Man, what a great question, I’m so glad you asked! I have a full time job so, of course, I had to take medical leave because this shit wasn’t gonna magically heal overnight! In order for my medical leave to be approved by my employer (The University of California, Los Angeles) my doctor had to fill out a form and at the part that asked him how long my medical leave would last he put 3 months (I suggested 2 but he insisted on the standard 3). I say “standard” because, by law (FMLA) my job is protected for 3 months for any type of medical leave that needs to be taken, so I haven’t worked since February 18th and will not be going back to work until Monday May 19th. You may think that boredom would set in or that I would have some kind of yearning to get back to the daily grind of 9 to 5 work weeks, but NOPE!! Now that I have the energy and motivation to actually do stuff, I have really been enjoying my large amount of free time. Of course, the first month or so was devoted strictly to recovery—doctor’s appointments, getting used to my new medication routine, short walks to build up my strength, drinking and subsequently peeing very large quantities of fluid, re-discovering how delicious food is, and just resting. But once I was feeling back to my old self I had so many things that I wanted to do! Some of the stuff was just menial like cleaning out boxes and organizing things in my bedroom, but I also finally got to do things that I had been thinking about for a while but just never had the time or motivation to actually do. Here is a little run-down of why I’ve been enjoying my time off so much:
So, yeah, the past several weeks have been pretty awesome for me. I am beyond grateful for this gift I’ve been given which has allowed me to rediscover old passions and find new ones as well. I’m also really thankful that I have an employer (as well as wonderful coworkers and a great boss) who guaranteed that, no matter how much time I needed to recover, my job would be there waiting for me, safe and secure, when I was ready to return. I feel really lucky to have been given this new life and I can’t wait to show my coworkers the new and improved version of the same old Melissa they have come to know and love, haha! Two weeks from now my new kidney and I will be back to work and back to reality, ready to tackle whatever this crazy ass world throws our way!
I am so happy I got to see them play 2 days before my transplant, it really meant a lot to me.
Jesse and I in all of our Quineanera day glory! Those flowers weren’t mine though, I think Jesse was holding them for one of his nieces and gave them to me for the picture.
Yeah, I’m sure you’re all pretty tired of hearing me talk about my transplant by now, but guess what? I don’t care. The three days before my transplant were pretty cool and I think you all need to know about them.
On Saturday February 15th I went to my very first Quinceanera and it was awesome to say the least! Jesse’s niece was born on Valentine’s Day and she celebrated her 15th birthday the way many Mexican girls do, with the coming of age ceremony in the church followed by a reception full of family fun, food, and dancing. There was even a photo booth with props which was really cool because each guest got to take home their own little personal souvenir. This day was a pretty big deal for Jesse as well as his niece chose him to be her Padrino which meant he had a special role to play in the ceremony and he had to give a speech at the reception (which, by the way, he did amazing at). It was really special for me to be invited to such a big day in the life of the Alvarez Family as well, so I wanted to make sure I looked as good as I possibly could. Not only did I buy and learn how to apply makeup (which, beyond mascara and a bit of eye shadow, I never wear), I went out and got a pedicure AND manicure (my very first one) AND HAD MY HAIR STYLED BY A PROFESSIONAL AT AN ACTUAL SALON, which you should gather from the all caps appearance of that phrase was a huge deal for me. The only other time that has happened was almost 10 years ago for prom and I was very unhappy with the outcome. This time, though, was a different story as the girl who did my hair was super cool and did a great job, I’m actually looking forward to going back to her to get my hair cut very soon. Anyhow, the Quinceanera was so much fun! I got to spend quality time with Jesse and his family and it was really nostalgic watching all the teenagers act silly and make lasting memories, it really took me back to my high school days with Jesse and made me smile. Plus, there was food, candy, cake, and alcohol, what more could you ask for on the Saturday night before your life changes forever?!
Now, Sunday February 16th was a different kind of good time. I spent the morning resting up after eating some leftover carnitas from my family’s favorite local Mexican joint, Raul’s for breakfast. I needed to build my strength up for the night ahead of us, but first I wanted to bake something so I made these amazingly delicious lemon cheesecake bars. I also coincidentally watched the movie Steel Magnolias which was probably not the best thing to do 2 days before my transplant. Anyway, after the baking and the eating and the movie came the main event: seeing one of my favorite bands, Chicago’s own The Lawrence Arms, play at the El Rey on Wilshire Blvd.!!!! I had been looking forward to this for quite some time and the night certainly didn’t disappoint. Jesse and I started the night off right by getting drunk off vodka and whiskey before any band even stepped foot on stage. I even asked my surgeon if it was OK for me to drink the weekend before my surgery because I didn’t want to screw anything up for the big day and luckily he said it was fine, so I drank alcohol for the last time (won’t be drinking for at least a year or maybe more since I have to take INH to prevent recurrence of Tuberculosis I had in 2006. And that’s fine with me as I rarely drink anyway). The show was great and afterwards Jesse and I stumbled on over to Canter’s which is just a few blocks away to enjoy some sweet potato fries and try to sober up a bit. But we were so exhausted, we couldn’t wait to leave. So, we packed up the leftover food, hurried home, and fell fast asleep.
