Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Zach has polycystic kidney disease (PKD). It is a disease causing uncontrolled growth
of cysts in the kidney, as these cysts increase in size and number over time,
they impair kidney function. Zach’s PKD does
not define or limit who Zach is-he does not let it. Some attention to his PKD has been raised in
the past few years when Zach chose to give up drinking and meat (2 things he
loves) for a period of time to see if this would slow down the progression of
his disease. Unfortunately the only
proven treatment for PKD is to do a kidney transplant if kidney function
declines.
Zach and I want you to express our thanks for the love and
concern of our caring family and friends. We have not always been good at
explaining or sharing a lot of information in regards to Zach’s PKD over the
years. Now that we know a kidney
transplant is in Zach’s future, we decided that Caringbridge would be a good
way to share any information or updates that we get.
As of 10/26/16 here is what we know so far:
Zach’s doctors at Northwestern have informed us that Zach’s
kidney function has declined to the point that he meets criteria to be listed
for a kidney transplant. However, it’s hard to justify doing a transplant right
now given that Zach has minimal symptoms and is living his normal life. The goal is that Zach will be monitored very
closely and go for kidney transplant when he becomes more symptomatic or just
before his kidney function declines to the point of needing dialysis. The medical team would like to prevent
dialysis if possible due to the side effects and decreased survival rates when
compared to kidney transplant. So Zach’s
name was added to the kidney transplant wait list in December 2015. The wait for a deceased kidney donor is
usually 5 years or more so the thought was the sooner his name got on that
list, the better his chance of getting a kidney.
When we met with the kidney transplant team at Northwestern,
we learned there are 2 sources for kidney transplantation: living or deceased
donor. Living donor kidney transplants
are an option because we can lead normal, healthy lives with just one
kidney. After donating a kidney, the
donor’s remaining healthy kidney will grow until it is able to do the work of
two kidneys. Living donors have a normal
expected life span and their lifestyle and activities are not restricted in any
way. So, Zach will only receive 1 kidney
at the time of transplant. To put a
positive twist on all of this…if you need an organ, a kidney is not a bad one
to need. Upon further discussion with
the team at Northwestern, it became apparent that a living kidney donor
transplant would be the ideal option for Zach.
A living donor would be beneficial because this would provide the
flexibility of doing the transplant at the ideal time (instead of waiting until
his name moves up the list, or taking a kidney when available instead of
waiting until Zach’s doctors feel the timing is right). Also, on average, a live donor kidney will
lasts 15-20 years and a deceased kidney 10 years.
Myself and some of Zach’s brothers got tested and found out we
have B or O blood types, making us potential kidney donors for Zach. However Zach has a low level of antibodies
(he’s expected to have antibodies to approximately of 17% of the population). And it just so happens that he has antibodies
against the three of us potential donors, making us unsuitable donors due to
risk of rejection. So right now, we do not have a match for Zach
but we are optimistic that we’ll find one.
In the meantime we are researching alternatives, such as the kidney
exchange program, in the event that a matched donor is not found.
Zach and I believe it’s important for our friends and family
to know that although Zach officially needs a kidney transplant, the outlook is
very positive and success rates are really good in patients who have had kidney
transplants. Nationally, patient
survival 1 year after receiving a deceased donor kidney is 94%, and 99% after
receiving a living donor kidney. Fun facts: Sean Elliott was able to return to
the NBA following a kidney transplant and Sarah Hyland from Modern Family had a
kidney transplant in 2012.
Going forward we plan to share any updates or information on
this CaringBridge site. Thank you in
advance for joining and supporting us on this journey,
Love,
Zach & Tricia
Resources:
https://pkdcure.org/http://www.ustransplant.org/http://www.transplant.nmh.org/http://www.kidneyregistry.org/https://www.kidney.org/transplantation/livingDonors/ 
