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 …