It's Finally Official !

From my last post you know that Dana and I spent all day at the UAMS transplant clinic being evaluated to see if I am a good candidate for a kidney transplant in the future.  The day went very smoothly.   We listened to the same people talk about things that we heard 18 months ago when we went through this same process and were initially rejected.    It was good to hear some of those things again since we had forgotten the details about the insurance and such.   We learned the importance of taking care of the new kidney first hand as other couple that was in our evaluation class had already had a kidney transplant 7 years ago and because they didn't watch it as they should have, he lost his kidney and now is back on dialysis and being evaluated for being listed on the recipient list again.    The good part of the day is that we didn't have to go through all the tests and procedures that we had to last time since the tests were still valid for only being 18 months in the past.    All I had to do was give blood, which I get to do twice a month anyway so what's one more time. 

The big news which prompted this post is that I just received my early Christmas present for this year.  My phone rang and the caller ID said it was UAMS.    The last time I got a call from UAMS it was to tell me that they were rejecting me from the kidney list.   This time is different.   I am now officially on the UNOS (United Network for Organ Sharing) kidney recipient list!   

I now have a future hope beyond dialysis.  

Next steps are to start dialysis and wait for a call from the transplant team.  It has been a pretty good December for me.   My spirits are high and I have a good outlook for the future.  


Thanks for everyone's prayers in our direction.  I can tell people are praying.  To be evaluated and then listed the very next day is very rare.  

Stay Tuned ...

Check it off …

The last you heard from me I was moaning and whining about walking slow and not being able to tie my shoes or get in and out of a chair.   Well 12 days later I am up and going with no issues.   I worked from home the first three days since I was on pain meds and I couldn’t bend enough to get in the car and putting my seat belt on was painful.  My pain is gone and I have finally graduated to wearing normal pants again, although I still can’t handle putting a belt on (thank goodness for sweaters).  My only physical complaint is all of the tape that we have to keep ripping off my belly.   I’ll explain that more in a minute. 

  

Graduation …

So, as of Tuesday afternoon (12/18) Dana and I have graduated as co-Valedictorians of our dialysis class (the class consisted of Dana and myself).   We exceeded expectations and graduated 2 days earlier than was scheduled.   I have to give a big shout-out to the staff at the Davita Springhill Home Training clinic.  Nurse Fred and Nurse Jackie took great care of us and made the process easy to learn and enjoyable.   They are both knowledgeable about their trade and very kind.  They have created a medical clinic like none I have experienced, it is very laid-back and friendly.   They genuinely care about all of their patients and I appreciate that since I will get to visit them twice a month for the unforeseeable future.      I don’t believe in coincidences and I am thankful that Nurse Fred and his co-workers were our shepherds into this next phase in our life.

We learned so much in our dialysis training that I don’t know where to start or if I should even bore you with most of the details.   You know I have to share something so here is a new vocabulary word:  ‘Exchange’ =  the process of draining dialysis fluid out of my abdomen and then refilling my abdomen with new fluid so that my body can continue to diffuse and clean my blood efficiently.    Here is another new concept:  ‘Wash Hands’, what you think you know what washing hands means?   Next time to wash your hands set a timer and make sure you keep a good lather going for 2 minutes.   Then go do something for about 30 minutes and then come back and wash your hands for another 2 minutes.    You don’t realize how long 2 minutes is until you have to stand at a sink and wash your hands.   Another thing we learned is that you need an extra closet in your house if you are going to start home dialysis.   

The picture below is our stack of supplies that we get each month to keep us in stock for my exchanges.  

