Friday, May 30, 2014


On Saturday, John had a treatment for hemochromatosis, a genetic disease which causes an iron overload in the blood. The treatment is phlebotomy, or removal of blood, to reduce the iron load.  The treatment wiped out his energy completely. 

He saw the local nephrologist on Wednesday, and it is clear to the doctor that John needs to be on dialysis right away.  There are several types of dialysis available, and we are going to try completing the treatments at home.  Dialysis is a process that 'cleans' the blood--an artificial kidney process.  This process allows patients better quality of life when the kidneys fail, however it is meant to be temporary.  This chart on patient longevity includes first transplants only. 

In-home dialysis will require many hours of training for both of us, but will allow many benefits including a more flexible schedule for treatments.  He will need dialysis 6 times per week, and each treatment will take 4-5 hours with set-up and clean-up. 

John will have a surgery to create a vascular access for the dialysis treatments in the next few weeks.  Hopefully it will be a fistula, but it could be a graft.  He will also have a catheter which will allow him to be dialized (yes, it's a verb, too!)  immediately.

The home dialysis kit weighs about 75 pounds, and is portable.  In case you want to take it camping.

Thanks to everyone for the kind words and especially those who made time to help us out at home this week.  You are very much appreciated!

Sunday, May 25, 2014

Hey local friends!

In medical news this week: one of the sites of the skin cancer biopsies is cancerous, so we will schedule an appointment to have the spot removed.  This week we will also schedule the surgery to put the fistula in for dialysis.  We are anxious to have that in place.

The last time John went on dialysis, he was in his early 20's.  He felt physically the same before and after transplant--the difficulties of renal failure and dialysis were minimal.  This time is different.  His energy is very low, and some of the treatments and medicines he receives leave him unable to do much of anything.  Many people with John's renal function are bedridden and / or wheelchair bound.  He is still working full time, but anything outside of those responsibilities is a struggle.  The diet required for end-stage renal failure is not at all nutritious, leaving him with severe fatigue.

We are getting our home ready to sell, putting our focus on John's health and keeping things as normal as possible for the kids.  John is a carpenter, and he has been working on several projects in our home that we need to finish as soon as possible.

If any local friends and family have an hour or two to spare, we could really use some help!  We want to get the house on the market this summer.  There are a variety of things that need to be done--yard work to electrical work.  Message me on the FB, or email:

Friday, May 16, 2014

Still waiting to be listed...

This week's appointments included a liver test called Fibroscan, a non-invasive exam which is able to determine liver health with better accuracy than a liver biopsy.  John has had liver biopsies before, and like most people who have had them, was not looking forward to another.  Luckily we are just 2 hours from Boston where they offer this newer technology--and no pain!

Also saw the dermatologist who did take two biopsies.  John has had several spots of cancer removed from his skin over the past two years,  a squamous cell carcinoma resulting from the anti-rejection medications used after organ transplant.  Cancer is a frightening word for most, but this cancer is one of the more manageable diseases on our list.

Today he saw a vascular surgeon who did an extensive ultrasound of his veins to map out a place to  create a permanent access for dialysis treatments.  We are waiting for the results from all of this week's tests.

Will update here as soon as he is officially on the transplant list--there is a committee which will review John's case and determine if he is eligible.  It will be a big relief to arrive at that point!

Monday, May 12, 2014

Back on The List

So, we are working on getting John back on the kidney transplant list.

John has had FSGS since he was a child, diagnosed at age 7.  Eventually the disease took over both kidneys, and he had a transplant in 1986 from a living donor--his brother.  That transplant lasted several years.. but infection, rejection, and the disease overtook the donor kidney as well.  One theory is that the match was too good.  John was on dialysis* for a couple of years, and had a second transplant in 1992 from a deceased donor. 

*edited:  John was on dialysis for 3 years and 3 months!

We are lucky and grateful that transplant lasted for 22 years, with no complications! 

Over this past year, John's kidney function has declined and he is now in end-stage renal failure. The symptoms are hitting him a bit harder at age 46 than the last time he experienced it in his 20s. 

His best chance is a living donor transplant, as soon as possible.  His blood type is O+, but there is more to the matching process than just blood type.  We are looking in to a program called paired donation where multiple donors and recipients are matched.

He is being followed by the Transplant Institute in Boston, as well as a local nephrologist. We will update this blog with events and progress.