Wednesday, July 30, 2014


July has come and gone--dialysis training is almost done.  John has passed all the exams in order to start home treatments.  His fistula is mature enough to use, so he needs to practice with it and it will become bigger and easier to use.  Monday was the first run with the fistula, and he was severely bruised.  He will be doing treatments exclusively at home within the next couple of weeks.

The treatments are working well.  John pulls his own blood and sends it for analysis each week.  There are five pages of results, measuring all aspects of kidney and dialysis function.  All of his bloodwork is now showing 'normal' --or expected-- range for his goals.

One of the nutritional goals for John is to consume 81g of protein each day.  Doctor's orders: eat steak.  I don't think this part of the treatment bothers him.  Shrimp and salmon, too.

The home machine was delivered yesterday, and next week we expect a supply for one month of dialysis to be delivered.  78 boxes.  Each of John's treatments use 20L of dialysate.  He does 6 treatments per week, each treatment takes 5-6 hours.  It's like having a full-time job!

Once we have the home treatments as routine, we will begin the protocol for the HepC.  I believe that will take about 12 weeks, at which point John will be placed on the transplant list as 'active'.  The transplant list is slow-moving, he will probably wait for 5-7 years for a deceased donor match.  A living donor is a far better option, I will post more about that later.

We have done some normal family things this month, as well:  family reunions, beach days, and watching good friends complete an Ironman event in Lake Placid.  John has not had energy for this type of activity in a long time, so this is great!

Happy summer!  And as always--thanks for the positive thoughts and prayers.

Thursday, July 3, 2014

Busy week!

We started home dialysis training on Monday, and completed the fourth session this afternoon.  We have the 3-day weekend off, and back to daily training on Monday.

During each treatment, 60-70 liters of blood are filtered.  Because John's renal function has been poor for many months now, there is an extensive build-up of toxins in his blood.  Once they are partially cleared from his blood, some of the toxins residing in organs moved into his blood, making him feel worse than before he started.  This 'healing crisis' should subside by the end of next week.

Today was a bumpy run on dialysis with cramping and a sudden drop in blood pressure.  These are both common occurrences during treatment, so we got some tips on how to handle those situations.

The training is at DaVita, with a fantastic dialysis nurse named Justina.  She is a strong teacher and experienced nurse.  And she doesn't stand for John not completing his homework.  She has made us both feel confident that we can handle treatments at home.  I have not fainted yet, and feel vaguely accustomed to the idea of removing blood, filtering it, and putting it back in.

While doing the HHD, John will still check in at the clinic for bloodwork and other monitoring.  We have a 5-page printout of bloodwork results from this week.  Potassium dropped low again, hoping to correct it without hospitalization.

In liver news:  our appointment in Boston went well.  John has two diseases that affect his liver:  hemochromatosis and Hep C.  His liver is moderately damaged from this diseases and all of the anti-rejection drugs for his kidney transplants.  The doc feels that the damage can be reversed, and that John does NOT need a liver transplant.  That is some good news.

The hemochromatosis is controlled by removing units of blood.  This is almost under control, and as soon as he is stabilized on dialysis, we will begin treatment for HepC.  He contracted HepC on dialysis in 1989 before there was a test for it.  The hygiene standards have changed dramatically since then.  The treatment is new, not yet FDA approved, and never been tried with a patient in renal failure.  Yet, it is our best option--so we plan to move forward with it and wipe out the HepC so that a kidney transplant can be the focus.  Overall, a good week.

Much love to you all--