember telling Mom and Chels to head home it was getting late and I was going home tomorrow so I was going to try and get some sleep tonight and get ready for tomorrow. A good friend of mine's Dad came up to visit after Mom and Chels left. I remember being very excited to see him. He had been like a father to me, since mine lived 10 hrs away this was a great thing to have. Me and him watched some of the hockey game that was on and just talked for awhile and caught up on things. I told him the things I had been going through and what progress I was making. We had a really great conversation (as we usually did) which was a great way to end my last night there. I remember getting a little sleepy and I think he was picking up on that and said he was going to get going at that point. I got up with him and walked with him over to the elevator and told him how glad I was that he came and saw me. I watched him get on the elevator, then I walked slowly back to my room with a big grin on my face. I was just about to talk in my door and then I thought I would go say goodnight to Ed. So I walked in his room (which was hotter then hell) he has the heat cranked up, but he had lost a lot of weight so I knew he was probably cold a lot of the time. Had a couple words with him, shook his hand and told him to get some rest. At this point I think I had sweat dripping from my head. I walked back to my room (which I had pretty damn cold) got in bed and went to sleep. Tomorrow was a big day and I couldn't wait for it to be here.

                                      Took this right before I feel asleep that night...ready to go home :)

First Post-OP Visit

         Friday was here already and I had an appointment to go back and meet with my surgeon. I'm sure it just going to be a quick check on my incision and what not to make sure I'm staying on top of my stuff, and like ever other hospital trip they would probably be drawing blood. Justin and my sis were with me, I learned that before I left to go to Philly that Ed was in surgery for an infection. They were doing a "wash out" inside of him  just to make sure that everything was ok. This made me sad knowing that he was back in surgery but I was hoping that they found whatever it was they were looking for and were going to be able to get him more comfortable after that. Sure enough, I got to Philly, they checked my incision, said everything was looking good and to keep up the good work. The doctor told me I was able to swim and stationary bike now. (Climbing the ladder slowly). I am due back on the 21st for my next visit. Looks like hopefully by June 4th I'll be cleared to be able to drive again. This not being able to drive shit really sucks!! After my appointment we went over to the OR waiting room to wait and see what we could hear about how Ed's procedure went. The doctor came out and said all good things pretty much, no negative news. They were able to do everything that they had planned on doing when  they had him open and hope that it will make a difference and help with his pain. I was very glad to hear good news for him. While we were waiting for him to go back to his room a nurse came around and was updating people in the waiting room on patient status's. When she came over to us she started talking and said that she had remembered him going in for surgery the week before (when we were starting the transplant) I told her I was the donor and she seemed shocked to see me almost. She said I looked good and reminded me how great of a thing I had done. She said she never got a chance to really see a donor after surgery that close in time and she said now I can I can tell people in the future that if you do what your supposed to do you will bounce back in no time. We had to leave Philly to get back so my sister could get to work. Today was Justin's birthday so we were going to the office to have cake and stuff for him. He had to take a call when we got back so I went to Maritsas down the street and got my typical lunch (Bacon Cheeseburger melt on Rye with french fries) I saw my friend Morgan and Melissa who worked there and caught up with them for a little bit before returning to the office. Amie picked me up from Maritsas with Justin's kids and we went back to the office to light the candle and give him his gift from us. We did that all that and then I was ready to head back home, I ran across the street to the pharmacy and picked up the prescription that I had dropped off earlier in the day. Amie drove me home and I went  in and took a quick power nap before Lyman came and picked me up. Once he got me we went up to "The Jug" a common place where I would hit happy hour and get wings on Fridays. (Seems like its been forever at this point). Went up there and met a few good friends sat outside at the gazebo bar drinking coke and just bull shittin' on a nice afternoon. It was really nice.  About 8:00 I was sore and tired so we headed back  to my house and I feel right asleep when I got in the door. I woke about 9:00 and my friend Jen came by to pick me up to take me to go get some food. We ended up hanging out for awhile and then I went back home and again, feel asleep right away. It was a long Friday but I was feeling pretty good at this point....ready for the days to keep moving, the pain to get better, and for me and Eddie to be back to 100%. I took this picture the day after I came home, there's my new mark. The 2 holes at the bottom of it are where they had the drains going in my side.

Beginning of being on the transplant floor Rm 4004

I took this picture after a horrible day that day, knowing I saved a life was probably the only thing making me happy at this point that day.

