Good news I got the come into the hospital call at 5:30 am on July the 13th!  There w as none of that lets do the cross match and check in again in five hours.  Instead this time the nurse said she would schedule me a bed and call me back telling me what room I’d be in.  I had about an hour to finalize my kidney transplant email instructions for work, take a last bath and then head into GW Hospital (on the metro so my wife didn’t have to worry about the $20 hospital parking).

The kidney was from a donor after cardiac death (DCD) person, no not someone on life support up to the very end.  I thought at some point when I moved to GW that I decided I didn’t want that type of kidney, but a few weeks before I had learned that I did agree to consider one.  I think my thinking is I could always turn it down.  I did wonder about if I should pass but didn’t worry about it too much.  The kidney was form someone three years younger then me and had a 35 KDPI which is a little higher than some of the kidney’s I’be been an alternate for.

One surpirse is the surgeon said my antibody levels were about 50% but it didn’t look like I’d have antibodies to this donor.  I had though I didn’t have antibodes so I don’t know if that changed in the past 6 years or if I didn’t hear right years ago.  That made me feel better about moving forward with this opportunity.

We spent all day in the room, me getting shot up with anti rejection meds and generally waiting.  The were supposed to have access to the kidney coming from another NE state at about noon.  There as possible one area of lower blood flow on the kidney that they wanted to review and at that point had only done the computer simulation based cross match.  Susan ended up napping next to in the bed as we waited until about 3 PM when I was finally moved to the pre-opp area and the surgeon had reviewed the kidney and said it looked good including the spot with lower blood flow.  I was not told at the time but they did not the real cross match and it looked good.

We were told by different people the procedure would take from about two hours to six. I think from the surgeon’s standpoint should be about two or three hours but from the team’s standpoint its much longer with pre and post opp and the like.

Sometime after three I was knocked out and Susan went home to wait out the sugary and maybe hit some sport of ladies happy hour like event at a nearby outdoors store.

When I woke back up primarily I was complaining that I really needed to pee but it felt like my bladar would not let me move the urine from the bladar out of my boide.  I was really painful and probably went away once I pushed the button.  Obviously I was on a catheter so that sensation was probably just the form of pain that I noticed.

I was in the ICU that night and probably most of the next day until a room on the floor opened up.  Lots of blood was coming out of the catheter as well as a drain the put in my stummach to the right of the surgery area.  (I don’t recall if they removed the catheter in the ICU or on the floor but it was a relief when that came out and the “urine” started looking more like urine versus a bloody mess.

Honestly I was surprised at how manageable the pain was.  I think I hit the button occasionally in that first day in the ICU but mostly I’ve just been taking Tylenol every six hours and that seems to be treating me well.  I did take one of the opiets the first night home to get to sleep well that first night.

By Sunday the news was there was no antibodies to the new kidney and it looked great from an anti rejection standpoint.

But my creatine was still creeping up, starting about 6 or something it was going up a point a day, until it plateaued about and was holding in the 8.7 range.  There was some talk of doing a biosy then, but it sounded like that would be hard to schedule, also I’ve read here on I Hate Dialysis about people with bad experiences on biopsy so I was not rushing to pressure them to try to get it done.

I have been drinking tons of water but I still make urine with my old kidneys so I do worry abit that the new kidney is competing with the old kidneys for liquid.  It would have been nice to have a fairly current measure of my urine output prior to receiving the kidney.

Also I should have shaved my chest prior to heading to the hospital so the EKG leads had clean skin to attach to.  They saved around the sugary area but not everywhere else.  Once or twice I did shave when I felt good about the alternate call, but this time I didn’t.

For a moment there they were talking like they were going to release me on Monday after the Tuesday surgery but then they decided to wait for the creatine to start falling.  It really didn’t fall but but Tuesday it had plateaued at about 8.7, so by Thursday morning they decided I could just head home.

At that point the pulled the drain out of my belly, the port from my neck and the last IV from my arm.  All that happened just after I had my first shower of the week and was finally feeling a bit clean.  It was nice to not have the drain to empty and measure when I got home.

I felt the briefing on the meds and the goodie bag of all the meds, blood pressure cuff, thermometer and such was good and prepared us well for being at home.  The PA  had briefed us earlier in the week as well but it all came together as we when over the pill cases.

There were testing my blood sugar and giving me very small amounts of insuline because of the steroids but luckily it was at a level they didn’t feel I needed to continue that at home.

Appetite wise I only partially recovered in the hospital, but I think that more relates to the food selection since I’ve had good appetite at home.

I was up about 20-30 pounds in the hospital.  Not really puffy but carrying a ton of extra water.  When they released me I was probably up 20 pounds still but by today Monday I’m getting close to my old weight.  I’m happy about that because I’m at 60 mg of prednisone right now which seems high enough to drive serious bloating.

I came home Thursday afternoon and headed to the clinic on Friday and they ran over the labs to find my creatine went up a bit more to 9.1.  Later they called and adjusted one of the anti rejection meds up to get the levels right.

Thursday night I did take an opiet to help sleep that first night home but since its been 500 mg of Tylenol about four times per day with the night time dose being Tylenol PM to help get to sleep.

