Don't Shoot the Messengers...

I must try to remember that the people delivering the bad news don’t enjoy saying it anymore than I enjoy hearing it.

We just met with the transplant team at St. Paul’s and have a much better understanding of where things are at. We didn’t really learn anything “new” but more we had the opportunity to speak with a new doctor that spoke our language. The result ~ we now understand the look of pity we have been receiving while at these visits.
 A few months ago Dwayne met with his specialist in Victoria that deals with his dialysis. Dwayne and I have always understood that dialysis is what keeps you alive and going when your kidneys fail, and that you may feel like crap a lot of the time but that there is no “life span” on dialysis. In a round about way the conversation came up of “life on dialysis” and more specifically how crappy Dwayne had been feeling. That is when the Dr referred to the general lifespan of someone on long term dialysis in Dwayne’s condition, speculating that reaching the age of 50 could be a challenge. ((insert deep breath)) We did not know that there was a life span placed on dialysis patients. Of course hearing this was emotional for both of us, but then we snapped back to reality and thought “this is the worst case scenario and just a speculation…this isn’t us.” This is when I began the blog, began the search for the perfect kidney donation, paired exchange candidate and began looking at the support we’ve received from the St. Paul’s team and really questioning everything and anything to make this situation better.

Then we went to St. Paul’s…

We may have been a bit naive in thinking that a transplant was likely to happen…let me rephrase that…I may have been a bit naïve…Dwayne is always too realistic. Don’t take this as I’ve given up hope…deep down I know Dwayne will have another transplant…probably just not the way I anticipated it. The short version of the story is still the same…his antibodies are too high…the chances of him matching a donor’s blood type and antibodies are virtually impossible. The 2% of the population we keep referring to…well we were a bit off…that is 2% of the “B blood type” population ((insert deep breath)) so…what does that mean now? We still need “B blood type” donor options, we are still looking the same way we were before, only now the difference is what they will do to Dwayne to make it happen.

We will revisit this in 6 months, but the probability is that they will filter out the antibodies in Dwayne’s blood and give him new plasma. This is a dangerous time for him as he will be removing all of the antibodies in his blood that keep him from getting sick. Once they take the antibodies out to a point of matching a donor, they will do the transplant. He will then be placed on an intense amount of medication and will spend 6 months being poked, prodded, and monitored beyond belief. He will likely feel like garbage during this time as the drugs will be pretty intense. If he and the kidney get through the first 6 months together…then there is a chance it will work for a few years!

Us at the Hoover Dam just outside of Las Vegas this February 2010

So where things stand now…we revisit this in 6 months to decide if Dwayne wants to take the risks involved in removing the antibodies. We then wait to see if we have a donor that matches his blood type. Once we do he would begin the procedure and go from there. None of this would take place right away and at this time we will just continue with life the way it is right now…

Travel on Dialysis

Not as easy as one would think...
Dwayne and I have not done a lot in the way of traveling because there is just so much involved in making it happen. 

First, we don't travel abroad...in the States alone we would be looking at around $1000 per run.  I believe we would get a portion ($200) back from the government but it really adds a solid cost on to the travel arrangements.  Dwayne also can not purchase travel insurance, so if something were to happen to him on dialysis, well...let's not think about it...

We can travel within Canada as our health care works across the country.  No complaints there, we are very fortunate that is the case.  Booking dialysis in Canada is like booking a popular resort (only not as fun!)  Most larger hospitals may have a bed or two reserved for people traveling, but many locations do not have any extra beds at all.  Calling in to these hospitals you generally put your name in to hold space should it be available.  Our experience has been that you never really know if the space is confirmed until a month before, at that time you should learn if you get the space or not.  Even if you get the space we usually don't find out the times until a few days before.  Makes it a little hard to plan!  Driving is our mode of transport as we can not rely on the dialysis dates to book a flight, and we can't rely on flights to get us where we need to be in time for dialysis.  Thanks god we love road trips!

Once all of this is organized I tend to relax.  Not Dwayne.  I won't get into details, but prepping for a trip to another facility is NOT fun.  It involves testing for the "Super Bug" which for lack of a better word makes him feel pretty violated!  He has to argue pretty hard with the nurses to conduct that test himself.  He has to carry his EPO in a little cooler and has to ensure that all of his labs are up to date and that the nurses have faxed the loads of paperwork back and forth before we go.  Then there is the stress of being in a new facility with different doctors and nurses...kind of like your first day at a new school or new job, but not as exciting. 

That is the process ~ as much as it hinders our adventurous sides we are pretty excited for this summer.  We are off to Calgary for a week with 3 runs in a facility there...then we head home to Powell River where we managed (by miracle of all miracles) to snag one of the three beds in that facility for one day.  This is the first time in 3 years we will be able to stay more than 2 nights in my home town. 

So the next time you travel, be thankful for the ease in which you can book your flight, the vast number of locations you can select from and the freedom to plan whatever you like with no other commitments!  We are thankful for the assistance we received from Dwayne's amazing nurses to assist us in getting our vacations this summer!