April 21 Update

Hello friends and family. It’s been about 3 weeks since my last blog update, so I figured it’s time to give an update to you all whom I haven’t spoken personally with.  The last several weeks I’ve been on my normal twice-per-week clinic schedule at the hospital. I show up at 7am for blood and urine draw, then I wait around until 10:00 for my Dr. appointment to go over lab results.

If you’ve been reading my blog since surgery,  you’ll know that the most important lab result is the creatinine level in blood.  Creatinine is a protein that’s released by your muscles.  Healthy kidneys filter most of this out of your system and into your urine. Unhealthy kidneys leave some of this creatinine in your bloodstream.   Don’t be confused – creatinine isn’t a dangerous toxic thing – it’s just a very convenient way to measure your kidney function.  The lower your creatinine level, the healthier your kidneys are.   Anyway, a healthy kidney’s creatinine reading is 0.6 to 1.2 mg/dl.  (This is basically a measurement).  A transplanted kidney ideally should be around 1.5.

The lowest I got to was 1.6 – that was about 3 weeks ago. Since then it has risen to the 1.8 range, and that’s where it’s at now.  It’s been consistently 1.8 for the past couple of weeks, so that’s looking like my baseline number for right now.  This could improve (or regress) in the future, but for now it’s a decent number and it’s good that I’m below the 2.0 threshold.  For the first month or so after surgery I was in the mid 2’s – that prompted a biopsy to see what was wrong. After they did find some rejection going on, I went on a 10 day treatment to stop the rejection.  That is when my level dropped to 1.6. In the past 3 or 4 weeks I’ve slightly risen to 1.8 – and have been hanging right there for a couple of weeks now.  My immunosuppressant medication dosage does affect my creatinine level – if it’s too high it makes creatinine go higher.  They’ve been lowering my dosage and things seem to have leveled out.

Anyway, that’s the tedious numbers game – now I’ll get to how my actual life is going. Good news is, I started back to work this past week! It was great to get back in the office and use my brain again. Initially I was concerned I would be worn out during the day – because in the 6 weeks after surgery that I was off work, I wasn’t sleeping very well at night, and was taking frequent naps during the day.  As it turns out, I’ve been sleeping great this past week since I’ve started work!  I’ve felt great at work during the day, and sleeping great at night.  I’ve been getting 7-9 hours each night, which is unheard of since surgery. It’s almost as if I have my normal life back.  That’s a good sign!

One side effect, my transplanted kidney area has been slightly sore this week. I let my doctor know about it, he said to just take it easy and not overdo it. He’s not concerned about infection or any other issues as my numbers look fine.  I’m assuming that the slight discomfort is from actually moving around more, which is a good thing for getting stronger in recovery.  I’m not doing any heavy lifting or anything strenuous, I’m just up and walking around more, driving more, etc… it’s not too strenuous but it’s a lot different than sitting on a recliner all day.  So hopefully this new normal routine of working will make me stronger.

I’m to the point now where I need to plan my Spring and Summer of further recovery and getting stronger. Since I’ve been home from hospital in the past 3 or 4 weeks, I’ve been doing 30 minutes of exercise each day. Now, when I say exercise, I basically mean “moving around” haha. I’m still not allowed to lift any more than 10 lbs, so real weightlifting is out of the question. I do have small 10 lb dumbbells that I use though.  I do the normal dumbbell exercises, but will do like 20 reps with the low weight. It’s better than nothing – but does keep me moving.  I also either walk or ride my spin bike every day.  I do a brisk 30 minute walk now that it’s finally starting to warm up a little (what a crappy COLD Spring we’ve had so far!) … or if it’s too cold out I’ll ride my spin bike in the living room.  I don’t do any heavy sprints or high resistance or anything, just basic pedaling with little resistance – but still it’s exercise – which counts for something in recovery.   Anyway I plan on upping my intensity and frequency little by little as time goes on this Spring, and by summer I’m hoping to be able to start jogging and riding my bike outside. (I’m afraid to ride a real bike outside right now – all the bumps in the road may be a little too rough on my kidney area right now). We’ll see how that progression goes.

