Two Months

It’s been another month and things just keep getting better.  During this time, monitoring my meds and getting labs done has been priority.  This requires an hour and half drive to Indy twice a week and then waiting 3 hrs to see a doctor to review my labs.  This continued a few weeks, then reduced to once a week.  When I didn’t go to clinic, I had labs done locally.  The following week, the doctor was satisfied with my progress and decided I could discontinue clinics and start monthly visits to his office while get labs weekly.  I will see him tomorrow for my first office visit in Indy, then he will see me monthly during his visit to Lafayette.  I will also start seeing my nephrologist monthly in December.  It is so nice to not have to make those trips to Indy.

My labs have continued to bounce around the past month.  My cret level seems to go from 1.2 to 1.6 and back.  They thought I possibly had BK Virus, but the test came back negative.  They will continue to monitor that monthly, I believe for 2 yrs.  The fluctuation of my levels isn’t abnormal, but not something that is good to see.  One cause could be more activity and level hydration.  Now that I am feeling the results of a functioning kidney and the affects of the surgery are diminishing, I am not content to sit around.  I have been taking on projects to fill my time.  Nothing strenuous or requiring lifting or anything to compromise my recovery.  I was told to drink 3L of water a day.  When I first got home, I was drinking 5-6L a day with my water by my side at all times.   I still drink 3L a day, but I imagine sometimes that it all.

When I began to feel better, my first project was home made tamales.  Something I had always wanted to do, but just didn’t ever find the time for a dish that takes 2 days.  Nothing strenuous to it, but a lot of time on my feet that i was not used to.  It was rewarding, but very time consuming.  4.5lb roast makes about 40 tamales.  I followed the authentic recipe down to making my own masa dough and using dried peppers and corn husks I sourced from the Mexican grocery.


Living in the sticks, we don’t get cable, which actually is a good thing, except for the lack of good high speed internet.  We have zero interest in satellite TV, so we have cut the cord and overall pretty satisfied with the result of OTA TV.  We started out with a mini  150 mile antenna.  It worked amazingly well for the $25 paid, but I wasn’t satisfied, so I went old school.  Getting this set up was my next project which included upgrading the antenna and setting up a TiVo.  We also had the local Wi-Power install internet.  While setting up the antenna, I ran new lines down into the media room and put in a j-box for the internet connection.  New set up pulls in over 60 channels.



With plenty of time on my hands, I spent 3 days detailing my car.  Starting with a basic wash, a clay bar clean, power polish, a coat of sealant and a final coat to wax.   Then a full clean and sealant on the wheels and a thorough interior detail followed up with an engine bay clean and paint chip detail.  Still, nothing strenuous, but a lot of up and down which puts a strain on my mid section.

Now that she is all purty, I made a day trip over to Grissom Air Museum to see the sites and get a couple pics.

During the past month, something absolutely wonderful has happened.  My grand daughter was born on Friday October 13.  Beautiful and healthy Everleigh Rose Johnston.  As a side treat, we watched her big sister for the weekend.  It was her first time to spend the night away.

The more and more active and involved my project became, I believe my water intake dropped.  That with my increased activity, I believe affects my cret level.  I am spending this weekend slowing down, increasing my water and hoping my labs tomorrow will show an improvement.  I don’t think they are “bad”  and some fluctuation is normal the first couple months, even to a year, but I would like to see them stay under 1.2.

Tomorrow will be 8 weeks since the transplant.  Overall, I think things are going very well.  I feel so much better overall.  As a small test to myself, while at the air base museum, I climbed the observation tower.  It wasn’t much, I believe 4 flights off stairs, the pictures above are from the top.  It would have previously given me issues, but I didn’t have trouble making it to the top without stopping.  I was slightly winded, but didn’t get the panic feeling or shortness of breath like previously.

This post drifts off topic and rambles some, but I wanted to post about how things are going in my daily life to reflect on life after transplant.  While, I am not back up to 100%, I am not stuck sitting in a recliner and able to do most anything I was previously, with the exception of lifting, exerting myself and drinking alcohol.  Things are getting better and I owe a big thanks to my brother for it all.

It’s Never Simple With Me

So, my first day to drive to Indy and back alone.  It was a busy one, and I’m glad, otherwise I would have really missed having Wendi there.  But it moved pretty quickly with all I had to do.  There was some concern that my “impractical” car would be difficult to get in and out of or too harsh of a ride.  I had no issues and  rather enjoyed most of the drive.  About half interstate, half county roads with a mix of twists in turns at points.  Plenty of room to open her up a bit.  Can you blame me?

