Transplant and Recovery

March 14, 2018 | By Terry | Filed in: Default.

Hello friends and family, now that the dust has settled from my transplant and I’m firmly entrenched in healing/recovery mode, I thought it was high time to share my experiences with you.  I have kept you up to date with Facebook posts here and there, but I thought I’d lay out a timeline here with my take on each segment.  This is a LOOOONG post, sorry about that, I should have started this several days ago.  Future updates won’t be this long.

Thursday, March 1

The night before surgery! My mom and sister come up to spend the night with me and take me to hospital in the morning. We had a nice spaghetti/meatballs dinner, I packed my hospital bag, and we all went to bed at a decent hour.  I have to be at hospital at 5:30am.

Friday, March 2

Surgery day! I wake up at 4:00am. I was pretty hungry but I wasn’t allowed to eat or drink anything after midnight that night, so I just ignored the amazing smell of Mom’s coffee, took a shower, collected my things and we walked out the door at 5:00am.  We got to hospital and found they were short staffed at registration, so we didn’t get checked in until almost 6:00. We then went downstairs to surgery check-in, we were there for about 20 mins before Dennis was called by his nurse, and shortly after I was called by mine.  My mom and sister were allowed to go to the pre-surgery prep room, that was nice. They were with me until they took me to the operating room, which was at about 9:30am.   We were in this pre-surgery room for a couple of hours. A whole slew of doctors, nurses, surgeons, anesthesiologists, you name it, they were there.   Dennis was stationed in the room next to me, he popped over to chat, do our high-fives and exchange well wishes.  Here we are before surgery:

Dennis and I before surgery – 3/2/2018

I’m not sure exactly what time they pulled Dennis away (he obviously had to go first). I believe it was around 8:45 or so.  We waited around until about 9:30, when my Mom and Sister and I exchanged our goodbyes, I love you’s, and good lucks…. and just like that, they were rolling me down the hall. Operating Room here I come!

They had me get out of the rolling bed and walk into the operating room. The surgery nurses and anesthesiologists were waiting on me. I laid down (on my back) on the operating table, I remember seeing these giant round metal saucer-like light fixtures above me – I remember thinking “this must be what it’s like to be abducted by aliens” haha.  Honestly that’s the last thing I remember. I don’t remember laying there more than 2 or 3 minutes before they had me knocked out.  Next thing I know, I wake up in recovery. I was relieved to know exactly where I was at, and what had just happened to me, and I immediately looked at the clock to see what time it was: 1:30pm.  Wow… that 4 hours seemed like 1 minute in my world.  I did a check of my body, I could wiggle my toes, fingers, and didn’t feel any pain at all. “I must be on good drugs” I thought.   I wasn’t in recovery very long, maybe 30 mins… but to this day (12 days later) I honestly can’t remember being in recovery except when I looked at the clock.   I do remember being wheeled to my normal hospital room, which was in the Transplant wing of the hospital.

My room, at first impression, was pretty small. I didn’t see a TV in there. There were no chairs for guests to sit on.  I assumed it was another “holding” room of sorts.  One of my doctors came in, I asked him, how long will I be in here?  He jokingly said – “why, do you need to be somewhere?” haha… I laughed and said “well you know I was hoping to catch a movie this afternoon” lol.  I then said “No, I meant, how long will I be in this room?”  He then said – until you are discharged!  Ahhh… I thought. So this is my permanent room.  With no TV… good thing I brought my Kindle to watch movies on.

Before I knew it my Mom, sister, and Dad walked in (Dad showed up mid morning while I was in surgery). It was so great to see them.  They told me the hospital staff kept them up to date through the whole process.  When Dennis’s kidney was pulled, when it was put into me, and other steps along the way.  I bet they felt very reassured to know this timeline as it was happening.

Back to my room… my sister opened these cabinet doors and voila! There was a TV … I guess this is a real hospital room after all 🙂  My family stayed several hours, then took off late afternoon/early evening.  They all stayed at my place that night (I live about a mile from the hospital), and came back the next morning for a few hours.

That night, when I was alone to collect my thoughts and survey my body and all the things they attached to me – I realized I had a catheter inserted (yep… inserted into THERE)… and into my urinary bladder.  The other end of the catheter attached to a container on the floor. I could look over and see it constantly dripping.  So yes, I was urinating 24/7, non stop… it was a pretty weird feeling. I could feel myself peeing like non stop… in reality it was just drops at a time, but it felt like a solid stream haha.  I also looked at my incision for the first time.  This thing was MUCH bigger than I thought it would be.  It’s about a foot long – going from under my belly button, across my right mid-section, and almost to my side.  It’s a HUGE wound! I was like wow – this is gonna take awhile to heal.

The first night I didn’t get much sleep. The nurses came in to take my vital signs every hour, all night long.  I took a series of 30 minute naps, basically.  But I finally made it through the night.