All in all I’m pretty satisfied with how things are going. I’ve had a few hiccups along the way, but nothing that couldn’t be handled. I’m determined to continue with my next steps of recovery, and taking care of myself as best I can along the way. Thank you for reading and caring!

Terry
(April 21, 2018)

 

March 30 update

Hello friends and family! I thought I’d drop a few lines today with latest updates. My last post outlined my return to the hospital, and the start of my 10 day inpatient/outpatient Thymo treatments. This is an immunosuppressant induction drug that helps stop the kidney rejection I was starting to experience a few weeks ago.

After 10 consecutive days of Thymo treatment, I can say that it did work and my Doctor is very happy with results. Today my labs showed the lowest creatinine number I’ve had yet, at 1.63. This is very close to my original goal, so I’m happy with it.

One issue I am having is a low phosphorus level in my body. Today they are giving me a 3 hour IV drip of phosphorus supplement. I’m also already taking pill form supplements. Plus my doctor jokingly told me to eat a lot of cheese, pizza, ice cream, etc … well he actually wasn’t kidding, but I’ll find a way to add phosphorus to my diet without being extremely reckless. But it’s good to know I’m allowed to bend to comfort food once I awhile haha.

It’s looking like all these impromptu treatment plans are winding down, and I’m about to get to my normal bi-weekly lab cycle, using my normal daily medications. I’m interested in seeing how my creatinine level reacts – the doc says it should stay status quo from here on out.

The next few weeks will tell a lot in that regard, so stay tuned I’ll give another update then. Hopefully I can return to work once things are set in a groove in a few weeks. I’m still moving around a little gingerly but I’m feeling better every day.

Terry (3/30/18)

Back in hospital (updated 3/20/2018)

Hello friends and family, I had a great week at home – my Mom was there most of the week, she was great. Thank you for running yourself ragged for me Mom 🙂

On Friday I went in for my normal bi-weekly labs, and they decided to go ahead and biopsy the new kidney that morning. My creatinine had stalled in the low 2’s again – it did go up a little bit (from 2.0 to 2.19). It was time to dig into it and see why it keeps stalling and going up and down, instead of getting down in the 1’s where it’s supposed to be. (As a point of reference, you can see this kidney isn’t failing.. it’s just showing signs of rejection. 2.0 isn’t a terrible reading, it’s just not normal. They want to fix it before it gets bad. With my old kidneys my creatine was way high.. like 6’s, 7’s, etc). Anyway, the biopsy was quick, easy and not much pain at all. Just a few jittery flinches from my nerves hahah.

We were at the transplant outpatient area all day Friday, they still didn’t have biopsy results at 6pm so they sent us home. I got a call around 2pm on Saturday, they wanted me back at the hospital to check in as inpatient that night. I checked in about 5pm Saturday.

The biopsy did find some rejection going on in the kidney, but apparently nothing they can’t handle here. They gave me a heavy steroid dose Saturday night, my labs on Sunday morning had my creatinine back down to 2.0. They weren’t finished yet though. After going through a few treatments to lower my potassium level (it was high today) they started a 12 hour drip of what they call Thymoglobulin, or “Thymo”, it’s a high powered immunosuppressant drug that sends my immune system in a frenzy. To combat side effects they gave me Tylenol, injected Benadryl, and a few other things to help.

At time if this writing (6:30pm Sunday), I don’t feel any ill effects, but I do have 8 hours to go. This Thymo drug will stop my immune system from rejecting the kidney, I may have to do a few treatments of this, I’m not sure – but I know it’s not permanent. They said once they get my immune system in order with this, my normal drugs I’d been taking at home (plus maybe another, I think) should keep it at that baseline.

I don’t know how long I’ll be here this time – probably until my numbers are really good and steady. They sent me home last week because my creatinine was trending downward and they could monitor me at my biweekly clinic visits.

Anyway I’ll be interested to see my new creatinine level in the morning. They draw blood for labs at 4 or 5 am, I get results around 7. I’ll add to this blog post as I get updates in coming days.

So in the meantime I’ve been laying in bed soaking up March Madness. How about all these upsets huh?