After my labs, it was time for the excitement of the day – stent removal.  I had read up enough to know that it really wasn’t a big deal.  It would be a simple 1 minute procedure, but just the thought of how it had to be removed kept me curious and anxious.  On top of that, I have to expose myself to some unknown nurse and have her handle my stuff.  Actually, after being in a hospital gown for 11 days has worn off concern for other people seeing my stuff, but not totally, and not that up close and personal.  Anyway, I’m given a local right where it counts.   That was not pleasant.  Then the Dr walks in and wham bam thank you mam, I have a camera going up my stuff with full view on a tv next to me.  Worse part is when it has to pass the prostate, then you can see the stent and a little arm comes out with pincers and snags it and 2 seconds later its out and I’m done.  Really wasn’t bad at all.  After seeing what they removed, I am surprised it is so long.  Glad that is over.

So now it’s time to head back to the clinic and find out what my results are from Friday’s ultra sound and my labs this morning.  I feel great and can only think they are getting better.   Well, the ultra sound showed no issues and the blood test for rejection antibodies is negative.  All my blood work looks great, my weight is good, my hydration is great….. but the flipping creatinine is still climbing.  Now it’s 1.42.  The dr today is new to me, but he remembers working with my brother.  So he has to review all my info to decide what to do.  He decides that I should go on prednisone for 3 days but he wants to check with my surgeon first.  Dr Goggins is on the floor today and comes in to review.  He doesn’t want to start steroids and says to let things ride and check again on Friday, he is not concerned with me unless I reach 1.6-1.7.  He is concerned about my artery connection and has me go to another room for another ultrasound.  He looks on as they check the blood flow and compare pressures and they are both happy with the results and think things are going great.  The next step will be to have a biopsy of the kidney.  Being on blood thinners, they do not want to do that now.  So, I will stop taking the thinners next week, then see what the numbers are doing and most likely schedule a biopsy.

Wow, A Month Already.

Another milestone coming up on Monday and things are coming along great.  My incision is healing and I’m getting around pretty much like normal.  It is a very obvious knot running along my side across my abdomen, but it’s getting better.

I have to return to the hospital twice a week for clinics.  So being off work isn’t all taking it easy.  Labs have to be taken 2 hrs prior to taking my meds, so that put us leaving home at 5:30am to make it to Indy for labs.  Then we get the oh so exciting 2 hr wait.  The general public can be trying on your nerves.  From the elderly with their phone volumes turn to full, keyboard and touch tap set to sound, playing games with all the sounds on…. Then the guy talking business loud enough for everyone within a mile to hear and somehow the guy next to him snoring like a ban chi. The key to surviving is a battery pack for your phone and a good set of ear buds.

So at clinic, I meet with a transplant doctor to review my labs and get an update on my meds.  So far, my immune suppressant drugs have been reduced and my blood thinners have been increased.  While in the hospital, my cretatine level hung around 1.0.  Since then my clinics have been 1.1, 1.2 and then 1.3.  At 1.2 the doctor reduced my meds, at 1.3 he was a little more concerned.  I got to spend the afternoon getting 2L of fluid and an ultra sound.  He was looking for fluid build up around the new kidney, which would indicate the beginning of rejection.  He was also looking to see if there was an more internal bleeding.  I was sent home and haven’t heard anything, so no news is good news.  I go back to clinic on Tues.

Tuesday is also the super exciting day for stent removal.  During the transplant, when they tie the new kidney into the bladder, they use a stent to make sure the connection stays open while it heals.  Now it is time to remove the stent and the only way out is through the pisser.  A cable with a hook and camera is sent up and it is snatched out.

I have been driving to the hospital and Wendi has been driving back.  She will be going back to work Monday, so I will be driving both ways for the first time.  I feel confident and enjoy driving, so it’s not really a concern for me, but still a milestone to get past.

My wife has been by my side through the entire journey and it has been such a benefit to my recovery.   She was on the run the entire time I was in the hospital, keeping up with the pets at home overnight and being by my side during the day.  She has been able to take off work the entire month I’ve been recovering.  The first week at home, she was there for anything and everything I needed.  I was treated like royalty.  The next week, I began showing my stubbornness and started doing more for myself, but still had her by my side.  At this point, I think she has probably had more than enough of me and ready to get back to work.  Well, maybe not back to work, but back to another routine, out in public away from me.   I can’t imagine going through this without her and love and appreciate her for all she has done for me.

Life goes on and I’m not too concerned about the slight increase in my creatinine level.  Seems to be normal according to what I’ve read and from other transplant patients comments online.  I just see my life getting better each day and look forward to a full recovery and get back at it.  Here’s to better results Tuesday.


Fun Facts


I received Clay’s left kidney and it was transplanted into my right side.  Clay’s kidneys were both of the same size, so they removed the one that was easiest.  It is easier to transplant the left kidney into the right side, so that is why it goes in my right side.  My other two kidneys remain and will eventually quit working and shrink.  There is no need to remove them.