Saturday, March 3

They woke me up at 4:00am for vital signs and blood draw for labs (they drew my lab blood very early every morning, so they could have results by 7am, when doctors started making rounds), however this time they wanted me to get out of bed and step on a scale. I honestly could not use my stomach for anything. That incision had cut through my ab muscles, and it was pretty much impossible for me to use my abs to sit up. So I had to hoist myself up with my arms using the bed rails, and some creative pushing off the bed with me feet. The first time I stood up is when I realized just how handicapped I was. It took 2 nurses to help pull me up (they had this belt around my chest which they used to help lift me up).  Once I was up I felt ok. Then getting back into bed was just as adventurous – but I finally made it.

Later that morning I asked if I could have water and/or food… they told me no food for a few days… I was like… uhh… what??  They also said the only water I could have was via a small sponge at the end of a swab.  I could dip it into a cup of water to wet my mouth once in awhile.  So I did this for almost 3 days. Yes, I didn’t eat ANYTHING for almost 3 days after surgery.  It’s crazy though that I never really felt hungry during those days.  I believe the IV drip they had me on gave me the nutrients I needed.  My stomach would growl occasionally but I never really felt hungry for some reason.

I had to get out of bed again today, this time to take a small walk with a nurse. We walked just down the hall and back, with my pee container in tow, haha.  We took another walk later, this time we walked down to Dennis’ room.  We talked for a few minutes – little did I know he would be checking out in just a few hours!  Can you believe that? They pulled an organ out of his body and he’s going home the very next day. The nurses told me he set a hospital record. Wow.

At some point in this day, Dennis came to my room to visit as well, and someone snapped this picure:

Dennis visiting my room the day after surgery. 3/3/2018

Another fun thing happened today.  Dennis received a call at the hospital from a local TV station writer, FOX 59.  He had gotten wind of our story, and wanted to do a write-up on us to put on their website.  Dennis was game, he texted me to ask if I was ok with it, I was like sure!  Later that afternoon, the reporter called me, we talked for about 10 minutes.  Later that evening, this showed up on Fox 59’s website.  How cool is this?

Indianapolis man receives life-saving kidney from cousin: ‘We’re brothers now’

The writer got a lot of the timelines way off, but that’s probably my fault, I may have told him things out of order. Regardless, everything in the article happened, just not when he said they did. No big deal – it’s a very cool article to raise awareness on kidney donation!

Sunday-Monday, March 4-5

These days were kind of a blur… my family had left, and I was alone for a few days. I still had my catheter in, which was becoming uncomfortable. I started having random “bladder spasms” which were extremely painful. It’s like a rush of pressure/pain would erupt in my bladder, like it was going to explode. It felt like I was trying to urinate but it was blocked. This wasn’t the case, but it’s what it felt like.  These “attacks” would last for about 10 seconds then go away. I told the nurse and they eventually gave me a medication that relaxed my bladder a bit, and that helped a lot.  I still had a few here and there but they only lasted a few seconds.

I’m still not eating any real food yet –  but I believe they started feeding me liquid foods (broths and jello) sometime on Monday. I still hadn’t had a bowel movement, so they gave me something to help with that.

It’s getting a little easier to get out of bed on my own at this point, and I’m able to walk down the hall easier – in fact we’d take 6 or 7 minute walks a few times per day.  I’m starting to feel a little progress.

Here is where I want to talk about my daily labs and results.  To determine kidney function level, they check for a substance in your blood called “creatinine”.  It’s basically waste product that your muscles release to your bloodstream. Healthy kidneys filter most of this substance out, while lesser working kidneys leave some in your bloodstream.  A normal creatinine level in a normal healthy set of kidneys is 0.5 – 1.5.   Right after surgery, my number was 6.5 … pretty high, but I’d always had a number that high.   In the last few days up until now (Monday the 5th), my creatinine had dropped into the mid 2’s.

Tuesday, March 6

I believe this is the day they released me to solid food.  I could order anything I wanted off the hospital menu. They had a wide range of food – ranging from burgers and pizza to healthier options like roast turkey and vegetables.  I opted for the healthy options (omelet for breakfast, turkey and veggies for lunch, and something similar for dinner).  It felt good to be eating again, and I was starting to have regular bowel movements.  My doctors/nurses were happy, and so was I.  My catheter was also pulled today (that hurt like HELL!) – and they took away my IV drip.  From here on out, I had to get up to use the bathroom myself, and I also had to start guzzling water… like all day and night. I’d drink a gallon a day, and still am on that routine to this day.