Terry (3/18/2018)

UPDATE: (3/19/2018)

Well my new creatinine number came in, and for the first time ever I’m below 2! It’s now at 1.95. My ideal number is around 1.5.

My doctor is very pleased with the treatment results, and wants to repeat them for another day or two. He said my body is responding well to it, and my number should be down to 1.5 in a day or two, when he’ll let me go home. I’ll then continue treatments on an outpatient basis while they wean me off the steroids / Thymo that I mentioned in the original post above.

Once I’m down to the 1.5 creatinine number, my normal daily immuno drugs will keep me there.

This is great news – it appears that my new kidney is going to be A-OK. We have to see it there first but the doc is very confident it’ll happen.

UPDATE (3/20/2018)

Looks like they are sending me home later today 🙂 my creatinine didn’t drop much (1.95 to 1.93) but it did drop. I’m doing another Thymo treatment this morning.

I’ll have to come in here pretty much every day for at least the next week for daily treatments of it. (4 hour drips). I live very close to hospital so it’s not a big deal for me. He said since I was late to the game on these treatments it may take awhile to get me down to 1.5. Also, no sign of FSGS in new kidney, so that’s not spreading from the old ones.

All in all I’m happy, feeling great, things are heading in the right direction. It’ll be nice to be at home at night again.

Terry

Transplant and Recovery

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)

Friday, March 2

If you’d have told me on New Year’s Day that I’d be having my transplant on March 2nd, I’d laughed and called you crazy.  January 5th was just a few days away, we were finally going to do this!

On January 3rd I started feeling a little twinge in my throat… that night I was starting to feel a little congested.  On January 4, I had a noticeable raspy breath, and had to cough once in awhile.  During my pre-op phone call with a nurse that morning, she noticed my symptoms.  By 2:00 that afternoon, it was official – surgery had been postponed.  Can you believe it? After a 2 year wait, we were just 17 hours away. I was told to come back without my cold on January 23 to reschedule.

That day was yesterday – it took a few weeks, but I’m 100% fine now, no signs of a cold. My weight was perfect, vital signs, all good to go for surgery again.  I was approved again! I left the Dr. office excited for surgery, hopefully in the next week or two.

I got the word today (from Dennis – he has spoken to his coordinator, I haven’t heard from mine yet) – that the soonest they could get us in is Friday, March 2.  Dennis inquired on the reasons for that, he was told something about February being the worst month for transplant scheduling.  Kidney transplants are only done on Wednesday and Friday each week, and our different surgeons couldn’t be in the same place until March 2 for various reasons.

So, like it or not, Friday March 2nd is the date.  That’s a little over 5 weeks from now.

In the meantime, I’m going to see about getting this catheter removed from my belly. I’ve been carrying this thing around taped to my stomach for 2.5 years now – and haven’t been using it for the past 3 months. I was first going to have it removed either during surgery (if possible – that was going to be a game time decision per the surgeon) – or wait till after surgery.  Now that I have 5 weeks to kill, I’m going to see about getting permission to get it removed in the interim.

So, after 2.5 years of waiting.. delays… more  waiting….. more delays… another 5 week wait begins.

Terry
January 24, 2018

It’s almost go time

Hello friends and family, it’s been about a month since my last official update, so I figure now is a good time for a final note before surgery, which is almost here. That’s right, it all goes down this coming Friday, January 5. Can you believe it?

Dennis and I are to show up very early that day, like 5am or so… Surgery is set for 7:30am. We’re both excited to get this over with, it’s been a long journey for both of us.

In the meantime, here’s how my last week will go down. I have two more dialysis treatments (Tues and Thurs). Dennis and I both go in on Wednesday for our final labs. Basically a final check to make sure we’re still good to go. That’s basically a formality, as they’ve already confirmed everything they need to.

My Mom and sister are coming up Thursday night, and taking me to the hospital on Friday. I live about 1 mile from the hospital, so it’ll be a quick trip that morning. My Dad is also coming up that morning.

Dennis will be able to go home after a couple nights. After that, he should be back up and running in no time. I’ll be in hospital for 4 or 5 days, depending on how things go. They want to monitor me very closely to make sure the kidney is working and such.  After i get home I’ll be taking things slow for awhile, and will have to go to clinic to be tested each week.  I have short term disability leave from work, so there’s no set timetable to get me back to work. I’m thinking 3 or 4 weeks? We’ll see. Thankfully my company pays me 100% while I’m out – I’m very thankful for that.