Thankfully, Monday February 17th was a holiday (President’s Day, I think) so I didn’t have to go to work after the crazy night we had. When I woke up I had a raging stomach ache (alcohol tends do have that effect on me) and a serious craving for doughnuts (this craving had actually been around for about a month at this point) so I called up Jesse and he was kind enough to finally help me fulfill my breakfast wishes. He even convinced me to get a dozen doughnuts, which was a great idea because only about one and half actually got eaten, but my mom froze the rest. When I got out of the hospital she just cooked them a bit in the oven and they were good as new! After we got the doughnuts we took a little walk at the Del Amo Mall for no particular reason, really, other than to just get out of the house. We ended up getting hungry (Jesse more so than me) so Jesse got some Panda Express and I just got a tiny Cesar Salad and piece of garlic bread from Sbarro. We went home after that and I took a shower, did a few chores, ate some soup for dinner, and hooked myself up for what would be my VERY LAST dialysis treatment. I went to sleep that night in anticipation of what the following day would bring.
My brother and me. He stopped by my room on his way home (he got to leave the day after his surgery, I got to leave after 5 days in the hospital). Thanks again big bro!! Notice my awesome Dodgers blanket. I got it as a giveaway at a game probably about 10 years ago (maybe more). I’ve been taking it with me to all of my post transplant clinic appointments as well. Always gotta be representing for my Boys in Blue!
This is the wound today looking much smaller and way more healed. I’m wondering how many followers I’m going to lose over these photos haha!
This is the wound that has been very slowly healing on my incision site. This was taken on 3/29. I have no idea how this ended up happening but it’s pretty disgusting. If you have anything on your body that looks even remotely similar to this you should see a doctor ASAP.
My hair is really long and thin and fine, so it tends to knot very easily. I asked my mom to braid my hair because it really helps keep it a lot less messy when your laying in bed pretty much all day. I know this all too well as this is exactly what we did when I was in the hospital for 3 weeks in 2006.
I couldn’t see my belly after the surgery because the way the central line was taped to me I couldn’t really move my neck, so I asked my mom to take a picture of it. Incision is on the viewer’s left while the middle is where they removed my PD catheter and the right is just a hole left from the old PD exit site.
That was pretty cool, huh? But I gotta be honest and say that shit was way harder than I expected, haha!! I don’t know exactly what I expected, to be honest with you. I mean, I know I’ve already had 2 of these things but considering I was only 4 when the first one took place, I have no memory of it. My memory of the one that took place when I was 11 is also pretty blurry, but the one thing I do remember vividly is that when someone asked me immediately after surgery how bad my pain was on a scale of 1 to 10 I said 3 because I was actually surprised that I wasn’t in more pain (crazy to consider that thought coming from my 11 year old brain). But this time, NO WAY!! When I woke up the first thing I noticed was how bad the pain was, not the worst I’ve ever felt, but still a 7 which is not exactly ideal. But the weirdest part of post op was that the nurses were having this conversation, basically one of the nurses was describing that she was also suffering from kidney failure and was on hemo dialysis and I was thinking to myself “Really, what a coincidence!” and I wanted to say something but I was pretty out of it still. Also, I’m not sure if this conversation was real or not because, I don’t know about you, but when I’m coming back to after being under anesthesia for a long period of time I’m not sure if the things taking place are real or just a figment of my drug induced state. Anyhow, after I was wheeled over to my hospital room and visited with my family and my boyfriend for a bit (thankfully my mom spent the night), I thought the Dilaudid PCA pump would knock me out for a great night’s sleep (since that is exactly what it did for the entire day after my exploratory laparotomy in 2006), but I had no such luck! I barely slept at all (neither did my mom). That probably also had something to do with the fact that the nurse was coming in every hour to give me more IV fluid (to make sure the new kidney will keep working properly). I produced about 10 liters of urine in that first night alone! When they finally took my catheter out I was peeing so much, I couldn’t believe it (I was getting up like every 30 minutes or something)! I mean, I still produced urine while on dialysis but it was only around 500 ml per day (not much at all), but now I can produce that much in one trip to the bathroom, haha!
