Some technical stuff

So it turns out that sitting around watching someone get dialysis is not nearly as entertaining as it should be.  I tried to make myself feel better by listing out all of the things that are worse than dialysis and I came up with 7.

This morning I got all of my questions answered, many of Erik's miscommunicated information clarified, and a new sense of organizational purpose.  I do not fault Erik for the prior made up misunderstood facts because, well, kidney failure.  It also seems that Erik was feeling far worse than he ever said, and probably had some confusion and inability to concentrate (uh, yeh) and the additional mind altering help of pain killers.

I have been getting some technical medical questions as apparently my ramblings and irrelevant observations are not very informative.  So, for anyone in the know or who cares about the details here they are, with some clarifications:

There are 2 types of dialysis.  

Hemodialysis and Peritoneal Dialysis.  

Hemodialysis involves a big tube in the arm, blood exchange, IV's, and needles.  This is what people get 3 or 4 times a week for 4 hours a time in the clinic.  If you have a vision of people sitting around in dialysis chairs sharing their life stories and one upping each other with their meds lists this is Hemodialysis.  The pro is less time.  The con is they generally don't feel better, they are tired after dialysis, and they start feeling bad again before the next treatment.  And blood and needles.

Peritoneal Dialysis is a fluid transfer through a port in the abdomen.  Fluid fills up the abdominal cavity, sits there and attracts the toxins and extra water in the body, and drains it out.  You can do this 4 times a day, every day, 1 - 1/2 hours a shot, or overnight for 9 hours, 7 days a week.  Erik is doing overnight Peritoneal Dialysis.  The con is the time commitment.   The pros are many - at home, fully functional normal days, no IV's and needles, and the patients generally feel much better and do not have the fatigue or the symptom build up between treatments.

Duration of training phase

So it seems that starting dialysis immediately after surgery was not just done out of the goodness of anyone's kind heart.  It was necessary.  Erik's last labs showed he is in full blown end stage kidney failure.  They normally wait 2 weeks after surgery for the healing, as there is basically an open wound in the stomach.  Erik started what they call urgent care dialysis because he simply couldn't wait any longer. Uhhhhhhh, nice to know.

He will get dialysis daily for the next 2 weeks, from 8:30 to 3:30.  Then the formal training and classes will start.  It is possible that he will not start home dialysis for 3-4 weeks.

The nurse said he should feel significantly better by the end of the week.

Training and Equipment

Once the training is done and we are in a routine this should go smoothly.  Erik will need to track his blood pressure, temperature, fluid input/output through the port, and maybe some other stuff.  

Today they ordered the accessories:  A dialysis machine, blood pressure machine, IV pole in case the machine fails and he needs to do a manual transfer, a 21 foot tube, a draining tube, all kinds of anti bacterial stuff, and 50 boxes of fluid bags.  Yes I said 50.  Anyone who made fun of me for emptying the upstairs closets should take it back right now.  Some people get weekly deliveries. We have an empty guest room that will become the make shift hospital supplies room so we can have deliveries on a monthly basis.  This is a perfect opportunity for me to engage in some extra online shopping.  With all of this crap being delivered who really would notice some extra packages?

No downstairs hospital ward needed

So it seems that Erik, in his post surgical pre dialysis haze, was told that the machine and the drain need to be lower than the bed.  Somehow this turned into him thinking we needed to set up shop on the first floor.  Poor guy.  This just means that the machine needs to be set up on a table that is lower than our bed and there needs to be a low drain, like a tub.  He will likely start dialysis around 10 at night which means there is going to be a whole lot of negotiations going on as this is my mindless t.v. time.  Someone will have to compromise.  I foresee Erik developing a love for True Blood, Game of Thrones and Keeping up with the Kardashians, with a little bit of General Hospital thrown in for good measure.

Now, he can have the fluid drain into a big huge bag which carries it's own set of issues.  The other option is that the big long drain tube can be extended to reach into the bathroom and clip in the tub.  It is the most sanitary and he doesn't have to lift heavy bags of fluid output.  I of course will never use that bathtub again, but that's cool.  This also means I have to switch my side of the bed.  I'm all about making sacrifices.

Erik also told me that he needs a sterile room for all time.  Really there are just rules when he is connecting or disconnecting - face mask, alcohol swabs, no windows open, vents closed etc.  The number one risk for this type of dialysis is infection.  Once he is hooked up he can walk around, sit up, let the dog in the room, open the windows and turn on the fan (this one had me breathing a sigh of relief because my hot flashes need open windows and ceiling fans), just function and do whatever.  I told him he needs a pretty little chaise lounge in the corner, ironically just like the one I have been eyeing while trying to come up with a valid reason for buying it.  

As they were explaining how Erik can get himself all sterile and hooked up to a tube that will extend through my bedroom and walk around and do stuff I was flooded with visions of John Travolta starring as Tod Lubich in the 1976 classic "The Boy in the Plastic Bubble."  These are the types of things that are floating around in my head and available for immediate recall.  At all times.

Time and Duration

Erik will need to be hooked up for 9 hours a night.  Every night.  He is thinking 10 to 7.  Sounds pretty convenient that 7 gets him out of the 6 a.m. child and dog wake up and morning activities.  Just saying.  After a month or two they will re-evaluate - there is a chance they can reduce the time or the amount of days.  There is also a chance they could increase the time.  

For now

I've accepted that the next few weeks will be crazy.  I do crazy pretty well so I'm at peace with this.  Plus, my new clean and sterile bathroom counters can really be blamed on dialysis.

I think that once we are settled in with this whole ordeal at home it will just be what it is and the chaos part of it will go away.  

So I think that is all of the info that people have asked.  

I'm off to get Erik a little dialysis back pack with things to keep him busy the next few weeks.  First on the list is an iPad with netflix because (1) i'm not giving mine up and (2) if we have to watch the same t.v. shows at night now he really needs to get caught up on True Blood.  Also, this way he can watch whatever the heck boring news program he wants with his own little screen and head phones.  If I have to stare at a large tube running through my room I can't be expected to watch the news.