Second chance for the kidneys

Three weeks ago, I got my stents swapped out and the tumors are really starting to impinge on the ureters.  The urologist was able to get some stronger stents inserted but the right ureter is getting harder and harder to manage.  He got the stent in but almost had to admit me try and insert it from above.  I have little idea of how this is performed and will talk to him about it at my next visit but things are getting worse in that area.

The kidneys have really responded well to the obstruction being removed with my numbers returning to a more normal (for me) level.  The big number that you watch for in kidney function is the creatinine level. 18 months ago, I had a truly normal creatinine of 1.1 which then rose to 2.4 12 months ago, 4.2 6 months ago and then was 8.2 prior to my stent swap.

My creatinine has now fallen back to a more tolerable level of 4.4 which puts me at about 18% of full kidney function. My nephrologist plans on holding off on dialysis until I hit about 10% of kidney function or I start to have significant indications of blood poisoning.  This could be as soon as 2 months or it could be as long as 6 months as long as I don't have another obstruction or even potentially longer.  We will continue to monitor my kidney function as well as the effects of kidney failure for the near future.

There are several effects that we will consider.  First, the kidneys manage the level of electrolytes in your blood, most notably, sodium, potassium, and phosphorus.  My last blood test shows that these are all in spec so I don't have to do anything special with respect to my diet.  Second, the kidneys filter out excess fluid in the blood and then you excrete it in your urine.  An indication that this is not functioning is that you begin to have swelling in your extremities and your blood pressure begins to rise.  So far, this is not happening for me.  Finally, your kidneys stop producing erythropoietin, causing you to become anemic (low red blood cell count).

Living at almost 7,000 feet in Colorado Springs, people tend to have excessively high red blood cell counts and mine should be in the range of 12-13.  Mine are 9.2 which is quite low, even for someone at sea level, and we have been trying to stimulate the growth with extra iron supplements but to no avail.  So I now have a second thing in common with Lance Armstrong as I am starting to receive synthetic EPO to attempt to boost my red blood counts.

So, getting back to the dialysis I expect to receive, I saw a vascular surgeon this morning to find out the plan for getting access to support dialysis.  A few weeks ago, I also had ultrasounds to map my veins and arteries so they would know where and how to create an AV-fistula in my arm to provide dialysis access.  As it happens, I have 'miniscule' veins according the the vascular surgeon and this means that they are unable to create a fistula.

The backup option is to insert a graft between the artery in your arm and the larger vein in your armpit.  This is not a preferred solution because grafts have a greater chance of infection and have other complications compared to a fistula but it is our best option.  They will insert a tube of PFTE (Teflon, so I will really be slick!!!) between the artery and vein in my upper left arm.  Recovery will be minimal and the surgeon says, if it hurts, don't do it.  I will still take a couple of weeks off of hockey but will be back on the ice in June.

So, May 9th, I will have my second surgical procedure in a month to put in the graft.  This usually takes less than 90 minutes and they will perform it with two blocks (arm and shoulder) along with some twilight sedation to avoid carcinoid crisis.  I will get some percocet for the pain but plan on being back in the office on Monday the 12th after making sure my kids give my wife a proper mother's day!

New ureteral stents may give kidneys some more time.

Right after my appointment with the nephrologist last Thursday, I was able to set up an appointment with the urologist on Friday and he scheduled me for a bilateral stent swap today.  Everything went well with no carcinoid crisis but the tumors are really starting to impinge on the ureters.  From the ultrasound that the nephrologist ordered, it looked like the right stent may not have been working very well.

That is exactly what the urologist noted during the swap.  He inserted thicker and stronger stents to try to avoid them getting crushed but was almost unable to get the right stent in place due to the compression from the tumors.  Had things not worked out, he may have needed to admit me and attempt to insert them from above.  If this failed, the next step is to put in a drain directly from the kidney to a tube in my back.  This is a step I don't want to take as it will certainly cause me to stop many activities such as hockey.

But, the stents are in place.  Hopefully they will relieve the stress on the kidneys and they will recover enough to put of dialysis for a while.  In another 6-9 months, we will need to attempt another replacement as the stents tend to encrust and start to obstruct.  Until then, hopefully my kidneys will recover some and we can make a plan on how to insert new stents with a minimum of intrusion.

More radiation and less kidney

In just 10 days, Stephanie and I are heading back to New Orleans for my second round of I131 treatment.  My scans seem to imply that treatment still is viable and Dr. Campeau has had several patients who have seen more response from further treatments so we are giving it another swing.  We fly out Tuesday the 15th, go straight to an appointment with a doctor and then I get admitted on the 16th for more radiation.  I know what I am getting into this time and have a cheap Chromebook that I will be using to watch movies, netflix, and just keep in touch.

The more worrisome side of the house are my kidneys.  As you may recall, my last two surgeries addressed tumors that were wrapped around my ureters.  This resulted in my kidneys getting backed up and putting strain on them.  I got stents inserted but they have a bad habit of clogging and causing further strain on the kidneys.  I am now in stage 5 chronic kidney disease and that means dialysis is coming and it is coming soon.

There are two types of dialysis but I am only eligible for hemodialysis where the blood is filtered through a machine and then put back.  To get to the point where I can do dialysis, I need to have a fistula installed in my arm, short circuiting a vein to an artery.  I will be having a consult to find out when I can get this done and it will still be several months after that before it will be healed enough to be used.  If my kidneys fail completely before that happens, they will need to put a catheter in my chest to be used for the dialysis in the short term.

These new developments really suck.  Hemodialysis is typically done three days a week at a dialysis facility and takes about 4hrs per treatment.  This starts to really interfere with life in a major fashion.  Two can be done on workdays but that really makes getting my 40 hours per week hard.  Of course, that is assuming I do dialysis one day on the weekend and that causes significant problems with camping, skiing, and any sort of activity.

Home dialysis is possible but Stephanie will need to be trained in placing the needles so that we can make this happen.  The machine is about 80 pounds and I would be connected to it every night for about 2-2.5hrs.  This makes everything a bit more tolerable but it still is a significant inconvenience to work and play.

I am not doing well.  I feel as if I am on the hairy edge of an emotional breakdown all the time.  The need for dialysis has hit me hard.  I know there are many people who deal with life on dialysis but this is just piling on.  There are people who deal with chronic cancer, people who deal with colostomies, people who deal with chronic diarrhea but I am tired of dealing with all of it.

I am not giving up and I am not stopping fighting but it is getting harder all the time.  Your support is needed and it is appreciated.