My incision is 9″ long.  It was sutured from the inside out.  The outer seam was sealed with glue, no external stitches or staples were used.

I lost 15 lbs over the past 3 weeks.

The longest living kidney transplant is 50 years and still going.  Being 47 now, I expect to live a long full life thanks to the gift from my brother.

Kidney donors live longer healthier lives than average.  A person with one kidney can live a full life just as previously.



We Got It Done

The Big Day.

I really didn’t have a hard time getting to sleep the night before and getting up at 3am wasn’t as draining as I had imaged.  The typical morning runaround and off to the hospital like another day of work.  Just as planned, we pulled in to park, get out and find Clay and Angela just parking in the aisle across from us.  We walked right in, imagine at, no line at 5:30am. Registration was a breeze and then family arrived.  My dad, my mom and step dad were there for us.

We were directed to the basement and signed in.  Only a few minutes later, Clay was called to his room and I followed shortly afterwards.  It was gown time.

We got situated in our rooms, fortunately directly across from each other, with only curtain doors.  We met the nurses and the anesthesiologist and then each of our surgeons stopped by.  The atmosphere was just light with burst of joking and kidding from both rooms.  I recall Clay getting quite a response when they went to insert his IV and he called out bad touching bad touching.

It didn’t take long and Clay was wheeled off to get the show started.  It was maybe 45min to an hr later, they wheeled me off to my room.  I was giving the option to be wheeled into the operating room or to walk on my own.   I choose to walk in.  I walked in, was directed to not touch anything, and then lay on the narrow table.  There were more people buzzing around than I expected.  5-6 nurses prepping and working like the end of the world was coming.  The best one of all of course was the one talking to me and explaining how I was going to be going to sleep.  I was giving a mask and told to breath and off I went.

Both surgeries were determined a success.  I had an issue with plaque in my vain and it caused some concern and extra work.  We were taken to the recovery center and given private rooms.  I don’t recall much if any of the rest of this day or the next.  I have some brief memories of my son Lorean bringing my grand daughter Ella up to visit with the family.

The Day After

When we met with my surgeon that morning, he explained that this was going to be a breeze.  The kidney match was perfect; we were both in good health…. Well, we can all blame him for jinxing it then. My plaque issue and vein connection turned out to be a trouble maker.

Tuesday I was on an ice chip diet.  Sounds fun doesn’t it, NO!  I had a couple different bags of fluids connected to direct IV in my next.  The central IV was plumbed straight to my heart.  I had known this beforehand and thought it would be uncomfortable, but mostly I didn’t notice it other than the 4 tubes taped to my neck.  Fortunately, one of those lines was connected to a little button that I controlled giving me short doses of dilaudid. For such a large incision, you would think there would be a good bit of pain. I don’t know, I was taking full advantage of the magic button every time the light came on.  I also had a catheter, so no need to get up from the bed.  I was also aware that would occur and only dreaded the eventual removal.  Not having to get out of bed was a definite fair trade.  Just rolling over for the nurses and doctors was hard enough.  Later that day, I was upgraded to clear liquid diet and got some fine jello and just being able to drink water was amazing.  The magic thing they want from me now is a bowel movement.  I was trying, but nothing going on.  At this point, my new kidney was working like a rock star.  My creatinine was reading at 1 and my GFR was up to 75.  Everything looked great!

Maybe Go Home

Wednesday things were moving along fine.  I was upgraded to food diet and ate 3 meals.  The hospital food wasn’t bad and the menu list was 4-5 pages long.  Breakfast was my favorite.  This was also the day that Clay was getting discharged.  I was starting to have a lot of pressure build up in my stomach that was more uncomfortable than the incision. I was given laxatives and even a shot in my stomach to help stimulate things.  This continued through Thursday with the pain increasing.  There wasn’t much sleeping to be had in the hospital.  It is a University hospital and most of the nurses are young girls.  My room was right outside the nurse station and this group of girls were like a group of high school buds, up giggling and laughing loudly all night.  One of them was leaving to go to Riley and they had a party for her and it was just plain annoying.

Thursday was more of the same.  More pain, still on full food diet.  No luck on bowel movement, but the kidney is working overtime and everyone is thrilled with my labs and the thinking I will be going home possibly today, most likely tomorrow.  I was original thinking I should be home by the weekend with Saturday in mind.  As the day went on the pain in my stomach grew, my pain level was up to 7 or 8 and even the magic button wasn’t much help.  I can’t imagine what it would be like without it.