People have asked me about visitation in the hospital. Honestly, that hasn’t been made clear to me yet. I do know that the first day or two, I don’t think I can have any visitors at all, not even my parents. I’ll be very susceptible to infections for a bit, so they are keeping me under wraps from the outside world. My surgery manual does mention that visitors will be required to wear gown and mask, so I do believe I can have visitors eventually, I just don’t know the timing. When people are allowed to come in I’ll let you all know, if you want to visit. I don’t even know if I’ll have access to my phone… I know what a germ magnet those things are.. but we’ll see.

After they release me from hospital, my Mom is going to stay with me for a few days. After she heads back home, I’ve been offered by so many people to help me out in any way they can – I truly appreciate it and will probably take you up on it that first week home!

Well, that’s all I have for now. I’ve been waiting, waiting, waiting for 2 years now, so this last week should be a piece of cake. Thank you all for the thoughts, prayers, and being a good friend to me through all this.

Terry
Dec 30, 2017

Transplant Surgery in January

Well kids, I was finally 100% approved for kidney transplant surgery today!  I met my surgeon in person again, he was very happy with my weight loss progress, and said we are good to go.

My coordinator is going to meet with Dennis’s coordinator, and present us with a couple of date options for surgery.  One thing I do know is that it will be in early or mid January. So, about 6 weeks from now.

It’s been a very long road, and it finally culminated today. I can’t fathom all the countless hours of treatments and lifestyle adjustments I’ve been through in the past two years. So many hours spent hooked up to a pole or machine.  So many days and nights of sitting at home, just biding my time.  I tried to live a normal life. I tried to travel, I tried to socialize, I tried to have a  relationship, I tried I tried I tried.  I succeeded in some endeavors and failed in others, but in the end I learned a lot about myself.  I learned that there’s a lot more to life than being an independent fly-by-night guy living by the moment.  I really had to dig deep inside myself to have the patience to sit at home most nights, to go to bed early, to actually plan things instead living off spontaneity.  I struggled at first but it seems like the new normal now.

I learned that after awhile I actually enjoyed that lifestyle, believe it or not. I feel that the last two years have really prepped me mentally for the rest of my life as a transplant patient. I needed to slow down, smell the roses, enjoy life’s simple pleasures.  When your life is a daily struggle to be normal, you really start to pay attention to those simple pleasures. Perhaps this transformation is a natural part of aging that everyone goes through, but I feel like the last two years of dialysis really put the whole thing in perspective for me.

I know I’m not the only one who changed his lifestyle – Dennis dedicated his life to put himself in a position to help, and for that I’m forever grateful.  In the process he’s made himself healthier too, so it’s a win win.

I should have specific surgery date for Dennis and I in the coming days. Once I do I’ll let you all know. Thank you all for reading, and most importantly, for being my friend, each of you.

Next steps: Continue healthy eating and exercise, lose a few more lbs and gain muscle… get strong for surgery! I have six weeks to go, and I plan on being as strong as I can be.

Terry
11/28/17

 

Halloween update

Hiya gang.  Remember my last blog post where I said I got my surgeon’s approval for moving forward with transplant? How all he wanted me to do now was to get off of Peritoneal Dialysis (PD) so I’d stop gaining weight, move to Hemodialysis for a month and lose a few pounds, and we’d schedule surgery in a month?  That sounded great to me! Dennis was all approved, and now the surgeon told me directly that I was good to go in one month.  I got really excited, told everyone I was pretty much approved, and the one month wait began.

Wellll…. I got some pretty crazy news today. My dialysis nurse had me read and sign a “Care Plan” document, which basically outlines my goals of being there.   I read about my “weight loss” goal for being released for transplant. I couldn’t believe my eyes, the number they listed was MUCH lower than what I was led to believe by the surgeon.  I asked about this number, she told me not to worry as that number wasn’t the expected weight loss, it was more of a general guideline for the dietitian.   Ok, I was relieved, because that number was about 25 lbs of weight loss.