Why do I need to drink so much water? It was explained to me by a nurse. She said that your brain keeps tabs on all your normal organs, knows how to keep them busy when needed, and when to let them rest when needed. My new kidney, however, isn’t really part of me. It’s just sitting there attached to a couple big veins, my brain has zero idea that it’s there. So, it can’t help control it. That’s why I have to keep drinking so much water – to keep it from drying out or becoming dehydrated. If it dries out (i.e. not much water in my blood for it to filter out into urine), it makes it weaker. So I have to force-feed it water. This keeps it healthy and very busy 24/7, which makes it stronger. That’s why I have to drink water in middle of night too. So it doesn’t dry out. Pretty amazing huh? I believe this is a habit I’ll have to have for a very long time, maybe forever – I’ll have to ask about this down the road. I have no problems waking up to drink – I’m averaging 4 bathroom trips each night so far 😮

I also started my physical therapy today. There’s a small gym down the hall, which had personal trainers available form 2:00-3:30 every day. This was my favorite part of the day for the rest of this week. I was doing very simple, easy exercises (step ups, squats, very light dumbbell weights (like 5 lb weights), and walking on a treadmill for 12 mins.  It felt soooo good to move around and get my heart pumping a little. It sure beat laying in bed.  I bet you’d never been to a gym wearing nothing but a hospital gown and socks? lol. Trust me, I felt no shame.

My creatinine dropped a little again today, which put me down to 2.2, my best reading yet.

Wednesday, March 7

Today my labs didn’t look so good. My creatinine increased – from 2.2 up to 2.5.  My doctors were concerned about this, but they opted to just observe another day to see what it does. They said it could be rejection starting to happen, or it could be my kidney disease (FSGS) spreading to the new on.  That wasn’t a very happy thought to have, but I had to sit on that till the next morning when we got new labs.

Thursday, March 8

My creatinine increased again today… this time it got up to almost 2.7.  This is not good – my doctors weren’t freaking out (they have ways to help fix this), but they decided to schedule a biopsy for me for the next day (Friday).  They said if it increased again, they’d biopsy the kidney to see what’s wrong.  If it went back down, they’d cancel the biopsy and just observe more.

Friday, March 9

I woke up bright and early, they drew my labs at 5:30am today – so as you can imagine, I was praying for a drop in creatinine level.  I somehow was able to fall back asleep, and woke up around 7:30 when the nurse practitioner walked in.  He said “have they told you your lab results yet?” I said no… he said… “you dropped down to 2.2! We’ve cancelled your biopsy”.   Wow. I was sooooo relieved! Talk about good news. So I felt really good that morning, especially when my surgeon came in around 10am… he told me it was great news, and that it’s not rejection otherwise it wouldn’t have improved so much in 1 day.  He said no biopsy is needed, we’ll just keep an eye on it, and then he said “So do you want to go home today?”  Oh my… Yes Yes Yes!!!

My mom had already planned coming back to Indy today, so what good timing. She arrived about 10:30 or so that morning, sat through several training/info sessions from my coordinator, pharmacist, and other things that had to be done before I could leave.

One of the most shocking things I saw that day was when the nurse removed my central line.  A central line is inserted into your lower neck, which they use for drawing blood, giving me injected medicines, etc.  The nurse pulled it out, (my head was turned so I couldn’t see it).  She said, “do you want to see it?” I was like.. NO!  haha… Mom looked at it and kind of gasped… I was like… “ok, I want to see it now”.  Holy crap… this thing was about 4-5 inches long! They weren’t lying when they said it injects things directly into your heart. This thing entered my lower neck, and stretched all the way down to right next to my heart in a giant vein leading into it.   I about freaked when I saw that thing, it looked like they pulled a small alien out of my body.

BUT – I was going home! That was the last step before I left.  Mom went to round up the car, a nurse wheeled me out to the pickup area, where mom snapped the left side of this pic.  We took the other half after we got to my place and I put on my awesome T-shirt my sister Krissy had made for me for Christmas 🙂

Left: Leaving hospital… Right: HOME!

Saturday – Wednesday, March 10-14 

My mom stayed with me a couple of nights.  She was great in taking care of me, although I tried to do a lot myself too, that’s just me, wanting to be productive.  She made some delicious biscuits and gravy Saturday morning, Oh my gosh that’s the best thing I’d eaten in weeks!

I had to go to the hospital on Sunday morning for labs.  Mom dropped me off then headed back to her home in North Vernon. (I UBER’d home from hospital).  Later in the morning I got my lab results – My creatinine dropped again, this time down to 2.1 … it’s such a reassuring feeling to see it drop 2 days in a row!

On Tuesday I had my first post surgery clinic.  I’ll be doing these clinics twice per week for the first month after surgery, then it will go down to once per week… then eventually less than that.  I got my labs done on Tuesday at 7:00am, then the drill is to wait around the hospital until 10:00 (they have to have time to process the labs).  I went to my 10:00 appointment, met with a doctor to find that my creatinine had dropped again! This time down to 2.0.   Such great news!

My doctor told me on release day that he wanted me to be between 1.6 and 1.8.  So now that I’m sitting at 2.0, I’m very close!   My next clinic is this coming Friday – so I’m crossing fingers that it keeps dropping.

Here in a week or two I’ll do another blog update to let you all know how my numbers are looking. In the meantime, the doc told me keep doing what I’m doing.  Which is, drinking a gallon of water per day, doing light exercise, and take my medications as prescribed.  No problem sir! 🙂

Terry

(3/14/2018)


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