It was the middle of the night Thursday and I had tried to go to #2, no luck, just some gas, but with the pain, it was a slight relief.  I was instructed to call the nurses after each bathroom, so I did.  I went from the toilet to the recliner in the room to set for a minute.  I was in a lot of pain.  The nurse then helped me to the bed.  I remember getting to the bed with 2 nurse beside me and the pain went to #11, I burst out in sweat and my head swirled, I said out loud, this is not good, then fell completely into one of the nurses arms.  I could feel myself land in her arms like a dead weight as things went black.  I woke up with nurse all around me, I recall the head nurse calling out my name loudly as I awoke.  All the lights went on and the place lit up like a football stadium.  Buzzer were going off, people were jumping all around, carts were being wheeled in and there was a definite sense of panic.  I was settled back in the bed and regained composure.  I had just gone completely out.  The doctor on call was brought in.  I laid there in extreme pain for almost 3 hrs before she arrived.  She was a young intern and determined I needed xrays and from that she determined I needed an enema.  I was game, thinking a good flush would get the system going and clear out all that pressure. This was not the experience I thought I had signed up for.  Not a simple fleet bottle, oh no this was the real deal big bag.  I was actually a relief, but my pain was still at 5-6 and the abdominal pressure was not reduced.  Morning was close and I so looked forward to seeing a real doctor.  I knew things were not good, but I wasn’t aware just how bad they were.

Round Two

Friday is here and my surgeon comes in to get updated on the fun events of the night.  He checks me over and gets a very harsh look of concern on his face.  I have large bruising up my back side, the pressure in my stomach is extreme and I am in a lot of pain.  He is actually pretty quick with his evaluation and calls for a Cat scat stat.  He is concerned enough at this point that he is not leaving my side.  He called for transport and wheels me down to the Cat scan himself.  His opinion at his point is that I either have trapped gas or internal bleeding, the scan will tell.  If there is internal bleeding, He will have to open me back up, clean up the leak and fix it.  If it’s just gas, he says they will have to stick a finger up my ass to get that fixed.   The scan was quick and the results were too.  There was bleeding and emergency operation was set in place.  My surgeon, Dr. Goggins, is a top level doctor.  He does all of the kidney installs.  So when he wants something done, people jump.  It was almost instantly, I was wheeled into the operating room and I was breathing that magic gas again.  1.2 liter of blood were removed from my abdomen and the leak was fixed.  My incision was now a couple inches longer, but it was all still one long cut.   I don’t remember much of the rest of that day or the next.

It’s All Good

Not much happening the next couple of days.  My pain was back down to 2-3 and I was on the terrible ice chip diet.  Dr is concerned about my blood more than my kidney. I’m on a new drip and still getting  fluids.  Because of the large blood loose, I was giving a bag of blood.  Evenutally the IVs are stopped, the catheter is removed and I’m starting to go #2.  During the 2nd operation, they installed a drain in my side.  It was a little tube with a bag that collected the extra drainage.  It was also remove on Wednesday.  I got up and walked some, probably not as much as they have liked to see but I was getting gut on my own pretty well and things looked to be on track.  My blood labs were not the best and I was put back on IV fluids. I’m starting to think, I will get to go home this weekend for sure, then my nurse comments that her opinion is I will be there until next Mon\Tues.  Please NO!  Well, we were both wrong and Thursday morning, 11 days after the original transplant I am cleared to leave.  It takes most of the day to finish up my transplant training, meet with the pharmacist and my coordinator, go over my future plans, medications, do’s and don’ts….  I left the hospital at 5:00pm and made it home in time to watch the NFL opening game for this year.  It was good to be home in my recliner.  What a journey.  A new life starts with a full array of pills for me, for life.

Sometimes it really hits home.

I’m typically a very neutral, non emotional, hard to read, keep to myself guy.  It’s not that I don’t have emotions or show them, but it’s  pretty contained.  I’m aware.  All along, I’ve been level headed about this whole process and still overwhelmed with what my brother is doing for me.  I feel those emotions creeping up on me in waves at times.  A warm feeling, a stutter in my breath and then tears in my eyes.  It’s uncomfortable for me to cry or feel these emotions.  It hasn’t happened often in my life.  For some odd  reason, I’m almost ashamed of it, but know it perfectly normal.

Well, today was really one of those days.  I came  home from my last day of work for a few weeks and pulled up this blog and it just really hit me.  Not sure what or why, but it grabbed me pretty good.  I was alone, but still fought off the tears.  My eyes watered and I had a minute.  I don’t know what I’m afraid of, but I just don’t let myself let that stuff out.

I want to remember these feelings and so I post it here.  I’m not ashamed, it’s just me.  But I want to share that I am very grateful for what my brother is doing for me.  I don’t take it lightly and appreciate it so incredibly.  Love you brother.