I remember going into the room on the transplant floor, it was Rhoads 4004. Funny, the first thing I noticed going into my new room was the my TV was def. a down grade. Now more flat screen and it was pretty high up on the wall. I checked the stations right away to make sure I had A&E and Comcast Sports Net so I could watch Duck Dynasty and the Phillies games. I guess this was really the first time I had thought about TV in a few days. My nurse came in and asked how everything was and I told her it was hot in the room and I wanted the AC turned on. She went and took care of that and came back in to let me know the room was at it's lowest temp from the thermostat but she had contacted maintenance and asked them to kick up the air for me. This was a good start for me in my new room (the little things really meant a lot). She came in about a half hour later to get my vitals, empty the drains in my side, and all that jazz, and told me I could now get the IV that was in my neck taken out, I was excited about that. Again, it was another step forward and was helpful for the comfort aspect to not have something hanging out of my neck anymore. My surgeon came in with his "team" a little while later, to check on me and tell me that I was doing good but he wanted me to start breathing more into this little plastic tube to make sure my lungs were filling up properly and to avoid getting pneumonia. So this and getting up and moving around sounded like it was the best 2 ways to get out of the hospital sooner, so right away I started doing what the doctor said. I was up walking laps around the floor right away, although there was some pain when doing that I still had the epidural in my back so that helped with the pain. So the first full day on the floor went well, my nurses were awesome and on point with everything which was a really good feeling. I was able to wash up, brush my teeth and I shaved. They changed all my clothes and I felt like a new man, haha like I said in the hospital its the little things that really mean a lot. The one thing was terrible was the food, every time they brought me food I had no interest in eating it at all. Little did I know my pain experience was about to change ALOT. The nurse came in after mom and my sister had left for the day and let me know that they wanted to take me off of the epidural and they were going to start giving me my pain medicine by mouth now. I wasn't to excited about hearing this but again, I knew this was a step forward.  So just like they said they came in that night when I was just about sleeping and disconnected the "pain pump" and started giving me my meds for pain now. They also took the catheter out of me to which was nice and again another step forward. So I went to sleep that night a little worried about how the pain was going to feel when I wasn't able to control it is easily as before. I woke up that morning not feeling to good at all, the surgeon came in with his team  and started checking on me with no having the epidural anymore. The team member started pushing down on my stomach and immediately I was not a happy camper. I felt like this was the first time I was rude to someone there, they head Doctor said to her not to push so hard and I let out a strong and utter "yeah what he said" to her right after he said that. The pain was horrible I felt it shooting down the side of my hip and into my leg. I remember thinking oh crap is this what the next few days are going to be like. After they left I decided that I was going to try and do a few laps around the floor like I had done the day before. I spoke to my nurse about getting washed up and new sheet/clothes and stuff after walking. I started walking around the corner and the pain was terrible, to the point where I was halfway around the floor and I was debating on which was was quicker to get back to my room because I couldn't take it anymore. Before I was able to hit the pump and the pain would go away, I did not have that option anymore. So after I crawled back to my room I got in bed and my nurse came in and was going to help me wash up, I really didn't even want to do that at this point but i knew that this would  make me feel a tad bit better. I got washed up and crawled into bed and feel asleep right away. I stayed in bed for awhile and knew that I wasn't going to have any visitors for a little while. The nurse came in while I was sleeping and woke me to give me my meds and check my vitals. He told me that I had until 2:00pm to take a pee on my own since I hadn't done that yet. I wasn't to happy about this now either, so I did everything I could to try and make myself go....I was pacing back and forth in my room, running water, sticking my hand in warm water. It was to the point where nothing was working and I was going to start using google for ideas. The time was now 2 and I hadn't gone yet, so they did a bladder scan to see if my bladder was full, if it wasn't they were going to give me another 2 hours to try and go. But I knew that it was full I had been drinking everything in sight to try and get to go. Sure enough the nurse confirmed that I had a liter of fluid in my bladder. He then told me that they were going to use a "straight catheter" so they could drain my bladder. At this point I was very upset, I was in pain and now I was going to have something done that I'm sure nobody ever wants to have done. So after the awful procedure I just wanted to be left alone. The nurse gave me another dead line this time I had til 10:00pm to go again. Mom and Sis were here now I was trying to be some what nice but was in no mood really. We chit chatted for awhile and again I feel asleep. Justin came up to see me later that night and I kind of vented to him about my day and felt a little better. I think talking to a guy about having that done (knowing they could understand why I was not happy) made me feel a lot better. He convinced me to get up and walk around to, maybe that would help with going to the bathroom too. I actually did pretty good and did 3 laps around the floor again too. As soon as I went back to the room I went to PEE!! Woohoo (again the little things matter, haha) I told the nurse when she came in the good news with a ton of excitement. I thanked Justin before he left for talking and hanging out with me, it was def. the best part of my day that day. The nurse came back to my room gave me my meds and checked my vitals. I feel asleep pretty fast tonight, it was a long day. I got up to use the bathroom again early in the morning and had to let them know whenever I did so they could monitor how much fluid I was putting out. She came in after logged it and and then checked my bladder for fluid again...there was still 750mL in my bladder so now I was not emptying completely. :( She had to contact the doctor and came back in and said we are putting the catheter with the bag back in. Oh great, not again, this was really happening. I was very sad and pissed off at the same time. They came in and did what they had to do, again SUCKED!! This nurse was probably my favorite of my stay though, her name was Caitlin and she was awesome, she said a few nice things to me afterwards to try and make me feel better, got me comfortable in bed and off to sleep I went. I remember I did say a prayer that night before I dosed off asking god for a better day tomorrow and to watch over Eddie to and get him up on my floor. I was beginning to worry because he was not there yet, but I knew he was in  a lot worse shape then I was going into this so it was going to take some time.