It’s hard to tell but that’s 20+ boxes of supplies including:  dialysis solutions (three strengths), IV pole, scale, blood pressure machine, miscellaneous cleaners, assorted gauzes and all of the dreaded tape.   Speaking of tape I now have a new fear and recurring dream, it starts with me waking up with sticky tape spread all over my hairy belly.   Then someone comes in and decides they want to see what’s under my tape and proceed to pry it off not so kindly.    Oh wait, that’s not a dream that’s what I have to do each night.  The not so kindly part was the dream, it does hurt a bunch to take off the tape but I can’t blame Dana and Fred since it hurts just as much when I do it myself.    Our training consisted of learning how to safely give me exchanges which will happen 4 times a day for the next few weeks.    That’s why we need all the supplies.   It takes a lot of stuff to do this 4 times a day and we will get a new shipment every month.   Sorry Dad but at the moment your bedroom in our house is serving as the storage room at the moment.     A key part of the training was learning how to avoid getting Peritonitis, which is basically any nasty germ getting into my abdominal cavity and running wild.   They say it’s very painful and will likely send me to this hospital if I ever get it.  That’s where the washing hands correctly comes in along with keeping my exchange area clean and following the proper procedure so you don’t get contaminated between washing hands and doing the critical connection with the tube in my belly that I have to tape all the time.   Dana has transformed a corner of our bedroom to be my 4 times a day (except when at work) exchange area where we have all my supplies and my IV pole and we can shut the door and stay clean.   I think it’s going to work out great.   We had a very slight hiccup when it came to figuring out how to do the noon exchange since I will be at work.   Our nurses told stories of people doing exchanges in their cars sitting still and doing it while also going down the road which sure doesn’t seem very safe or clean to me.    But here is where I give a huge thanks to SPP and my boss Kim and our facilities manager Chuck.  I initially asked if it was possible to reserve some time in a room in our new building that we have dedicated to our nursing mothers called our Lactation room.    Kim and Chuck did way better than that and actually gave me my own private room with two locked doors and a sink with cabinets and a comfy chair and work table.   We have a room in our new building that is designated as a medical exam room but we haven’t hired a nurse yet.  So Chuck gave me access and hooked me up with furniture and paper towels and was very helpful with whatever I needed.   I can’t thank them enough for taking this one problem away so I don’t have to worry about it.   

I also want to give a HUGE thanks to my co-worker Eric for covering for me over the last few weeks.  Especially these last couple of weeks when I've been out half of every day.   He's covering for me tomorrow during my transplant evaluation as well.   It helps my state of mind tremendously knowing that I'm not leaving SPP in a lurch while I'm out.  Thanks Eric you are truly a 'Stand Up' guy. 

Below are a couple pictures of my new noon-time exchange room and caution sign that Chuck put together for me.

That’s what has been happening for the last 12 days.  I am fully recovered and my surgery site is healing very well under the expert care of Nurse Dana.     I’m almost looking forward to starting dialysis to see if it will give me more energy and help me sleep better at night.   Stay tuned for that.  

What’s next ???

Our next steps obviously will be dialysis which will start on the day after Christmas (12/26).   We are taking a few days off to visit Dad and my sister in Fort Smith and then will come back home for Christmas to start our routine.   We initially were going to transport 4 days of supplies up to Fort Smith to start there but our medical team said to just take a break since I wasn’t in dire straits and could easily make it through a week without any exchanges.   But once we start we won’t take any more breaks.     So we look forward to Nurse Fred coming to our home to check out our setup and to give us approval to start dialysis on the 26^th, Merry Christmas.

Even before the 26^th rolls around we have another big event that we are anxious to get started.   On this Thursday (12/20) we are scheduled to attend the UAMS Transplant Evaluation day, again.   If you are a long time reader of my blog you will remember that in June of 2011 we went through this same process (http://diaryofakidney.blogspot.com/2011/06/evaluation-day-update-1.html) and it ended up that my kidneys miraculously improved to the point that the transplant team rejected us and told us to come back when my kidneys fell back below the 20% functioning threshold.  Well, we are obviously below that threshold so we are headed back to go through what I assume will be the same process as last time.  My Nephrologist said that some of the tests they did last time might still be good so I don’t have to take those tests again.   We’ll see about that.    It was a good experience last time and I’m not nervous about the process at all.    I hope we get the same coordinator as last time as we really liked her.   We have already met with the Nephrologist previously and the team’s surgeon happens to be the one who put this tube in my belly.    So, it feels a little bit like going home.

I think I have shared enough to give you a feeling of how it’s going.  I can’t complain about much, everyone we have dealt with has been very kind and Dana is a trooper to keep up with all of this stuff.  I appreciate her very very much.  

If anything comes up during the transplant evaluation I will add a short update but if it’s just like the last time I might wait until after Christmas to update next time.  

Thanks to everyone for their kind notes and emails and comments, it really helps more than I can express.   

We wish everyone a very Merry Christmas …. Stay Tuned …

Learning ... and ABs

I think that I will start this post with some quotes I found about learning.   I'll catch you up on all that has transpired in the last 11 days but my current state is one of learning. I am up to my eye balls in new terms and new procedures and new experiences.   And it's only going to get worse (or better depending on your love of learning) over the next couple of weeks.   So to psych myself up for all of my upcoming new knowledge I dug up some quotes for myself that I though were profound to my situation.