But then the nurse went to her office, and came back and said “but you do need to lose 12 more lbs for transplant release though”.  To this point, I’ve lost about 7 lbs… a pretty good clip in 3 weeks. The number that the nurse gave me today is that I have to lose 12 MORE lbs than I already have 😮 That means from the beginning, I was apparently expected to lose 19 lbs.

This is “news” to me – as my surgeon and counselor told me (a month ago) to “go to hemodialysis for a month, and lose a few lbs”… that was it. Well, I’ve been here 3 weeks, and have lost 7 lbs (I’d say that counts as “a few”). They made no mention of a certain weight, and certainly no mention of 19 lbs in total. My counselor has been calling the clinic on a weekly basis, checking my weight.  Why would they call each week if they wan’t me to lose 19 lbs? No way I can lose that in a “month”, which is when the surgeon said they’d call me.

So I’m thinking that there has to be a mistake… I called my counselor today, and of course she’s out of office until Thursday. So I’ll be waiting until then to see if this is indeed a “target weight” I need. If so, it would have been nice for someone to tell me about it, right??? *frustrating*

Look, if that’s the goal I need, that’s fine – I trust their judgement and will lose the rest of the 19 lbs. before surgery.  (I plan on losing MUCH more after surgery regardless) I just don’t see how that could have been a goal from the beginning without them telling me about it.

This brings me to the much bigger level of frustration. For the past two years, I was doing my PD treatments, waiting on Dennis to lose 60 lbs to be approved to be a donor. During this time, I was gaining 40 lbs. Back in April I was concerned about this weight gain, so I called the transplant team to ask to be evaluated – because I didn’t want to be a holdup when Dennis was ready.  If I had to lose weight, I wanted to start then and there by switching to Hemodialyis a long time ago.  Well they called me in for my yearly exam, did all kinds of lab tests, etc… but then I never heard back from them.  I assumed I was good to go, so I continued living my life on PD.

Fast forward to now, Dennis is all approved, and now my worst fear has come true – I’m the holdup now. They are apparently telling me I was 19 lbs overweight (12 lbs as of right now).   I’ve only gained about 5 lbs since April – so why didn’t they tell me back then that I was 14 lbs overweight? I’d have stopped PD immediately to start losing weight wayyyy back then, while Dennis was still losing his weight.

*very frustrating*

Terry

(ps – you’re probably wondering  why I didn’t alter my lifestyle back in April to start losing weight when I thought I might be overweight.  That’s just the thing, I’ve been living a very healthy lifestyle for the past 2 years. I eat balanced meals, very little junk/processed foods, and plenty of exercise.  The normal “non PD” me would have been losing 40 lbs over that 2 years, but instead I gained 40… all because of the PD solution I had in me 24/7.  It’s a constant influx of calories that my body could not handle.  Now that I’m off of PD, that siege of calories is no longer there, hence I’m losing weight now in the past month).  I’m very confident I’ll lose these remaining 12 lbs pretty quick, but it’s just crazy I was never told I had to before surgery.

October, 2017

Transplant News

Hey there! A lot of you saw my Facebook post last week and know the good news, but I thought I’d make an official blog entry to put in more details.  We’re getting close to transplant time! There’s no actual date yet, but there will be shortly.

Getting to where we are now has been a very long, strange chain of time periods and events, I’ll try to explain everything that’s happened, and touch on a few things that went wrong along the way too.

As you’ve read in a previous post, my cousin Dennis has been on a very dedicated journey in getting approved to donate one of his kidneys to me. It’s been a very long road for him, and he’s stuck with it and deserves all the praise in the world. What a great guy.  He’s lost almost 70 lbs, and has done countless lab tests on pretty much every system in his body.  I can guarantee you he’s been through more testing than I have through all this.