The day after Surgery

The picture is me when they got me up in the chair in ICU day after surgery.

So I didn't get that much sleep the night before in ICU. But was some what anxious to get up and moving out of ICU. They had told me before that the quicker that I got up the better I would start feeling. I was still on the "water sponge" diet. I did get the tube out of my nose this morning, which was a huge relief. I was hoping that meant I could start drinking, but it just meant I could have ice chips now, which was some what of a plus. I could at least keep my throat from being extra dry. I also got one of the IV's taken out of my left arm. Then after that they got me out of bed and sitting up in a chair. The pain just trying to get up out of bed was pretty bad but I made it. I sat in the chair for about an hour and then asked if I could get put back into bed. I was exhausted at that point but did feel a tad bit better. Mom and sis were there when I was in the chair, I told them to go grab lunch and let me take a nap. I was then able to lay on my side a little bit and man did I fall asleep fast. My surgeon came in and woke me up about an hour after I feel asleep and told me I was doing really well and she wanted to get me up to the transplant floor and out of ICU. I was glad cause I knew this was a step in the right direction. I asked her how Eddie (my recipient) was doing. She told me that he was doing good, so that was a big relief to me as well. I feel back asleep for a few more minutes and then Justin, Amie, and Terri surprised me with a visit which was nice. We caught up for awhile on what has been going on and I told them that I had sat up in the chair and what not, they were all so happy to the progress that was being made. I had multiple Surgeons and teams come in and check on me to see how I was doing. It was kind of weird hearing them all talk about my case in the hallway and then being surrounded by people in my room. They wouldn't stay long which was nice, but like a said still a little creepy. I got moved up to the transplant floor in the Rhodes building that night which was where I would stay until I was discharged to go home. Knowing this was the last step was awesome, but I knew that there was still a lot of hurdles to get over. I had a working TV in my room that night which was nice to have a little entertainment as an option. They gave me this little plastic thing that they wanted me to start breathing into to make sure I was taking deep breaths and expanding my lungs all the way since I was not quite up and moving around yet. It was another long day but managed to get through it and was ready to get some rest and be ready for the first full day on the transplant floor. I never realized how much moving you around made you so tired.

First full day home

Monday morning started off pretty good. It was a great feeling to wake up in my own bed and I actually slept for about a solid 5 hours! I went down stairs and took my medicine about 6:45am and then went back up to bed and fell asleep til about 11am. I was feeling pretty good after that, I came down stairs and got setup on the couch and turned on the TV and of course started watching old recorded episodes of Duck Dynasty. My sister helped me get some lunch, small bit of salad and some chicken. I ate almost all of it, but again I do fill up pretty fast now so it's no where near what I would normally eat. Took a short nap after that and had a few friends stop by which was nice to chat with people for awhile. My boss's wife and their daughters Kori and Jordan came over shortly after my friends were here and brought over a pot of homemade chicken orzo soup and homemade bread!! mmmmmmmm delicious!! Spent some time with them and then caught up on some more TV. My friend Lyman came by and we took a walk outside, at this point I was tired of sitting in on such a beautiful day. Felt really good after the walk, and decided that I was going to walk down the street to Justin's house and hangout their until my mom came by and she could pick me up and bring me home. Hung out at Justin's for awhile, his sister Kaitlin went and got us all treats from the Custard Stand (I went with the Chocolate Shake) and waited for mama dukes to get their. She came and picked me up, I was in a lot of pain at the time, drove back to the house. I went right for my medicine and hit the couch for awhile. I watched the Red Wings game on TV, held of on pain meds so I would stay awake for the whole game, they ended up winning it in overtime so the series was now tied 2-2 which made me a happy camper. Then I crashed out for awhile, woke up at about 5:30am in some pain took some medicine watched more TV and went back to sleep.