I’m VERY happy that I’m still strong, the flight of stairs to the bedroom is no problem and I can get up all the time to walk to the bathroom to measure my urine output.  On Friday after Susan went shopping I was able to make dinner and putter around.  By Sunday I was comfortable enough to spend a full five or so hours on the couch visiting with a friend that stopped by. (I do worry about back pain and just genearl discomfort from sitting versus lying in bed.)

Today I was back in the clinic at 10 am and it was very busy, Friday is not a normal clinic day so it was very quite, versus today there were tons of people in for lab work and even some potenial transplant recipients in for their education.  We waited a long time to get the lab work pulled (the tech is using my fistula to do blood draws which feels very odd), and then meet with the surgeon.

The surgeon had to remove some sutures around my drain hole, so what used to be about a pea sized hole gaped open and grew to about dime sized!  He put three little tape bands and pulled it back together but it will continue to feel very odd showing with a hole in my stomach, but it has to be closing up because I’m just getting very small amounts of yellow discoloring on the bandages across the full day, no longer is it the pink more bloody looking discarge.

The tape over my incision is starting to dry out a bit and the surgeon said they could take it off next week if it doesn’t fall off before then.  I’m starting to feel the incision more and also I think I can feel the new kidney pressing on my belly.  They said that the incision would start having sharp pains as the nerves grow back so keep taking the Tylenol before it really gets bad.

Now as I was writing this update I got a call back with my lab results and the creatine is down to 7.9!  Thats from 9.1 on Friday, so it back to the level it was around last Tuesday so hopefully its going to really start tanking sooner rather then later!  Only med change today is an extra bicarbonate pill in the evenings.

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The following is a facebook update from yesterday (Sunday the 23rd) the first day really felt like “dealing” with everyone’s well wishes.  For the first week I was happy my wife was receiving support via facebook but didn’t want to burn mental energy on facebook. I didn’t really use my phone until Tuesday after the Thursday transplant.

— facebook summary

Thank you everyone for your good wishes.  I’m home now recuperating and appreciate all the positive vibes over the last week.  It was nice for Susan (betty) to be able to read your comments as she stressed about what I was sleeping through in those first days…

I now have a third kidney in my belly now, somewere on the bellybutton level on the right front side of my body.  There is a nice 8-inch or so incision from just above groin up to waste level in a diagonal direction. I think I feel the extra organ in my belly and the incision is there but its not really painful, so I’m able to numb it down a little with basic Tylenol.

There is no sign of rejection, nor antibodies from the donor kidney so the main goal right now is to stay away from contaminates and sick people to give my body time to get used to the new organ well they still have my immune system wiped out to prevent my body from fighting the new organ.

The next goal is to see the kidney really kick into gear and start filtering out my blood, measured by creatine and BUN level.  I’ve yet to see that really happen.  I received a kidney from a dead person (as opposed to someone on life support right up to the time of harvesting the organs), a common concern with such kidneys is delayed graft function where the kidney doesn’t kick into gear as fast because it was off the blood supply and on ice for longer.

So now we are waiting to see a decrease significant in creatine levels, but thats not yet happened.  It sounds like that can take a few weeks (sometimes longer).  But at this point either the new or my old kidneys are doing enough work that I’ve not had dialysis since July 14th and I’m feeling good.

My goal is to drink 3-4 liters of water each day to flush out the new kidney and prepare it for when it really decides to start working.

The team at GW Hospital seemed very good.  There were great nurses working those 12 hour shifts that I worry about (truck drivers and pilots have hours working limits, but not nurses, nor doctors).  Its a teaching hospital to tons of people cycled through.   Each day two different teams (surgery and transpalt) would send their representative every morning at like 5:30 am to ask questions, and then they would come through with a huge group (including the senior people) a few hours later.

I still feel very happy that I’m heathy and strong overall.  I left the hospital with something like 8 different meds to take but those are all really transplant related so my body is able to deal with nly the stress of the transplant not other medical conditions.

I’m up and about making lunch and the like, quite happy that I can still do stairs and that I generally feel well.

Susan had to declutter and get the house cleaned to decrease the dust and the like in preparation of me coming home.  And she gets the privilege of being the cat litter changer from here on out.  (Basically for the rest of my life I have to take the same precautions that a pregnant women would as fast as towards cat litter and food safety.)

I’ll probably be off work about a month, and part of that time is to just keep me secluded from other people and the nasty germs they carry.  No shellfish or raw meats/fish in the short term, or maybe the rest of my life, and no open food bars, but I should be able to eat most everything as long as basic food safety is practiced.  That might mean no trips to say Mexico since I usually get some sort of stomach bug when I visit, but travel and the like will be fine.

The paper work says no international travel for six months but the surgeon didn’t have concerns about our Thanksgiving trip to Japan in four months so I’m already looking forward to that and the huge amount of extra time (and less logistics) that we will have not working around dialysis for a half day every other day.  It will make it much easier to plan a night or two in a buddhist temple eating the vegetarian monk food and taking day trips out to more remote areas.  (I don’t know yet if things like hot springs/public baths will be off limits once I’m healed up.)

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