Back to my chain of events… back in 2015 I did my initial testing for transplant eligibility. There’s no sense in looking for a donor if I can’t receive a new kidney, right?  Well I passed everything no problem.  I was in great health otherwise, and was at an acceptable weight.   The problem was, Dennis was a great match for me but he was too overweight to donate.  So he set on a 1.5 year journey to lose 60 or 70 lbs.  During that time span, I was doing Peritoneal Dialysis . This is a method of filtering your blood by pouring a dextrose(sugar)-water solution into your abdomen, which pulls excess water and toxins from your blood (through your blood vessel walls), and into the solution.   You then “drain” the dirty water, and “refill” with clean solution 4 times every day.

This is an amazing method, I can’t believe it actually works. I did this for two years – my numbers were great, I felt great, it was working wonders for me.  The bad part was – at the same time it was pulling bad things out of my body, it was also pushing a lot of calories INTO my body.  My body was taking in an influx of several hundred calories per day by doing these peritoneal dialysis treatments.

I tried to battle this seige of daily excess calories. I went to the gym 3x per week, rode my bike, walked, was as active as I could be when I had the energy to be.  I ate healthy (for the most part, I’d splurge like anyone else once in awhile), but almost immediately after starting this treatment two years ago I noticed the number on the scale was rising.

All told, I’ve gained over 40 lbs in the past 2 years.  So – while Dennis was losing all his weight, I was gaining all mine.  I knew it was a race for our lines to cross at an appropriate time on the “weight” lines, but the ugly reality is, after he was at his target weight, I was over mine.

Here’s where the gray areas come in… The problem was, I didn’t know I was too overweight for surgery.  I was supposed to have a “yearly evaluation” with the transplant team.  I had the initial evaluation in August 2015.  But come August 2016, nobody called me for a yearly evaluation.  I knew Dennis was still quite a ways off from his goal, so I just let it slide.  I had gained about 25 lbs that first year, but I was going to the gym, I was feeling good, so I just shrugged it off and I continued my treatments.  Finally, in April 2017, I realized it had been 1.5 years since my last evaluation.  I had gained another 10 lbs, so I was up about 30-35 lbs now.  I decided to call the transplant center to ask for another evaluation.

They brought me in, was surprised (and apologized) for not calling me in 6 months ago.  I re-did all my lab tests, and went on my way again.  Nobody from the transplant center called me for a followup, nobody called for me to see a doctor, etc.   So naturally I assumed I was “good to go”.  I’d gained 30 lbs but I must still be good since nobody called me back, right?

Now it’s 6 months later (October 2017), Dennis is now at his goal weight, so they call me in for my final transplant evaluation.  I see a doctor this time, and much to my horror he told me that I was probably too overweight for the surgery.  I’d gained too much weight since my last assessment which “was in 2015”.

I told the doctor that he was missing some info, I was tested in April 2017, I did a bunch of labs but was never called in to see a doctor. I told him that I’d only gained about 5 or so lbs since April 2017 (I’d lowered my dialysis strength to save on calories)….  I told him that if someone would have told me in April 2017 that I was too overweight for surgery, I’d have been back to Hemodialysis way back then to start losing weight.

I don’t know the reasons why I never saw a doctor back in April 2017 – whether it was a bad counselor that I had, or miscommunication, or whatever – the important thing is, I have a new counselor now and she has been very good in communicating with me in the past few weeks.

Anyway, back to the doctor I saw here last week – he told me I was too overweight for surgery, and I’d have to lose weight.  My heart sunk. I was so upset that nobody had told me this before. He then did me a favor by texting the actual surgeon, who was in the office that day.  He popped in and did a visual inspection of my body.  I had my PD solution in my abdomen that day (imagine a giant water balloon in your belly, it’s basically what it is)… He said that I appeared to be too overweight that day, but it wasn’t a fair assessment since I had the fluid in me.  He told me to come back the next day “empty” so he could get a better judgement on it.

So the next day, I go see him (the surgeon) again.. “empty” this time… nothing in my abdomen. He laid me down on a table, felt my tummy a few places, pulled back and said “ah, you’re good, you’ll be even better in 4-5 weeks”.   He did say that I was right on the border of being turned down though – and to not gain any more weight.  In fact he wants me to lose a little.

So in short – both Dennis and I are approved for surgery, they just want me to go about a month without PD, to lose a few lbs.  There’s no “goal weight”, but he wants to see a downward trend.