This first one speaks to my situation directly:  "I am always ready to learn although I do not always like being taught."  ~Winston Churchill.  What I am learning is interesting but my preference is to not have to learn it at all. 

"Anyone who stops learning is old, whether at twenty or eighty."  ~Henry Ford.  I have felt pretty old in the last few days with all the aches and pains.  I have also noticed that most of those people that I run into lately have been ... well there's no soft way to say it ... they've been pretty old.   I guess I'm exceptional in that I didn't want to wait until I was eighty to learn what I'm learning at 45.   So I guess I'm prolonging old age with all of my new learning.   I'm going to think about it that way to make myself feel better.

"Learning is like rowing upstream:  not to advance is to drop back."  ~Chinese Proverb.  Lastly, I thought this quote was profound in that at times lately it has seemed like I was being swept away without control by the speed at which things were all of the sudden happening. While in reality my doctors were trying to be proactive and 'row upstream' so as not to get in a bad situation that we would have a harder time dealing with.  In fact, in a conversation with my doctor today he mentioned another of his patients who went in the same time last week to have the same surgery I did and chose not to have it, but then became ill.  He's still in the hospital having his work done.

Okay, enough deep thinking ... I know you just want the gory details.  Much has happened since my last post so try to keep up.  I will throw in some random 'Did you knows' along the way when I think of something I learned.

Thursday (11/29) afternoon:  I had some good distraction from my nervousness on Thursday night since Ben had a basketball game at school.  They/he played awesome and beat our across-town rivals Ridgeroad.  Right before I got to the game I got my call from my resident doctor that we met with on Tuesday and he said to show up around 10:00 the next morning but wasn't sure on the details and suggested we just wait on the official word from someone else at UAMS.    In the middle of the game Dana got the 'official' call from UAMS and bless her heart she has some hearing loss so she was fairly confident at what she heard which was to show up at 7:00 the next morning because we had to talk to the anesthesiologist which apparently might take 3 hours (insert sarcastic look here)?    Oh well, we are obedient people so Dana got to work getting rides to school for the boys and pickups from school in case we were late getting done (thank goodness she did).  So, that evening I got a little emotional (I get it from my Dad, who right this second is crying).  You have to understand that a procedure very similar to what I was about to have done, triggered the complications that would cause my Mother to pass away.    So that made me nervous.   Also I had attended two funerals in the past 6 days, one for a friend and co-worker who lost his battle with Leukemia and one for a co-worker who lost his wife during what was supposed to be a simple surgery.    So that made me nervous.   So I made a point to catch each of my boys to tell them I loved them and how proud I was of each of them.  That's all I said and in my mind I figured if anything bad happened then that would make them feel better.   I told Dana what I did and she got mad at me and told me that I wasn't allowed to give her 'the goodbye' speech as I'm being rolled away to surgery.    Sorry I was emotional, give me a break.   It all seemed like the right thing to do at the time.   Well Thursday was over and I was spent so I went to bed and surprisingly slept better than normal.   I give credit to my prayer warriors out there helping calm my nerves.  

Friday morning:  So in order to get to the hospital by 7:00 we had to get up early.   I couldn't eat or drink (this will be important for later) so all I had to do was take my last real hot shower for what I would learn will be two weeks.  Dana is quick to get ready in the morning so we were out the door in plenty of time.  We had our iPads for entertainment and Dana had scheduled a friend to come sit with her during surgery.   It also just happened that my sister who lives in Van Buren was scheduled at UAMS that same morning for a checkup with her doctors, so we would end up visiting with her and Rich (I don't believe on coincidences).  I'm going to preface this next section saying that I love my wife very much but I am the one with more patience.   We are both pretty laid back but Dana has a hard time just sitting still waiting on pretty much anything.    Think about that when I tell you that we waited in our little curtain room for 7 hours before any activity toward surgery.    We showed up at 7:00 as told.   They prepped us and you could tell they were surprised that we were already here.  After getting changed into my awesome hospital gown the nurse came in and asked why we were here 3 hours early.   We said that someone called and told us that, this is where Dana starts doubting that she heard correctly, I'm sure she heard right but they just told us wrong.   So we got permission to get up and walk around the hospital which we did for a while eventually getting back onto my bed by 10:00.   We talked with anesthesiology which took all of about 15 minutes (see reference to sarcastic look in previous paragraph).  Then we waited for 4 more hours.  We had a good visit from Dr. Shaddox and soon after that my sister and brother-in-law showed up to help distract us/Dana.  They stood there with us for a few hours but eventually had to head home.  The doctors did eventually come around 2:00 and added something to my IV ba  ...........(3 hours pass) ........ then I remember Dana coming in and dressing me and helping me fall into a wheelchair.   I remember the person in the elevator coughing on me and how cold it was outside waiting for Dana to come up with the car.   I vividly remember Dana hitting the mother of all potholes (it had to be 2 feet deep) and from then on I remember only when I was asked to move which hurt a bunch.  I remember Paul waiting at home to help me up the stairs, and mentioning that we should be video taping this.   I'm curious why he would want to relive me staggering up the stairs.   I was more awake than I thought I would be, it could be partly because my gut hurt and it could be that my legs would cramp up anytime I tried to use them (that's what happens when you don't drink for 20 hours straight).   So there you go, it was a long day of waiting and when it was all done I brought home a souvenir of a rubber tube and some good pain pills.