Urine production was never a problem during (or after) my hospital stay but, surprisingly, my leg was. You see, the incision site was positioned in the exact same place as my first transplant scar, so when my surgeon cut through everything he couldn’t tell if he was cutting through nerves because there was so much scar tissue built up over the last 23 years. They had to take the old kidney out (my mom’s from my first transplant) and the surgeon said that it was just a little ball of scar tissue (I asked what it looked like because I actually wanted to keep it and take it home with me, but pathology wouldn’t let that happen). Anyway, back to the point about my leg. When I started to get out of bed and walk around the day after surgery I felt a sudden, sharp, burning pain in my thigh. It was so bad that I screamed out in pain. It wasn’t constant, but when it did happen it was severe. This, along with a fair amount of numbness on the skin of my right thigh, belly, and groin, was the result of nerve damage from the surgery. This intermittent nerve pain put a real damper on my recovery at home as I could barely walk without it flaring up. Showering was such a pain in the ass, I basically had only one leg to stand on, not to mention that all the muscles on my torso were still healing so I couldn’t really bend over or hold myself up. So, to help with my recovery, my mom and I started taking a few daily walks. The first few weeks were pretty difficult, I could only walk about 5 houses which is not far at all. But after a while the pain gradually subsided and now I try to walk at least 2 miles a day, on Monday I even walked 5 miles!!! That wasn’t quite the plan, but that is how it worked out and I’m so glad that I can now walk 5 miles without my body feeling totally destroyed afterwards.
As for the medication, my docs went with a Prednisone/Prograf/Cellcept combo. When I left the hospital I started off on 20mg of Prednisone. I always hear people saying how terrible it is, but even at this high dose (which I know isn’t actually that high) I didn’t really have any issues aside from not being able to sleep on one occasion. I think my body has a high tolerance because I’ve been on varying doses of Prednisone for pretty much my whole life. Just last week they finally lowered it to 5mg which is what I was on for many years before my transplant so it’s really just going back to normal for me. The Prograf started off at 5mg twice daily and right away my levels were too high so at my first clinic visit post transplant they lowered it to 4mg BID. I’ve been at 3mg in the AM and 2mg in the PM for about a month now and the Prograf levels are stable so I’m pretty sure that is what I’ll be on permanently. As for the Cellcept, I’m on 1,000mg twice a day which I was very concerned about in the beginning due to the fact that Cellcept has always given me the most wretchedly painful stomach aches. But thankfully, that is not the case at all this time. I actually haven’t had any stomach problems at all from the Cellcept! Things are going great with my meds. I have to admit that I wasn’t happy when they told me that I would have to take my meds around 8:00AM (and 8:00PM because the meds work best when taken roughly 12 hours apart) since I am a notoriously late sleeper, sometimes not even getting up until well after noon. But now that I am actually healthy I find that getting up early is great, you have so much more time to get things done!
The one thing that has been the most worrisome post transplant is that I developed a bit of an infection or sore on my incision site. This was really scary to me because, even with all the surgeries I’ve had in my life, I’ve never had an infected incision, plus it just looked super gross. I have no idea how it happened but one day about 2 weeks post transplant I noticed that one of my steri-strips was peeling off a bit, so I took a peek underneath it and noticed that the scab was looking a little gooey, but I didn’t think too much of it, just told myself to keep an eye on it and mention it to my doctor at the next appointment. When I did mention it to him, he wasn’t concerned at all and also just told me to keep an eye on it. But it just got worse! it turned into a dime size crater of grossness and it even smelled (ewwww!!!). The weirdest part was that it didn’t hurt, there was no redness, and no fever, so I’m still not completely sure if it was an infection or not (even though they swabbed it and sent the sample to the lab, my doctor said that skin is filled with bacteria anyway, so the results didn’t really mean much). My doctor just had one of the nurses clean the wound up really good and put a dressing on it, a routine which I have been repeating daily ever since. It was taking quite a long time to heal so just last week when one of the other doctors saw me she decided to prescribe an antibiotic and the wound has actually gotten a lot better since then. But I think its still got a few weeks until it is completely healed. WARNING: I’M GOING TO POST PICTURES OF THE WOUND. IT’S GOING TO BE DISGUSTING. YOU’VE BEEN WARNED.
All in all, things have been going pretty great (creatinine was 0.8 on Tuesday) and I’m so thankful that someone was kind enough to give me this opportunity to have a vibrant, healthy life. I want to do everything I can to make sure this kidney lasts as long as possible. I have this new lust for life. I want to do Pilates and yoga and cardio barre and take surfing lessons and learn how to paddleboard and go on walks and hikes. I want to travel and see America and the world and go to gallery openings and botanical gardens. I want to learn and create and experience new things. I never want to be tethered to a machine ever again. I will NEVER take this gift for granted and I’m sure that the unknown person walking around Pennsylvania with my brother’s kidney feels the same way. I feel so lucky and so good and I can’t wait to experience the full beauty of life untethered.
Yeah, it’s kind of a big deal! It was from a total stranger that I may never meet as part of a swap that involved my brother’s kidney going to a recipient all the way in Pennsylvania! This swap chain is actually kind of large and extends several patients and will keep going into March. My brother had his surgery on Wednesday February 19th and left the hospital yesterday, but of course, I’m still here. Things are going great though and I should be out by tomorrow. I will let you all know details once I have more energy. I’ve been doing a lot today (2 patient education classes, walking, washing up, and getting my urinary catheter out and subsequently getting up to urinate several times since then). Thank you all in advance for your support and I hope your kidney journey is taking a similarly easy route as mine has!