So that’s where we stand now.  I immediately stopped peritoneal dialysis – I started back on Hemodialysis this past week.  I’ve already had two sessions this week (Tuesday and Thursday), and I go back tomorrow (Saturday).  That will be my weekly schedule.

My body is going through a big change this week. Since I’ve been carrying around 6 lbs of water in my belly for 2 years, you can imagine the “void” that’s left down there. I’m actually really sore being “empty”, but it’s getting better every day.   I’ve started jogging again, which I haven’t been able to do in 2 years. (it was really tough before with all the water sloshing around in my gut). I’ve even lost about 5 lbs in the past 5 days – that’s amazing as I’ve done nothing but gain in the past 2 years!

I’m devoting this next month to losing as much weight as I can.  I’m hitting the “fad” dieting hard.  I’m not following a single diet plan, I’m just cutting out any and all carbs, eating nothing but healthy meats veggies and fruits, and exercising like there’s no tomorrow.  I’m not going all “Paleo” again, but pretty darn close. It’s basically a short term “fix” – once I get through surgery I’ll get back to my normal lifestyle, which was already pretty darn healthy to begin with.

My counselor said after a month or so we can schedule the surgery (assuming everything is still ok with Dennis) – and right now their schedule is pretty empty for November.  So we should be able to get a date pretty quickly after my month of Hemodialysis.

Terry (Oct. 2017)

 

You Can’t Just Brush Time By Faster….

Here’s a back story. About 5 or 6 years ago my dental hygienist recommended this electronic toothbrush. She said it has a fancy timer, fancy brush heads, and gives you a cleaner brush than you’ve ever had in your life. You use it for two minutes, and it vibrates every thirty seconds to let you know when to switch to another part of your mouth, and has a fancy digital display that rests on the sink.

(Don’t worry, this topic of this entry isn’t to explain how to brush your teeth. I’ll get to the point, just bear with me for a few minutes. 🙂 )

At the time this fancy brush seemed pretty pricey, but hey, I figured it was a good investment. So I bought it and started using it. At first it was kind of a pain. I never realized how long two minutes seems when you’re doing something like brushing your teeth. I always manually brushed for like a minute tops, on a good day. It just seemed to take for-ev-errrrr to brush my teeth for two minutes twice per day. Seems crazy right? Do you know how long it takes to stand there and brush for two minutes? (Don’t answer that. Yet.)

So – after a few years of this, I started getting sloppy with my brush strokes. I was tired of brushing slow methodical strokes for two minutes each time. It’s very monotonous. So instead of the slow, smooth, even strokes I’d been doing, I decided to brush really fast. Rapid back and forth motions, anywhere and everywhere, rampantly all over my mouth. Pressing hard, smashing the brush against my teeth, I was like a Ninja on a mission. No rhyme or reason, the point was to “hurry up and get this over with”.

I did this for weeks… actually several months. At my next cleaning, my hygienist noticed I had more buildup than before. She asked if I was still using my new toothbrush. I said “of course, in fact I’m brushing harder and faster”. That’s when I got my scolding and I had the light bulb moment. Instead of cleaning my teeth the right way, I was rushing through the process, going 100 mph, making it “seem” like I was brushing faster… but you know what? I was still brushing for two minutes. Brushing for two minutes, but not getting my teeth clean.

Finally the moral of the story – you can’t rush through time. Time is time. Two minutes is two minutes. A month is a month. A year is a year. No matter what you are going through that you wish was over, use that time to your advantage in any way you can. Don’t just rush through it and waste it away.

I’ve been on dialysis for 2 years and 1 month. The first year I was rushing through it. I was going on vacations, going out a lot, trying not to be phased by my handicap. I was wearing myself out. I finally realized that I had to slow down. I had to live by my new limitations, to relax and enjoy life as it came to me. So that’s what I did during the second year of dialysis. I still went out on occasion, but I took more extended relaxing breaks instead of all the “go go go breaks”. I’ve really enjoyed the pace of the second year over the first year.

Do you want to know the cool part? The first year lasted 365 days… and the second year lasted 365 days too. Neither went faster than the other. Remember that as you go through different segments of your life.

Well look at the clock – it’s time to go brush my teeth.

Terry