Waking up from the OR

Well where to to start..I don't really remember actually being "woken up". I do remember being in the recovery room opening my eyes and my body feeling completely numb from about the waist down. I remember nurses asking me over and over again my name and the date...it kind of got annoying at a certain point.  I wanted to start telling them wrong answers but I knew they were just checking on me. (horrible that I want to joke after having surgery, but oh well thats me!) I remember my sister and my mom coming back first to see me, this had to be a total sign of relief for them. They both came back grabbed each one of my hands and instantly I felt the warmth of the love enter my corner of the room. Every time I tried to move they would try and stop me and ask what I needed...what good fam wouldn't. I remember feeling very dehydrated in my mouth and my eyes kind of felt crusted shut. I kept trying to open my eyes up with my fingers. I think my sister thought I was trippin' out on the drugs at this point cause for some reason I couldn't get the words out of my mouth to explain exactly what the hell I was trying to accomplish by pinching my eyes. I asked the nurse if there was any way I could just get a drink of water because my throat was so dry, she told me I wasn't aloud to drink but did give me a little sponge on a stick that I could dip in a cup and suck on the sponge. Mom helped do that for me a few times and it felt a little better but not all that much. I had a tube going down my nose and into my stomach that was hooked up to some kind of suction, so every time I got water it pulled it right out of me. They said they wanted to keep things out of my stomach for awhile because of the surgery. The nice thing I did have some control over was the pain, I did have and epidural in my back that was hooked up to a pump that I could push every so often and get a little bit of relief for a bit. I think the thing that bothered me most was just laying on my back for the long period of time, I was not used to that nor did I like it. So after a nice little visit from mom and sis they went out into the waiting room and then Justin (boss) and his wife Amie came back to see me. Again, as soon as they got to the bed the was a feeling of warmth I imagine from the feeling of importance and care that I had felt from everyone. They came back and I think I was pretty tired at this point again cause I don't remember much of the conversation. I do remember Justin helping me with getting some more sponge water and helping me with my oxygen line. The damn thing felt like it kept getting caught up in the tube around my nose. After spending a little more time with them they went back out into the waiting room. I had my aunt and uncle come back to see me and talk for a bit. Again, at this point I don't think I was to awake I don't remember much of the conversation, I do remember telling them that my shoulder hurt and I remember my Uncle telling me I was a hero when he was walking away. Then another Aunt and cousin came back to see me and were glad to see me, and I saw my cousin had a bag in her hand, I started thinking what the hell could she have in there already. She pulls out the Sports Illustrated Swimsuit edition magazine for this year, I remember grinning and laughing a little til I realized it hurt then I cut it off. I remember thinking "only Erica" would do that. They went back out into the waiting room shortly after that. I was now waiting for my room to open up in ICU. I remember the guy that came to transport me was very nice and friendly. He started asking me what I did for a living, my reply was "I'm an IT guy" his answer "oh snap, ya'll better watch what you do to this guy he will came back and get you if he wants to." Later on I was finally moved to ICU, I got my bed setup and was introduced to the new team of people that would be watching me that night. I do remember my nurse's name was Joe. Of course the female visitors I had were excited that I had a "good looking" nurse. He was awesome, was on the ball with everything and explained a lot to me even when I felt like I was asking way to many questions. Everyone came back and saw me one more time before heading home, I knew it was a long day for them all too, we did all start around 4:45am. I did have a TV in my room, which I was very excited about but of course the damn remote didn't work. I had my sister get Justin back there to see if there was anything he could do to fix it but, no dice it wasn't working. Another thing I got excited about was that they put ice chips in my water cup this time so it was actually cold, woohoo!! So after getting settled in I said my goodnights to everyone and told them I'd see them all in the morning.  That damn tube in my nose was horrible probably the reason I wasn't sleeping that much. So I started trying to figure out the best ways to get rest, after a little time I figured out the the "pain button" only worked every 15 minutes. So I came up with a system of pushing that having a few tastes of water from the sponge and then falling asleep for 15-20 minutes. I pretty much did that the whole night. I knew the next day had a lot to bring and I was looking forward to seeing everyone again. So I patiently rested why I could.