Saturday, Sunday:  Saturday and Sunday were a blur of sleeping, drinking (trying to avoid cramping) and avoiding anything that requires the use of my ABs.    It's very hard to describe, but, it literally felt like I did 10,000 sit-ups and my ABs just couldn't do anymore.     Did you know that you use your ABs for almost every single body movement?!  This was the beginning of my new learning experience.  I have come a long way in a week but I still can't bend over to tie my shoes. I have to bring my foot to my hands.   Did you know that when Doctors say they will use camera's to do the surgery that it doesn't mean there will be less pain afterwards, it just means they won't stick their whole arm in your stomach.  I ended up with 4 holes, 3 for the instruments (camera, light, vacuum cleaner, cup holder, etc.) and one for the tube.   They all go straight through my ABs which account for how sore I am.    By Sunday evening I had figured out how to roll out of bed and how to use the bathroom and was generally self supportive.    By this time the dressing around my holes was grossing Dana out and she wanted to pop the protective plastic and drain all the fluid that had pooled up.  I held her off of that bad idea, but it just so happened that the fluid found a leak hole on it's own and it got drained after all.  


Monday:  I had good intentions of going to work on Monday but with needing to get my dressing changed and the thought of putting on a seat belt making me cringe I decided to work from home.   That afternoon I got to meet Fred, my new dialysis nurse, and get my bandages changed.   I like Fred a lot and he will be the source of much of my learning.   Did you know that it takes 27 hours of training to learn how to safely hook up a dialysis drain and fill bag at home?   Dana and I want to reduce that down since that translates to 9 out of the next 10 days for 3 hours each day.   My brain will be full when we are done. 

Tuesday-Friday.   Did you know that when you have surgery around your lower digestive tract they generally just shut down?  I'll spare you the details but I'll just give a shout-out to Davi for the delivery of Pear Juice.   I'm generally back to normal now.   I went to work on Thursday and today for as long as I could stand and then I just have to lay flat and rest my ABs because they are worn out.   The worst part is the jostling on the drive to and from work.  

Friday Morning.   I want back to see Fred at the home dialysis clinic this morning.  He removed my dressing and said that everything is looking good. The exit point for the tube is still red but that's to be expected.   I have one hole that looks to have broken open that we will be doctoring with neosporin and a bandaid during tonight's dressing change (yes daily).   Dana, my beautiful caretaker, learned how to patch me back up and she did awesome, she looked like she was having second thoughts but she did great.  We also learned today that mostly what we though home dialysis meant was incorrect.  We thought that we would do dialysis while I was asleep.   That is one type but that's not where we start.  We are learning that I will do 'Manual Peritoneal Dialysis' 4 times a day, awake, sitting up at home or wherever I want to drag all of our supplies.   We also learned that we need a storage shed in our bedroom to house all of these supplies.   So we get to do some redecorating to make up my little dialysis corner.   I'm looking for a spot at work where I can do my 'exchange', so I'll let you know if I find one.  I might just have to drive home for lunch. 

So what's next?  Starting on Tuesday we visit every day with Fred for 3 hours at a time learning how to do our home dialysis.  The goal being that we are trained and approved after our home visit to do our own dialysis by Christmas. 

Thanks to everyone for all of you cards and emails and texts and prayers, they all make a huge difference.   

Stay Tuned ...